Next surgery - Barbie butt or rectum removed w cuff left

Hey guys!
Ive got quite a while until my pow-wow with my surgeon in October but im trying tk get some info/education on my next step with my ileostomy.

I have thought since the beginning of this surgery mess that I would probably go permanent ileostomy. Of course I dont want to rush into this decision... as barbie butt is not reversible!

My next step sounds like getting my rectum out. I am having noticeable discomfort 0-3 times a day and passing mucous 5-7 times a week. Only once per day. Twice once on a stressful day.

My surgeon wants to get my rectum out. As do I. Since its bothersome and useless . My Question is... if I get my rectum out how long can I keep my anus/rectal cuff intact before having to choose? Ive seen people say theyve kept it for years and years.

Also, I was reading old posts about mucosa. Ive read most standard practice these days is to remove the mucosa of the cuff (and I believe my surgeon says this is what he does.) Of course the mucosa can grow back. But with it removed the likelihood of my having symptoms/issues is much less, correct?

I just dont want to go through another rough surgery in January, just to have major cuff issues and wish I wohld have just gotten the whole thing out. But getting the whole thing out and sewn up... is so permanent!

Im really not looking forward to surgery again... at all. Do I have to have my rectum out? Im only 3 weeks post op, so is it reasonable to assume the mucous and phantom pains will lessen with time?

Thanks for any help, opinions, personal experience you might have!! :)

Mucosectomy is not the standard anymore. There are many people who have had successful mucosectomies and j-pouches (suebear is one), but it's commonly agreed now that the risks of mucosectomy exceed the benefits. There are many studies from the 00s that show this, here's a brief review: http://www.ncbi.nlm.nih.gov/pubmed/17504334

It has always been my understanding that the integrity of the rectal cuff can't be maintained if it isn't attached to something -- it atrophies. In other words, in order to remove the rectum and maintain the rectal cuff for use later, you would have to have the j-pouch created at the same time. I could be wrong, that's what my surgeon told me.

I have had mild cuffitis on and off since my takedown and although it can be frustrating it doesn't make me regret my decision. It only really flares up if I eat something that irritates on the way out, like a lot of nuts or really spicy food. I don't use meds for it and it doesn't affect my continence, frequency, urgency, etc (except during the aforementioned dietary lapses). There are bad cases of cuffitis, but there are potentially bad outcomes to every possible choice.

UCwhat, I still have my colon and everything else (including a loop ileo for the last two years - emergency surgery) and I have mucous discharge every single day just as you do. This morning I barely made it to the toilet before it came pouring out. October is my surgery and I am having everything removed and sewn up. Out of everything that I have been through, the mucous is the worst part of it. I am hesitant to engage in sex with hubby because I fear leaking all over. This part has not been pleasant.

While I am terrified of the healing, I am sooooo ready to have this removed and over with.

I've got Barbie butt too, the option of leaving in the rectum was barely discussed with my surgeon. We did talk about it, but once I found out they recommend yearly anuscopes, & that UC can still affect the rectum... nope, take it out ASAP! Of course NOW, almost 4 months after surgery, that stupid rectal wound is giving me trouble. It's healing... but... the tissue is hard & scratchy, it's itchy, it's annoying... I have no idea what's going on with it! But I do go back to the wound clinic Monday, so we'll see after that appt. Regardless of the way it's healing (or not), I'm still glad I got everything out when I did. I do not have any mucous or drainage from that area. I don't know too much about the j-pouch, but wouldn't you need a rectum to have a j-pouch????

From what I understand they can completely remove the rectum and connect the pouch to the anus. I'd check with your surgeon first.

Barbie butt intrigues me. It just sounds cute. I've got to look it up to see what this looks like! I can't believe you're considering keeping your ileo. I thought you were set on a pouch... It's interesting to me to see how happy and confident you are. It's great and gives me a very positive outlook at the future if I did ever need surgery. I am still doing poorly btw but haven't had an accident or anything fortunately.

Axis said...
From what I understand they can completely remove the rectum and connect the pouch to the anus. I'd check with your surgeon first.

A very small amount of rectum has to be left in place no matter what. In most patients it's 1-2 cm. If the pouch were connected directly to the anus, the patient would be incontinent.

Katie, you should do whatever makes you happy! I agree with NSSG that you are a great role model, whatever you decide, to show other UC patients that surgery is not the end of the world (it's really the beginning :)).

Embers,

If it is blood, discomfort and urgency that are bothering you my Surgeon suggested that I use Canasa suppositories or an other 5ASA. I was always planning on 2 more surgeries so my situation maybe different than yours.

I had most of my rectum removed when I had my first operation, a hemicolectomy. I was told at that time, that I would have to have a second operation later on to remove the rectal stump and anus due the cancer risk from the inflamed tissue there resulting from Crohns. I thought maybe I might get away with putting it off for a long time because I was definitely not ready for more major surgery. It didn't take long for me to start feeling those phantom feelings and the urge to go, which I no longer could do with a colostomy. Then I started to see bloody dischard from my anus and it began to ache more and more as the weeks went by. My surgeon encouraged me to get the stump and anus removed and I hoped this would relieve my discomfort. So 5 months after the first surgery in October 2013, I went in again and had the rest removed. As it turned out, my rectal stump had adhered to my vaginal wall, making the condition and repairs worse than anticipated. The healing took a few weeks and it was pretty painful at first, but I now have zero pain or discomfort in that area. My butt looks almost normal and not like a Barbie butt at all. It's just not as deep as it used to be (the crack ... sorry if that is TMI) but I think we all want to know as much as we can if we are facing these problems and surgeries. I hope this has helped. I know that I am very happy to have it over with and am starting to feel so much better after all the years of pain. The colostomy is a challenge and definitely not a pleasant thing to deal with now, but I remind myself regularly that it has literally saved my life.