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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
Karen
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 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!
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
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 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

Doug
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 ago...it 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

BriaN:-)
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.

Karen
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.
Jax
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.
Reply by butterfly48, on Mon Apr 04, 2011 2:32 pm
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.  Your so lucky you have no problems now.   Personally, I believe if you eat properly, 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 of saved my rectum I would of.  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
Reply by butterfly48, on Mon Apr 04, 2011 2:35 pm
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.  Your so lucky you have no problems now.   Personally, I believe if you eat properly, 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 of saved my rectum I would of.  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
Reply by suzy1957, on Tue Apr 05, 2011 6:07 pm
hi i had my large bowel removed and my rectum including my tail bone, which was all due to cancer. Recovery was pretty slow and quite painful due to infection however it was nothing comparing 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
Reply by nogutz, on Thu Apr 07, 2011 9:06 pm
Hi Horselover


    I  also have to have my rectum removed, and after alot of thinking and asking questions, I think I will wait until I have to.  I am scared to death deep down ,  Hoping its the right choice for now. and when I have too I will. After 3 tough surgery's ,not in a rush too go back in hospital. 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 other . I think talking to your gastralagist will help you answer your question, opposed to talking to your  surgeon about the surgery. Good luck  


      nogutz
Reply by duzluvxist, on Sat Apr 09, 2011 2:31 am
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 17yrs 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 use to having the ostomy that I decided I didn't want to chance the possibilities of failure ( stool leakeage etc.). I waited until I was 33 yrs 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 Colities, CD does not have this problem.  After 10 yrs  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 abdomin 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 absess in 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 !!
Reply by horselover, on Sun Apr 10, 2011 1:00 pm
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.
Reply by ferrona, on Tue Apr 12, 2011 1:19 am
I've had 3 failed jpouches 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 wont 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.
Reply by beatrice, on Sun Apr 24, 2011 4:42 pm
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 ... 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 ... alot can happen in a year and half. There is alot 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
Reply by BusyLizzie, on Wed Jan 11, 2012 7:39 am
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 diverted colitis 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 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 colitis 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.
Reply by beatrice, on Wed Jan 11, 2012 2:21 pm
Hi BusyLizzie and all,

Well, I had the rectal removal op (total protectomy) a couple months ago (have mentioned on other threads) and am I ever glad I did. For the first time (in over 40 yrs) 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 laparascoptic proctectomy was minimally invasive (no belly staples, just small incisions) -- the recovery was so much easier than what I experiened 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 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.
Reply by ZACK, on Wed Jan 18, 2012 1:51 am
This is ZACK in Michigan.  Had my ileo in 1977; rectal stump was so inflamed from UC had to wait nearly a year until the rest, colon and rectum, could be removed.

Long since healed to just scar tissue.       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.
Reply by horselover, on Tue Feb 21, 2012 9:17 pm
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 is 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.  
Reply by Fran9209, on Fri Sep 08, 2017 3:45 pm

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.

Reply by Willow59, on Wed Jan 03, 2018 12:45 pm

Well today i have to go for rectal and vagina scope i have an iliostomy and have been having major probles will rotton mucus that smells like someone die im praying after today i get booked for surgery have no quality of life.Was wondering how long recovery is and what the surgery entails do the cut you open like they did for iliostomy ect God Bless Willow

Reply by Wisteria, on Fri Jan 05, 2018 1:58 pm

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 msg 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.

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