Possible future terminal ileum resection and stoma

[aarecchi]

Hi there! My name is Allie and I was diagnosed with Crohn's disease a little over a year ago. My terminal ileum is effected by my disease and when I have flare ups this is the area that experiences the most inflammation. A few months ago, while being weened off of steroids, the inflammation got out of control and I was very close to needing a resection. We managed to stop the inflammation with the addition of Humira to my treatment regiment along with my pre-existing use of Imuran. Right now my symptoms are under control with flares lasting only a day or two at a time.
At the time that my doctor was considering surgery, I was told that with the resection I would probably not need a stoma. However, I have not been able to stop thinking about the possibility that I may one day need this surgery and require a stoma. I want to prepare myself for all the possibilities and am hoping that some of you with stomas may be able to tell me about your experiences. How has having a stoma affected your everyday life, including functionally, socially and romantically. I must admit that a big fear of mine is being single at the time that I need the surgery and never being able to find someone to accept me for who I am (stoma and all). I know I may be jumping the gun a bit, but these are things that I worry about on a regular basis. I'm too nervous to ask my doctor about the specifics and figured this was a much less intimidating way to approach my questions.

 

[brendas]

It is scary to think u may need one. I had one for 6 months .I honestly felt the best with it. No meds . Meds always make me feel crapy. I have terminal illium crohns also. With many complications. None of the meds agree w me. I am honestly thinking of getting a permanent one.

 

[SumCiA]

Hi Allie, I had a resection of the terminal ileum several years ago. My surgeon at the time also said that a stoma should not be needed. It wasn't. But until they are in I suppose they never know what they will find. If your disease is solely in and around the terminal ileum then I really don't think you'd need to worry too much about a stoma.

Your situation is similar to mine before I had my surgery. Feel free to ask any questions you may have.

All the best.

 

[brendas]

Hi Allie, I had a resection of the terminal ileum several years ago. My surgeon at the time also said that a stoma should not be needed. It wasn't. But until they are in I suppose they never know what they will find. If your disease is solely in and around the terminal ileum then I really don't think you'd need to worry too much about a stoma.

Your situation is similar to mine before I had my surgery. Feel free to ask any questions you may have.

All the best.

Mine is in the terminal ileum. Had resection. Crohn's came right back. meds not helping

 

[fuzzy butterfly]

Hi Allie mine in ileum also had resection march 2014 with stoma. Felt great after it, got my life back. Loved the stoma ye a bit tricky to get the right products for me . Once i did tho it was ok. I was n still am single have been for donkeys years tho lol.. I did wonder about if i met someone what their reaction may be. I think tho that if they really like u it wont be an issue. You can get nice covers for the pouches so they look quite pretty n you feel nicer too.
I found that once i had recovered from the surgery i could do all i wanted to do , with no problems really. I felt more confident in myself n my ability to do things n go places again. It has really helped to get in remission and tho i had it reversed in feb this year and still good btw. I have also just changed jobs after 11yrs at same place. I feel good enough to risk a new challenge,as i have been well for 20mths ish.I would not hesitate if i needed another stoma even a permenant one. On no meds except stomach acid protector. Painkillers for joint pain.
Hope this helps

 

[fuzzy butterfly]

Love n support to all. May your good times be plentiful n bad times rare. hugs..

 

[SumCiA]

Mine is in the terminal ileum. Had resection. Crohn's came right back. meds not helping

Mine returned after my resection within a year. Clinically seen during colonoscopy. It has gradually gotten worse over the years and is now producing symptoms as well as narrowing again. Now on Humira so will see how it goes.

For a couple of years I decided to stop taking meds as I was feeling pretty good. In that time though the crohns was silently doing its thing at the ileum again. In my case I see the meds as a means of delaying the inevitable, another resection.

Have you tried any biological meds? Humira, Remicade etc. It's too early for me to say if they are working but generally they are seen as the best option meds wise.

 

[brendas]

Hi Allie mine in ileum also had resection march 2014 with stoma. Felt great after it, got my life back. Loved the stoma ye a bit tricky to get the right products for me . Once i did tho it was ok. I was n still am single have been for donkeys years tho lol.. I did wonder about if i met someone what their reaction may be. I think tho that if they really like u it wont be an issue. You can get nice covers for the pouches so they look quite pretty n you feel nicer too.
I found that once i had recovered from the surgery i could do all i wanted to do , with no problems really. I felt more confident in myself n my ability to do things n go places again. It has really helped to get in remission and tho i had it reversed in feb this year and still good btw. I have also just changed jobs after 11yrs at same place. I feel good enough to risk a new challenge,as i have been well for 20mths ish.I would not hesitate if i needed another stoma even a permenant one. On no meds except stomach acid protector. Painkillers for joint pain.
Hope this helps

Hi allie, had u failed on alot of the medications? How long have u had crohns?

 

[Naik]

Hi , I had surgery of the ileum which was partly removed,in 2002 then was fine till 2011 , but some of my habits like spicy food and smoking and irregular medication got me back , to a flare up .now since 2011 have tried remicade and recently switched to humira , all is good but bowel movements ,and weight loss is where my problem is , was doing some research and feel that probably food is the only way Crohn's can be controlled.

 

[fuzzy butterfly]

I give up smoking. I feel it has helped greatly. ☺