14 Oct Dear Followers, Lend Me Your Story!
This time next week I will be speaking at the Rachel M. Flood Ostomy and Wound Care conference titled, Supporting the Patient’s Journey: Living With an Ostomy at Mt. Sinai Hospital, in Toronto. As the title suggests, I will be speaking to a large group of medical professionals about how to work with, support, and teach new ostomy patients how to handle the life changing surgery.
The hospital has graciously asked me to be a keynote speaker because of my ostomy experiences and my ability to speak so candidly about it. However open and honest I am about my ostomy, however, I can, and only, speak from my single experience.
Though my one experience may provide information and guidance for these medical professionals to help future ostomy patients, my story is only a single a single story in a multitude of others. I experienced things during the ostomy process, before and after, that others had not, but I also did not experience the same things that others did.
Faithful ostomy community, this is why I am coming to you- I need help with my keynote speech, and I need it from you.
I feel that in order to paint an accurate picture of a pre and post ostomy surgery patient and how to properly care for them, I need a 360 degree view of the process-something I cannot see without your help.
So, my dear followers, this is what I am requesting from you:
If you could please, through commenting here, on the Facebook page, or by tweeting me @JessGrossman, please tell me your story!
When I say “your story,” what I mean is how were you treated before, during, and after your ostomy surgery. Do you feel like you were given the proper training and counselling prior to ostomy surgery? Did you have access to the right people to talk to? Did the medical professionals scare you into getting an ostomy? Did you understand your ostomy? Was the post surgery training informative and clear? And whatever else you wish to share.
Tell me everything!
By taking the time to give me this information, you are contributing to the information that I will be providing to these medical professionals in order to take better care of future ostomy patients.
I believe that the proper pre and immediate post surgery ostomy care is a key element to positive ostomy attitudes and ultimately positive ostomy awareness.
So ostomy community- what’s your story?
David DucharmePosted at 18:28h, 14 October
I don't know how different my story is from others but it was certainly a unique experience for me. It started back in late fall of 2003 as most colitis cases do, with a bout of diarrhea. I thought little of it at the time since flu and intestinal maladies are fairly common that time of year and I attempted to treat it with Immodium and Pepto, and others. It was sporadic at first and I gave it little mind, until it progressed to bloody diarrhea in December.
However, I still wasn't overly concerned. I was rather busy at work at the time and thought it was something I could just ride out. I happen to be one of those people who doesn't really bother with doctors and hospitals and such unless I'm "really sick". Friends and family though, convinced me to at least see the family physician in case it was a bug of some sort. I went and the doctor prescribed an antibiotic believing I was likely suffering some form of gastroenteritis. Until this time, I was never particularly in any great discomfort other than the inconvenience of never being too far from a washroom.
The antibiotic changed that. One relatively common side effect of such drugs used to target intestinal bugs is intestinal cramping. That side effect turned an inconvenience into considerable pain. Within a few short days I was unable, in fact, unwilling to eat or drink and losing fluids through increased output. A visit to the hospital ER was in order but the docs there thought I was just suffering dehydration and side effects of the antibiotic. Some time with an IV and I was sent home. The pain just got worse and it seemed any attempt to eat or drink just made it worse. I was taken to the ER once again and this time I was admitted.
After a few days with little improvement, it was decided a sigmoid oscopy was in order. After what I considered at the time one of the most painful experiences, the attending doctor informed me I had an acute case of Ulcerative Colitis. They decided at first to try treating it with steroids but a few days of that showing no improvement convinced them that surgery was the only solution. I'll admit at that time, the pain was so fierce I practically begged them to tear the offending organ out of my body. I was also terrified that it might not just be colitis but possibly cancer.
So it was that only a couple weeks after I was admitted I was scheduled for complete colectomy and ileostomy. I spent New Years Eve 2003/4 on the operating table. The surgery was a success, but the ragged condition of my lower intestine as it was removed introduced a post-surgical infection. I developed an abscess near the diaphragm that gave me some trouble breathing and landed me in ICU. It took nearly a month and a half to get over the infection and I spent nearly the entire time in the hospital on TPN (Total Parenteral Nutrition); I got all of my food through a number of IVs. By the time I left the hospital I had dropped from nearly 260 pounds to just over 190, not a diet program I would recommend. I had lost more muscle mass than fat but I still looked gaunt and grey by the time I got home and needed the help of a walker just to make my way down the hall to my bedroom.
My recovery took another month, much of that time spent trying to regain the confidence to eat again. But recover I did and I'm happy to say I haven't had a problem since then. There was concern at first that the colitis might be Crohn's (I'm sure we all go through that fear). I can't say I've regretted the loss of my colon and a little more than I year ago I made the ostomy permanent by opting for proctectomy. Sure, it can be a bit of an inconvenience sometimes when I have an accident with the appliance but I need never worry about incontinence and I am at zero risk of colo-rectal cancer 🙂
I am also thankful that I've been able to help at least my core of friends and family learn that having an ostomy isn't so gross after all. I do sometimes miss the many art of farting though.
John HuthmakerPosted at 18:32h, 14 October
When I was about 21 I started having horrible abdominal pain. I saw a doctor and was diagnosed with IBS. I had explained to the doctors that I had blood in my stool, and it was passed off as an anomoly. So for the next 4 years I continued to be in horrible pain, believing that all I had was IBS. Then at about 25, I went to the hospital because I had no energy. I couldnt even hold my arms above my head. At this point they did a hemaglobin test, and found that I had a hemoglobin level of 2.0. I was immediatley given 4 pints of blood, and they started investigating the cause. It was determined that I had severe Ulcerative Colitis.
For the next 5 years I was in and out of the hospital and on a pharmacies worth of medication. Then one day when I was 31 I had a bowel movement that created a sort of internal pop. I was in excruciating pain, but since that was pretty normal for me I didnt think much of it. The next day I woke up in so much pain that I couldnt move my body at all. My wife called an ambulance and I was rushed to the hospital. After a cat scan I was told that I had a ruptured colon, and a 10% chance of survival.
So that night I had my first surgery to remove my large intestines. Of course I did survive, and spent the next 3 months recovering at home. At the end of that recovery, I had my second surgery to remove my rectum and have a j-pouch formed.
After about 3 months the doctor did a pouchogram and determined that I had a leak and would have to continue to wait. Another 3 months later I got the exact same news. The doctor decided to do a small surgery to repair my j-pouch. Another 3 months later I got the same news that there was still a leak, and would have to continue to wait. Another 3 months later I still had a leak.
At this point I was referred to a specialist at USC medical center. He quickly determined that my j-pouch had to be removed and recreated. So in for another major surgery I went.
3 months later I was yet again given the news that I still had a leak. The doctor decided to do another repair surgery. Again I waited another 3 months and got the final news that I still had a leak, and my pouch was never going to work. At that point the doctor diagnosed me with having Indeterminite Colitis.
So I had my final surgery to remove my j-pouch and give me a permanent ostomy.
LIFE WITH AN OSTOMY
Ever since I had my first surgery I have been living with my ostomy. I would say that it took about 3 months to get used to using the ostomy, but I never accepted that I had one. After about 6 months of living with it, I was comfortable with having it, but I still didnt like it. After about a year I would say that I had completley come to terms with having one. Two years on now, I would say that I dont know I have one anymore. It has become so much a part of my daily life, that its pretty much life as normal.
I'm very happy that I have one now. I no longer live my life in constant pain. I'm able to eat completley normal, and lead a very normal life.
One thing I did forget to mention though is I had a horrible bout of Pyoderma Gangrenosum early on. I tried using an appliance that had convexity. It created a small cut to the right of my stoma. That cut continued to grow until it was about 2 inches in diameter. It was pretty awful. I had to change my appliance daily because it wouldnt stick to the broken skin. And of course it was quite painful in and of itself. When I had my surgery to have my j-pouch reformed by the USC specialist, he moved my stoma to the left side of my abdomen. It took another 3 months for the old stoma site to fully close up. Ever since then I have not had a reoccurence, and have chalked it up to the convex appliance that created the problem. So it was a major lesson learned; never never cause injury to the skin near the stoma.
Well thats my story. Its been a very long 12 years, but Im alive and well. I'm going to have an ostomy until I leave this earth, and I'm perfectly fine with it.
Jearlean TaylorPosted at 18:56h, 14 October
This is my story
Pretty girl blues; was this label I put on myself or allowed others to give me? Why did I allow myself to hide deep in my pain? I hid behind my pretty looks, clothes, and the truth within. My outer beauty always shined, but I was suffering on the inside with low self-esteem, pity, and unhappiness. Could my beauty cover up my hurt? I desperately wanted to be accepted. Yes, I have a darling personality and nobody could take that away, but was it enough to mend the hurt and internal pain? My parent’s sacrificed and cared for all my brothers and sisters, but would they anticipate one of their children developing cancer at the age of two.
We are familiar with several types of cancer, but a baby developing this type (Rhabdomyosarcoma) was unheard of. This was such a rare form of cancer the doctors’ thought I would not live to celebrate my 3rd birthday. How could this be and why? Most importantly how would doctor’s care for me? My care began at the University Maryland Hospital in Baltimore, but my family was later advised to seek a second opinion at Sloan Kettering Cancer Hospital in New York City. The majority of my childhood and adolescent years are spent in New York City. At Sloan Kettering I would have many surgeries, chemotherapy, and radiation treatments. Because of the cancer, reconstructive surgery was not optional. This procedure would cause me to have a colostomy and ileostomy bag to aid my bladder and bowel function for the rest of my life. Even after that surgeries seem to never stop. Imagine growing up wearing two bags, being teased and set aside because you can not tell if it is time to change your bags. “Hey what is that smell”, they would say. I had incidents in school and when I did not know how to handle these situations it really caused my low self-esteem. I had it bad. My hearts desire was to be like other children. To be teased by my peers was heart breaking.
Becoming a teenager and maturing into a young adult were difficult years. I later involved myself in boyfriends, but when they got close I would break it off, fearing they would not understand. I had a method of trying to hide “the secret”. Someone will understand, I thought. It seem like no one did, what a fool I felt like. Continuing to hide behind my family, friends, and pretty looks, I developed the craft of covering and dressing up the outside. This disease causes me to hide deep in my pain. Questions would arise. How would I cope? How would I handle what life have dealt me? Can I continue to hide “the secret”? So I asked myself, “Why do I feel so blue, and how can I change the way I am feeling”
Surely, there was an answer. I could not imagine, but God would change my life. He healed me from cancer. I am His miracle child. He protected and assured me everything was going to be all right. God not only healed my physical body, but my spirit and mind. That is what needed to be healed desperately. I am thankful for that spiritual process which took place within me. My insecurities did not change overnight, but I learned how to be a survivor. The question was not “Why Me”, but “Why Not Me”. This “secret” would no longer be a secret, but a triumphant story.
One of my biggest dreams was to walk that big catwalk as a fashion model. I know my situation is unusual in this modeling industry, but I thank God for opening closed doors. Many people thought it would not happen, considering my minor restrictions. I have won several beauty contest and runway events. With my determination and aspirations, I am now CEO/Founder/Modeling Instructor for J & Company Christian Modeling InChrist.
We teach J & Company modeling students to:
•Never lower your standards to satisfy others
• Everyone is a designer original, stop trying to be someone else
• No one can be successful at being you, but you!
• Remember every one have different gifts and talents
• Learn to stay in your lane and strengthen your talents everyone can not do it all!
• Find the positive in every situation, regardless of what you perceive it to be.
• Do not allow others to feed you negativity.
• REMEMBER you are somebody!
•You can achieve if you believe in yourself
• Anything worth having does not come without a fight
• Always believe in yourself
A Christian model with style and class can present anything stylish on the runway and in their daily living every time they wear a garment because their head is up high and they know they are a designer original. We have class, style, and a spirit that exhibit good taste on and off the runway. To see the outer beauty you could never tell I live with these adversities. After all I have gone through, who would have thought becoming a fashion model, inspirational writer, motivational speaker, and owner of a Christian based modeling company was in the plans for me. This story may seem personal, but because of my adversities in life I will continue to reach out, encourage, uplift, listen, understand, and help those in need. My faith and trust in God makes all the difference. I am thankful for my family, friends, and most of all angels that watches over me. Today, at 43 years old I am blessed with a wonderful husband of 15 years that appreciates, understands, and accepts me for me. I will continue to have one-colostomy bag and the use of a self-catheter for the rest of my life. I am very thankful for this journey. I am a Fashion Model, WOW; sometimes I can not believe it. As I look back over my life I would not change anything. My light will continue to shine so others can witness and know they can overcome obstacles. Do not be ashamed or afraid to tell your story because you never know how “blue” someone may feel. I can and will live a full and vibrant life.
I give special recognition to my Pastor, friend, and mentor; Pastor Therm M James Sr.
Written by: Jearlean Taylor Copyright ©2002
Angela P.Posted at 20:18h, 14 October
I have Crohn's Disease. I have had two temporary ileostomies and, with rectal disease involvement… the time until I have a permanent one is limited.
I had a colon resection, my first surgery, and went to recovery. Because I'd been so sick so long and was very weak (95 lbs), I was in what was called step-down – between ICU and the wards- for more complete monitoring. After three days, they let me start eating again, a liquid diet. Two days later they said my heart rate had tripled and my white blood count quadrupled overnight, and sent me to CT. When I got back from that, my surgeon was in my room waiting and said, "There's a leak, your abdomen is filling with fluid, you'll be in the OR in twenty minutes, and you'll wake up with a bag. Or you'll die." Welcome to my prep for an ostomy.
There wasn't even time for a WOC nurse to come consult on good placement. Then again, I was so skinny that if the doc didn't want it overlapping the center-line incision or falling off my side, there really wasn't much choice about where to put it. But afterward, I never saw a WOC nurse either. My hospital only used flat wafer 2-piece bags. I learned about how to care for it thru watching the nurses and nurse aides as they emptied and changed it. I had frequent leaks so at least I got to see them coping with that a lot and learn. I ended up in hospital and rehab for over a month (too weak to walk or even sit up alone at first) so in order to be allowed to go home, I started asking questions and trying to do things for myself. They gladly gave me the supplies and left me to it.
When I got home, I immediately turned to my online IBD support group! There's a sub-group in there called Dear Baggys and I immediately let them know what had happened to me. The support was amazing. I had members sending me samples of their own bag setups to try, samples of the various things they used for adhesive removal, skin protection, better seals, etc. It still took over three months to find a setup that worked for me, but I suspect if I hadn't had the Baggys, I might never have found such a good working solution. I also got the advice to call the manufacturers, that they had WOC nurses available to talk to about problems and that they send free samples to try. So that helped also, altho I was limited as my insurance only provided for one particular brand. Eight months later, that ostomy was reversed and I went back to being a normal Crohnie sickie.
Three years later, I had a sub-total colectomy with temporary ileostomy. Won't go into why in detail, had to do with getting off healing-interfering meds like Prednisone, to prevent another internal leak. This time, I didn't see a WOC nurse before-hand, altho I did talk to surgeon prior to surgery as it was a bit more planned, and knew I'd have an ostomy again. But doc was using the same site as previous ostomy anyway.
Surprise! I did get a WOC nurse afterward! And altho I was experienced, I knew this one was different. I wasn't as skinny, I had a new stoma with different shape, etc. She really helped me get a decent setup quickly… much faster than I'd managed on my own despite Baggys help. And even after I left the hospital I could call her with questions and for help.
I only had that temp for three months. And I expect that next time, it won't be temporary. But that's ok. Now that I've gone through some temps, I know what to expect and what life will be like. And I know some people from Baggys who also were given what were supposed to be temps that they ended up keeping and refusing to let their docs reverse. I almost did that the first time, because after over a year of getting sicker and weaker, suddenly I could eat again, and wasn't afraid to leave the house!
So I'd have to say that overall, having a WOC nurse available immediately after and beyond, is the biggest aid. The poor nurse assistants on the wards weren't really trained on more than how to empty and how to cut a new hole and slap a new wafer on. They weren't able to teach me. The WOC nurse had a ton of tips, shortcuts, tricks, and access to newer products and methods. And she was able to help me faster than my Baggys, altho God Bless Them for being there when I needed them!
Erica TefftPosted at 20:43h, 14 October
This is my story:
I was diagnosed with Crohn's Disease when I was 7 years old and have had many different treatments throughout my life. My treatment started with prednisone and 6MP (mercaptopruine) for many years, this gradually moved up to a Remicade treatment for 4 years until I became immune to it and started have allergic reactions to it. At this point I was treated with my first small bowl resection, which then kept me "Crohn's Disease free" for the next 4.5 years until I was 21 years old. Before my 21st birthday however, I was diagnosed with Burkitts Lymphoma at the same location as my first resection site where my Crohn's was concentrated. my doctors believed that this was due to my Remicade treatment. After my lymphoma was treated successfully, my treatment options were limited because doctors didn't to risk putting me on another treatment similar to Remicade (like Humira).
During last summer, I began to get fevers, but thought nothing of them because I didn't have the "typical" Crohn's symptoms like cramping, lack of appetite, increased bowel movements, etc, so I brushed if off as if it was nothing. This quickly progressed to hospitalizations for high fever, intense abdominal cramping and bloody stools. I was admitted to the hospital at the beginning of July and remained there in limbo while the doctors decided what to do with me for 4 weeks. My parents and I ended up making the decision to move to another hospital and doctor where treatment would be more effective. I truly believe that if I hadn't gone over to another doctor, I would have bled to death waiting for people to make a decision about me. When I got my ostomy, it was the last option to keep me alive. I was already used to the idea of living with an ostomy because my dad, who also has Crohn's Disease, has an ostomy and has successfully lived with it for over 30 years.
My recovery was difficult because of how long I had been in the hospital without eating, but once I began getting better learning to live with my ostomy wasn't too bad. Having my dads support and understanding made things much easier for me and I don't think I would have been able to deal with this change if it wasn't for him. I had some problems adjusting and learning how to wear my normal clothes again and I am constantly struggling with body image issues. Even though people tell me they can't tell I have an ostomy, I know its there and always feel as if everyone stares at it as soon as I walk into the room. While I know this isn't true, it has been one of the hardest obstacles for me to overcome and one that I'm still working on. I wish that I had some more guidance with picking an appliance that was ideal for me. I found one, but didn't really get help from the ostomy nurse that worked with my after my surgery. While she was nice and had been doing it for a long time, I feel like she didn't understand how having an ostomy was going to affect the body image of a 21 year old female. She didn't really get the whole low rise jean thing, and couldn't really help me pick an appliance that was the best for my clothing type. I feel like hospitals need nurses that are more current and used to working with younger people instead of an older crowd.
My only wish with my ostomy, was that I had done it sooner. I could have saved myself a lot of pain and suffering. It was almost as if my doctors were afraid to mention getting one since the never did until I was almost dead.
Lynne HengeholdPosted at 21:24h, 14 October
My surgery was an emergency I had a ruptured colon.I had a previous colon resection because of diverticulitis. They did the colostomy right away and left my abdominal incision open for the infection to drain. When I was sent home after a week I had visiting nurses come everyday at first for wound care and the ostomy. I could not have figured out how to take care of the ostomy without them. As I got more comfortable and learned how to apply my bags they came less but any time I needed them they came right away. I also got a lot of help from the ostomy mail order suppliers. They would mail me samples of anything I wanted to try for free and they also send you a starter kit with mirror,scissors,case, and a lot of supplies. They had nurses available to help me and answer questions. Getting the right fit and appliances does take time to figure out what works best for each person. I have had my ostomy reversed and am doing really good. I have had to have quite a few surgeries for incisional hernias and 1 more to go just not ready yet. I have had a total of 8 hernias I do not understand why. I am just thankful to be alive and happy.
Doug DowningPosted at 23:20h, 14 October
Good morning Jess. This feels a bit like what I imagine AA to be; "I am an ostomy patient and here's my story." lol…
I have to say that 2.5 years ago I would have challenged you if you would have said I'd be able to see humour and joke about this but here we are. Your story and those of the uncover group have been greatly beneficial in getting to this point. When I get the "poor you" look I usually say, "ah but think about it, I never have to sit on another public toilet." The silver lining in the grey cloud.
So to my story, it may be a bit different from others because it was sudden, without warning. Nearly three years ago I was a relatively healthy 57 year old man. Only stomach/intestinal issue had been a gall bladder removed 3-4 years earlier. Late in 2008, around mid November I started getting some bad stomach aches. As most guys would I chalked it up to stress and too much coffee. It continued for a few weeks to the point where even I thought "time for a Doctor". Tried the clinic and got a hmmm not sure could be diverticulitis, no previous signs, no family intestinal issues but ok now what? You should see your own GP and get referred to a GI specialist. We're in early DEcember now. Go to see my GP, he's away so see his locum who books me with a GI specialist for late January. Now physically I am deteriorating, more pain, stomach, back, less and less bowel movement, reduced food intake.
The month progresses and I am just dying every day, can't sleep without sitting in a hot bath to relieve the pain, have developed a hemeroid the size of a small state and live on extra strength tylenol. I make it to Christmas barely but by Boxing Day I have my GF take me to emergency. I get admitted, the GI Dr. sees me the next day, scratches his head, sets me up for some cat scan, xrays and a colonoscopy, which we do without a nurse and awake because everyone was away for the holidays. lol. Btw, pushing a scope past a hemeroid without drugs should never be tried. Ouch!!! Not a lot of results from all the tests so after five days I'm sent home with a plan to do more testing in a few weeks. I continue to degrade.
Three weeks later, I've had it. I have dropped about 30 pounds, I am in constant pain and nothing is going through me. After a really bad night I called my girlfriend told her I was calling an ambulance and going back in, She headed over and got there as the ambulance arrived, ( we had been told that if we had to go back to use an ambulance because you bypass the line-up). So I was readmitted Jan 21st.
Lots of tests, iv's, questions. Pain meds helped but the normal drugs, steroids etc weren't helping. Another colonoscopy showed some ulceration now. The steroids were boosted, the took me off all food and put in a picc line because by now I had lost nearly 75 pounds. The GI Dr was at a loss to figure it out so at the two week point thought a round of remicade might be the solution. This without a firm diagnosis. My GF and son did some reading on the drug and came back with great fear for the side affects, especially since it was a guess as to what they were trying to treat, The colon was getting worse. Now I was living on morphine so without Trish (my gf) there everyday, through every drs consult, researching and asking questions, I don't know what I would have done. She saved me! We pushed back on the recicade plan and he rethought it over night, came it the next day to say "you're right" that he was going to get second opinions and we restarted the diagnostics. More scans, scopes and tests. Intestine continued to degrade and by the third week the dr and the surgeon came in to say they had to open me up and remove part of my large intestine, no other choice.
I have blanked a lot of that time out, I remember being scared but I just wanted the pain to end. I was drugged 24/7 so not really understanding what it all meant. But things happen fast and next I knew, I was in post op, a hole in my stomach, 29 staples below my navel and my world had changed. The nurses were great at explaining what was going on, the drs were happy with their job. They had removed the ulcerated, infected portion but still were sure what I had. The pathology wasn't clear but everyone leaded towards Ischemic colitis but why or certanty wasn't offered.
Three days after surgery I was sent home, I received 20-30 minutes of instruction from the ostomy care nurse (who was great) and told that home nursing would be by to help me. was a scary time, I looked like I'd just gotten out of a concentration camp, I was too weak to walk, depressed, in pain from the surgery and didn't know what to expect. I didn't want to touch the system, change the flange, I would change the bag as soon as there was even a pelet in it. I became totally dependent on Trish as she would change it etc. That went on for weeks before she finally kicked my butt and made me see I needed to get moving with my life and manage it myself. It at times seems like something alien, very hard to wrap my head around what had happened. Needless to say I was off work for a while. During recovery I got engaged to Trish, ring, hotel, dinner, rose petals a good surprise. Anyone who hangs in through all the crap (no pun intended) I put her through must truly love me.
So recover physically and mentally was slow. Always aware of the protrusion, first no clothes fit due to weight loss then jus finding a way to dress without the system sticking out. Because of it's placement shirts couldn't tuck in. For a guy used to shirts and ties that was a big change. Unless I wanted to have my pants at my chest they need to sit under the flange. So I'm now an old guy who likes low rise pants. ;-)))
I continued to have abdominal pains but was told by my GI dr they'd pass. Tylentol was first choice. GI dr constant pushed me to get active, put on weight get back to work be normal, just discounted any ongoing pain.
Trish and I moved in that summer, two appartments into one. A lot of boxes. That fall got rescoped as GI thought we should talk about reconnecting the next year. By that time I was having lots of pain, trying different diets, naturopath, internet etc. Across your uncoverostomy site which helped me mentally, hearing the other stories and seeing how everyone copes. So thank you for that.
Anyway to try and get through this saga I'll continue. 2010, the pain became unbearable. I had gone back to work in June 2009, 3+ months after surgery. I was warned by many, including Trish, it was too soon but why start listening at this age. So spring a year later I break, my surgery site has herniated, (no one said that as high as 50% of ostomy patients end up with hernias) and I'm in pain taking tylenol xtra-strength 4 at a time. GI wants to fix hernia and reconnect but the pain isn't at the hernia site. We agree to disagree. I say there's no way I'll reconnect without knowing better what I had, what caused it and why I still hurt. Seems Drs don't like you to push back. More testing, genetic blood tests in a lab in California show no colitis or crohns markers. Biopsys show no cancer. Pain radiates from lower right across abdomen. By the summer of 2010 I am fed up and start looking for a new GI, second opinion. First my surgeon refers me to a colo-rectal specialist, his respose is – you should have the hernia fixed, as far as the bag that's considered cosmetic surgery (since it's working) so it's up to me.
Still not satisfied I look for a new GI and find one but after a couple of cancelled appointments don't get in to see him until early 2011. A new round of tests are slated. Still living with daily pain but feeling good about the new GI. Then my intestinal functions start to act up. In March 2011 I go from relatively normal bowel functions to complete liquid. I tried new brands of colostomy bags now seeing a nursing group that run a company called Ostomy Care, they are great helping me find the best s
ystem for me. I was scheduled for a colonoscopy followed a month later with an endoscopy in the summer of 2011.
The colonoscopy goes as planned, my GI says no signs of anything all looks good, off I go home. A week later the dreaded Drs office phone call, "the doctor needs to see you." So I plan my funeral and wait for the appointment. 🙂 When I go in this time I (like all men) have only visions of the worst news possible. The Dr surprises me, the biopsies are back, you have a relatively rare for of colitis, collageneous colitis (also known as microscopic colitis)" weèll try a 3 month bout of entocort (a steroid). I asked if this was the cause of my original problem but no there is no known relationship. I am just lucky enough to have had two different forms of colitis. If I buy lottery tickets these days itès to support a cause, don't think my luck runs to winning. haha.
When my flange changes go from weekly to two or three times a day and my skin gets raw, iches like H, splits and bleeds. First relief I found for that was accidental. Trish was given fucidin cream for an infected bug bite and her dr said keep it around as itès great mediicine for all types of skin issues. I tried it and after 3 applications over a week I finanly felt better. I now swear itès a miracle drug. 6 months of skin that at times I wanted to tear off to a solution found by accident.
Well the three months went by, the steroid seemed to help a lot, getting me back to 75-80% of where I was so I was weaned and it started to come back. I am now on a 1 year steroid plan in hopes that this will work. I am now trying to arrange to have surgery to fix the hernia but I will keep the bag, weève become very attached (oh that was bad). The pain is managed today with tramacet. The side affects of the steroids suck but the options are worse.
That's the story so far, this past summer was the first time I swam since surgery. I am more comfortable with the olostomy system now I know what I have. I am absolutely certain that I made the right call in not reconnecting yet. As Trish says we need a couple of years pain and issue free to assess the situation then decide whetehr too reconnect. That option is still there for me. The drs idea of "lets reconnect and see" is crazy. You feel like it's an episode of House and everyone keeps guessing at what you have. My advice, be involved, me your own advocate, don't be rushed or bullied into a decision. If you can always have someone who cares about you there when you talk to Drs, sometimes you don't hear anything past the first few lines.
Over this past couple of years I've seen others like my sister fight cancer, like Trish loose a parent, others have lost spouses and children. I think me living with a bit of new plumbing, and some plastic stuck to my belly is manageable. I know others have it worse I don't make light of that, many have fought long painful battles with disease and multiple operations. You have my deepest sympathy and understanding. For me to remain positive I have to look at the good things, like no sitting in filthy public restrooms. I have an 8 year old nephew who fough this battle from the time he was one . He had an ileostomy two weeks after I did and has bounced back incredibly. He considers me his "bag buddy".
I have referred my new GI dr to the uncover ostomy site so he can share it with his other patients, he was very pleased and happy to have it to share. I became a fan of the site and then of you Jess for your perseverance, drive and optomism. You inspire and have so much to offer, thank you and good luck in all your endevours. I'll keep following you here and on Facebook and continue to "push" the site.
Remember to laugh, I do each time my stoma "farts" 'cause I get to smile and say, sorry I have a condition. :-)))))
RoisinPosted at 00:11h, 15 October
Hello, i'm a 19 year old female; I've only recently joined the world of ostomates! But I shall share my story anyway, I hope it helps. Like many others, I first presented with severe stomach cramps, to which my GP told me I had IBS, I was treated for this 'IBS' for two years, and in this time I still had these severe stomach cramps, I had blood in my stool, I was constantly tired, I was rapidly losing weight, I was extremely pale, my inflammatory markers were coming back at over 400 (they're meant to be around 20), my periods had stopped and I was extremely unwell. I visited the doctors a total of 45 times in these two years, telling them that these peppermint tablets and anti depressants were making no difference to my pain! It wasn't until I had reached a dangerous 7 stone 3, and went to my GP in floods of tears, demanding that she do something, that something was finally done. I was referred to a gastrointerologist(spelling?) who told me within about 2 minutes that he was certain it was crohns. I left feeling excited that there was finally a reason behind all this pain! He put me on prednislone, but after a week I was still in a huge amount of pain, so he decided to take me in as an in patient. I was in hospital for 10 days, being given antibiotics and steroids through an IV. They also gave me a ct scan which showed a large abscess on my small intestine. I was discharged after 10 days and given more oral steroids to take. After being home for 5 days I developed a stomach ache and at around 2.30 in the morning I was in such agony that I had to scream for my mum to come downstairs. She took one look at my and called an ambulance which took me straight to a&e. It turns out my bowel had ruptured and the abscess had burst. I was given emergency surgery, and woke up with this new thing popping out of my stomach and a foot long scar going up my tummy! It was extremely overwhelming to say the least! However, I now feel 100 times better than I've ever felt before, despite my wound getting infected and re-opening and then getting the flu and a stomach bug! My stoma is called Sally and I love her to pieces, even when she decides to fart extremely loud in the lecture hall at uni! I just look with disgust at the person sitting next to me! Poor sod! haha
KarltonPosted at 02:49h, 15 October
I think doctors need to bring up colostomies when they first think they are needed, and not wait until a patient is dying of Crohn's Disease. By the time I had my colostomy I had suffered for years and was to the point I could barely get through the surgery. Doctors need to be candid about colostomies when they are needed. I don't think a colostomy should be so far down the list that the patient is dying before considering a colostomy. I wish I'd had mine years earlier instead of going through numerous medications that made me sicker before having the colostomy.
I think nurses and general practice doctors need much more education about colostomies, ostomates should not have to go online to learn how to deal with their ostomies, and too many are doing that. I realize nurses and doctors can't know everything about every disease, but my brother (a practicing nurse) should not have to call me for info about ostomies. I'm happy to help, but it goes to show how much more training and info is needed in the medical community about ostomies. I understand ostomies have been happening for a long time, yet I almost feel like I have some unknown or little known disease. More info all around, that is my suggestion.
GaylePosted at 08:47h, 15 October
My 9 year old daughter's story is a bit different in that she's had an A.C.E. Procedure (Antegarde Continence Enema) to allow us to flush her bowel every day. A couple of years ago I took her to the G.P. as she always had diarrhoea and for as long as I remember she had never been 'solid'. All my G.P. said was, 'it's better to be that way than constipated'. Over the next year she got worse and involuntary soiling was a big issue so we went to see another G.P. who sent us to the Paediatricians for tests. Straight away he said she had chronic constipation and the soiling was the 'overflow'. An x-ray showed how bad the situation was and he said he'd never seen it that bad in a child so young, especially as she was well in herself. We were referred to a Paediatric hospital in England for further investigations. One of the tests was a Colonic Transition Test – she had to swallow a capsule every day for 6 days and on the 7th an x-ray would be taken. Each capsule contains 10 radio opaque markers which show up as dots on the x-ray. A normal bowel should have 10-15 markers on the 7th day. My daughter had 56 still inside. Biopsies and camera investigations didn't show anything obscure and nerve endings in the rectum were normal. The problem was that her bowel had lost its' 'spasm'. We tried various medication which made a bit of a difference, but not a great deal. A last resort was the A.C.E. Procedure which uses the appendix as a stoma. A catheter is inserted into the stoma everyday to allow 50ml of enema fluid to be inserted into the bowel, behind the blockage, which is followed by 500ml of saline, thus resulting in a 'bowel washout'. When the stoma has healed, 6-8 weeks after the operation, a Mic-key button can be inserted into the stoma to make wahsouts easier by connecting a tube and a bag. She'll probably have this procedure for life as there is no chance of her bowel getting its' 'spasm' back but she copes remarkably well. Living on a small Island with a population of 80,000, there are 3 children on the Island who have had this operation done. I find it really hard to find out any information and the district nurse always contacts the hospital in England for advice which can take a couple of days. I find that the Drs won't touch her – a couple of times I've had to contact them when her mic-key got blocked or her stoma got infected and was told to contact the hospital who did the operation. It's down to great websites and talking to other 'ostomates' that I've managed to find out information and for that I am so grateful!
RonaldoPosted at 13:36h, 15 October
This is a sharing from me who had UC. I am from the Philippines. Hello Jessica, just copy and paste.
sorry i do not know the html codes
Jason goyettePosted at 02:16h, 16 October
Well Hi, I'm a 22 year old male and ever since I was 6 I had problems from bloody diarrhea, stomach pain, and extreme weight loss. I lived in maine at the time and went to many doctors and they always said it was hemorrhoids. About 7 years after I moved to florida and years of being picked on because I was so skinny, I found out what was wrong with me, it was severe Ulceritive Colitis. I was diagnosed at the age of 16 I was about 115 pounds then, 2 years later I was down to 83 pounds at the age of 18 and 19 It was so bad I was unable to finish High school, I had so many plans I was a great student I just wasn't to my full potential because of the constant going to the bathroom and stomach pain I was shy. After 6 years of me having a pharmacy in my room and My mother being to scared of going in my room for fear that I might be dead. I decided to have a ileostomy, my home health care nurses said that I would be a inspiration to others because I am so comfortable and happy with my surgery. I am doing well now and I am happy with my life and I won't let this stop me from anything if I have a accident I say to my self yup this is me and this is what I deal with If god didn't think I could handle this then he wouldn't have givin this to me. My ostomy information was great and I new everything about the surgery, My surgeon wanted me to stay longer at my first office visit to explain about the surgery because it usually takes longer but I read everything on the surgeries for Ulceritive Colitis. Thankyou for allowing me to share my story. And Jessica you are the greatest thank you for your dedication.
HollyPosted at 05:05h, 16 October
My journey started with chronic crohns disease at the age of fourteen. I spent six years back and forth to the doctor taking more and more medication. Finally when I was twenty the doctor said I had to have the surgery since my large intestine was such a mess. I accepted my ostomy right away because I knew it was saving my life. There have been times that I wished I didn't have to deal with it like in the middle of the night but I know I wouldn't be alive without it. I don't have a problem with sharing the fact that I have an ostomy with people since it is just another part of me. Most people are surprised to hear that I have one and say they would have never guessed. I have now had my ostomy for 23 years.
Kristie McDonaldPosted at 15:47h, 16 October
Well, I've had to have ostomy surgery twice, since I'm quite an idiot and got it reversed as soon as I humanly could, so I'll do a short recount of both.
My first one, nobody prepared me for, it was an emergency decision. It was essentially "do this or wither away" and I really didn't want to do that. I had had minor surgery before, so I was prepared for the prep and the room and whatnot, but nobody ever discussed with me how this surgery would change everything. My first surgery, at 16, all I knew was I wouldn't feel sick anymore, nobody warned me of the leaking and the pain and the possible kidney stones to follow. (Though that was my fault, didn't hydrate myself)
The second one was way better. I knew all the right stuff, had all the connections I needed and honestly knew more then my surgeon, though he was eager to learn. All in all, the doctors didn't really teach me anything, the only reason I'm as comfortable with it as I am is because I had a trial and error process when I was young and know I know just what to do.
KATE MURRAYPosted at 03:48h, 17 October
This is my story – I hope it helps educate the doctors and nurses of tomorrow. When I was 16yrs old (I am now 31) I developed crippling pain in my abdominal area – a particular pain that no matter what I did I was unable rid myself of. My parents did the usual rounds of Doctors’, however; most thought it was a mild case of simple IBS brought on by the stress of being a high school student. If only my GP's knew how wrong they were…
Two years later, at around 18yrs of age and still no concrete answers to my unbearable pain, my mother, a Registered Nurse, insisted I consult with both a Colo-rectal Surgeon and a Gastroenterologist and after a multitude of tests which included an endoscopy and colonoscopy, colon transit studies, CT scans, MRI's, multiple blood tests and barium x-rays, I was eventually diagnosed with a Full Thickness Rectal Prolapse – a rare condition in somebody of my age, so rare that my Surgeon had never seen it in a teenager in his 40yr career. What followed over the next 12-15yrs was a nightmare and in a few short months, my world had turned upside down. At 19yrs I had my first bowel surgery – a Laparoscopic High Anterior Re-section and permanent Mesh Repair. I was terrified, but my Surgeon was confident that he would be able to fix the problem permanently given that I was otherwise young and healthy.
Although I recovered well, I was still battling constant pain and urgency to use the bathroom up to 15 times or more a day. The only relief from the pain seemed to come by opening my bowels several times a day. To help with the frequency, my Surgeon whom I saw every 3-6 months prescribed Loperomide and Colofac which did very little to alleviate the problem.
Because I was going to the bathroom so frequently, I re-lapsed and again developed a prolapse and at age 22yrs I had my second Colo-rectal surgery – a Delorme procedure, again designed to hitch the bowel up and keep it in place. Unfortunately, this type of surgery causes difficulties with the bladder and I developed complications and required re-catheterisation spending a week in hospital. During my recovery time and over the months that followed, I began seeing specialist dietitians and physiotherapists to try and help with controlling pain and urgency. I also started working with a second Colo-Rectal Surgeon, at the insistence of my primary Surgeon in the hope that two heads would be better than one and together they might be able to solve this complicated problem.
This proved to be futile and unfortunately I once again re-lapsed and found myself back in the operating theatre at age 25yrs just after I got engaged to my now husband. My third bowel operation was a Laparoscopic Mesh Rectopexy, this time using a dissolvable mesh designed to lessen the effects of scar tissue. It was at this time that I began to notice a trend after each surgery – the more I was operated on, the more problems seemed to arise, the weaker I would become and the more difficult it was to maintain a healthy weight. To assist with pain control, I was prescribed Panadeine Forte or Codeine, which I initially used as pain relief, but also found it beneficial in controlling my bowels as one of its side effects is constipation.
Over the next few years I found myself getting worse – the pain so unbearable that I was now using a dangerous cocktail of painkillers like Tramadol, Digesic and Panadeine Forte on a regular basis just to get through each day. Additionally, my frequency was getting worse – I was now unable to eat a full meal without dashing to the nearest bathroom, I would bleed after every bowel motion which gave me a mild case of anemia and I was unable to get a full night sleep because I would be on the toilet all night. Simple tasks like going to work, travelling, shopping with my girlfriends, going to the movies or meeting friends for dinner were now so difficult for me and my quality of life suffered severely. I had become a slave to my condition and I would often cry myself to sleep if not from the pain, then from pondering the things that I was missing out on. This condition had robbed me of the right to a normal existence including my education, something I wanted and craved so desperately. Like most other young adults, I had dreams of attending University and it was difficult watching my friends and my siblings succeeding in their chosen fields and enjoying College life – something that was just not possible for me because I was simply too sick. I did manage a Diploma of Hospitality and Business Management, although I graduated 6 months after my peers as it was disrupted by one of my many surgeries. It was not long after that I was successful in securing a job with Australia’s newest airline at the time, Virgin Blue, whom I have been working with for 10yrs now.
I never really spoke publically or candidly about my illness either, as it was often too painful to express and it seemed easier to conceal the truth and pretend that nothing was really wrong. On the outside, to most people who knew me, I appeared to be a strong individual, but little did they know that I was broken and hurting so much inside. I found that the only way to accomplish anything was to dose myself on painkillers, an extremely dangerous habit, but it was the only way I was able to do anything ‘normal’.
I had now been living with debilitating pain for about 10yrs. Every 3-6 months I would see my specialist in the hope that he could do something, but quite frankly he was running out of ideas. In 2009 at the age of 29yrs I was sent off for the same routine tests that I would endure before each operation, but this time, the Surgeon (a new one due to my original doctor taking retirement) ordered a specialised test known as a Defecogram. The results baffled him. Not only had I developed another prolapse, but this time I had also developed a pelvic floor drop – again unusual for somebody my age or someone who has not yet had any children. Here we go again, I thought – yet another operation and another week in hospital connected to a bunch of IV’s and machines.
At the age of 30, I endured my fourth major bowel operation – a Laparoscopic Ventral Mesh Rectopexy using a dissolvable mesh to once again mend the prolapse, and a procedure known as colposacrosuspension designed to fix the pelvic floor drop. The recovery was long and difficult as I struggled with food intake, loss of appetite and weight loss and still the pain had not resolved.
It became clear very quickly that I was getting worse not better and over the next 12 months, I underwent another series of the same tests – colon transit studies, perineal nerve studies, and another routine defecogram which not only revealed a significantly diminished holding capacity (one should be able to hold about 250ml in their rectum and I could only manage a mere 30ml) but most significantly the beginnings of an intussusception – yet another prolapse. I was devastated – I knew this meant another operation, but there was little my Surgeon was able to offer me. We had tried EVERYTHING – conventional and unconventional and still we had achieved very little. The only thing left to attempt was a temporary Loop Ileostomy – I was told it was a bag or I would most certainly not survive beyond age 40 and for me the reality was that I would probably die without this surgery.
To say I was terrified of the unknown is an understatement and I cried for weeks leading up to the surgery as I grappled with the concept of having a stoma and a bag attached to my abdomen collecting my waste. But knowing I could die without it was enough to convince me and I courageously took the plunge and just 12 weeks ago, I made the difficult and agonizing decision to undergo Ostomy surgery after 15yrs of pain and suffering. It was performed laparoscopically by a fantastic and well respected Colo-rectal Surgeon and I spent about 8 days in hospital learning how to manage my Ostomy with the help of the wonderful Stoma Therapy Nurses. They taught me everything from
how to empty and change my bag, specific dietary requirements, how to manage and recognize a leak, how to care for my stoma and my favourite, how to thicken the output – using marshmallows!
To this day, my doctors are unable to explain why I kept developing prolapsed organs, a possible reason is that my body has surprisingly very few adhesions and has an inability to create internal scar tissue. Given the number of complex procedures I have endured, I am lucky to have only about 10 small scars across my abdomen which I call my battle scars! I don’t know why I did, but I kept most of my hospital ID bracelets and you can’t even count them on two hands, there are just so many of them!
I can’t say that I am thrilled about the idea of living with an ileostomy, but what I can say is that I am finally on the road to recovery – in a few words it has saved my life and given me my independence back. I still experience times where I feel very angry about my situation and think ‘Why Me?’ – especially when you consider that there are only about 50,000 ‘Ostomates’ currently in Australia and it is difficult being so young and having to deal with a bag at just 31yrs old. Like anybody who has undergone Ostomy surgery, I have days where I can accept my new circumstances and truly embrace it and other days where I just get frustrated and don’t want to deal with it anymore particularly when contemplating issues like body image. As I write this, I am actually on holiday in Canada, my first trip as an ‘Ostomate’, and I can’t really say it has been an easy ride as I have had to deal with bag leakages and skin irritation problems, but in saying that, it has been a whole lot easier than it used to be as I no longer have to worry about finding a bathroom every 30 minutes or just not eating at all to avoid the pain afterwards. As a new ‘Ostomate’, it is inevitable that I will encounter a number of ‘firsts’ over the next few months as I prepare to return to my normal schedule after almost 3 months off. Some of these I have already experienced, but some I have yet to accomplish like resuming full time work and regular group fitness classes at my local gym – these will probably be my greatest challenges as I learn how to manage life with a stoma under different conditions and in different environments.
What I can say is that it has been a huge adjustment going from being the ‘sick’ person to the ‘well’ person in such a short space of time, and it’s not until now that I have finally realized just how sick I was. To be pain-free for the first time in over a decade is a truly special feeling – there really is nothing like it and there are no words to describe the euphoria I feel. I can also confidently say that I am a much stronger person because of my experiences and having an Ostomy has finally give me the freedom to do the things I never dreamt possible, like climbing Mt Edith Cavell in the Canadian Rockies, which I did a few days ago! Sometimes it feels a bit surreal and difficult to comprehend, and it often feels like I have to catch up to my peers on ‘Fast Forward’ for all the time I have lost being sick. Having said that, now that I am finally getting better, I have applied to several Colleges and Universities to hopefully commence study at the beginning of 2012 toward a Bachelor Degree in Nursing – something I never thought would ever happen. I hope to be able to use my own experiences and apply them in the medical field, eventually in the area of Stoma Therapy or Colo-rectal Nursing. When you spend so much time surrounded by hospital walls, you gain an appreciation for the Nursing role and the integral part they play in patient care. I firmly believe that if you can make a difference to just one person, then you have served your purpose in life – I hope I can one day be that person who makes a difference.
I am very lucky to be surrounded by an amazing family, a wonderful and supportive husband and some pretty extraordinary friends who have supported me throughout this entire ordeal. Without them, I probably would not be here today. Additionally, with the help of social networking sites like Facebook, I have been fortunate enough to connect with other young ‘Ostomates’ around the world, women like Jessica Grossman, ambassador for ‘Uncover Ostomy’ and Nadia Fuad Deane from ‘The United Colon VLOG’ and ‘Ostomy Secrets’, both of whom have given a voice to those of us still coming to terms with our new circumstances. Together, these young ladies have provided inspiration and are working very hard to bury the stigma of living with an Ostomy.
I know at some point, perhaps in a couple of years, I may have to face the grueling decision to make this permanent and at present I am not quite ready to deal with that, so in the meantime, I am going to continue living my life, experience new and exciting things and most importantly, enjoy being pain-free for the first time in 15yrs. I don’t think I will ever understand why I got sick or why this had to happen to me, but what I do know is this – Life is a precious gift, don’t take it for granted, because you don’t know how lucky you are to have something until it is taken from you. I’d like to conclude with a quote which I find quite humbling and I believe it adequately sums up how I feel at this point in time – “Nobody can go back and start a new beginning, but anyone can start today and make a new ending' – Maria Robinson
By Kate Murray
P.S. Hey Jess, coincidently, I am actually travelling through Canada at the moment and will be in Toronto on the 21st – I am going to e-mail the hospital and see if i could attend the seminar as i think it would be of benefit to me….not sure if they will let me in though – i am not a nursing student, not yet anyways !! xoxo
WendyPosted at 17:06h, 18 October
Emotional Training is just as important as Physical Training for an Ostimate. This is my Ostomy Journey!
Other than having Crohns disease for 30 years I am a very active and fit 43 year old wife and mother of 3 teenagers. In the summer of 2010 I went to the hospital with a blockage and came home with an ostomy.
I cannot speak highly enough of the surgeon, nurses and hospital. They all did their jobs extremely well as far as preparing me physically to care for and manage my ostomy. About 4 weeks into my physical recovery I experienced a HUGE EMOTIONAL obstacle. No one had prepared me for the overwhelming body image issues I would encounter on this journey. Emotionally, I am a very strong person and not a person who is vain or preoccupied with my looks. I have always had a very good self body image and could look nice with little effort. Once reality set in I became a very self conscious person. I felt everyone was looking at me differently and it didn't matter how many times my husband told me I was beautiful.
So patients need to be counseled and prepared for the emotional impact an ostomy may have on their lives. One of the ET nurses in the hospital attempted, but failed to make me feel better about my situation by saying "You know Estelle Getty of the Golden Girls had an ostomy". I found no comfort in that statement since Ms. Getty would have been 88 years old if she was alive. I needed to know there were young, vibrant, healthy women with husbands, children and goals to achieve that had ostomies. I wanted to hear stories of women like myself. I finally took my emotional health into my own hands and turned to the internet. That's where I found your site and many others that lifted my spirits and gave me the courage to move on, live life and regain my self confidence.
1. Provide patients with internet resources such as your blog and many others so they can read about the journey of other ostimates. UOAA is a great resource but I wanted to hear raw emotional stories that many people have to tell. It reassured me that the feelings I had in each step of my healing were rather normal.
2. Provide new ostimates with a mentor ostimate (of similar age) who can encourage new patients before, during and after surgery. I am sure many people would love to volunteer their time to help a fellow ostimate.
Thanks for all you do….your passion and commitment are incredible.
Tom Wood (52)Posted at 19:59h, 18 October
I have been with my ostomy for almost 25 years. The "sickness" that got me in to surgury was Ulcerative Colitis. My Dr. was a kind and gentle man, who lent a lot of reassurance. Then I met Vicky Lawrence. She is now a retired nurse at the VA hospital in White River Vermont.
It was Vicky who would speak to me as if all would be normal soon. She was an angel in white. Kind, considerate, and always quick to research and return a call, no matter how busy she was. She made me feel like I was the most important person around, and not just some broken person.
She was the first woman to give me a big hug after. When she hugged me, I did not "POP" or anything! I was on the road to normal, as normal as we can be post surgery. She told me I can do anything, and I pretty much have. 10 months after sugury, I had my son. 8 months after, I was back pitching Modified-Fast pitch softball. I earned 2 degree's and taught HS Auto and welding for a few years. I ride and own a couple Harleys. I have been extremely active. I do cardio kick boxing, Kenpo Karate (green belt) and so much more! No one knows, that I don't choose to share with.
It was the confidence to be normal again. The gentle hand on mine when it trembled in fear. The truth in hearing that life will all improve for the better once the disease is removed from the body, and the healing takes a hold!
I guess in using way too many words, it was the Psycological aspect that promoted the healing. The simple task of caring and maintaing an ostomy is a rather simple function. There is a degree of higher maintnenance to my life. More importantly I am a thiriveing energetic man who is only limited but by my common sence, and that is not always a such a good barrier! Life is delicious, eat it up!
Linda RahimPosted at 22:14h, 20 October
Thank you for inviting me to share my story. I had UC for almost 14 years and for the last 4 years have been really sick. Prednisone was no longer working so in 2010 my Gastro Dr recommended Remicade infusions. I was fortunate that my private insurance company covered each infusion, which in Ontario cost $4, 338.00 In some provinces, Remicade is free so I feel sorry for Ontarians who can`t try Remicade becuase they don`t have private health insurance. OHIP doesn`t cover it. I had 6 infusions over 6 months but my symptoms didn`t change much. I don`t believe that Remicade is successful for UC patients – it seems to be more successful with Crohns patients. My Gastro Dr and I both decided that ileostomy was my best choice. I was almost house bound when I made the decision, going to the bathroom over 10 times a day. I had my surgery on Feb 9, 2011 and it's going really well. I HAVE MY LIFE BACK ! I feel better now than I`ve felt in the last 5 years. I still have to have 1 more surgery next March (to remove my rectum) since I don`t want to try the j-pouch. I`m very comfortable with my stoma and pouch – what you see it what you get! I didn`t have a lot of support prior to my surgery. At the pre-op at Mount Sinai. the staff were great and gave me some good resources. I had a fantastic surgeon, Dr. Helen Macrae and I was incredibly lucky to share a semi-private room at Mount Sinai with Jo-Anna Frustaglio. I was there for 2 weeks – and Jo-Anna for 9 days. And in those 9 days, Jo-Anna was so fantastic and inspiring for me and she was a great friend. She shared her story with me and shared all her experiences with me. It was so incredible. She has her ileostomy for 9 years and has 2 beautiful young daughters. Jo-Anna is a great lady !! As a result of the information that Jo-Anna shared with me, I was inspired to keep a journal while in hospital. From that, I was so empowered by the time I got home, I transferred my journal into a Blog in the hopes that I could help someone much like how Jo-Anna helped me. My Blog is http://www.sorebelly.blogspot.com. I`ve adjusted really well to my ileostomy (my stoma is called Winnie) and I have had some ups and downs, but compared to my life before Winnie was born – I`m so lucky now to have my life back. I try to remain positive all the time (even when Winnie leaks) it`s still better than the life I had before. I hope that these stories help people who are struggling to find information to help them decide on their future and their surgery. Keep smiling everyone and I wish you healing vibes.
dina CapelaPosted at 19:51h, 22 October
Hi, I'm new to this site, on the recommendation of a friend I'm here and very happy to meet new friends. I have an ileostomy for 25 years, which has never given me problems. I am very well and with many reasons to be alive.
Miss endenPosted at 14:13h, 24 October
Thank you for sharing your very inspirational story Jess.My grandfather had a ostomy fitted and has had for 65 years with so many complications and his skin always reacted badly to the adhesive and was always irritated. My 6 year old son recently has the same problem and we found a 'sting free barrier' http://silesse.com/ostomy.html and it really does work. Has helped wonders especially for my grandfather.
TabsPosted at 19:31h, 22 July
Having to deal with such excrutiating pain for the past 3 years is pretty difficult. Especially if you are a 17 year old, living in a country run by selfish politicians and ruthless extremists. You feel bad for “feeling bad about yourself”, because when you think of the women and children dying every day in Palestine, you have to stop caring about yourself. Regardless, I feel that I must share with you all my journey to becoming an Ostomate.
At the age of 14, I felt a desire to defecate involuntarily, around 5-6 times a day. The frequency grew, and I just ignored it, blaming hormones. Then came the bleeding. At the age of 15, which defecating, I noticed my stool as being red in colour. In disbelief, I kept a very close eye on my faeces, hoping that it would not be something as serious as rectal bleeding. But then it occurred again. And again. And again.
The bleeding and the increased frequency of defecation made me express my concern to my parents, who were kept in the shadow, because you all know how parents become very worrying. My dad blamed anal fissures, since he’s had an experience with fissures a few years ago. He made me eat a fibre-intensive diet, including raw fruits and boiled vegetables. But the symptoms didn’t go away, and I ended up with increasing pain in my rectum while defecating. And it further led to difficulty in defecating, which meant I had to use a finger every time I had to defecate.
The symptoms could not be ignored, and since the internet had no clue about what I was actually dealing with, we finally decided to go to a gastroenterologist. The doctor I first consulted ruled out fissures and even polyps after a sigmoidoscopy. The doctor decided to conduct a colonoscopy, and after one fateful colonoscopy, we finally found the condition – Solitary Rectal Ulcer Syndrome. Though benign and very rare – especially since I was the first under-25 to have such a condition – SRUS was an ulcer that had developed in the colon, which just needed to heal, meaning that no surgical or medical treatment was needed. All I needed was to continue with a high-fibre diet to improve the quality of my faeces and the ulcer would start healing.
So we bid our farewell with the “good” doctor and went our way, motivated with the encouraging advice from the doctor. Or so we thought we were.
A few months later, around my 16th Birthday, i started feeling very sick. I had cases of varying temperature and heart rate (though the echocardiogram and electrocardiogram ruled out any heart problems). Then came the Iron Deficiency Anaemia, which led us to start an Iron Therapy, involving consumption of iron-rich diet and iron supplements, albeit no change. My haemoglobin levels started dropping very abruptly, and I had trouble breathing. I’ve even had episodes of low blood pressure, where I would lose my vision and fall unconscious, though there is no relevance in my condition and the latter. Diarrhoea, constipation, paleness – name it and I had it.
The ulcer was not healing, and I was becoming even more sick.
So we consulted another doctor. Then another. Then another. And each with a different view. But it was time to consult the very best gastroenterologists in the country, so we went to Dr. Anwaar A. Khan, then to Dr. Muhammad Aasim Yusuf, who, luckily, both had the same approach. They suggested a Rectopexy, which meant that the position of the rectum would be adjusted in such a way that fecal constriction would not occur again, and the ulcer would start healing. A month ago, I was referred to the best rectal surgeon of the country, Dr. Aamir Ali Syed, who has discussed two methods of approach with me, which were:
1) Operate by removing the affected part of my colon. This was ruled out due to my age and the higher level of risk associated with it.
2) Operate by conducting both a Rectopexy and a Colostomy, which has comparatively lower risks than the first option.
The moment when I hear about the Colostomy, I am horrified. The idea of defecating in a plastic bag for 4-6 months was unimaginable and scary. Especially for a teenager. And since I’ll be going to college in a month’s time, this was one of the hardest things to accept. The Colostomy also means that I can’t travel abroad, ruling out my plans to study at the University of Warwick for a degree in Economics (broken dream, as I call it now). The proposal immediately raised a plethora of questions in my mind, and frankly speaking, I was more concerned about whether the odour would leak out any time, and how I will handle a plastic bag.
A two days thought, and today, I sat down with my parents and finally decided that I would go with the second approach, which meant carrying a plastic “poop bag” around for half a year (which is humiliating, but if I don’t do anything, I’ll end up worse).
The idea of being an “Ostomate” is very scary and daunting. I have not yet even met an Ostomate, let alone a happily-living ostomate. I’ve been watching all these Colostomy videos on Youtube, and believe me, a glimpse at the first video of the procedure was scary enough that I can’t even sleep right now (hence, here I am, writing about it).
I know all of you are very much older than me, and being the youngest SRUS patient and a soon-to-be Ostomate, I would like your help. I have read many cases of a temporary Colostomy turning into a permanent one, which scares me more now. Help me out please! Share with me some words of encouragement. I know I’m being very ungrateful for even having a chance to live a better life, but I feel at this moment that I am better off being the sick person rather than an Ostomate. 🙁
TabsPosted at 19:33h, 22 July