What was your experience with a temporary ileostomy?

Hi friends, I currently have a loop ileostomy due to significant Crohn's inflammation all throughout my colon. I have had my ostomy since this past March, but I feel I have had many complications since then that are making the idea of reversal seem further and further away. Every single day since my surgery I have lower abdominal pain, and I pass bloody mucus through my rectum at least 3-4x/day (now it is starting to increase to 6-7x/day, with a pretty large increase in pain). We've increased my infusions to monthly and paired them with an oral biologic agent. I'm also dealing with some increased pain/inflammation around my b**tyhole. My recent colonoscopy indicates that all of this is partly due to diversion colitis and partly due to disease.

I'm curious to see if others who have/had temporary ileostomies had similar complications, and if these seemed to get better or worse with time?

Any chance your providers are at Cleveland Clinic?

I had a subtotal colectomy, also called an abdominal colectomy. But they don't know what to blame for attacking the nerves in my colon other than autoimmune. I was having bleeding up until the day of my colectomy, but my medical team was hopeful that would resolve once they removed the colon, and so far, so good.

Do Canasa suppositories help with the discomfort/inflammation at all?

I'm actually a University Hospitals patient, and at this point, I've had no colon resection, but I'm sure that would solve many of my problems.

Did you have an ileostomy before the colectomy? And with how much pain I'm having down there, there's no shot of putting anything up, so I currently can't try suppositories.

The colectomy & my loop ileostomy were done at the same time.

Hello Ohio! Welcome, SpecialK. Good to have you here, and I'm sure you will find answers to whatever questions are asked. So ask away.

I recall being 25 years old when I was diagnosed with UC.

This seems to be the medium onset age for IBD.

And if you don't respect the diagnosis, understand it, abide by it, it will haunt you the rest of your life with other symptoms.

It seems you do have a better handle on it than I did at your age. Good for you, girl.

The good thing is medical science has improved greatly, and being young, your recovery is quicker.

In my case, I had all the meds possible to control the flares.

Prednisone was and still is the only drug that knocks out my inflammation. Believe it or not, I have been on it daily since age 25 and can't stop taking it.

Yep. 39 years. However, in 2016 my colon was like you said yours is now. Completely inflamed. Prior to this, higher dosages of steroids were used, suppositories were used... foam... steroid enemas yielded no improvement.

I bled so badly I needed transfusions. I thought there were more medications on the horizon, but when the colon is that bad, game over.

Wait, it gets worse.

After removal of the diseased colon, I continued to bleed 7 more years. We had hoped for a reversal as a temporary ileo, but no way now. The rectum had Crohn's and had to be removed.

Makes you think the rectum was the culprit all along, right?

Was a mistake made in 2016?

High hopes diminished. 2023, Kenn butt surgery. Now, almost a year from then, healed, with a permanent ileo, I can honestly advise to get this done sooner than later. Proctolectomy.

As someone here precisely mentioned... we are all on the same ride but sitting in different seats.

Someone also noted no two people are the same.

A completely inflamed colon so early in life makes you think of a full-on attack of the disease. The medication is there, but at what cost to your health later on?

The protocol is to save surgery for last. Medications... plenty... side effects... plenty and unknown...

It's also been said the medications are worse than the disease.

I went from temporary to permanent in 7 years, and the ride sucked.

You will get information from many of us who've been there... had it... got rid of it... and enjoyed a better life.

I hope this helps. It's my story. It resembles other stories out here. Blessings, kiddo. You got this now.

 

 

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

Hi,

Really sorry to hear you are going through this. It's really difficult and can wear you down emotionally and psychologically, but keep working with your medical team and a solution will be found.

Have you spoken to your medical team about the constant pain and passing of blood? It sounds like the inflammation hasn't abated and that your body may not be responding to the biologics as the medics would have hoped or expected. You mention you had your loop ileo formed in March, that's 6 months of being in constant pain and no improvement. What have your medical team proposed as a plan going forward? Have they spoken to you about surgical options as a possible treatment?

Try Calmoseptine ointment for your sore bottom. It saved my life at times. 🙏

Hi David,

Yup, I'm in constant communication about my pain. We decided to give Remicade more time because the levels of it in my blood have been low, so the hope is once they are therapeutic maybe it'll work more. But I'm unfortunately starting to run out of patience.

We have talked about other meds we can try, but at this point it's hard to be optimistic about any medication working, especially since I'm becoming less responsive to even prednisone. And knowing it would solve so many of my symptoms, colectomy is not heartbreaking for me.

I’ll run to the store to get this today - thank you!!

I just got my colostomy in late July. Every time I see my surgeon, he reminds me this is temporary, and he expects to reverse it as soon as possible.

They thought I might have IBD last year. I had my biologics, which helped but then quit helping. I saw a new (more experienced) GI this summer, who said probably not IBD, but if it was - Crohn's - but not likely, maybe diverticulitis. I had a colonoscopy, had a perforation, and the surgeon said diverticulitis. Still no official diagnosis, but I have had no problems with my colostomy and the remaining half of my colon. 

It makes me sad to hear you still have bleeding and pain. I hope they can find a combination of medications and treatments to help you soon. 

You're most welcome! It can be difficult to find at times, but I've had the most luck at Walgreens and DrugMart / Meijer sells it too.

Sounds like you have a really good handle on your situation and I really hope things start to take effect and work out for you!