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Rectum removal sched. for the 17th and SCARED!!

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Posted 2/10/2011 2:26 PM (GMT 0)
Well, I'm finally having my much dreaded rectum removal surgery on the 17th and could really use some pep talk (and what to expect talk) from those of you who've had it done sad . I've had my colon removed and a permanent ileo since 1998 (after 2 resections, gangrene, pockets of infection drained) and since have had surgery to relieve strictures/blockages, and my stoma redone b/c of prolapse. No stranger to the knife but still have LOTS of anxiety whenever I'm told "here we go again!" Those of you who're on here alot might remember all the problems I had a several months ago with the horrible spasms and drainage. I know this has to be done but I don't know what to expect. The surgeon said it's also a possibility they might have to flip me onto my back after the removal and open my abdomen (again) and repair/reconstruct any strictures or adhesions shakehead   so i could be under from 2-5 hrs and stay in hosp. 2-4 days, 6-8 wks recovery. UUUGGGHHH!! Advice welcome! Thank you all
Posted 2/10/2011 8:38 PM (GMT 0)
     Oh wow, no wonder you are concerned!  As long as you have a GOOD colorectal surgeon you should be fine.  I had my rectum and colon removed all in one shot.  My surgeon said the j-pouch would be too risky for me, so I have a permanent ileo.  I had a few issues, like some bleeding off and on for several months (surgery performed last June 28th) and mucus drainage.  He left my anus intact.   My problem was ulcerative proctitis.

 It sounds as though you are a Crohn's sufferer.  Is there a reason they left the rectum there?  Were they going to reconnect you at some point? 

Posted 2/10/2011 10:56 PM (GMT 0)
They left my rectum in case of chance to reattach but I'm not a candidate after all (different team of surgeons, diffirent hospital).
Posted 2/10/2011 11:29 PM (GMT 0)
I had my rectum removed with my original ileo, and it really wasn't too bad. Yes, it's uncomfortable to sit for a few days, but you can either sit on a pillow or lean to the side...if you've lived through the ileo, you'll be fine! :)
Posted 2/11/2011 12:34 AM (GMT 0)
Hi, I also had my rectum done with the ileostomy. My surgeon who did a great job only told me the evening befor the op that the 'bum' wound would be difficult one to heal. he shocked me by saying that it might take months to fully heal. This was not good news but it was right of him to tell me just in case. As it turned out all went ok & although it was a little uncomfortable for about a month it all healed up after about 2 months. I put the healing down to the advice I got from the wound / dressing nurse. She said that taking a good amount of protein daily will give a weakend body the resourses to heal (I took 2-3 bottles of Cubitan a day for a few weeks - it even tasted good). Also she recommended daily 'Stiz' baths - I dont really know what these are, my version was a bath with some a few drops of Tea Tree Oil in it to keep the wound disinfected.

I hope all goes well for you.
Posted 2/11/2011 12:54 AM (GMT 0)
I don't mean to sound stupid, but here it goes. My son is getting ready for simular surgery. I guess we didn't ask enough questions. We were trying to digest the fact that the surgery was going to have to be done through his abdomen and not the "simple" procedure like we were told 3 years ago at the time of his total colectomy. What are the advantages/disadvantages of not having both the rectum and anus removed? What other info should we know regarding this? Sorry didn't mean to hijack your post, but we to are apprehensive.

Post Edited (J's Mom) : 2/10/2011 6:16:49 PM (GMT-7)

Posted 2/11/2011 10:04 PM (GMT 0)

Thank you for the replies!

80sChick: You're right about living thru the ileo. What doesn't kill us makes us stronger!

Villager: That's my main worry (wound healing ok) since I'm on Humira and Imuran and already don't heal quickly. Thanks for the tip about uping my protein, I'll do that!
Posted 2/12/2011 12:49 AM (GMT 0)
I do certainly understand your anxiety about the healing of this wound & especially if previous wounds took some time to heal. I can only speak from my own experience which was that as soon as the wound healed this part of my anatomy has never caused me another thought. I'm glad its all sown up because of what I've read on this and other forums of the ongoing & perhaps daily problems of leaving the unused rectum & anus in place. Of course I'm not at all medically learned so you do have to listen to your doc but from a purely human view maybe an optomistic idea would be to keep sight of the eventual goal/ prize.

I would also again suggest asking the wound / dressing people about the sitz baths/ Tea tree oil because it makes sense to me that the longer a wound remains open the graeater the chance of infection and the location of this wound being warm & moist does also lend itself to germs more so than wounds which can easily be kept airy & dry.

Good luck on Wednsday.
Posted 2/12/2011 3:40 AM (GMT 0)
My husband's nurses also stressed the importance of protein to help the healing process and strength after surgery. His appetite wasn't all that great so I would also make slim fast chocolate protein shakes for him that have 15 grams of protein. It has been 7 weeks and I am sure the protein did help as suggested.

His rear area was quite sore for about a month. Just today I checked it out for him when he did a full change of his wafer and it is healing so well. No lumpy bumpy look - very smooth and the areas where the drains were on each buttock have healed very smoothly.

I believe in the case of a permanent ileostomy when a j-pouch is not possible the rectum is removed and closed up to eliminate any cancer potential down the road. Someone will correct me or add additional info I am sure if I'm not accurate.
Posted 2/12/2011 6:48 PM (GMT 0)
     Hvacchronie....are you still on Humira?  My surgeon made me wait six weeks after my last injection of Humira before he would operate.  He's supercautious.

      I also wonder why there would be concern for cancer in the anus if not sewn closed?  My surgeon did not sew my anus closed but my rectum and colon are removed.  I certainly don't use the anus but have had seepage of mucus and some bleeding post op.  He also had to drain a hematoma which formed about two months post op. However, he said it was better that the anus was open in order for him to drain that hematoma...hmmm.

Posted 2/15/2011 2:11 AM (GMT 0)
Christine, yes I'm still on Humira (my wife gave me my shot Sat. as a matter of fact) but the docs said it was o.k. Hmmm. Also, my GIs have been telling me for a year now that I should have my rectum removed to "eliminate the risk of rectal cancer".

 ONLY 3 DAYS LEFT !!! UGGGH!

Posted 2/15/2011 1:33 PM (GMT 0)
Good luck. Thoughts and prayers are with you.
Posted 2/16/2011 2:31 AM (GMT 0)
     hvachronie....my rectum is removed, just my anus is not sewn closed.
Posted 2/16/2011 3:01 AM (GMT 0)
hvacchronie (you need a shorter name) and J's mom
I don't understand "'to eliminate the risk of rectal cancer". Is it a high probability that it will occur? What other organs need to be removed "just in case". I have my rectum and anus, and they are staying right where they are. "If it ain't broke, don't fix it". I cannot find anything that recommends removal with colectomy and ileostomy.

Dan
Posted 2/16/2011 3:51 AM (GMT 0)
Dan,

My son has bloody drainage from his rectum, actually quite often. Probably on the average of a week a month. We were told at the time of his total colectomy that it would probably need removed at some point. He had very severe UC. We were told that since he still has the bleeding quite often that the risk for cancer is increased due to the constant inflammation. We are going for another opinion at the Cleveland Clinic, so we will see what their recommendation is. Believe me I would rather not put him through this confused

Posted 2/16/2011 4:00 AM (GMT 0)
J's Mom
Do "they" know why he has bloody drainage? Are they trying to find out why or just remove it?

Dan
Posted 2/16/2011 4:07 AM (GMT 0)
I assume from the UC. I don't totally know. The surgeon that did his colectomy told us that she left a small amt of colon that would need removed...I don't know if she meant the rectum or if there is actually colon left. At the time he was so ill and we didn't know what questions to ask. She has since retired. It seems logical to me (however, I don't know) that if there is colon or rectum and he had severe UC that the UC would still be in anything remaining??? This is why we are going to get another opinion. We will see what they say, now that we know what questions to ask and keep you posted.
Posted 2/16/2011 4:20 AM (GMT 0)

J's Mom

Sounds familiar. Had my surgery Nov 8, 07. I was so sick and anemic the only question I had was When can you do it? I was home in 4 days. Three days later I was flown from our small town small hospital by helicopter to a Detroit hospital with peritonitis. The tissues af my rectum were so bad that the stitches did not hold and had to be redone. I only pass this on because after all that I still have my anus and I think my rectum. I have had no problem there. Go figure.

Dan

Posted 2/16/2011 3:06 PM (GMT 0)
Dan, I too have problems with severe drainage and spasming. (Went to ER 4 times in 3 days because of it once!) I guess each case is a little different and this was just what was right for me.
Posted 2/19/2011 2:48 AM (GMT 0)
When I had my loop ileo changed to an end ileo (the loop pulled back on itself and at that time there was some hope of reversal but colon far too badly damaged) they left colon, rectum and anus intact. After 3 years I started producing mucus through rectum and at that time GI and surgeon said best to remove all of it and sew up anus because as he put it 'if it is left to it's own devices not doing the job it is supposed to do it may find something else to do, like cancer'. Which sort of made sense to me at the time. So whole lot removed 2005.
Posted 9/26/2012 2:53 AM (GMT 0)
I don't understand... you are all talking about the APR like it is either sewing you anus shut or removing it... Did anyone have it replaced with a flap made out of stomach muscle and stomach skin that is sewn to the sides of your crotch? Like sitting on a big bubble. I am three months out of this surgery for rectal cancer and it must be done differently for cancer patients. Because I can find no one that describes it like mine. Where I live no one in the medical field has ever seen it like mine either. I realize this conversation went on almost two years ago, but I am trying to find help with mine, so please respond.
Posted 9/28/2012 3:12 PM (GMT 0)
Hvacchronie,
I had my rectum and anus removed and sewn shut just 2 weeks ago! I'm pleased to report I did well and am healing without a lot of the pain and discomfort that I was so scared about! I actually went home 3 days after surgery. They did have to open my belly to remove the top part of the colon that was left when I had my ileostomy in January. The JP drain came out before I was discharged so I went home with no tubes:) I can not sit flat on my butt yet but I can sit slightly forward on a padded chair to eat. The recliner chair still hurts because if you lean back to far it will pull on your bottom stitches. Laying on the couch and sleeping in bed are no problem, thank goodness, lol! I still take the oxycodone twice a day for pain but will probably switch to just Motrin soon. Hope your surgery goes as well as mine! I'll be thinking of you, and if you have any questions I can help with please ask!
Posted 9/28/2012 7:45 PM (GMT 0)
     What I would like to know....have there been studies done on people who have had total colectomies with end ileos and had not had their anus sewn closed.....how many developed cancer of the anus????  Like I stated earlier on this topic.  My surgeon left my anus intact.  Not sure if he did any scraping around in there but I doubt it.  He did remove my rectum which he stated was badly diseased.  Of course, the rest of my colon is gone too because of the diseased rectum.  I had NO trouble sitting even immediately post op.  I had vaginal bleeding, but all checked out ok.  
Posted 9/30/2012 1:16 AM (GMT 0)
My husband has severe disease in his rectum and some in what's left of his colon so it's all coming out Tuesday. Colon, rectum, anus. They will sew it closed. They said if any was left his chance of crohns coming back is his. Actually got this fact at the GI last week- with crohns- after a reconnection the chance of it coming back within 5 years is 50-60% if done Laproscopic. When he has his end ileostomy his chance of the disease coming back is 10% without meds! 5% with meds! So I think since crohns can attack anywhere it's best to take out the areas that are being affected. Surgeon said that his perirectal crohns statistically doesn't usually come back anywhere else. (Fingers crossed)

Well good luck hvcccrohnie! Keep us updated! Heal fast!
Posted 4/3/2013 4:58 PM (GMT 0)
The reason there is mucus and blood coming from anus after ileostomy (or the like) is there is either still disease there, such as crohns or it can also be from lack of nutrition to that area....it is supposed to absorb what is left from waste, when there is no longer waste coming thru there is no more nutrients.  This can cause several problems, such as bleeding, drainage and much pain.   If you are someone who is having surgery that can't be reversed my personal advice it to take it all.  I had an ileostomy and rectum removal and they left the anus in and it has caused me nothing but, pain and agony and there is no reason to keep it.  Having mine tomorrow after a year of failed treatment and pain.  I am nervous but, I don't feel like it could be worse than what I have already gone thru.
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