Will Crohn's Disease Affect Me After an Ileostomy?

I had an emergency ileostomy in March this year.

This was due to a blocked bowel caused by Crohn's disease.

As I now have a stoma, does this mean that the Crohn's will no longer affect me?

G-Day Bilbo, it depends on what you had removed. Can you fill us in with more details? Regards, IGGIE

Hi IGGIE

As I understand it, a section of my bowel was removed and I have a loop system stoma.

I was given very little information on leaving the hospital.

I ask because if I am still carrying Crohn's around with me, is there any point in having a reconnect?

Hi BB,

The answer to your question is no, it doesn't mean Crohn's will no longer affect you. There's no cure for Crohn's, including surgery. Usually, Crohn's is almost never localized but affects the entire digestive tract... it just takes time. That's not to say it will come back with a vengeance... but to say positively that it won't come back just isn't correct. I had multiple bowel resections because of Crohn's, and it kept coming back and affecting more and more bowel. Crohn's also has a propensity to form wherever bowel is rejoined surgically (at the site of the anastomosis), which any good surgeon would know and will advise you of before you proceed to get reconnected. Sorry, I don't have any good news, but Crohn's just sucks... and I'll leave it there.

;O)

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

So does that mean as long as I have a stoma it will not affect me?

I am in the process of getting some travel insurance and need to know if I still have to declare the Crohn's.

Hi BB,

No, Crohn's can reappear whether you have a stoma or not. There are a few newer meds out there for Crohn's these days that weren't around when I had it, so depending on the type of Crohn's you had, it may be manageable. But I would assume they tried you on those drugs before they removed any of your bowel, so I'm not sure what happened there. Crohn's isn't easy to detect until you're fully involved, and they don't know how it spreads through the bowel, so unless you get scoped regularly (which is highly recommended), it can come back and you won't know it until it's too late. Check your C-Reactive Protein (CRP) when you have bloodwork done, as that's a good indicator something is amiss, and of course your white blood cell count (WBC).

On the bright side, having a stoma gives your gastroenterologist easy access to your small bowel that he wouldn't otherwise have if you were still connected. Colonoscopies and endoscopies can't reach the middle or end of the small bowel, but having a stoma solves that. So having a good look around and getting biopsies from your small bowel will be key to making sure Crohn's doesn't reappear.

I don't know anything about travel insurance, either in my country or yours, but if they were to ask a doctor if you still had Crohn's with your stoma, the doctor would say yes. Again, because Crohn's can't be cured, so you'll always be considered as having it, even with no active symptoms. I surmise that would mean you need to continue to declare the Crohn's, but check with your doctor to be sure.

;O)

I too have severe Crohn's Disease and had an ileostomy at the end of June. Crohn's affects anywhere from the mouth to the anus, so you can't make a blanket statement that once your colon is gone, you'll be cured. There is always the chance that other areas could be affected. That being said, I absolutely suffered with my Crohn's. I had two bowel resections to remove areas of the colon with severe scarring and strictures but still suffered from the symptoms of many bowel movements at all hours of the day and night. I tried 6MP, Humira, Stelara, Inflectra, and most recently, Rinvoq with limited success and never really got to remission. My Crohn's affected every inch of my large intestine and the anastomosis, and I had a few years where I would get anal fistulas that were very painful and required the placement of setons by my colorectal surgeon. I was told by the team of colorectal surgeons that individuals such as myself who have multifocal strictures in the large bowel, anastomosis inflammation, and anal fistulas (the trifecta as they referred to it) see a great outcome after an ileostomy as their data showed. I still suffer from joint inflammation, but now have that under control thanks to my rheumatologist and taking sulfasalazine.

I can say that after the ileostomy, I no longer have the harsh gut pains I had with my large intestine. That pain and discomfort is just... gone. I don't have any urges to run to the bathroom for a bowel movement, which is a nice change of pace. I haven't had a great experience with having a bag so far, but I'm optimistic I'll get it figured out. I didn't have a choice in my surgery. It was have an ileostomy or die, so it was an easy decision when you really only have one option.

After my surgery, I've been in touch with a gastroenterologist at the Mayo Clinic for the next steps as far as medication goes. He said that three months after my surgery, I should have labs done with CRP and fecal calprotectin to measure inflammation levels in the small bowel. Repeat this at 6 months if there is little/no inflammation and have an ileoscopy (colonoscopy through the new stoma). If there is no inflammation, I can stay off of Crohn's medications.

It's a life-changing procedure, but there are a lot of resources out there, and hopefully, you have access to a good hospital/GI doctor that can answer any questions you may have.

 

I wish you the best of luck. Sorry for the lengthy response, but I hope it helps.

Josh

Thanks for the info.

This is such a great place to get information that I can understand.

I had my ileostomy 6 months ago due to a blocked bowel caused by Crohn's that I didn't know I had.

I am making a good recovery, back on my bike and feeling good. I have accepted my stoma (Bilbo) as part of me. I have had all the usual dramas along the way. Something that did affect me was I contracted polymyalgia rheumatica, which was very painful. At first, I thought it was due to overexercising as my joints were so painful. I am now on medication that is working well. Learning about my condition, especially from this forum, has been so helpful.

I consider myself extremely blessed that I live in a beautiful part of the UK where I get excellent health care and meds for free and feel so much for others that struggle to get treatment.

I have a meeting with the consultant later this week and am looking forward to being able to get back to my travels.

Thanks again, all.

Chris S (Bilbo)