Frankly, My Dear, I'm Terrified - Uncover Ostomy
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Frankly, My Dear, I’m Terrified

The story of my journey to the ostomy is something I talk about quite often. I tell the story to small groups, to large audiences, and to individuals one-on-one. I tell the story almost like a fairytale, framing Crohn’s disease as the evil Dragon, myself as the helpless Princess, and the ostomy as my Knight in Shining Armour.

Or… plastic.

And the Princess and the Ostomy lived happily ever after.

I tell my story as if it was just that; a story; a beginning, a middle, and an end.

Unfortunately, 10 years later, I’ve had the unfortunate realization that there never is an end to anyone’s Crohn’s story. Not even mine.

The evil Crohnโ€™s Dragon is back. And I am terrified.

I noticed that something was wrong when I discovered small lesion on my stoma (the intestine that sticks out of my stomach) and I had some uncomfortable pain in my abdomen. I immediately booked an ileoscopy (a colonoscopy for those without colons) to investigate as soon as I could. Sure enough, I awoke to the news that my Crohn’s had come back.

I was instantly put on an immunosuppresant drug (a drug that lowers your immune system making it very easy to get sick) called Imuran, and began the process to get myself covered for the other drug (Remicade) that costs $8,000 a dose and has to be given intravenously every few weeks. I also put myself on a soft food/liquid diet and cut out all my alcohol consumption (which, realistically isn’t such a bad thing after the year I’ve had.. haha). In 6 months, I was told, we would reassess.

This is weird.

This is the first time I am facing the disease as an adult and taking my medical care into my own hands. The last time I was got sick, I was only 9. Now, at 23, I am the one being told all of the facts, the options, the choices, and the risks. I make all the decisions.

Not only that, but this time, unlike the last, I actually know looming possibilities that are ahead of me if I am not careful. I could end up back in the hospital, unable to eat, unable to move, unable to stay awake in a haze of drugs, having to deal with a crippling amount of pain, and unable to live my life. I know whatโ€™s potentially on the horizon for me. Iโ€™ve been there before.

In the meantime, however, I am living life. I refuse to let the disease get in my way.

Which, luckily, right now hasn’t been that hard. I actually feel pretty good. Minus a few stomach aches here and there and minus the fact that I don’t get to eat much of anything at all, (some of my friends would say it’s not much of a change anyways…) I’m still a normally functioning human being. I am partying with friends, hanging out with my boyfriend, going to family dinners, working, shopping… In fact, I went to the gym today and exercised without an issue! At least, I didn’t have any issues until later as I walked out of the subway station and walked to the hospital for my appointment today and almost puked from nausea thanks to my other medication. (Try to fix one problem and get a bunch more, right?)… Ginger ale is my new bff.

The point is, I am actually doing pretty well, at the moment and I have my ostomy to thank. Yes, my Knight in Shining Plastic.

Without my ostomy, I can very much guess that I would be in much more pain as my food would have a longer path to travel to digest. I would also probably be running to the bathroom constantly, and I also probably wouldn’t be able to sleep from both those issues. All of these symptoms were what made dealing with my disease horrendous when I was a kid. However, thanks to my bag, I only get a bit of stomach pain for a very short amount of time and my bathroom time hasn’t changed. The ostomy really has been my life-saver. Even now.

However healthy I am feeling right now, I still can’t help but worry. ย It has actually been a bit of an emotional rollercoaster for me since the diagnosis. I’ve gone from trying to ignore it, to trying to rationalize it, to even, if I’m going to be honest here, crying over it (though barely, since I really don’t cry and I’m strong and brave and all that…cough.). The emotions have been tough, but I have a great support system around me to help and I couldn’t be more grateful.

Unfortunately, no matter how many supportive people I have around me to help me through, the majority of the emotions and worry that I feel are not about the here and the now. These emotions are not about dealing with the immediate symptoms or the annoying and painful treatments I have to go through. They are about the looming future I could face.

I’ve been there. To hell.

And the thought of going back is terrifying.

Luckily, in the here and now, I am doing well. I am still able to work, still able to exercise, still able to go out with friends, and do all the things I want to do. I am still able to live myself as I did before. As long as I keep watching what I eat, as long as I keep taking my medication, and as long as I keep smiling, I know I’ll be alright.

Getting my first Remicade treatment at Mt. Sinai Hospital in Toronto

Besides, we all know, the dragon never wins.
Jessica Grossman
info@uncoverostomy.org
51 Comments
  • John
    Posted at 23:03h, 13 May Reply

    You are a tough girl….you have a LOT if inner strength. A lot more than most people. You will get through this and come out from the other side even stronger.

    • Jess
      Posted at 03:06h, 14 May Reply

      Thanks John!

      • Ashley
        Posted at 00:27h, 22 May Reply

        When I read your post, I feel like you are telling my story. I was diagnosed at 12 years old and did years and years of treatment ( all that you named above and more) finally at 21 years old and not getting better but worse they removed my colon and 2 inches of my small intestine. Almost 4 years later and My bag has been my life savor, my strength, and has given me a chance to live again. I do get scared that I will have a flare up and wonder whatwill happen if I end up really sick again with our the option of removing the colon( because it is already gone). The thought of more being removed is terrifying. I used to go for remicade treatments before tje bag and we used to call it the miracle drug because it was the only drug that helped me to fell better. During my 8th round of infusions my throat closed from an allergic reaction from it. I was devistated. I only hope that I can continue to stay healthy because im scared to see anything worse happen. It is such an insperation to hear a story that is mine come from another female that is around my age. It is great and inspiring how openyo are about the ostomy. I do the same when I talk to others and have no shame. I think we have the strength to do so because all that we had to go through before surgery…. a very painful, awful, and tragic disease! Hang in there and stay strong… you have already faced the worse. Praying for both you and I that things stay under control and healthy!

        • Jess
          Posted at 01:54h, 22 May Reply

          Thank you, Ashley!
          I hope you stay well too!

  • John McNay
    Posted at 23:12h, 13 May Reply

    We are rooting for you, Jess. As someone who has had an ileostomy for 45 or so years, I know what it is to be in it for the long haul. There are ups and down. You ride it out the storm. With your friends and allies ๐Ÿ™‚

    • Jess
      Posted at 03:06h, 14 May Reply

      Thank you so much, John!

  • Constance Worden
    Posted at 23:13h, 13 May Reply

    I totally get the dragon theory, and the fairy tale type of story. I am 47, and on my third ostomy. I wouldn’t trade mine for any amount if money. I had two colostomies, and currently have an ieostomy. I don’t have chrones, but my younger sister does. I have had 60 abdominal surgeries, and still counting. There is slot to be said for extra soft diet and lots if fluids to keep obstructions at bay. You have the right attitude!! Live your life to the fullest, don’t let the enemy win (the dragon in this case)! You will have a great life with this outlook!!

    • Jess
      Posted at 03:06h, 14 May Reply

      I wouldn’t trade mine either!
      Thank you so much :]

  • Bec
    Posted at 23:17h, 13 May Reply

    Currently in hospital battling my own Crohn’s with a colostomy after sending myself to emergency three days ago… I feel your pain all too well. I cannot use remicade as I have anaphylactic reactions to it ๐Ÿ™ my journey here will end in surgery, but I pray yours will have a better ending!! xx

    • Jess
      Posted at 03:06h, 14 May Reply

      Sending you lots of good luck!

  • Shelly
    Posted at 23:24h, 13 May Reply

    Jess, you’ve achieved more than many even twice your age and you will continue to because you’ve got the right attitude and that is the most important thing. I’m so sorry you’re dealing with the evil monster still, but you had ten free years and in the mean time they’ve learned a lot about remicade and other meds are in the pipelines, so stay strong. We all have no choice. Better things are around the corner for us all.
    Keep us posted. I’m thinking of you.

    • Jess
      Posted at 04:13h, 14 May Reply

      Shelly, thank you so much!

  • Kelly
    Posted at 23:26h, 13 May Reply

    Yeah, I’ve had my colostomy due to Crohns for nearly 4 years, and it has been mostly a blessing. I can drive where I want in the car again. Had a little trouble getting my stomach muscles back in shape, so some things I used to do I can’t do any more. It definitely is a dragon.

    • Jess
      Posted at 04:13h, 14 May Reply

      It is!

  • Daniele
    Posted at 23:41h, 13 May Reply

    I have had crazy severe untreatable crohns since 2006.. I had my colon/large intestine removed Sept of 2012 and have a life again. I am thankful for my ostomy. I went to my GI today to learn the results of the last round of tests. I have very active crohns in stomach, duodenum, and about 12 inches up from my stoma. I swear I can hear in a spooky haunting voice.. “its baaaack” I have failed on all meds and a few study meds..so they are trying methotrexate again ๐Ÿ™‚ I love shots! ha ha..I could totally relate to being scared about the future.. Ive been to hell and back as well.. Praying that the meds work and our diseases go to remission!

    • Jess
      Posted at 04:14h, 14 May Reply

      Thank you so much!

  • Kristen
    Posted at 23:59h, 13 May Reply

    Hugs Jess!!!! Sorry CD is rearing its ugly head again.

    Remistart has been very helpful for me with Remicade treatments. Absolutely insane that you could buy a decent car for what Remicade costs, right?? In a year, you could buy one heck of a car!

    I started Imuran not long after my surgery, and found out that I was allergic to it, so I started Remicade instead to keep the CD at bay. So far so good… but I’m only 2 years post surgery.

    I hope you’re feeling better soon. Keep us posted. I wanna hear about how CD gets its butt kicked again!

    • Jess
      Posted at 04:14h, 14 May Reply

      Thanks Kristen! I will definitely be keeping you posted!

  • Janet
    Posted at 00:21h, 14 May Reply

    I was a little younger than you are now when I found out I had crohns I battled it for 15 years long painful years. I wasin the trials for remicade. Had my ileostomy in 99. There aren’t many things I fear more than the crohns coming back. You have inspired many, me included to understand being healthier with an ostomy is so much better than being sick all the time. I’ll be saying a prayer for you.

    • Jess
      Posted at 04:14h, 14 May Reply

      Janet, so glad I could help! Thanks :]

  • Justin
    Posted at 00:33h, 14 May Reply

    Jess, I had the exact same thing happen to me with my ileostomy a few years ago when I was 26. It started when I noticed little white ulcers/lesions on my stoma that seemed to be multiplying. At first I thought it was just wear and tear from being active, but it turned out to be the return of Crohn’s. I was so sure it was over after the surgery. The feeling I got in the pit of my stomach after learning that I still had active Crohn’s is maybe the truest fear I’ve ever known. For the first time I was honestly facing down my own mortality.

    Much to my chagrin the flare-up meant going back on to meds, but it hasn’t been too bad. I’ve been through the entire array of biologic class drugs and now I’m on a weekly Humira dose and feeling great. I’m 29 now and still at the gym 4-5 days a week and I’m showing no signs of slowing or regression. In fact, I’d say that I’m in the best shape I’ve ever been in.

    You have exactly the right attitude to get through this and probably anything else. Keep that and I think you’ll do just fine.

    • Jess
      Posted at 04:15h, 14 May Reply

      Sounds like we’ve had a very similar experience. Glad you’re doing well now and I have something to look forward to! Thanks, Justin!

  • Michael Ross
    Posted at 00:44h, 14 May Reply

    Jess,
    I’m another with a similar story, restrictions in ’94 and ’02 left me with a temporary colostomy for about a year. I finally got healthy enough to have a take down in ’04. I coped for 5 years before I had a complete proctolectomy in 2007 and have been better since. I’m hoping Remicade, Humara, Asacol and all the rest are things of my past, but one never knows.

    Best of luck and keep your head high. You’ll never be given more than you can take.

    • Jess
      Posted at 04:15h, 14 May Reply

      Thanks, Michael!

  • Rachel
    Posted at 01:10h, 14 May Reply

    Jess,

    I am so sorry to hear the evil beast has returned. If anyone can rise above it, it’s you. You’re an inspiration! My story is similar too. I feel like I’m reading my own diary. Here’s hoping Remicade and Imuran help a ton!

    Best wishes,

    Rachel

    • Jess
      Posted at 04:15h, 14 May Reply

      Thanks so much, Rachel!

  • Amy Schachter
    Posted at 01:20h, 14 May Reply

    Make sure you are getting support too even though I know you are more than capable to make all the decisions on your own!!

    I am here for you Jess, along with all of your other friends and family. So proud of you ๐Ÿ™‚

    • Jess
      Posted at 04:15h, 14 May Reply

      faves

  • gary lee becker
    Posted at 01:36h, 14 May Reply

    Keep doing your thing Jessica. It’s scary and all that, but you’ve got the inner strength and chutzpah to handle it I am sure.

    • Jess
      Posted at 04:16h, 14 May Reply

      Thanks, Gary!

  • Mark
    Posted at 02:36h, 14 May Reply

    Jess: Stay Strong, Keep that great ATTITUDE and God Bless.

    • Jess
      Posted at 04:16h, 14 May Reply

      Thanks, Mark!

  • Kathy
    Posted at 04:08h, 14 May Reply

    Hi Jess,

    I am so sorry about your CD’s return. As a parent of a 5 year old with crohns I relate in a whole different way. My daughter had a total colectomy with ileostomy at age 3 (thinking it was UC), was rediagnosed crohns at age 4 and has spent the entire last year 100% tube fed. This really is a horrible disease but it can be tamed and one day we will find a way to slay or lock the dragon up forever. I wish you a very long and uneventful remission with remi. I hope as an adult my daughter will be as comfortable and open with her ileostomy as you are.

    • Jess
      Posted at 04:16h, 14 May Reply

      Thank you so much, Kathy!

  • Willo Williams
    Posted at 06:23h, 14 May Reply

    Hello Jess

    I have been following your courageous journey for quite some time and find you inspirational – especially in your efforts to slay the stigma attached to having a stoma, so I was deeply saddened to hear you are facing the evil dragon again.

    I didn’t have CD, but my colostomy was a result of having recurring bowel cancer over two years. A year after my surgery, the mid stages of cervical cancer was diagnosed and a year after that my pelvis fractured due to secondary bone cancer. Needless to say, I wasn’t expected to survive, but here, 22 years after my last treatment, I am writing to you – an amazing young woman – and if anyone can face this terrifying foe, then you are the right person for the challenge!

    I wish you well in the difficult task you have ahead – and have do doubt you will face it with the same fortitude as you have shown throughout your young life.

    With very best wishes

    Willo

    • Jess
      Posted at 15:47h, 14 May Reply

      Thanks Willo!

      I am so glad to hear you’re doing well!

  • Patrik
    Posted at 06:58h, 14 May Reply

    Hi Jess,
    That’s sad to hear ๐Ÿ™ I wish you all the best. I’ve been blessed with little issues since my colectomy 5 years ago, but I feel for you!
    Just a little quote I love ๐Ÿ™‚

    “Tough times don’t last, tough people do, remember?” ~ G. Peck

    Blessings
    Patrik

    • Jess
      Posted at 15:47h, 14 May Reply

      Thanks Patrik!

  • Oz Chardonnay
    Posted at 12:20h, 14 May Reply

    Thinking of you Jess, you are such an inspiration and ambassador particularly the younger crohnies. My 15 year old son got his ileostomy last July and unfortunately started back on remicade or infliximab as its called in Ireland last Friday. I hope the infusions keep the dragon at bay xx

    • Jess
      Posted at 15:48h, 14 May Reply

      Thanks so much!

  • Nora Sammon
    Posted at 15:02h, 14 May Reply

    Jess,
    As an ostomy nurse I am constantly looking for inspiring stories for my patients and I ALWAYS bring your story up. Suffering with a disease like Crohns that affects your whole GI tract and being unpredictable, is, I’m sure, like waiting for a bomb to go off! Stay strong and keep the faith, I am keeping you in my prayers!
    Good luck and Happy Pouching (one of my many stoma-isms)!
    Nora Sammon CWOCN NYP Weill-Cornell
    P.S I’ve been writing to Dr.Oz regarding an ostomy segment on his show, I’ll keep you posted! Maybe you’d consider sharing your story on T.V??

    • Jess
      Posted at 15:48h, 14 May Reply

      Nora,

      Thank you so much for sharing my story!
      And yes, I’d be more than happy to share.

  • Kristine Nguyen
    Posted at 04:10h, 15 May Reply

    I am so happy to have met you Jess. I really haven’t gotten the chance to spend as much time with you as I would like and that makes me really sad. Please continue to stay strong and healthy and whoop that Evil Dragon’s ass. I’m sending lots of g-little love your way!

    • Jess
      Posted at 00:18h, 16 May Reply

      Love ya, G-Little

  • Shannon
    Posted at 05:23h, 15 May Reply

    love you Jess, anything you need, I’m only a phone call or Skype click away. Your sisters are always here for you <3 xoxo

    • Jess
      Posted at 00:18h, 16 May Reply

      Thanks Shannn

  • Paul Bonar
    Posted at 21:38h, 17 May Reply

    Hi Jess,

    I’ve read ur blog and am sorry that u r going thru this again ๐Ÿ™ but I do kno what it’s like to be a 23yr old being stuck in hospital with Chrons and it sucks, but I got thru it and writing ur blog will help u thru it, I myself wrote some poetry during my own time of hell! and it helped me thru it. Unfortunately, I have another reason to empathise with u is that I could have chrons again, I am waiting to be called for a scope and a MRI as well, so keep me in ur thoughts and prayers as u are in mine.

    Stay strong and remember u r not alone!

    Paul B

  • Denise Browning
    Posted at 17:08h, 19 May Reply

    Hi Jess,
    I found your site through a sorority sister I’m friends with on Facebook. As a sister and a fellow Crohnie, I want to point out that there are many differences between this new flare and what you faced as a child. They are making progress with new medications all the time! This time, there is no prolonged period of “trying to figure out what is wrong” during which the flare continues to do damage. This time, you knew what was happening and you got some meds to start getting it under control right away. I’ve been in remission, off meds, for over 5 years now but am always alert and aware to how things are feeling so I’ll get on meds right away when necessary. Don’t live in fear of what might happen- keep living your life- get through this one ๐Ÿ™‚ There are better meds and more options now than there were before and you know the dragon, so you know how to fight the dragon!

    You are absolutely not alone.

    Loyally,

    Denise

    • Jess
      Posted at 01:55h, 22 May Reply

      Thank you so much, Denise! Glad you’re doing well! LIEP

  • Maxine
    Posted at 18:43h, 24 May Reply

    Hi Jess,

    I got in contact with you on fb prior to my iliostomy surgery I had on May 2nd. I was fortunate enough to have Rob Hill come meet and me in the hospital before my procedure, and he says he knows you quite well! He was a great source of encouragement and reassurance to me about the whole thing, and I’m happy to say I am starting to feel much better post surgery! My energy levels changed like night and day, it’s incredible.

    I’m writing you after reading this blog post because I only ended up needing the surgery after I had stopped responding to Remicade and all my other medications. I was on Remicade for two and a half years before developing an abscess and a fistula (and later being re-diagnosed with Crohn’s, not UC).

    I was just wondering if you have the BioAdvance program in Ontario? I was set up with it and a BioAdvance coordinator who was INCREDIBLY helpful to me for getting me coverage for those astronomical medical expenses! and also for arranging my infusions abroad while I was traveling.

    I really hope the new treatment helps you. For me my first infusion put my symptoms in remission in less than 10 hours! A miracle drug in my opinion. I was 90lbs and getting weaker all the time receiving numerous blood transfusions during my longest hospital stay (over 9 weeks). So I was really fortunate that Remicade worked for me so well, unfortunately not for too long though.

    If you have any questions concerning the drug or you’re curious about the side effects or wish to get in contact with my awesome coordinator Robin, I would be more than happy to pass along any information.

    Best Wishes!

    Maxine

    • Jess
      Posted at 20:03h, 31 May Reply

      Hey Maxine! I read all about your story. I’m so glad you had surgery and that you were able to meet Rob. He’s such a gem.
      I have been set up with Bio-Advanced and have already had 2 treatments.

      Thanks so much for reaching out!

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