Recovery after Rectum Removal & Ileostomy - Seeking Advice

I have to have one last surgery to take out the rectum (can't leave it due to cancer risk) as I've decided not to re-attach. Haven't had any issues since my ileostomy 4 years ago and don't really want to go through the recovery and possible complications of re-attachment. The main problem is that I am healthy and have to go in for surgery which will make me feel crappy. It's easy to go in if you're sick because the point is to make you better. This will make me better in the grander picture but I'm worried about this recovery. Can anyone relate and provide some info on how things went for you? Thanks.

Hi, I am curious as to why 4 years later you have to have the rectum removed? Is that because your UC will come back there? I have Crohn's and the cancer risk to my rectum is the same as to any other part of my track. I realize we are both IBD sufferers, yet we are different on where the disease will go. My surgeon told me now that the ostomy has been done and my rectum will stay in rest mode, I stay at the same chance it may develop cancer. Which for me I am okay with, only being 8 months out. He had told me it is more of a major surgery than the ostomy..Eeeek I am definitely not ready for that.
I do hope all goes well for you, when you are fine it is a harder decision...I know how you feel.
Take care.
Karen.

I had an ileostomy in 2008. There was no mention of removing the rectum. Have you had cancer before?

I had my rectum removed 2 years post-ileostomy...largely because I continued to have some drainage from that area. You're right...it's counter-intuitive to enter the hospital when you are feeling so much better than pre-ileostomy, and you are also right about the fact that no one feels great after surgery. But, it's finite, and then you'll be done! The recovery should not be too complicated...good luck!

S. If you are female, you will forever have to tell doctors not to try a rectal exam during routine checkups! It is habit with them, and it's just not real comfortable when they try.

Words of Encouragement from Ostomy Advocates I Hollister

Hi,
I don't have the same condition as you, but I had my rectum and anus removed and at the same time, a hysterectomy. The reason for this was that I had a secondary carcinoma growing alongside the rectum. The primary was in the Bartholin gland in the vulva, which was removed 3 years ago. The latest operation to remove the rectum was last November, so I am now with a colostomy.
I healed up really very well with no problems, and things haven't been too bad at all, except since my operation, I have had a pain just below my chest, just under my ribs. It was really bad after the operation and caused terrible pain on breathing. It has gotten a little better over time, but still hurts a lot if I breathe in deeply or yawn.
I keep telling my doctors who tell me it's because they did a lot of damage during the operation and it's part of the healing process. Personally, I'm not sure because it's been 5 months since my operation and it's not getting any better, and the constant dull, sometimes nauseous pain is getting me down.
Anybody got any ideas what it is?

I keep telling my doctors who tell me it's because they did a lot of damage during the op and it's part of the healing process. [/quote]

Blimey, what on earth were they doing up near your ribs when they were removing your uterus and rectum??? Doesn't sound quite right to me .... and admitting they have done a lot of damage - weird!

Try looking up 'Costochondritis' ~ could possibly be that?

Good luck in trying to sort it out

Rach xx

While my case was a little different from yours, I have had my rectum removed. My rectum was removed because I had colorectal cancer (2003), which meant that an abdomino resection was called for, so both surgeries were done together. Recovery? Yes, it was painful, of course, it is surgery after all. After-effects were minimal though, after around 3 weeks I was still a bit sore, sitting down for a lengthy period was an issue until I found a horseshoe-shaped cushion. Ring cushions were no help at all. The skin still stretched and pulled on the stitches. After 6 weeks, I was able to dispense with the cushion. No trouble sleeping even while in the hospital once the drips etc. were removed. (I had an NG tube for a few weeks, but I doubt that you will).

The only ongoing problem that I faced was phantom urges to go to the toilet as I used to. You may escape this because you already have an Ostomy, and your system probably has settled down accordingly.

I wish for you a successful procedure and a speedy recovery. It isn't pleasant, but you will recover quickly, and most importantly, you will avoid that dreaded cancer.

Good luck

Doug

After having a colectomy and receiving an ileostomy in 2007 - I had my rectum removed in 2010. Ulcerative colitis can recur in the rectal stump and poses a continuing risk of cancer. Since I had decided to live with the ileostomy - I decided to have the rectal stump removed to end the fear of cancer and the need for annual surveillance of the stump.
I know what you mean, though, it's difficult to have surgery when you are feeling well.
I felt that at age 58, I would recover from the rectal stump removal faster than if I waited until I was older.
After about a month of not being able to sit comfortably, I was fine. I can now move forward with my life with one less thing to worry about!!

I had mine out about 4 years ago...it set me back for awhile but much better than the cramping from the UC....
My only issue is an ongoing bleeding problem if I do a lot of exercise or heavy lifting....I talked to my surgeon and he told me that it can be corrected surgically but there are no guarantees. I've had enough of surgeries at this point so I decided to live with it...The surgeon says that it's not life-threatening.
The bleeding has only been heavy a couple of times but nothing needing medical attention..once you get used to seeing a bit of blood it's no big deal...Sometimes if I'm not exercising I can go for weeks without bleeding...In the big picture, it beats the hell out of the alternatives....I wish you good luck

Brian:-)

Trudel, I have those exact symptoms and anything that requires deep air hurts very much! Sneezing just about brings me to tears! But the pain is always there. I was diagnosed with dry pleurisy. They say sometimes it does go away on its own, but not for me, I have had it for about 6 years.
Rachel may be right also as the two are similar....

The only thing that helps me is to lay on it directly (tummy sleeping). Now with the ostomy I can't, so I heat up a flaxseed bag and hold it close to the bottom of my ribs. It does help quite a bit.
Wish you the best with an answer.

Karen

Sorry to hear about your upcoming surgery. I can understand why you're worried about it. I had a similar operation done in March 2008, an extensive bowel reconstruction, removal of rectum etc.

Two tips I would like to share here again in this forum, and you may want to discuss them with your doctor:

(1) Make sure your surgeon takes care to sew your bottom up by giving enough 'slack' for sitting and squatting. Mine was sewn up too high and close to the surface of my buttocks without allowing for enough 'slack' to stretch properly. For several months after surgery, it was quite painful for me to sit or squat down.

(2) Use Vitamin E ointment to help speed up healing of the sewn up area. A nurse suggested it to me after hearing of my sufferings. I use it every day now even though I am all healed, because the scar tissues still hurt sometimes and I find the ointment helps to form a barrier from urine sting, as well as soften up for the stretching when sitting on the seat.

It's okay to feel nervous about the operation and do give yourself time to heal. Walking and everyday activities may be restricted at first, but after a few months to recover, you will find life is good again! All the best in your surgery, and let us know how things go.

I had my rectum and anus removed in 2 operations due to CD. I am still trying to heal from the surgeries as I was on methotrexate, an auto-immune suppressant. If it is CD or UC, you may find this is the best thing to get done. Just be aware and take into consideration what everyone else is saying, that everyone is an individual, some suffer more than others, but do talk with your doctors to see if any medications you are on could slow the recovery down. Jax

Hi, this is for the lady with the question about having her rectum removed. I had my permanent ileostomy put in 6 years ago after my colon was removed. Well, the surgeon didn't want me to go through more difficult stuff at the time, but because we didn't remove my rectal stump, I ended up with a horrible colitis called ischemic colitis in the stump. After trying natural enemas from my own waste and other enemas, things didn't improve. Well, doctors at Mayo Clinic in Rochester figured out that if the rectum and stump were removed, I would be rid of the horrible colitis. Well, when I came back home to LV, I had surgery last March 11, 2010. Best thing that ever happened. It was hard for it was a major abdominal surgery and more. The pain and everything was worth it in the end. For me, it was tough for I am allergic to all narcotics, etc. But with God's help and my supportive doctor and husband, I came through. It took about 6 months until I felt really good. I am happy it's gone. So for you, it's an excellent decision to do what your doctor says. Good luck. Belissima.

I did not have my rectum removed when I had my last surgery because the doctors constructed a second, smaller J-pouch (I think they called it a K-pouch). As it turned out, I decided not to have a reversal because the sphincter felt very weak and I had some anal leakage (mucus) which would slip out without warning. The doctors and I later agreed that I was much better off leaving things as they were. To remove the rectum and detach the K-pouch would be no simple procedure. The downside of all this is (1) occasional mucus leakage, and (2) that I have to have an annual "colonoscopy" with biopsy to ensure that there's no cancer. If I could do it all over again, I would have opted for removal of everything. But, please forgive the pun, hindsight is 20/20.

Hi, I have been fighting cancer on and off for 20 years, so I know cancer is scary. My attitude is if what you have now is working, why change it? You're so lucky you have no problems now. Personally, I believe if you eat properly and get plenty of sleep, you will be just fine. I have a gene that causes cancer. I have had uterine cancer, 2 colon cancers, and now have the whole colon out, including the rectum (It has not been quite a year - and if I could have saved my rectum, I would have). I am a fighter. And you know, if you find the cancer early, then you can have the surgery. I am now fighting breast cancer. Good luck with your decision, Butterfly 48. Remember, this is your body, so please don't let the doctor talk you into something you really don't feel comfortable with - get another opinion, then make your decision.

Hi, I have been fighting cancer on and off for 20 years, so I know cancer is scary. My attitude is if what you have now is working, why change it? You're so lucky you have no problems now. Personally, I believe if you eat properly and get plenty of sleep, you will be just fine. I have a gene that causes cancer. I have had uterine cancer, 2 colon cancers, and now have the whole colon out, including the rectum (It has not been quite a year - and if I could have saved my rectum, I would have). I am a fighter. And you know, if you find the cancer early, then you can have the surgery. I am now fighting breast cancer. Good luck with your decision, Butterfly 48. Remember, this is your body, so please don't let the doctor talk you into something you really don't feel comfortable with - get another opinion, then make your decision.

Hi, I had my large bowel removed and my rectum, including my tailbone, which was all due to cancer. Recovery was pretty slow and quite painful due to infection; however, it was nothing compared to the pain I was in when the cancer was there. 1 year on, I feel amazing. I have come to terms with my stoma and have no pain whatsoever, no phantom pains, or mucus to worry about. So, in my opinion, don't hesitate, go ahead. Good luck.

Hi Horselover

I also have to have my rectum removed, and after a lot of thinking and asking questions, I think I will wait until I have to. I am scared to death deep down, hoping it's the right choice for now. And when I have to, I will. After 3 tough surgeries, not in a rush to go back to the hospital. The last time was for 4 months and that was enough. Like some have said, if things are working! I do get scoped regularly for cancer and others. I think talking to your gastroenterologist will help you answer your question, opposed to talking to your surgeon about the surgery. Good luck

ogutz

Hi, I'm sorry to hear that you are having some concerns about your upcoming surgery. I too was in the same place you are now. I had my ileostomy when I was 17 years old and had planned on having it reversed in the future. Well, the future came and I still didn't have it reversed. I had become so used to having the ostomy that I decided I didn't want to chance the possibilities of failure (stool leakage etc.). I waited until I was 33 years old and they found some cells that were precancerous and it was decided to just remove the rectum at that time. You are correct...the longer you wait to have it removed, the higher risk you have of developing cancer. This is only with Ulcerative Colitis, CD does not have this problem. After 10 years, it goes up 1% every year you wait. Anyway, I had it removed and asked for them to leave the anus intact. That way I would not have to go through the pain and problems of sitting down, bleeding etc. that you have read in the other posts. Plus, I figured it would give me more options in the future if the sphincter muscles were left intact for future revisions, if possible. I found this to be a good resolution and I did not have any of the pain in that area that others have had...but, I do have to say that having them go through your abdomen again is not pleasant and it had taken a month or so to recover. I returned to work after six weeks. I have had problems with rectal tissue that was not completely removed with the proctectomy (rectum removal). You can end up with an abscess if not completely removed. I also had some drainage from where the rectal stump had been but that went away after a couple of months. I wish you luck and good health!

I do have UC still in the stump, so there is blood, pain, etc. And I have had a melanoma (skin cancer) removed also, so I feel like there is a valid risk of cancer in the future. It's good to hear from those who have had the procedure done. Sounds like some discomfort, but overall not too bad, barring any complications. I have talked to the surgeon about leaving some 'stretching' room too. Thanks everyone for your input - very helpful to have your opinions. I'm sure I'll have more questions to come in the future.

I've had 3 failed J-pouches and after the 7th surgery, I was left with a permanent ostomy. My anal cavity has yet to completely heal. I've had 6 other surgeries to correct that problem. I still have a sinus cavity and no anus. They did a flap surgery to core out what was left of the muscle from the rectum and anus. And they took muscle out of my inner thigh to plug the area. And the flap basically failed. I can't have my crack area cut on anymore because the tissue won't heal.

Now, I've been on 2+ non-stop antibiotics and am slowly not responding to medications as well as going through Hyperbaric chamber treatments to hopefully heal the wound.

Unless you are draining out of your anus/rectum or have infections, I do not recommend having surgery to remove it. You might get an infection that won't heal up.

Generally, the thinking is that the rectum is left just in case you want a reversal.

In my case, there was no chance of reversal -- the rectum was left because they did not want to have me on the table for those extra surgery hours ... I was very ill and not doing well during the surgery.

If the rectum is left and you have no problems ... then you could assume that there is no greater chance to have cancer there than in any other part of your body.

BUT - if you have continued rectal bleeding - then there is a high risk for cancer in the rectum.

In my case, with 30+ years of UC, there has been almost continual irritation in the rectum. I have a scope about every 1.5 years ... a lot can happen in a year and a half. There is a lot of blood flow to and from the rectum ... rectal cancer is a fast mover.

The idea of being in the hospital again for a major surgery scares me to death too. I was just in emerg for a major rectal bleed. It calmed down and I didn't have to have emerg surgery.

So I'm wrapping my head around the idea of the surgery. I know it's the best thing for me. I need to rule out the possibility of rectal cancer. And I would like to plan my surgery.

All the best,
Beatrice

I am in exactly the same situation.

I had an ileostomy 10 years ago and am now 51. I decided on no more surgery. Then on my last visit, the doctor said that at some point in the future they would like to remove my rectum and sew it up. I have diverticulitis now, which they say is quite severe, although I suffer from no symptoms other than the occasional bleed when I go to the loo (it's not every time). I really can't face going into the hospital for a MAJOR surgery when I feel so well, knowing what it will be like afterwards. I also have had a cough for over four years, which they can't seem to diagnose, and my fear apart from the surgery itself is waking up and needing to cough with 39 staples down my belly!! I am having yearly investigations, but the doctors maintain that something could be missed or something could develop in the interim. Just how likely am I to develop cancer? No one seems to be able to tell me! I am of the opinion that complications from, during, and after surgery must far outweigh the risk of developing cancer. There are people who have had diverticulitis for several decades that manage it with drugs and they don't develop cancer! I need to make a decision this year before my next appointment in the summer, and I really don't know what to do. Also, I am overweight, so they would want me to lose weight before the op anyway. I also live in Hertfordshire, and yesterday on the news, they said that no operations would be offered to overweight people. So perhaps the decision has been taken out of my hands.

Hi BusyLizzie and all,

Well, I had the rectal removal op (total proctectomy) a couple of months ago (I have mentioned on other threads) and am I ever glad I did. For the first time (in over 40 years), I can actually say that I feel well. Even after my ileostomy (09), I felt sick. Not lay in bed sick, but the kind of unwell sick ... something not right is going on in my body kind of feeling. Of course, for me, it was the rectum.
My laparoscopic proctectomy was minimally invasive (no belly staples, just small incisions) -- the recovery was so much easier than what I experienced after the ileo.

For me, the deciding factor was not that I was feeling unwell (until I felt really well, I didn't think I was feeling badly - that's sometimes how it is) but the possibility of cancer developing. For me, I have had almost constant inflammation in the colon/rectum on and off since I was in my late teens ... more 'on' than off during the last 10 years.

So that's where I'm at ...

BusyLizzie -- I don't quite understand ... if you've had an ileostomy ... and you're having blood sometimes in your stool ... you mean the stool that comes from your pouch/bag? As far as I know, there shouldn't be any stool coming from your rectum. So if you see some stool (and blood) from there, it's not a good thing.

Everyone has to make this tough decision on their own. Postings from others on this site helped me so much ... just gave me courage. Because I knew in my heart that I was going to have the surgery ... whether it be on my terms before cancer or one day down the road when I'm battling cancer.

All the best and ask questions if you think I can be of help.

This is Zack in Michigan. I had my ileo in 1977; the rectal stump was so inflamed from UC that I had to wait nearly a year until the rest, colon and rectum, could be removed.

Long since healed to just scar tissue. The only issue is no bicycle riding, or any other activity that strains the scar tissue, because scar tissue can and will split a bit and have to reheal itself.

Thanks for all the info. I am a rider, so I will have to be careful about stretching the rear end so as to still be able to ride. @Beatrice - I'm glad things seemed to have worked out for you! My surgery has been on the back burner since I last posted, but the discharge and pain are worsening, so I should be talking with my surgeon about a date. It is so helpful to hear that you have gone through this with minimal issues. Thanks again for sharing.

I had my ileostomy nearly 10 years ago, and I'm just finding out that if this medication you service rectal phone does not work, that I will have to have my rectal stump removed. I am very concerned about the surgery because from what I understand, that will be the end of my fertility. I have read that removing the rectal stump is kind of a last resort. But according to my doctor at my appointment yesterday, there is a very good possibility that I will be having my rectal stump removed 10 years after the ileostomy. Yes, the disease does still affect what's left.

Well, today I have to go for a rectal and vaginal scope. I have an ileostomy and have been having major problems with rotten mucus that smells like someone died. I'm praying that after today, I get booked for surgery. I have no quality of life. I was wondering how long the recovery is and what the surgery entails. Do they cut you open like they did for the ileostomy, etc.? God bless, Willow.

Hi Willow59. My name is Janet and I also live in Ontario. I'm also having similar difficulties as you and am seeing my surgeon at St. Michael's Hospital on January 15. I have been having problems getting my message to you. If this gets to you and you are willing to talk, I will give you my email and phone number. I look forward to hearing from you.