Reversal Possibility After Colectomy and Bleeding: Need Advice

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queserasera
Sep 05, 2018 12:59 am

Hi! I am hoping you guys can share some insights about how likely a reversal might be for me...

I was diagnosed with indeterminate colitis in 2005 at age 16. I had relatively no flares between diagnosis and 2015/2016 when I required emergency surgery for a colectomy. I have an ileostomy now (which I hate) and have been hoping to have a reversal done. I've been on Entyvio since surgery. I've been experiencing more and more frequent rectal stump bleeding and urgency the past 6 months or so.

I had a scope today, ileostomy and small bowel look good (no inflammation). However, the "sigmoid" scope was too painful to complete. The report says there was spontaneous bleeding in the anal canal and tons of inflammation. The doctor suggests I stop taking Entyvio - I assume that means I have failed this drug as well?

Has anyone experienced this before reversal? I am not sure I'm still a candidate for reversal given this bleeding. Is anal canal bleeding different than rectal bleeding (anatomy is not my strong suit)? Any advice is appreciated.

Prior to surgery, I had tried Salofalk, methotrexate, imuran, suppositories, cortifoam, prednisone, Remicade (developed severe allergy to anti-TNF), and Stelara.

sherileo
Sep 05, 2018 3:02 am

I have a similar predicament in that all of my experience was close to yours, except I did not take any of the drugs at all. I've had a lot of bleeding from my rectal stump, and a scope has indicated that most of my remaining colon is not spared from the disease.

My first of 2 "reattachment" surgeries is in November this year, and my surgeon said we can "try" to make a j-pouch but he has little faith that it will work, or that it may work for only a couple of years before failing. He also said when he opens me up...it will be a "gametime" decision and a reattachment may not be possible due to the disease progression.

I'm in the same boat as you, I'm at the mercy of my body's willingness to cooperate. It's horrible, I'm sorry you have to go through this, I'm sorry anybody does.

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Immarsh
Sep 05, 2018 3:52 am
Hi, my name is Marsha, and I have had my ileostomy for more than 50 years, since I was a teen of 15. After nearly 4 years of treatment for ulcerative colitis, *(I was out of school, on home instruction, when I wasn't in the hospital...which I was, for months at a time). I didn't know about the surgery...until the doctors virtually gave up. I was too sick, bleeding, had severe reactions to steroids, and at 15 had osteoporosis and degenerative disc disease. I adjusted to the ileostomy very well and was glad to get back to school and to real life. But the doctors had left the rectal stump (which was still diseased and bleeding) and anus intact, hoping that if I healed, I could be reconnected "some day". By the time I was 19, I was sick of all the exams, medications, treatments, and doctor appointments, and "begged" to have the final surgery....total colectomy. My parents and doctors objected and made me wait a year. But by then, I knew I never wanted to take the chance of the disease recurring. I am 70 now and have never regretted my choice. My ostomy allowed me to live a full and relatively pain-free life. I dated, married, had two children....sadly both of whom developed IBD (ulcerative colitis/Crohn's disease). They have been lucky that their conditions are able to be managed by medication and diet. My younger son (now 43) is vegan and has not needed regular medications for about 5 years, except for the occasional flare-up. Both of them were on many of the same medications you were on. For some people, the rectum (about 5") heals, and for others, it doesn't. You both have to decide if a life of pain, medication, and uncertainty is better than having the ileostomy. No one "loves" the change....but accepting the reality and adapting to it...takes time. I've done everything in life that I wanted to do but would not have been able to do without the surgery. From my experience, and from the people I know, those with J-pouches can continue to have issues and may have it fail and need to have the ostomy further down the road. One "friend" wished she'd never agreed to the J-pouch since she leaked all the time. She was sorry she didn't stay with the ostomy. I wish you both the best of luck in making the decision that's right for you. Marsha
sherileo
Sep 05, 2018 4:55 am

Thanks for that insight! I want to try it if I can, because later I will always have the option to have a permanent ileo...but I also trust my surgeon's judgment this time around (I changed surgeons).

Jenerprise
Sep 05, 2018 11:44 am

Good morning!

I had a reversal for a colostomy about 10 months ago. I had one as a result of a botched robotic-assisted hysterectomy. I had a little under half of my sigmoid removed and a few inches of jejunum. I had a colostomy for about 6 months.

I had a great second surgeon that did the repairs and colostomy. I would not have moved forward with a takedown unless he had been confident.

Keep in mind, there was no bleeding or any type of disease or other issues with my bowels when I had my takedown. Today, it is not the same. I am doubtful it ever will be. Don't get me wrong, I am healthy and in a good place, but things don't work the same, and there have been issues with fecal impact, etc.

Make sure you are super confident in your surgeon and are ready for the process. It isn't easy always and requires a lot of time and patience. I would never have tried it unless I felt 100% strong enough and ready.

Best of luck!

Jen

 
How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister
Seasoned Osto
Sep 06, 2018 8:19 am

Thinking that many of us can learn so much more about our health. Natural remedies and careful eating have helped me so much. Probiotics, aerobic oxygen, there are so many great things out there, including energy healing. You will be amazed at what can be healed.