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M
Hi! Brand new to the group. I am so grateful for this type of support but after reading many posts my mind is whirling. I am a out 5 weeks post reversal/takedown from being diverted with a temp iliostemy as a result of Stage III rectal cancer. My rectum was removed and a j pouch was created. Most of the colon is intact. 9 rounds of chemo and 6 weeks of radiation, a bout of colitis and almost 11 months to the day for initial surgery, reversal. Boy was I naive about all the things that could go wrong. I was aware of the potential difficulty with the "system coming back on line", though I didn't truly understand those challenges. Since the reversal I have had a recurrence of the colitis which I developed after radiation,(it was virtually gone by the time of the reversal), have just discovered that I have a rectovaginal fistula and am passing stool about 20-30 times per day. My stools are small but formed though I am mostly incontinent. I had some sphincter menometry done prior to surgery and it showed low to mid level control.
So many questions... Is it possible that I will gain more control and be able to "hold it" more over time? I thought that once the stools were formed that they wouldn't just slip out. I just has blood work done yesterday to determine how much inflammation is left in the colon. If it is still significant, my surgeon is going to start me on prednisone. I will be scoped next week to find out the exact location of the fistula which will determine the surgical procedure.
I was so excited to have some of my life back going into the new year but now, more challenges. Is it much to early to throw in the towel and start discussing a permanent colostomy with my surgeon? As I mentioned, I am "going" sometimes every 20-30 minutes and although very small, mostly not making it to the toilet.
Any encouragement or suggestions would be appreciated. By the way, I am taking Imodium, Lomotil caused me bad belly aches and an up to 2 times per day of Metamucil. Thanks peeps for any advise.
You all take care.

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GinLynGinLynMember
Maureen:

Welcome to the group, I hope you are able to find some support here.

I am sure there are others who are way more knowledgeable than me who can answer your questions better. I am confused about you having a J-pouch with a colon, I haven't heard of that before. My understanding is that as long as the colon -- or any part thereof -- is present, you run the risk of colitis flare-ups. BUT as yours was related to the cancer and treatment, I could be completely wrong. Perhaps worth asking about, however?

As to how many times you go, that generally and usually does slow down. If you're having an active colitis flare that increases output and decreases control. With a healthy J-pouch many of us get down to 7-8 times a day and some down to 4-5! With complete control, I might add. So don't lose hope about that yet; it does take time for the pouch to adjust and, as I said, active colitis will throw that off further.

The R/V fistula: there are quite a few of us here who have them, some who have tried surgical options, some who have not. They are tricky little buggers to treat and get rid of, but please don't let that discourage you. Just know you are not alone! My best advice is this: investigate ALL treatment options available and ask LOTS of questions, then make the right decision for YOU.

Hang in there,
Gin
GinLyn
M MaureenDMember
Thanks so much for your kind response Gin. I appreciate your words of support.
As for the j pouch and the colon, most of mine with the exception of the sigmoid portion, is intact. My rectum is gone as that is where my polyp/tumor was. The jpouch is intended to serve as a reservoir since there is no longer a rectum for holding stool.
Prior to the discovery of my rectal cancer, I had healthy bowel function and no history of colitis. It is thought that the colitis occurred because of irritation from radiation. As I mentioned,it had cleared up prior to my reversal surgery but flared up again about a week or ten days after. My surgeon feels that it will resolve itself after the bowel settles down.
You mentioned some people choosing surgery to treat a RV Fistula, others not. Are you suggesting that some people just live with them? I am aware that they can sometimes heal themselves, though not often. I would love to hear more feedback on that subject.
Also, what suggestions to you have to best slow down the frequency?
Take care!
Maureen
M
Scott FScott FMember
I'd suggest trying kegel exercises frequently, to try to regain your sphincter tone. You might also get some benefit from Imodium or Lomotil. Things should also continue to improve as time passes - it's still fairly early days. It can take quite a while for radiation effects to heal.

There are many ways to treat fistulae, and it may be best to start with the least aggressive approaches, since they have the fewest consequences. Surgeons will tend to think mainly about surgical treatments.
Scott F
P PluotMember
Part of the healing period is that the j-pouch has to stretch a bit in order to fulfill its role as a reservoir. A lot of surgeons recommend trying to "hold" your BMs a bit in the beginning to accomplish this stretching, so if you aren't able to hold at all due to sphincter weakness, perhaps that's compounding the issue. I'll second Kegels. You might also benefit from pelvic floor physical therapy.

Fistulae caused by IBD tend to be harder to treat with surgery, so there are a few members here who are living with RV fistulae. It's not unheard of.
P
M MaureenDMember
Scott and Liz, thank you both for your comments and suggestions. I considered myself to be fairly well informed prior to my digging a little for some support and information. I clearly have so much to learn. I really appreciate the information I have gained from this site so far. Your comments have given me several things to consider. I will absolutely do more research before opting for surgery to correct the RV fistula and am curious to learn more about pelvic flood therapy.
Thanks again.
Maureen
M
C chiromancerMember
You have a colonic J pouch where the pouch is fashioned from the colon/large intestine as opposed to the vast majority of people here who have a J pouch fashioned from the small intestine typically after having their entire colon removed.

I doubt your main problem is from lack of capacity in the J pouch as it would normally be much larger than the pouches most people have here. I would guess your issues are related to your radiation treatments both directly and indirectly. You may well have had tissue damage in the sphincter area; this tone might come back in time. The keagels exercises sure cant hurt, but given your level of incontinence probably not going to be the answer. Getting the radiation-induced colitis (if that’s what it is) under control would seem to me to be the first thing to work on.

One of the purposes of the sigmoid colon is to regulate the amount of stool that enters the rectum, or in your case the colonic J pouch. Since you no longer have the sigmoid, stool simply is moved down into the J pouch and with poor sphincters pushes on through the anal canal. The colitis is likely making the whole new system unstable. It is also possible you had ulcerative colitis, possibly very mild and were never diagnosed and became more active because of the radiation. I had mild UC,after 25 years got rectal cancer and the radiation treatments
(before surgery) made it much worse, including two stays in the hospital for bleeding.
C
n/an/aMember
Hi Maureen, welcome to the bds. I'm one of those living with an RV fistula. I have had a seton in place for 1-1/2 yrs. now. This was a personal choice that I made after research and discussing surgical options with surgeon at Cleveland Clinic. In my case, once the fistula was "dealt" with, my BMs decreased considerably. Also, getting cuffitis and pouchitis under control made a huge difference.

I'd advise not thinking colostomy at this point; continue your investigations and discussions with your docs - possibly get additional opinions from GIs and/or surgeons at the Cleveland Clinic if you haven't yet?

Take care.
n/a
M MaureenDMember
Thank you everyone for your replies to my request for help. Unfortunately I am still experiencing the same issues with frequency and incontinence. As I have had results from blood work, C-Reactive Protien, that would suggest that the inflammation/colitis that I was experiencing has resolved itself, I am afraid that perhaps my sphincter muscles are simply not going to cooperate. I am going to try some acupuncture and will continue with the Kegel expercises and hope for the best.
M

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