Rectum removal

Hi I'm wanting to know how painful is the rectum removal? Do they go through both stomach and bum? I've already got my stoma and had my large bowel removed so they don't need to do that. I'm also worried about it coz apparently it can cause infertility and I'm only 21. I don't want it but don't have a choice as Ive been diagnosed with indeterminate colitis. I was in so much pain last time with my stomach let alone this time my stomach and bum:/ how long before you could sit properly/ healed. Thanks for this I just want to know as much as possible. I go bk to hospital in November to make my decision then get put on the waiting list. I'm so scared of everything and the unknown any advice will be very much appreciated thanks again Rachel xx

Hi Cheerbear
From what I have heard and been through, poor wound healing is the most common COMPLICATION, not most common outcome. The wound is in a deep dark place so healing can be a challenge for some. It seems that the most common outcome is people take the 6 weeks to heal and recover nicely, by 4 weeks they are getting back to normal.
Do you have any active disease in your rectum? Or any problem with healing that would make you worry that you wont heal properly or something?
The reality is it hurts but it's manageable. I can compare it to after childbirth almost. the good thing is the surgery will be in your bum and you can rest easily without moving, unlike stomach surgery when every muscle you move requires your stomach muscles too.
Maybe since you HAVE to have the surgery anyways, just educate yourself on proper wound care and nutrition to help your recovery go nice and smooth
Surgery scares the crap out of me. Ive had 6 surgeries and scheduled for my 4th rectum removal complication surgery next month.
It sucks, it hurts, but we are strong, and we can get through it. We can handle anything. Us IBDers are fighters, it's what we do Stay strong. I hope this helps you a little.

Hi I have been having active disease in there on and off now more than usual. Childbirth bloody hell I haven't given birth but I know it's the most painful thing ever. The thing that scares me most if I don't heal properly coz of my diagnosis... Unless that doesn't make a difference. Oh god I hope I don't have to have that many. It scares the crap out of me too but if I hadn't had the other one I wouldnt be here now. Hopefully it won't be as bad as that.. So they don't go through the same scars as the ostomy surgery? Thanks a lot and hope yours goes well next month keep me posted on how it goes. I suppose I've got being young on my side as well... Thanks again xx

I hope someone that had it removed and had no complications can set your mind at ease It took me a long time to find someone else going through the same complications I have.

If you do get it done, ask your surgeon if it would be best to tuck some gauze in between your cheeks or something after to keep air coming to it. I think I had so many problems healing because it is such a deep dark place. Maybe it would have helped if it had air to it.

Just educate yourself and express your healing concerns to your surgeon. Like I said, most people heal just fine and get along with their lives within 6 weeks. GOod luck to you And stay strong. I am going through alot but I am so thankful for still having my life at least. We IBDers stuggle alot but we fight hard. Just keep fighting and take it head on

It's never easy what we go through is it I wished it all hadn't happen too late now. I've been terrible today with my rectum never been this bad. Well I have but that was before they operated. I hope it settles down soon.. That's how I should look at it still being alive and the surgeons saving my life. I'm getting the same surgeons to do this next one hopefully nothing will go wrong. Good luck to you as well hope it goes well. Keep me posted and you're in my thoughts xx

That is the only way I have gotten through all the torture I have endured. We have to realize that we have one life on this earth, one shot to give it all we got. At least we still have a fighting chance to live the best life we can. We learn to adjust, learn to live with the hands that we are delt. Some are so dam lucky it makes me sick. and some like me and you learn young how precious life is. I think we are lucky in our own weird way. We will appreciate the real things in life that matter so much more because we had to fight so hard to get it.
Thanks for your thoughts and kind words I feel like a boxer, keep getting knocked down and pulling myself back up, and back down and back up lol. Thinking my next tattoo will be boxing gloves and band aids

I got the CD diagnosis when I was 18, I had my first fistula then too, it was about 8 CM long according to the docs, they tried lots of stuff but it refused to heal.

I got a "temporary" ileostomy at age 20, I had the fistula, unhealed until I was 26. They then did a rectum removal and gave me a colostomy.

the sliced my tummy up which was the worst to recover from, id say I had 2 week that really sucked at the hospital with pain in my tummy and bum.

but since then it has been smooth sailing for 4 years, no complications down there no pain anymore (only skin can get sore sometimes but its not a problem), in a way it has made me get "closure" from the endless waiting period, I waited for 8 years for that thing to heal, I felt like my life was on hold for 8 years.. man it sucked

I only had 1 surgery too

getting the rectum removal was the best thing for me and im very glad I did it!

I've fought death twice with being born 4 months early as well as this but I'm a fighter I'm so lucky that they caught it just in time. You are right we should live and carry on fighting. Some people just don't know how lucky they are it makes me sick as well. They moan about stupid things yet we don't moan about this. Awww lol you won't forget to let me know will you lol. Have you got a date? I hope my rectum settles down soon.. xx

Cheerbear
I'll let you now what happens, make sure you do the same They called this morning, August 31st 6am. We just have to keep telling ourselves we are lucky to have our lives and keep on truckin

Prefer
Holy cow! 8 years....ugh don't tell me that lol. I'm desperate for this to end now and it's only been 2 years lol. I agree, I still would have done the removal even with how long it's taking to heal. At least I know it's out of me and can't cause me any future problems. so happy you are doing so well now!

Thanks for this I've been told it can be done keyhole I'm presuming that means in my stomach and my bum open eek. I'm so glad it's worked out for you in the end. Glad your not having any problems I'm having problems with my rectum at the moment:-( hopefully it will settle down in a few days.. x

Snowflayk505 I will do that's early!! :-/ I know we have to keep plodding on lol. Where you from if you don't mind me asking? I'm from north east England xx

When my rectum was removed it was not that bad. Like stated above, the location was the worst part. Also, because you lie mostly on your back after surgery it can be a problem. You have to lay on your side for faster/better healing. Also, I had a drain tube there and having that pulled out hurt. I also developed a small area of necrotic tissue in the area near the surgery but it healed. Here in the states we have AD ointment and putting that on the site as soon as I could helped too. All in all, not too bad though. Hang in there. Cheers.

Hi Civey thanks for that and has it all healed now? Have you got Crohns or uc? It might not make a difference to the healing tho. Did they go through keyhole in your stomach? x

CheerBear, it is completely healed as the surgery was five years ago. I have had Crohns for 40 years. Been through it all several times. Mine was done at the time of colon removal so it was not a keyhole. But it seems that keyhole is the preferred way to do it.

Cheerbear
Albuquerque, New Mexico in the states

Civey, thanks for the lay on your side advice, will try it after my surgery next month.

It is less pain apparently i was in absolute agony so not sure of that one it's quicker recovery apparently mine was done keyhole and it still took me 3 months to recover. I was very sick going in tho x

Hi Rachel
I had a panproctocolectomy with removal of the anal canal in Manchester some years ago. They went in through the abdomen and also my bum at the same time, fun! So the lot has gone! lol. My bum took a while to heal heal but everything is sorted now. Best wishes and good luck.

Tay, I'm glad it's all healed for you and you have no problems thanks for that I've got all this to look forward too.... Not lol just a question did they pull it all through your abdomin or bum lol. I know you might not know the answer thanks tho. Take care x

Hi Rachel
I was diagnosed at 14, I am 52 now. I had massive problems with perianal disease and a badly affected colon and rectum (fistula, absecesses, pain+++ etc) . I managed to put off having an ileostomy until I was 26 then gave in! Quality of life massively better with stoma.
With regards to the operation: the colon and rectum were removed through the abdomen by one surgeon. Another surgeon excised the anal canal from my bum end at the same time. Legs in the air jobby! (lithotomy position). Have you seen the Jessica Grossman site? Best wishes.

Tay so I'm presuming they will remove my rectum through my abdomen and my anal canal through my bum... I've already had my colon removed so they won't need to do that. Sounds awful what you had to go through glad it's sorted for you now. No I haven't what's on it? x

Hi Rachel
Surgical techniques have improved since I had my op. They will go for the least invasive procedure they can. Are they intending to remove your anal canal aswell as your rectum? Depends i think on whether you have disease in both rectum AND anal canal. Not everone does - might be your rectum only. Don't hold back in asking your surgeon questions! She is a model who has Crohns and ileostomy - takes the attitude - love me, love my stoma. Google her name and have a look. Very inspiring! x

They said keyhole for me, not sure whether I do lol but what I do know is I've been having so many problems with my rectum since yesterday:/ I'm going to ask about my vagina as well coz apparently it can move to where the rectum was when it's removed. I hope they can do something to stop it if it does. Just another thing to worry about:--( i'll have a look thanks x

Good luck with things. Remember if things are getting unbearable go to your GP and tell them. You may be able to shorten your wait for the op. x

Thanks I'll see how I go x

Tay, thanks that was very interesting I wouldn't have the guts to do that lol x

Hi Rachel

Just thought id add my 2 cents on your questions. I'm 4 weeks post op with a complete proctectomy. I've had crohns for nearly 20 yrs diagnosed at 8. Ileostomy 4 yrs ago. I decided to have the proctecomy as my rectum was diseased and i ran the risk of cancer. I'm happy I had the surgery however I have nurses that come every day to dress a wound 4 cm deep in my bottom. Its healing very slow but at least its healing. My surgeon went through my previous scar in my stomach for my ileostomy and through my bottom. I woke up from surgery with the hugest scar that ran all the way into my pubic area, not stitchs but staples. The incision in my bottom ran all the way up the bum crack. The only other complication besides the wound is I now have Vaginal discharge all the time. Hopefully that sorts itself.
Just remember everyone heals differently. I did find this surgery to be extremely painful much worse than the ileostomy. If you have an option for epidural, take it, I wish I had now.
Hope all goes well for you , It is a big surgery just remember healing takes time.

Hi Bubbli, thanks for this was your last one open or keyhole? He said he will be able too do it keyhole this time. I'm presuming he means just the stomach. I always feared that it would be more painful than the last one. I found the last one absolutely agonising I don't want too go through that again:-( Omg that must be one huge scar if it goes all the way around your butt crack:O no wonder it takes time too heal! I'm glad it healing for you though. How you doing after it? Did you have the morphine pump? Thanks for this x

Hiya again Rachel, I noticed you saying you are having keyhole surgery? I had a laparoscopically assisted proctectomy, so half keyhole. Check this out in case that is what you have been offered. I can't reassure you enough, in my experience it was nowhere near as painful as the first op. The butt wound does go all the way round, but you can't see it and it looks pretty much how it did before, minus the anus and the horrible disease. Please try not to worry too much, I was the same last year worrying and there was no need xxx

Hi Kaz, thanks for this yeah it is. Do they do just small cuts in the abdomen or is it a larger one as well as smaller ones in the abdomen? Like last time or is there just the large butt crack one with small ones in stomach? Sorry if this doesn't make sense.. It is a horrible disease. I'm worried it wont heal properly as well with me being diagnosed with indeterminate colitis.. Or does this not make much difference to it? I'll try not too worry but surgery scares the shit out of me lol xx

Ah I know, it is scary, but you will be fine. I had a wound about 2.5 inches on my stomach and 4 little ones, where I presume instruments went in, and one for a drain. You are young and should heal better. Try not to worry and get yourself as strong and healthy as you can before you go in. You will recover so much better because you are going in well. Last time you were very ill which is why you found it so hard.

I wish I could show you somehow, how much easier this op was for me, but it really was and it should be for you.

Take care xxx

Hi Kaz thanks for this so you have a larger one in your stomach as well little ones and the large one in your butt! I hope so and hope I heal ok. I wish I didn't worry so much sometimes! Hope your ok how you doing? X

Hi Rachel

Just to respond, I had my surgery through my stomach not keyhole. My Dr went through my previous scar of my ileostomy which was about 10 cm big. I now have a much larger scar because they need to get into the stomach and move things around. I had 35 staples after the surgery. As for the bottom area as I said everyone heals differently and I was very healthy before. It just so happened that one of my bottom incisions formed a wound and its gotten bigger than before. I was on a fentanyl button for my pain and was out of hospital after 5 days. I have to admit i was not scared one bit of the operation as I had been through a few before it was just the fear of the unknown like the recovery period. I think because i had an easy ileostomy with not much pain i wasn't prepared for the proctectomy. If your having keyhole surgery you will be in less pain and recover faster that's what i was told.
Good luck with everything I'm positive everything will go well.

Hi my last one was keyhole and I was in agony still. Sounds painful never heard of that drug.. It is the unknown that I'm scared of everything as well as everything else. I don't know how people can choose to have an operation. Thanks good luck with yours hope it goes well as well xx

Yeah the unknown is very scary, I didn't research too much before my surgery because I knew i'd psych myself out. With my ileostomy I didnt have a choice as I was told I wasn't gonna live long and it literally saved my life. Just make sure your sent home with adequate pain pills. I was on oxycodone every 4-6 hrs but having a stoma means we don't absorb much. So every 2 hrs i was in pain again and had to wait to take more pills. Very frustrating.

I can't stress enough that everyone is different some people bounce back after surgery and some people have complications. Just be positive, your young you have a better chance of healing faster

Your story is similar too mine I didn't have a choice with mine either life or death I didn't know then it was only afterwards. I didn't know that about not absorbing much tho thanks for that. Your right everyone is different I'm trying to get as much info now as I can so I know what too expect coz I couldnt last time. It's all sounding scary lol xx

You can private msg me anytime, I'm happy to help with any info you want to know. It's a big surgery it's natural to be scared. Ive had crohns for nearly 20 yrs and im only 27, I still get scared sometimes. Stay positive

Thanks will do when I think of any thing else lol xx

have a look my p0st had colon and anal removed 2008 still having blood crap out of the hole the surgen left me with still need more ops