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Surgery to remove rectum, post-ileostomy.

Posted by horselover, on Sun Apr 03, 2011 1:50 pm
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.
Reply by Bluezz, on Sun Apr 03, 2011 4:53 pm
Hi, I am curious as to why 4years 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 anyother part of my track .I realize we are both IBD suffers, 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 ok with, only being 8 months out. He had told me it is more of a major sugery than the ostomy..Eeeek I am definately not ready for that Wink
I do hope all goes well for you, when you are fine it is a harder decision...I know how you feel Smile
Take care
Reply by billdeacon, on Sun Apr 03, 2011 5:39 pm
I had ileostomy in 2008, was no mention of removing rectum. Have you had cancer before?
Reply by jamie, on Sun Apr 03, 2011 5:49 pm
I had my rectum removed 2 years post-ileostomy...largely b/c I continued to have some drainage from that area.  You're'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!
Reply by jamie, on Sun Apr 03, 2011 5:51 pm
p.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.
Reply by trudel, on Sun Apr 03, 2011 5:57 pm
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 3years ago. The latest op to remove 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 op I have had a pain just below my chest just under my ribs, it was really bad after the op, and caused terrible pain on breathing, it has gotten a little better over time but still hurts a lot if I breath in deeply or yawn.
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. Personally I'm not sure because it's been 5months since my op and its not getting any better and the constant dull sometimes nauseas pain is getting me down.
Anybody got any ideas what it is.
Reply by lottagelady, on Sun Apr 03, 2011 6:05 pm
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
Reply by Adabar, on Sun Apr 03, 2011 6:05 pm
While my case was a little different to 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 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 important you will avoid that dreaded cancer.

Good luck

Reply by twilly01, on Sun Apr 03, 2011 6:27 pm
After having a colectomy and receiving an ileostomy in 2007 - I had my rectum removed in 2010.  Ulcerative colitis can reoccur 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 surveilance 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!!
Reply by bwesner, on Sun Apr 03, 2011 8:50 pm
I had mine out about 4 years set me back for awhile but much better than the cramping from the uc....
MY only issue is an un-going 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 surgecally but there are no garantee's I've had enough of surgeries at this point so I decided to live with it...The Surg. says that its not life threatening.
The bleeding has only been heavy a couple of times but nothing needing medical attention..once u get used to seeing a bit of blood its 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 u good luck

Reply by Bluezz, on Sun Apr 03, 2011 9:22 pm
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 it's 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 Smile
Wish you the best with an answer.

Reply by Little Jade, on Sun Apr 03, 2011 11:29 pm
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 everyday 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.
Reply by Jax, on Mon Apr 04, 2011 6:22 am
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, 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
Reply by belissima, on Mon Apr 04, 2011 8:22 am
Hi this is for the lady with the question about having her rectum removed. I HAD MY PERMANENT illeostomy put in 6yrs ago after my colon was removed. well the surgeon didnt want me to go through more difficullt stuff at the time. but because we didnt remove my rectal stump. i ended up with a horrible colitis called ichemia colits in the stump. after trying natural enemas, from my own waste, and other enemas, things didnt improve. well drs. at mayo clinic in rochester figured out that if the rectum and stump were removed i would be rid of the horrible colits. well when i came back home to lv.Had surgery last march 11 2010. best thing that ever happened. IT WAS HARD FOR IT WAS A MAJOR ADOMINAL SURGERY AND MORE. the pain and everytning was worth it in the end. for me it was tough for i am allergic to all narcotics etc. but with Gods help and my supportive dr. and husband, i came through. it took aboyt 6 months till i felt really goood. I am happy its gone. so for you its an excellent descison to do what your dr. says. good luck. belissima.
Reply by Primeboy, on Mon Apr 04, 2011 10:43 am
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.
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