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32 years of Crohn’s…Ileostomy at Age 48

I’m a “crohnsie” of 32 years…more than half my life. Diagnosed at 16. With ulcerative colitis showing up now and then. But I’ve been blessed to have had three successful pregnancies and three beautiful healthy children.

I finally ended up with an ileostomy in May of this year with my 5th obstruction in five years since my last bowel resection in 2011. So it was time to just call it and get the bag.

It’s a tough learning curve and adjustment even from a nutritional and hydration standpoint. It took a week post surgery because my intestines had an ileus for a week after surgery and basically didn’t want to wake up. So I could not be on anything but TPN for nutrition. By May 22 thank God the NG tube was out, real food was starting and that catheter in my stoma had jump started my intestines to wake up.


Home a week, but lost five pounds in five days. Severely dehydrated…so three days back in the hospital to make sure I didn’t have renal failure. Going home today and drinking lots of rehydration formula and/or other electrolyte beverages.

Thank you Aimee Rouski and many others for being so brave to share your story. The UK Crohn’s and Colitis foundation seems to have a lot more people that are open about it. I think the people here need to not panic or freak out when they see someone with an unusual apparatus for a disability.

I fully plan to continue to wear bikinis, show my tattoos (which covered prior surgery scars) and proudly wear my bag as a badge of courage because anyone fighting any illness to lead the life they want to have ought to be admired, respected and applauded.

These invisible illnesses such as Crohn’s and other auto immune diseases make us suffer plenty. But it’s not obvious to the outside person just how serious these illnesses can be or what people have gone through or will.

Stay strong. You’re beautiful. Be a fighter.

We have no other choice. #crohnswarrior #crohnsdisease.

We are not defined by our illness unless we let ourselves be.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Ginny
    4 months ago

    Hello, I am new to this site. I’ll be turning 50 in a month and have been dealing with chronic pouchitis for 22 years, yep 22. I’m a full time working Mom with a wonderful and supportive husband and almost 15 year old son, so I am incredibly blessed.

    My GI doctor told me yesterday I have got to have an end ileostomy and he’s been telling me that for 5 years. So here I am hoping to gain some information.

    I was diagnosed with UC at 19, had my colon out at 28, thinking I’d be “cured”….yeah right. Ended up having a 2nd surgery due to peritonitis (so we know there was a leak somewhere) and then a 3rd surgery due to small bowel obstruction. Later on in life diagnosed with Crohn’s and doctor said was probably that all along.

    Since then dealt with chronic pouchitis, DILE (drug induced lupus erythematosus) due to Remicaid infusions, arthritis, chronic anemia due to blood loss, spontaneous pneumothorax due to weight loss and Hashimoto’s thyroiditis. My immune system is just wacked. I’m currently on Entyvio which helps with joint pain but has done nothing for the pouchitis, not a thing. I get regular iron infusions due to chronic blood loss but that is like putting water into a bucket that leaks.

    I’ve taken every antibiotic known to man, and they no longer work or the side effects have made it worse to take them than not. Every enema, just every kind of medicine you can think of. I’ve taken enough prednisone to kill a herd of cows for sure.

    It’s not that I mind the ileostomy if it will improve my quality of life but one surgeon said it would be too risky given all the other surgeries to take out the j pouch. He would just unhook it and then give me an end ileostomy. A 2nd surgeon was planning on taking it out. So now I am going to a 3rd surgeon to see what he would do.

    I’m scared more of the surgery than anything since I remember well 22 years ago how awful the colon removal surgery went and the subsequent surgeries. I’m also scared of leaving the j-pouch in, worried my body will still continue to attack it.

    I try to eat well and exercise but don’t have much energy at all due to the chronic blood loss.

    So reaching out to my online friends to see if anyone has any valuable information. I’m so sick of this disease and it is having a direct impact on my mental health. I can deal with pain, going to the bathroom 10-12 a day, but being tired ALL the time and irritable with my family and never wanting to do anything I can’t deal with.

    Blessings to all and thanks in advance for any information.

    Ginny

  • Pam.Kingsland moderator
    4 months ago

    Hi @ginny, Thank you for having the courage to share your story. I’m so sorry to hear all that you’ve been through over the years, but I’m glad you’ve found our community! I know there are many here who can relate to your story. It’s so frustrating when you’re being told this, then that, then something different. If you’d like, I’d love for you to share your story in our ‘stories’ section, more people are likely to see it there and give you input. Or, you can post any questions you might have in our Q&A section (again, more people are likely to see it there).

    https://inflammatoryboweldisease.net/stories/
    https://inflammatoryboweldisease.net/q-and-a/

    The number one, most despised symptom that I hear about all the time is fatigue. I definitely think there are a few things that can help with fatigue, if you’re not already trying them! This article maps out some helpful tips- https://inflammatoryboweldisease.net/living/living-with-fatigue/

    I also wanted to share some articles and experiences that I thought might be of interested!

    https://inflammatoryboweldisease.net/answers/strategies-ibd-fatigue/

    https://inflammatoryboweldisease.net/living/fatigue-motherhood/

    https://inflammatoryboweldisease.net/q-and-a/manage-ibd-related-fatigue/

    Please keep us updated on how you’re doing! We’re all here for you while you go through this! Keep pushing through!- Pam (team member)

  • thedancingcrohnie moderator
    7 months ago

    You have had quite a journey, but I love your positivity and strength. It is truly inspiring! Thank you for sharing your story, you will be touching so many who suffer with IBD. Press on, warrior!

    Always dancing,
    Elizabeth (team member)

  • Dana
    3 years ago

    Hi crohnswarrior67!

    Thank you so much for sharing your story with our community, we are so happy to have you here! Your positive attitude and outlook on life is very valuable! I am so happy to hear that you are doing well!

    Absolutely wear those bikinis proud and show off your beauty! 🙂

    Keep smiling!
    Dana (InflammatoryBowelDisease.net Team)

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