Rectal UC Update - Anal Discharge & Potential Surgery

Hi all,

So I finally got some answers - might be of interest to others with similar situations. Had a rectal scope done and biopsies taken and a good talk with the GI doc.

Why was the rectum left after my ileo (I had been told that I'd get a permanent ileo)? Two reasons (1) I am still considered 'young' -- and if there is a chance for getting a pouch, the surgeon wanted to give it to me, but mostly (2) I was very sick (C-diff and major damage to colon/major weight loss) and the surgeon didn't want me on the table any longer than necessary. It was already a long operation and he didn't want to add another 4 - 5 hours for the rectal removal. It could be done later when I was in better shape.

How much rectum do I have? I have about 6" (15cm) and this is pretty common/typical.

What's up with the rectal discharge, bleeding, etc.? I have UC in the rectal stump. It has improved somewhat with the use of Salofalk suppositories and Cortifoam ... but just like any UC situation, it will flare and subside.

Note: There is a 'normal' amount of rectal discharge that can be expected when the rectal stump is left. This discharge is clear or slightly white and can be voided (usually) when on the toilet. Often a 'fullness or pressure' is sensed. Many people do feel more comfortable wearing a pad of some sort. There can often be some 'pain' as well (with a rectal stump that is behaving/no UC). Hard to say what causes it ... but it usually comes and goes, isn't too acute. More like a hard twinge "high up" the rectum.

Do I get my rectum removed? It's a very good possibility that a Barbie Butt is in my future. The scope showed active UC and damage. There is always the cancer concern. A lot will depend on how soon this flare goes into remission and how often the UC reoccurs. In the past, my flares were long and often. Should this be the case, the GI doc recommends surgery.

What I plan to do: Nothing surgery-wise for a year or so (unless I get into an emergency situation as happened with ileo op). The pain, discharge, etc. is manageable, more of a nuisance. Hubby and I have a couple trips planned for this year ... another surgery would put those on the backburner and they are too important to me. Physically I could go through another surgery, but mentally/emotionally it's too soon.

It sure felt good to get some answers.

All the best,
Beatrice

Dear Beatrice,
When I saw the title of your post, I read it immediately as this problem is current and ongoing with me. I had thought to post it also but get lazy, so I was happy someone else did so. My situation is different than yours, but I thought I would share my issues to contribute to the general pool of information.

I had my colostomy surgery done in August 2009. This was after years of suffering with diarrhea from damage done by radiation treatment for rectal cancer. Also, botched surgery, etc. My surgeon also left my rectum in the "possibility that medical science will come up with something to help you." EVERYTHING had been tried, so I am not at all optimistic that this will change, and I have adapted well to my ostomy. I had experienced discharge rectally but read on the forum here that this was to be expected and often got better after 6 months of a stoma. Well, six months came and went, and contrary to getting better, I got worse.

The discharge is not as benign as yours in that it is not clear but yellowish and definitely not odor-free. It is very odiferous, and while I can wear a pad and do 24/7, the smell is awful. I need baby wipes and to change the pad, and in short: been there and done that for years.

When I went to see my surgeon, I was terrified that it was either cancer again or he would immediately say that I needed more surgery. My goal has been first NO more surgery ever and secondly at least one whole year without going in. When I saw him, he said he knew immediately what it was. The bowel reacting to radiation and doing so the way the bowel copes with inflammation, which is by producing mucus. God, 9 years later and the radiation keeps on... the gift that keeps on giving. For treatment options, he said that of course he could remove the rectum. Nope, said I. Then he suggested trying a steroid enema and possibly a course of oral steroids. I nixed the oral steroids as I have tried them in the past and know they have contributed to my developing osteoporosis. I agreed to the hydrocortisone rectal enemas. He said to start 2 times a day for a week, then go to once a day for a week, then every other day, every 3 days, you get it. The idea being to find a dosing level that would keep me symptom-free with maintenance of once a week or every other week. If that didn't work, he said there was using formaldehyde. Ugh.

I started with the 2 times a day enemas. Ah, the fun! The improvement was immediate. I was happy until I started cutting down and realized the symptoms are back with a vengeance unless I do the once a day enema. I am still trying to use the med less frequently but not too hopeful. You mentioned travel, and I try to imagine giving myself enemas on trips. Not impossible but suboptimal.

Anyhow, I have written down the name of your medications since I have been treated with every drug for UC and Crohn's also, and when I next see my surgeon, I will discuss trying other things as well. I really appreciate your post and will follow to see if others have this concern.

Thanks,
Lynn

Hi Lynn,

Glad to be of some help. I am lucky in that any discharge isn't stool-based. The only time it has been odorous is when I had an infection in the rectum ... but it was a very mild odor.

Your steroidal enemas ... are they a small volume/amount? I used Salofalk (anti-inflammatory) enemas for years with the UC ... each enema was about 3/4 to 1 cup of fluid? Of course, I did it at bedtime (only had to do one a day) and after inserting, I lay on my tummy for a bit to let the fluid settle and my rectum relax. As long as I didn't get up, the enema liquid stayed in place. Sometimes the UC spasms resulted in me losing the liquid ... but it stayed in more times than not.

I would ask your doc about the Cortifoam especially (or something similar). The foam is easier to use than liquid and doesn't leak as much. Not sure how high your docs want the med to move up (how much volume you need) but it's worth asking about. The foam might not go up far enough in your case.

My suppositories and foam wouldn't be a problem when traveling ... but a liquid enema twice a day ... not so good.

Hang in there!

Hey Beatrice,

I checked and the enema is 60 mL or about 3/4 cup. I use it at bedtime too, and in the morning when I have to do 2 times a day. No way does it all go in...very limited capacity there with a stricture but I do the best I can and then immediately go to bed and hope for the best. I will ask about the foam too. Clearly this problem is not going to go away. And the odor is almost worse than stool smell...why I am not sure but it is toxic. And because it is unpredictable, it is very annoying. I did an exercise class last Sat. and I could tell and smell and just prayed no one else would notice. It puts the issues with the colostomy in a whole 'nother ballpark. Get a handle on one thing and up pops another.

Thank you so much.

Best, Lynn

I also have a rectal stump--I have a colostomy and about 2 inches left at the rectal end. To make a long story short, it is too dangerous to take it out and it is not cancerous, so they left it. I also have a discharge and rectal-abdominal spasms. I am on medication for it, it helps but does not get rid of it. Something you have to live with. I find the usual pad not useful in this situation because it is not meant for this type of discharge. I find a folded over paper towel excellent, yes, a folded over paper towel. It is very absorbent and you can place it where you want and it is not bulky. Since I have to live with this the rest of my life, I find this the best way I can handle it and it works for me, and also very cheap. Any comments -- let me know.

Words of Encouragement from Ostomy Advocates I Hollister

I had a ileostomy in Aug 09. The surgeon left about 2" of rectum. Same reason as mentioned in an earlier post. For about 4 months, I had severe pain and discharge in my rectum. I would sit on a heating pad all the time. They scoped my rectum and found UC still there. I decided to have my stump removed in Jan 2010. After sitting on foam with the center cut out for about 4 weeks, everything healed quite well. The surgeon used staples and had to delay taking them out for a week because of swelling. To make a long story short, about 5/6 weeks after my rectum removal, I was riding my horse (walking only). It's been almost 5 months now and no other problems. I know it's there because if I hit a bump or bounce, my bottom lets me know it. I don't regret having the operation and feeling better every day. I volunteer at an equine rescue and love working with the horses. I lift bales of hay and 50 lbs bags of feed and would not trade my decision for anything. By the way, I had UC for 9 years and I am 62 years young.
Mike from Bama

Beatrice;

I'm so glad to hear that for the time being, your situation is manageable. Not only that - but I'm very happy to hear that you'll be doing some exploring this year. God knows - you've earned a nice vacation (or several, as the case may be).

Cheers!

Liz