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Questions for people that had their colon removed but kept part of their rectum.

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Posted 11/15/2015 9:14 AM (GMT 0)
I had my colon removed about a month ago after suffering from a UC flare that was not responding to 160 mg IV steroids a day. They left 8" of my rectum in with pans of going back in a year and getting it removed. In the mean time I still have disease in my rectum and have to sit on the toilet about 6 time a day to get rid of the blood and mucus.
:Questions:
How often do you have to go to the restroom? Do you have disease in your rectum? How much volume is your rectum producing without the colon filling it up?
:For people that have disease in the rectum:
What meds are helping you? I am at 25 mg prednisone a day. I use coritfoam 1-2 times a day. Usually two hours before I am due my AM prednisone dose and in the late afternoon for short term relief. I also use a steroid enema before I go to bed which seems to help quite a bit. I put it in. Slap on a pair of depends and go to bed laying on my left side with my right knee pulled up to my chest for about 30 minutes. This really helps distribute the solution.

I also have a yeast infection under my wafer. The effected area is about a 1/2" ring around the stoma. I am using some 100,000 usp anti fungal powder. I clean it,powder it , spray on some barrier spray to seal it and an put a new bag on. Advice on a better method would be VERY welcome, if there is any out there.

Overall I think I am doing great. I do not mind the bag and coming to terms with having to wear one for the rest of my life at the age of 49. The best part is getting free samples and getting on edgepark medical and ordering crap.
Thank you for reading and the advice. The post op care and advice I got from the hospital,surgeon and GI doc was horrid. And I work there.
Posted 11/15/2015 10:56 AM (GMT 0)
27/m/netherlands, crohn's disease.

large bowel removed october 2015, 10cm rectum remains.

the rectum has active disease, prescribed corticosteroid suppository called beclometason 3mg, one time a day.

frequency to sit on the loo is once a day. sometimes the dissolved drug is evident in the toilet. the blood appears to have stopped. output is minimal- clear mucus, occasional brown colour.

yeast infection in mouth since operation, prescribed nystatine labaz 'mouth wash'. appears to be effective.
Posted 11/15/2015 1:51 PM (GMT 0)
That seems like a lot of trips! But you are putting a lot of meds up there so it's probably difficult to tell - do you have the urgency / pressure feeling? It's also very close to your surgery so would expect some improvement. What has your GI said?

I have a stump and use mesalazine enemas and have to go to the toilet about once per day (op was Aug last year). Out of that maybe once every few days has blood in the output and have a feeling of pressure. Surgeon described it as "angry" when he had a quick look recently.
Posted 11/15/2015 4:08 PM (GMT 0)
I had a rectum and no colon for a while... I didn't measure output of what came out of my rectum so it's hard to answer your questions, but overall, I think I got pretty lucky.

One of my friends is going through this right now and she was describing her procitits and it sounds a lot worse than mine was. She said she wakes up in the night with urgency and she has to run to the toilet and she's stuck there for a long time.

Mine was much easier to manage, I would get up in the morning and some days, I would push and there would be mucus. Other days, nothing. A few times, I had tenesmus and I would have pressure and sit there but it wasn't the norm for me.

I had awful proctitis before surgery so I expected the worst. I didn't use any medication to treat mine. Pre-surgery, I was using EVERYTHING under the sun to try to get in under control without luck (granted, steroids always nipped it quickly).

I was excited to get rid of my rectum, it seemed to only cause problems. On the positive side, I loved my end ileo. Since having step 2, I have a loop, and it's nothing but trouble. My rectum was less trouble than this loop, but in my case, it's a necessary evil.
Posted 11/15/2015 4:49 PM (GMT 0)

Donutz said...
That seems like a lot of trips! But you are putting a lot of meds up there so it's probably difficult to tell - do you have the urgency / pressure feeling? It's also very close to your surgery so would expect some improvement. What has your GI said?

I have a stump and use mesalazine enemas and have to go to the toilet about once per day (op was Aug last year). Out of that maybe once every few days has blood in the output and have a feeling of pressure. Surgeon described it as "angry" when he had a quick look recently.

I tried the mesalazine enemas and they made the bleeding worse. We are doing this medicine regiment until mid December then we go from there.
Posted 11/15/2015 5:22 PM (GMT 0)
Suffered with ulcerative proctitis from 1998 until proctocolectomy with end ileostomy in 2010. I was not a candidate for j-pouch. My surgeon stated on the operative report that the entire colon and rectum were removed, but I still have the rectal "cuff" and my anus. Everything was ok until last summer when I started to experience some pressure in the anus. My surgeon retired in 2013, so I am seeing another colorectal surgeon here in south Jersey. He did numerous biopsies last November, everything was ok, except I do have active disease inside the anus. He suggested Canasa suppositories. Well, I don't have much space in there, so I have to cut them in half in order to insert. I thought I had a recto vaginal fistula because I bleed from my vagina on occasion and the mucus come out the vagina and NOT the anus. I had more extensive biopsies done in September....no dysplasia, no cancer and NO fistula.

I have been feeling much, much better, no pressure or pain, but do still have mucus. Surgeon said NO operation is needed unless my condition worsens. I went to another surgeon for another opinion and he thoroughly agrees, no operation is needed. He also put my mind at ease that my original surgeon did a great job and if this surgeon were to operate, he would do the operation the same exact way. I did have the top man at Pennsylvania Hospital as my original surgeon.

I believe the UC came back because I was using a high dose of Ibupropen for back pain. All the prednisone I was on during my UC days caused full blown osteoporosis. I no longer take Ibupropen...learned that lesson.

OH....I might add that I have seen my gyn several times because of the vaginal bleeding (I am more than 20 yrs past menopause), had PAP tests and three transvaginal ultrasounds and everything is fine. Guess an operation like this just disturbs the apple cart. I am soooo much better since my operation though. Having a bag was a Godsend for me. I am now 69 yrs old and enjoying our little grandson, whom I doubt I would have even had the benefit of seeing had I not had that operation. He's our third, the other two are well into their teens. He keeps us young!!!
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