Advice on colitis & ostomy reversal with lingering control issues?

I've had colitis since 2011 which has caused many embarrassing accidents over the years. In 2017, I was diagnosed with ovarian cancer which had spread to my sigmoid colon. I woke up with the bag. After chemo and hysterectomy, in 2017 all has been clear with cancer. I was considering a reversal but am afraid the colitis would still cause me trouble and no control. Has anyone else had this problem?

Sorry, Estrogen.  I only had experience with the big C part.  My impression from your writing is that you're reasonably comfortable with your present condition.  I'm not sure  I would endure the trauma of more surgery with the risk of other problems down the road.  Hopefully you'll get better comments from more knowledgeable folks.  Wish you the best.

Mike

Hello estrogen. 

You are quite rigfht to consider this proposition very carefully. I was given the option of reversal but refused on the grounds that the problem I had pre-stoma would probably return. --- As you say - with consequential 'no control'.  I prefer the stoma to the alternative. 

- In your deliberations, you might also like to have a look at past posts on this subject in the 'Collections' section. 

Best wishes

Bill

Hi Estrogen, if you have a colostomy, maybe look into irrigation. You might not even have to wear a bag. Ask an ostomy nurse or your surgeon for details.

Estrogen said: "I've had colitis since 2011 which has caused many embarrassing accidents over the years. In 2017, I was diagnosed with ovarian cancer which had spread to my sigmoid colon. Woke up with the bag. After chemo and hysterectomy, in 2017 all has been clear with cancer. I was considering a reversal but am afraid the colitis would still cause me trouble and no control. Has anyone else had this problem?"

Hi Estro!

Interesting dilemma you've got there. I'm thinking that just having colitis and losing just your sigmoid colon doesn't normally result in someone getting an ostomy. So what am I missing here.....was more than just the sigmoid portion removed? Was your colitis under control with the current meds available before you got your ostomy? Had you tried all the meds available for colitis before you got your ostomy? Have you looked at what new meds are available for colitis since 2017? Have you consulted a number of gastroenterologists about your reversal question? You also didn't mention how happy/satisfied you are with your ostomy. Are you having any issues with it currently?

My personal opinion is I'd say you're a bit premature in regards to making the reversal decision until you've checked the current state of meds and sought the advice of those up to date on this stuff. Sounds like if you can find a med that controls your colitis then your control issue will also go away.......and a reversal might make a hell of a lot of sense. But then again..........it depends on what you find out. Let us know.......I'm curious to hear what you decide.

Regards,

Bob

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

Thanks for the reply. I had no luck with any of the medicines prescribed for colitis. Nothing controlled it, not for lack of trying. I'm not sure what else was removed, all I heard was sigmoid colon. I will have to go back and look at my medical records. I was in the hospital and out of it at the time. My biggest concern is that with the bag I have some control over accidents etc. I was told by 2 Dr.s that there was no guarantee the colitis would be gone. That is my dilemma. So far having the bag doesn't bother me much but it sure would be nice to have it gone. I'll keep you updated on what I decide.  

Estrogen, have you tried any of the following two meds?

Stelera

Humira

These two meds have shown the most promising results.

I use Stelera and it works 100% for me.

Let us know.

Hi, Estrogen.

I've had colitis, but not cancer.

After almost 9 years, my colitis was so bad and widespread in my diseased colon that I ended up in the hospital with C. diff. Post-antibiotics, I decided to have my entire colon removed and now have an ileostomy. My worries over incontinence are over. I consider my second chance a blessing, and having a bag attached to my abdomen is much less of an issue than being up 22 times to use the bathroom in one night (at the worst of the U.C.). Deciding to have the proctocolectomy with end ileostomy surgery was emotionally tough for me, as I had worked long and hard to find my personal "silver bullet" or cure, certain I could avoid surgery, offered at the time of my diagnosis as "the only cure." Ultimately, my enteric brain decided to fight every attempt I made to get it back to health and full function, and when it was done, it was DONE.

With "no guarantee that the colitis would be gone," it sounds as though you still have at least part of your colon and/or your rectum in place, as colitis only occurs there. But, you are currently asymptomatic with the U.C., correct? If you remember your specific symptomology, you can consider keeping your ostomy and perhaps put off a second surgery (ostomy reversal) until you experience signs of U.C. again. With blessings, you may never need that second surgery. :) With the ostomy, if your colon develops ulcerations again, you could have "just" a second surgery for a proctocolectomy, rather than go through a reversal (#2) and then possibly a proctocolectomy due to recurrence of U.C. (#3). I hope that all makes sense.

Pay attention to your body's responses, as it doesn't lie. Stay in contact with your medical teams, and do what you're able to prevent the recurrence of U.C.

Only you can decide what your priorities are, and it sounds like you have time to consider them.

Yes, please let us all know what you decide. Thankfully, it sounds as though there is no rush to make that choice now.

Be well.

Lily17