HealingWell
Search Close Search
☰

They want to close up my anus!!

Support Forums
>
Ostomies
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 12/27/2011 6:52 PM (GMT 0)
Hi everyone,

I haven't posted in a while but I'm really nervous about this one.  I've been having severe arthritis pains and doctors are thinking it may have to do with the rectal stump that's still left.  I also had really bad abdominal pain the past week almost like I've done a 1000 crunches. I don't have a colon at all anymore so they're thinking I have been having flare ups of UC and if they take the remaining stump out my pains will go away. That means that they have to close me up from the back and that's making me nervous. It kind of makes everything official that I'm really never getting my ileostomy reversed. Has anyone had this and how was the surgery? How was the recovery and how long was the hospital stay? Please, give me as much info as you can. I couldn't research it on the internet.  Thank you very much

Posted 12/27/2011 9:58 PM (GMT 0)
      I hope you get an answer.  When I had my total colectomy with end ileo, they took my colon and rectum but left the anus intact.  Since then, I heard that most surgeons sew the anus closed but my surgeon's philosophy is that there are more complications when that is done.  about a month or so post op, I developed a hematoma inside the anus that hurt like the dickens.  I saw my surgeon, he stuck the anuscope up there shocked and suctioned it out...OMG...I almost went through the freakin roof.  He placed me on antibiotics and I had to go back a few weeks later for him to check on it.  Thank God I was all healed.  If the anus were sewn closed, he would have had to cut through stitches.  Anyways, I still have, what I thought were hemorrhoids, but he said they are only skin flaps, on the outside of the anus.  Things are going well except I have a boil down there eyes .  My family doctor lanced it about a month ago but apparently never drained it thoroughly.  It's better but I should have gone back to my surgeon to have that done..oy.
Posted 12/27/2011 11:28 PM (GMT 0)
I had mine taken away 7 years after my initial ileo surgery. I had already decided the day after my ileo was done that I was never going to have it reversed so that side of it didn't bother me. I had open surgery to remove the colon, retum and anus and was back to work just short off 5 weeks later. I maybe could have been back sooner but sitting for long periods wasn't painful but was uncomfortable up until then.
Posted 12/28/2011 12:02 AM (GMT 0)
hi ritas, i had my colon & everything below that removed & my butt sewn during my end ileo op in May 2010, the butt healing was flagged to me as likely to be the problem as far as healing was concerned - sure enough the first 4/5 weeks it was hard to sit comfortably but by about 3 months all was healed up fine - it gave me no problems after that - i left it a further 3 months before cycling again - i know that others here have had problems with healing in this area but i didnt find it a big problem painwise (i was of course dealing with my ileo & new stoma all at the one time) & now it feels entirely natural :: correction, in fact it doesnt feel anything at all now, it just doesnt cross my mind at all

it is always a hard decision where surgery is concerned, one just doesnt know which is the right way to go - either way i wish you well
Posted 12/28/2011 1:04 AM (GMT 0)
I am 4 weeks post op today, and I had it all done at once, including the ileo, rectum removed and anus sewn closed.  I believe my surgeon is excellent; he took out the last of the stitiches today and other than some scarring, everything looked almost normal down there, believe it or not.  I was quite scared in the hospital at how things would be once everything healed, so if you decide on this and are freaked out by the placement of the sutures, don't fear until everything is out and healed. 

I don't think I am a good guage as far as what people's recovery would be like because I had lost 15% of my body weight and had been very sick and weak immediately prior to surgery.  Still, here at 4 weeks post op I am off of all narcotics, drove myself to my last visit to the surgeon today (one and a half hours away), then did some mall shopping and light grocery shopping after.  I was really tired after, but I was able to do it nevertheless.

From my experience and from what others have said, including my surgeon, the removal of the rectum is the most difficult part of the surgery.  They actually had two pints of blood on standby for me in the event I needed a transfusion.  My surgeon also told me that the rectum is three to four hours of surgery by itself.  Also, the recovery, in my opinion was the toughest.  Like I said, the last of the stitches only came out today, and they were no picnic to sit on for sure.  Now that they are out I feel MUCH better though.  I believe my surgeon is more cautious; I have heard of others getting theirs out much sooner. 

I am planning on going back to work in two weeks.  I probably could go back next week, but I would be completely exhausted if I did.  I am a teacher, and not only are we on our feet all day, but we are also "on our game" all day in terms of dealing with children and their needs.  One really has to be at at least 90% to take that on.

Good luck in what you decide.  I chose to get rid of it all; I just couldn't stomach the thought of anything related to colitis ever again.  I had totally had it.     

 

Posted 12/28/2011 4:19 AM (GMT 0)
Hubby had it all done in one surgery which took close to 8 hours. Since a reversal and j-pouch was not possible it was decided to do it all right there and then. Yes it was tender & sore to sit for 6-8 weeks as I recall but in his case he really healed beautifully and had no issues healing as luck would have it. He is very happy that if it was to be done that it was done then and not needing a subsequent surgery. Maybe it was more painful all around doing it all at once but it is done and over with.

It has been a year and no complications whatsoever. It seems that different surgeons have different opinions on how they handle this. Hopefully the decision of our surgeon continues to be the right choice for him. I certainly don't feel qualified to debate the pros and cons and what is right or wrong. As long as you are confident with your surgeon and involved with the decision and the whys and wherefores then I would say that is the way to go. Everything is so subjective and personal and you really need to delve into whats what with your surgeon.
Posted 12/28/2011 1:22 PM (GMT 0)
I am a bit hesitant to respond, because I am one who had a complication from removal of the anus. From reading this board, my experience is not typical -- and it was influenced by having been on prednisone for a long time and getting an abscess a week after I got home from surgery.

I had everything done at once, lapro, and my stoma is great, and everything healed well on the the front side. The butt wound healed beautifully until it stopped at about 2-3 cm, and it just stayed there for months. It wasn't too debilitating -- I just had to put a dressing in it and some gauze over it, and also sit on a pillow, but otherwise I went about my life (except I couldn't swim). After seven months or so, my perineum started peeking out of the wound, and I needed another surgery to fix it (somehow something got dislodged, and a part of me that wasn't supposed to be there was blocking the wound from closing).

The second surgery went well, but recovery has been slow. It turns out that sometimes autoimmune disorders can slow wound healing.

As I said, my case is atypical, not writing to scare you or say what you should do. I was pretty shocked when I found out that sewing the anus closed was part of this deal, but even with all my complications, I think it's better than having mucous dripping out for the rest of my life, and I'm glad I won't have to worry about getting cancer in that area. If that really is causing your problems, I think it's worth it.... but surgery is always a big deal, with risks that things won't go as planned.

I hope the docs have given you more information about why they think this is the cause of your pain. Doesn't seem obvious to me....

Best of luck with this next step.
Posted 12/29/2011 12:22 AM (GMT 0)
Also in my husband's case he was off prednisone for 3 years when the surgery was performed so that certainly aided in his healing so well. Although he had a lot of frequency and urgency and on a lot of pain meds, the surgery was still somewhat elective and planned and not an emergency so that certainly was in his favor too.

My sister had emergency surgery 2 weeks before him (very unexpectedly) and was on prednisone at the time of surgery so her healing and recuperation was slow in comparison to my husband. She is now at the one year mark like my husband and now is doing very well. Both of them are enjoying life and doing very well and have adapted well. The trial and error and learning curve while going through it was a bit exasperating..... but now having it behind them and finding the right set ups for them that seem to work has allowed them to both be very satisfied with the way things have worked out.

Hopefully this will be the case for others trying to cope, accept and adapt to all of this. It's a big relief when it just becomes your new normal and you have been able to accept it as such.
Posted 12/29/2011 6:40 PM (GMT 0)
After four years I still have part of my rectum and my anus. This issue was never discussed by my surgeon. I have not had any problems with having my anus. I did have discharge after the surgery that is considered normal. I still do pass some mucus from time to time but it is no problem. I have not considered further surgery. Maybe I am right, maybe wrong. Time will tell.

Dan
Posted 12/29/2011 8:04 PM (GMT 0)
Hello All

In February I will be having step 2 of 3 for the jpouch procedure.  I had my colon removed due to UC and low grade dysplacia.  Part of the dysplacia is in the rectum area.  Going to ask my surgeon but just curious if everybody has there rectal cuff remaining after jpouch surgery.

Thanks

Steve

Posted 12/30/2011 2:27 PM (GMT 0)
If you aren't going to use it...lose it!

All my aches and pains went away when I had my sick colon/rectum removed:) I didn't realize how much that was still effecting my life (had had ileo for about 9 years before proctocolectomy).

Nothing is a guarantee, but if things are that bad you may want to consider it. My recovery was longer than I expected...I had expected to run out of the hospital in 5 days...so in REALITY it wasn't bad!!!

Can you meet face to face with an ostomy patient who has a permanent ileo? Your doc's office may be able to set it up...
Posted 12/31/2011 3:02 AM (GMT 0)
I had my anus and rectum removed at the same time my colon was taken out for my permanent ileostomy. My whole operation took 4 hours... I am not sure what time portion of that was devoted to the rectum removal. My butt incision healed up wonderfully with no complications (unlike my abdominal incision, but that is a separate story). The butt incision hurt for a little while after surgery, but the pain was way less than what I experienced in my belly and abdominal incision. Actually, I hardly even noticed the butt pain compared to the other post-surgical pain. Sometimes it itched while it was healing. I thought it would really hurt to sit on the staples, but it didn't and before I knew it, they were ready to be removed after 10 days.

Now that I am a little over a year out of surgery, I still get some twinges of pain deep in the muscle layers down there. However, it is really minor and mainly happens if I have been on my feet for a while. I think it is just some nerves and it seems to get better every month.

I agree with Colitis_sux... it is crazy how normal it looks down there when I separate my butt cheeks (Ah, the things we all get to talk about here:) When I had the staples in, there was sort of this ridge of skin within my butt crack where the surgeon had joined the sides together after removing the anus. I thought it would heal like that, but once the staples were removed, that ridge of skin pretty much stretched out disappeared. Now my butt crack looks and feels the same (except for some scarring) as it did before only without a hole for the anus.
Posted 12/31/2011 4:28 AM (GMT 0)
I had mine removed a year after my initial ileo surgery. I agree with the others: you're never going to use it again so why keep it? Much easier without it :)
Posted 12/31/2011 2:07 PM (GMT 0)
Blueheron...same with hubby the rear area healed beautifully after the drain incisions totally healed and closed up. The initial lumpy bumpy and tenderness took a little while to heal and smooth out (6-8 weeks)

He was lucky that the 10 1/2" abdominal scar healed so fast and he had very little discomfort with that. The hair on his chest camoflauges it and you see very little scar now.

His main discomfort was sitting for that 6-8 weeks until it healed. The recliner was wonderful for taking the stress off that area during that time.
✚ New Topic ✚ Reply