09 Dec I’m All For Mutual Awareness, But Not In This Case
Today, an article by Cosmo magazine was brought to my attention.
The girl who shared it with me shared it on my Facebook wall was extremely excited that the article was promoting Ulcerative Colitis and the Ostomy.
I was extremely excited too- about time!
I was excited, that is, until I read it.
If you read through this article, you will see some great awareness about the difficulty that Ulcerative Colitis patients face. Jennifer Martin, the subject of this article, goes into great detail about her symptoms and paints a very real picture of living with the disease. It was a great way to spread awareness about this terrible disease.
While this was great awareness for Ulcerative Colitis, it was definitely not great awareness for the ostomy. In fact, it was the opposite.
If you read a little further in, you’ll realize that she refers to her “poopbag,” or temporary ostomy before her J-Pouch, in an extremely negative light.
She states,
“…I couldn’t enjoy food and was attached to a poopbag.”
And
“When I woke up from the last surgery and wasn’t attached to the bag, it was the best feeling in the world.”
Sounds like she couldn’t get rid of it fast enough. Which, in her case, might not have been the best option, because if you read on, she continued to have issues post J-Pouch surgery.
Hm.
I’m all for awareness for IBD, don’t get me wrong, but not when it’s anti-awareness for one of its helpful, if not necessary remedies.
I think what I find most disturbing about this article is that Jenn is not just a random girl with the disease. No, Jenn actually runs support website for those with Crohns and Colitis. She has a voice.
According to Cosmo, a very large voice.
I am deeply saddened by this article and have written a message to cosmo about it here. In my letter, I applaud them for discussing the much needed topic of IBD, but I insist that the article painted the ostomy in a negative light. I suggested that a supplementary article be written to combat this and gave them this website as a resource. I encourage you to do the same.
Thanks guys <3
Edit: I would like to clarify that I, in no way, am referring to having J-Pouch surgery as a bad thing, nor am I trying to offend those who opted to have it. If you can successfully have the surgery, all the power to you. What I have merely tried to state here is just because someone can have the J Pouch surgery and no longer have to have an ostomy, it does not make it ok to say negative things about it in an article with an enormous audience. Speaking as representative of those with IBD and as a past ostomy patient, she should not have painted the ostomy so negatively. As I commented on the Facebook link, if a homeless man won the lottery, is it ok for him to insult those who are still on the streets? What do you think?
Christina
Posted at 03:29h, 09 DecemberThis type of article really frustrates me too. I have Crohn’s and had a total colectomy. It was the BEST decision I’ve ever made. In my local support group, there is a man that went across the country to get his ostomy reversed. It kind of hurt my feelings. I am glad that I have my ostomy. It brought my life back. People that have their ostomies reversed should acknowledge that without their ostomy, they would still be deathly ill.
Ugh. More power to the people who are proud of who they are!
Martina
Posted at 03:43h, 09 DecemberI have the option to have the reversal and I choose not too. My life before my colostomy was terrible, I could not look after my family, my pets or myself, I couldn’t leave my house for nearly a full year. Thanks to my colostomy I have been able to enjoy my life, take part in activities with my kids and for the first time in years I was able to enjoy food. I wouldn’t change a thing!!
Cassandra
Posted at 03:47h, 09 DecemberI’m sorry someone else’s reversal hurt your feelings. This is what I think is the trickiest/stickiest part of support groups, we all have something huge in common but there are so many differences when it comes to diseases, ailments, response to treatments/medications/surgeries and so and so forth that it makes it hard. I might have had a reversal but I’m glad that former stoma saved my life & is still with me, albeit no longer visible 🙂 Best of luck to you <3
Annette
Posted at 03:40h, 09 DecemberMy daughter has had crohns since she was a 6 month old infant and for her it was a matter of life and death that she had an ostomy at 8 years old…life is hard enough for her and her daily struggles with this disease without her ostomy being portrayed negatively by people like this and it takes more courage to deal with it all on a daily basis then I see in this girl in this article….You owe ostamates an apology and it doesn’t surprise me that this comes from someone who never accepted her disease in the first place ..maybe she shouldn’t be the spokeperson for CCFA…
Cassandra
Posted at 03:43h, 09 DecemberI am frustrated by this article too. My total colectomy wasn’t a decision as my Ulcerative Colitis was literally causing my colon to shrivel up so like it or not, it was coming out. Despite having (medical) issues with my ostomy, it saved my life. I had my J-Pouch surgery a year and a half ago and have had issues as well. I think the simple answer to that being that when you don’t have all the parts, the system doesn’t always work the same. I can appreciate Jennifer’s honesty and as I said in my tweet to you Jess, I wish her all the best. I feel your site would be a fantastic supplement and hope Cosmo as well as Jennifer takes a good look at it. And for the record, I’m 26 and happily married. My now husband, then boyfriend & I were only together 7 months and we were just 21 when my colectomy took place and he couldn’t have been more supportive then and now.
Proud Jpoucher
Posted at 03:52h, 09 DecemberLet me just say that there are two sets of people. People that are pro-surgery and those that are anti- surgery. A subcept of the pro group don’t always have a choice as to whether or not they have surgery – I am one of those & I have been made to feel as less of a person b/c I ‘elected’ surgery. I was short of being harassed in a site b/c I was contemplating surgery. For this reason I delayed surgery & I almost delayed it too long. I elected surgery over death. The next set of people are those that elect to reverse their ostomies and those that dont. Each person has their own reason. I elected to go the route of reversing my ostomy and having my intestines reconstructed to form the jpouch. While I respect those that have to have ostomies or have no choice in the matter, having an ostomy (a poop bag) was not for me. I didn’t want to live that way. I had nothing but issues with my ostomy & it made me feel bad image wise.
I will say that Jennifer Martin does in no way feel the way that you have portrayed her to appear. Just b/c she refers to her ostomy as a poop bag doesn’t make her a bad person. Everyone has their own views and opinions. Just b/c we elected to reverse our ostomies doesn’t make us bad & you have insinuated as much in several posts. I am glad you are spreading awareness but you use sex to do that. Some might judge that. If you wanted to spread awareness, and since you now live in the US, why didn’t you do anything to spread awareness during the CCFA Crohns & Colitis awareness week? Shame on you & shame on all those that make the jpouchers feel bad. Not everyone can be a 20 something sex-image for ostomies. Besides Jennifer Marin has dedicated her life to treating the psychological issues ibd’er suffer from. What exactly have you done other than get semi naked.
Jess
Posted at 04:03h, 09 DecemberAs I said on Facebook, it is not about having the JPouch or not. It is about expressing that the reason for the JPouch is because the ostomy is an embarrassing/awful/gross/unsightly negative thing.
Ostomate
Posted at 04:09h, 09 December^ Proud JPoucher, your post was disrespectful and rude. I couldn’t stand my j-pouch, so I went back to an ileostomy. As you say, we all have the right to make our own choices. We don’t all have the right to make ad hominem attacks every time we disagree with a point.
Kat
Posted at 04:04h, 09 DecemberMy son was born with an imperforate anus and had a colostomy placed when he was just over 24 hours old. When he was 2.5 we had surgery to reverse it and there were numerous complications, including a bowel herniation and emergency surgery at 2 o’clock in the morning. The result of that surgery was a new colostomy, and a new appreciation for it. His initial stoma had lots of issues and the bag leaked constantly, pushing us initially to go for the reversal. Several of his doctors and providers, as well as members of the family have asked when we are going to”try again” and to be honest, we probably won’t unless he is old enough to be part of the decision and that is what he wants. I agree that there is a lot of negative stigma about ostomies, but they are beautiful in what they do and provide, and you are a beautiful person Jess, for being in the spotlight and helping so many people accept ostomies for what they are!
BabyColonBabe
Posted at 04:15h, 09 DecemberI read this article a few months ago and thought it was very informative and shed some light on the disease. In some ways I don’t think her point was portrayed in a great lite. You can’t always see sarcasm and laughter in an article if people don’t write it. Anybody who has one of these 2 diseases knows how it makes you feel, pysically and emotionally. I was diagnosed with UC, had a total colectomy with a temporary ileostomy for 6 months before I had my takedown surgery. I use to call it my poopbag too, not sure how she meant to use that figure of speech, but I used it to keep my humor intact. Which I think is really important with any illness. Keeping a good sense of humor helps you stay out of self pity. I’m very greatful for Lois (my ileostomy), it was the first time in years that I wasn’t in any pain and I finally had energy! It wouldn’t be ideal to have it back, but I wouldn’t think twice to tell my surgeon to put it back if complications arose and it kept me pain free and able to live my life. I don’t think she meant to be negative about it in the sense for people who have to have a perm ileostomy, but in the sense that it’s A LOT for a person to get use to. Some people are never fully comfortable with having it and have a really diffucult time admitting to the fact that this happend to them. Having an ileostomy bag I’m sure isn’t the ideal situation for anyone, but it makes a worlds difference when it takes your pain away and you can live your life.
KD
Posted at 04:35h, 09 DecemberIt sounds like she didn’t have the bag for long. Some people have a harder time, and it takes them more time to adjust to it. She obviously went through much hardship. I hope things continue to work out well for her. For those who have, and need the bag, it is a lifesaver for us.
J.D.
Posted at 07:12h, 09 DecemberExactly. But for some people its not a lifesaver. For me for example. I have it because to have a little better life but it doesnt functioned yet my system. So I hate my ostomy and Im glad to have a Pouch sometimes. And her and my feelings are bad feelings about this topic.
Ashley
Posted at 06:33h, 09 DecemberShe obviously had a hard time with the experience and that is understandable. It is never easy to get sick and have your entire world turned inside out. Literally. I’m waiting for my J-Pouch to heal so it can me reconnected again. Not sure what is going to happen to it or me. It has not been an easy road for me during my recovery from my Sever Colitis. Coming to terms to what has happened can be different for everyone and should not be judged so harshly. Yes, it is sad that her experience was negative, but everyone handles things differently. Hopefully she can get happy and back on track with her life.
Samantha
Posted at 06:44h, 09 DecemberI too had the choice of live or die when it came 2 my stoma, at 16 years old as much as I didn’t want it, I eventually agreed, after surgery I didn’t have the best time in the world and even now 4 years later I still struggle, just recently I ended up in intensive care with a hernia in my small bowel, which also nearly killed me, after this surgery I woke up with also less small bowel and a new stoma, what was flat and turned out to be a nightmare, I’m still struggling with it now, the leaks, the sore skin…. But I get on with it because it saved my life and its better than being on 29 tablets a day, remicade injections and constant hospital stays. My ileostomy was never intended on being permanent, but I have been delaying my surgery appointments for the last 2 years, I am just not sure, do I want to face the risk of having my bag removed? Then I find it doesn’t work and have 2 go through all the pain again of facing life with an ileostomy? Oh and then there’s the fertility issues with the pouch… Just for now, I’m pretty happy with my lovely little poopbag, it gives me character and people refer to me as brave, too me as all you other ostomates know, its not brave its the choice between life or death most of the time! And I for one choose life!
Hedster
Posted at 07:23h, 09 DecemberAs always, we have people feeling strongly about this topic. Some rudeness toward Jennifer Martin isn’t necessary and rudeness toward Jess sure isn’t either!!!
Let’s face it, none of us would CHOOSE this. But the disease had hit us (or a loved one) and you need to make the best of a bad situation. I agree with Jess, great to have awareness brought to IBD, but I’m most concerned that she is a counselor and yet doesn’t seem to be very accepting of IBD – I am all for being an advocate and cheer team for any IBD patient.
Lori
Posted at 09:20h, 09 DecemberI’m not sure that I necessary agree that it puts having an ostomy in a negative light. After reading the article, I get the sense that she seemed depressed over the whole ordeal and that made her feel negative about having an ostomy. I can relate quite a bit to how she felt. I went through hell for over 10 years but I believe a lot of it was due to the fact that during the first part of my ordeal I listened to what the doctors wanted me to do and not what I wanted to do because at the time I had no idea what to do. There wasn’t a lot of information available to me back then like there is today. My first surgery, I really had no choice, my choice was have a temporary ostomy or die. Well when the doctor puts it that way of course you will choose ostomy over death even though at the time it was very hard to understand what an ostomy was. He explained the surgery and told me it would be a two part surgery. The first being removing the whole large intestine and putting in a temporary ostomy. The second creating and hooking up a j-pouch. Neither was appealing to me at the time but both were better than death. To make a very long story short. I went through both surgeries, had tons of issues with the j-pouch, was given another temporary ostomy, and after 11 major surgeries, not counting the small procedures, I begged for a permanent ostomy because I wanted my life back! I ended up having to have 2 more major surgeries and now I have a permanent ileostomy. Having an ostomy has been way better for me than having a j-pouch. I’m not trying to put j-pouches in a negative light either. It’s just knowing what I know now, I would never have had a j-pouch. I would have had a permanent ostomy the first time around. None of this has been easy on me and there are days that I hate my ostomy as there were days that I hated my j-pouch. But those days I do try to think it’s better to have an ostomy than to be dead. I really enjoy your website Jess and I feel that the campaign your in makes ostomies look sexy which I think is a really great thing! For me the campaign makes me feel better about my situation and I feel that it sends a positive message.
Jim
Posted at 11:50h, 09 DecemberThanks for pointing this article out to all of us. As I stated in my comments on the article, I’m a 51 year old man who’s had Crohn’s since I was 15. My life was literally saved by ileostomy surgery 5 years ago. I live with a “poopbag” and am thankful for my life everyday.
Josh
Posted at 12:56h, 09 DecemberEven though my ileostomy has been reversed, i am thankful to have had it. Mine did save my life. I had to have emergency surgery due to an infection, and didnt know that getting an ostomy was an option until i woke up and saw oscar attached to me. Having the ostomy changed my whole outlook on things, in a very positive way. Even though i am thankful to have things reversed, having my ostomy might have been one of the best experiences that i had. It taught me several lessons that i ordinarily wouldnt have learned.
Tania
Posted at 13:39h, 09 DecemberThe article is more about UC awareness than ostomy awareness. In fact she barely mentions the ostomy, instead she focus on her pain and struggle with ulcerative colitis. However I understand it’s difficult sometimes not to relate the two. Unfortunately, many people with UC and Chron’s will eventually have they colon removed and may need a permanent ostomy and the few words she mentions about her experience with the ostomy do very little to put fellow sufferers at ease, which is in fact a shame, but I also understand this only describes how SHE felt, and I can’t say I’m very surprised because if you remember from the article she had the second surgery only 3 months after the first one, and the last surgery another 3 months after the second. She barely had time to recover from the previous surgery let alone time to get herself used to the bag and time to discover how normal life with an ostomy can actually be. I can’t blame her for thinking/feeling that way.
Actually, I remember a stoma nurse saying at the hospital I had my surgeries, some surgeons like to wait at least 6 months before reversal so the patient has time to experience life with an ostomy, so he/she can make a more conscious decision on whether to go ahead with the reversal or not. I found this quite wise.
You mentioned that her decision of having an internal pouch maybe wasn’t the best one considering she is still having problems, which from what I read on the article it’s not true. Yes, she mentions complications with the pouch in the beginning but she also says that those are now sorted, and to be fair no surgery is without possible complications. No doubt there is need for positive ostomy awareness but it’s exactly the same for the internal pouch. This is not to say one is better than the other. They are two amazing options (unfortunately I believe the internal pouch is not an option for those who suffer from Chron’s) and the choice of which one it’s a very personal decision.
I have an internal pouch, and I’m happy with it (knock on wood :P) and if someone asks me which one I prefer, the ostomy or the internal pouch, I’ll have to say I prefer the internal pouch, again this is a very personal opinion and this it’s not to say that living with an ostomy is bad, it’s just my personal experience and not a negative thought about an ostomy. I had an ileostomy for about a year and a half and I can say my life was pretty normal, as it is now with an internal pouch. I wrote about it here: http://doyouwantapotato.blogspot.com/2011/06/uncover-ostomy.html (and about uncover ostomy), I try to sound truthful but positive when talking about it.
Please, do not take me wrong, I really understand where you’re coming from and your frustration towards the not so positive words about the ostomy (however, I don’t think they were exactly negative). I also agree that it would be very nice if the magazine were to publish a positive article focusing on ostomies. I just think that even though it is possible to have a long, normal and happy life with an ostomy we can’t talk about it as if it is everyone’s dream to have one. We can’t pretend that it’s not true that most people struggle physically and psychologically to come to terms with having an ostomy or an internal pouch ( internal pouch as well because we can’t forget that even though there is no ostomy the colon still doesn’t exist and all the issues related to that are still there!), and I think the article shows that.
Now, we’d all like to have always been healthy and still have our bowels working perfectly, but that’s not going to happen, is it? And that’s why campaigns like yours are, in fact, amazing. It comes to show that when the best case scenario isn’t possible ( the happy healthy colon), the alternative ( the ostomy or internal pouch) it’s not so bad, on the contrary.
At the same time I think it’s important to show the positives about ostomies, I find it also important to show the truth about how people often feel about it so others can relate. I don’t think that’s necessarily negative awareness.
Oh! When she states
“…I couldn’t enjoy food and was attached to a poopbag.” it doesn’t seem to me that she related the two as it’s suggested on your post. She couldn’t enjoy food because she was having a difficult surgery and not because she had an ostomy.
Cassandra
Posted at 14:52h, 09 DecemberWorded so lovely, I couldn’t agree more!! Your blog is fantastic too!
Russell
Posted at 19:49h, 09 DecemberI think there are two points to be taken away from all this. First, there is a difference when you’re sharing your story and opinions individually as compared to when you take on a position (even if informally) of spokesperson. You have to watch your choice of words more carefully. There is so little attention given to our maladies and there is already a stigma attached to bowel issues. For example, on various discussion boards we use phrases like “poopbag” but I would have preferred a more neutral term in this instance. And secondly, there is a way to portray the difficulties of living with UC or Chrons, or having an ostomy or a j-pouch, etc. without adding to the stigma. We don’t want to scare people away from getting the treatment they need. I suffered with UC for 18 years and always refused to even discuss the possibility of a j-pouch with my doctors (let alone an ostomy). Instead, during the 19th year I was diagnosed with rectal cancer and had no option but to have my entire colon and rectum removed and no possibility for a j-pouch. And while that certainly “cured” the UC, and there’s now no sign of cancer 16 months later, I’ll spend many years looking over my shoulder for a recurrence. Had I not been so freaked out by the thought of an ostomy, I might have done it earlier, enjoyed my life sooner, and prevented the cancer in the first place. So explain the downsides of the diseases and treatments honestly and with dignity, but focus on the positives and we’ll save more lives and help more people have better lives.
Jess
Posted at 20:46h, 09 DecemberWell said, Russell!
Chloe
Posted at 01:26h, 10 Decemberi have had a colostomy for longer thsn i can remember literally. i know people with j-pouches and the sound complicated. i would not want to get one ever.
Tiffany
Posted at 13:22h, 10 DecemberI had an ostomy for 4 years and if I hadn’t had one I would have been dead bottom linem I loved my ostomy. I thought it was cute. I had one of my children while I had it enough though doctors where screaming in my face that I wouldn’t be able to carry and my baby would be so retarded I wasn’t going to walk down the block. I opted to have a j-pouch and I wasn’t easy because I did love my bag. But we have this new surgery now why not try it. We all have to be strong for each other. I have had another baby post j pouch and have had soo many complications from UC the ostomy saves lives and gives many of us our life back! Without running to bathrooms and bleeding everywhere.this is disapointing someone could call it a poopbag. I called mine my strawberry. Lol
Erica
Posted at 20:39h, 11 DecemberI have had Crohn’s disease since I was 7 years old. I have suffered through medication after medication and many unsuccessful surgeries. When I got my ostomy, I was 21 years old, and although it was a choice between life or death, after living with it for over a year I can honestly say it was the best decision I have ever made. For once I fee normal. Yes, I have a bag. But so what? For the first time in my life I can eat what I want without worrying about getting cramps, and not have to look for a bathroom every time I go somewhere new. It has brought a huge amount of freedom to my life in ways that I had not expected. Before the surgery I was terrified, how could you not be when faced with such a dramatic lifestyle change? I was worried what my boyfriend of 5 years would think of me, and what I would look like in clothes. I felt like everyone would look at me and know that I had an ostomy. Those worries were superficial. I wear the same kind of tight clothes I did before my surgery, can finally go snowboarding and do any other activity I want. It has not limited me in any way. I feel MORE confident now that I have my ostomy because I’m not constantly worried about being under weight (or over weight when taking steroids). Portraying an ostomy as such a negative thing to have done is horrible for the people who have ostomies and are living normal lives because of them. I think it is this woman’s (Jennifer) responsibility to expose all angles to a successful life after surgery, especially if she is supposed to be helping people with IBD. If you have a voice, use it to promote all solutions to this disease, not just your own biased, negative opinion on something that didn’t work for you. It is because of things like this that people like me who have bags are afraid of what people will think if they find out about them.
Anonymous
Posted at 02:09h, 19 DecemberI can understand why the comments in the article might upset some, but I think the article illustrates an important point: having an ostomy is not a positive experience for everyone. After my surgery it was wonderful to read this blog written by a girl who has handled her ostomy surgery so well and who can now lead a normal life because of it, but I don’t think every ostomy patient has that experience. There are two sides to every story and while this blog presents a positive ostomy experience I think those who have had a negative experience need a voice as well. Further, there are probably a lot of IBD patients out there who are facing surgery and who want to make the best decision for them. If no one talks about the negative aspects of having an ostomy bag how can those individuals make a truly informed decision about which surgery (if any) is right for them? It probably wasn’t easy for Jennifer Martin to tell her story and I think that IBD patients should support her even if her comments about the ostomy specifically are contrary to your truth.