Just had reversal do I have a stricture?

Sounds like it could be possibly a stricture or inflammation in the cuff. Have you been checked by the surgeon for a stricture?  I have one and I have very similar symptoms, (several successive trips to the bathroom, passing small amounts of stool, rectal pressure and pain) but I have also found, inflammation of my cuff really exacerbates my stricture symptoms. I did have diversion pouchitis before my reversal.

Hi jeane, my situation definitely sounds very similar to yours, the anal pressure, the pain when straining and the small amounts of blood, if you don't mind me asking when did you have your surgery? And how's your frequency, I'm going on average 20 times in 24hours sometimes more sometimes a little less (say 15)? Does that get better?

It's not the frequency that's bothering me to much (although I really hope it does calm down eventually) but it's the straining and pain when I go, I was told my sphincter muscles are normal but very low end of normal yet I'm having no leakage (praying to God above i don't either) could a stricture be why I'm having no leakage? Or does a stricture cause leakage? And does it get better?

Did you also get the feeling of having to keep pushing but nothing much wants to come out, I'm having that everytime I go to the toilet and I almost feel breathless at the end.

Also, the diversion colitis, did that get better? My nurses just done seem to take anything I say seriously and just keep saying it's all normal and it will all pass, I've got other skin problems going on related to idb issues and now there is talk of azathioprine which was exactly what I didn't want, I just feel like they are giving up on me

Thanks in advance xxx

I developed an anal stricture about 4 weeks after my reversal. What your describing sounds a lot like what I experienced. I had anal pressure (felt like a bowling ball was lodged in my butt), always the feeling I had to go but nothing or a tiny bit would come out, loud, loud gurgling intestines. and just a general not well feeling. Once the stricture was dilated I felt a million times better. (I had to repeat the dilations five more times before the scar tissue stopped forming). Definitely worth giving your surgeon a call. Having said all that, if you were told your pouch is inflamed, it could be from that as well. Hope you get it resolved soon. 

Thanks marianne, that's exactly what it feels like! So glad your ok now do you if dilation effects the sphincter muscles? As mine are slightly weaker

Thanks is advance
Sally xxxx

I don't think a dilation would effect your sphincter muscles but I'm really not sure. My surgeon did mine digitally in office....no sedation. It wasn't pleasant but it was quick. If you do have a stricture and need to be dilated and have a low tolerance for pain, you may want to ask to be sedated.

Thanks marianne, I think I'll probably ask for sedation 2 kids 3 major surgeries and my pain threshold has only gotten worse :/ at the moment the toilet trips feel just like uc days, I just called my hospital and explained this to them all they said to me is u may need to use a catheter to empty properly on a permanent basis! I feel sometimes they just don't have a clue what's going on! I asked to be seen they said u are booked to come in in 6 weeks!

Sally xxxx

Oh no....6 weeks! That's too long. I hope you can convince them to see you sooner. Are you in the US or over seas?

I'm in the UK, it really does seem like the hospitals know a lot more overseas, I called again today and was met with more of the same you can go to a & e if it's very bad! What will they be able to do?! I'm going to give it till the end of the week and if there is no improvement I think I might just try and go to the hospital and ask to see sometime, I just worry they seem to become even less helpful  everytime :/ could the pouch inflammation cause this having to strain feeling?

Sally xxxx

The pouch inflammation could be the culprit but either way six weeks is an awful long time to wait and feel uncomfortable. Maybe if you can go to the hospital's emergency room you can ask to see your surgeon that way.

Thanks marianne, I agree it feels impossible to wait 6weeks like this, I think I might have to go through a and e, but I know all they will say to me is you need to give it 6 weeks and then see the difference, it feels like they just can't be seen to feel like they are wrong, they just won't listen to me
Thanks jeanne, I really hope if you do have to have the surgery for dilation in the future it helps and improves everything so you won't have any more problems. After the surgery the surgeon said to me that he also had a look at my bottom under sedation and all looked fine, but they told me previously (when they created the j pouch but em before the reversal) that the pouch was inflamed (diversion colitis but were unsure) I'm getting a 'gut' feeling after reading everyone's experiences with it that either it's a stricture or pouch inflammation, and it's bugging me they won't see me early, the linear I'm prepared to wait is another week and then I'll have to just go in, it's so hard as I have 2 boys, 4 and 2 years old and at the moment they are with my mum who lives about 150miles away from me as my husbands mum said she couldn't manage them! And my husband has taken some time of work (it's only been a week so far) and he's itching to go back, was really hoping I could get it under control a little before the kids came back, I'm just spending my time lying down at the moment feels like when I walk I want to go to the loo and then when I go I cry straining  horrible time, thank you all your all your help it means so much to me the support is amazing and ill definintly keep you updated, keep me updated to jeanne on what you decide with the possible surgery for dilation

Lots of love Sally xxxxxx

Unlike jeanne's doc, my colorectal surgeon was totally onboard with self dilation.

I use a metal Heger dilator (18mm, the largest in the kit). He said you never pull to the front; only back towards the tailbone and side to side. I've had no issues doing it. Sometimes when things are good, I forget. I try to do it a minimum of 3x/week, on the nights I use a Canasa suppository (Tues/Thurs/Sat).

This sounds totally weird, but when I have issues passing stool, if I plop my butt in a pretty warm to almost hot sitz bath, things relax enough for me to pass stool into the water. Water has to hit the anus though, lol, so you have to relax everything there. Then I just dump it and clean up. Worth a shot if you're struggling.

Thanks rachel, funny you mentioned that I had a bath last night and when i got out had the other to go to the loo and I felt quite empty after but I still had to strain a lot, and I have to almost pull one side of the anus open slightly to help move things along, also since last night I've had blood in the stool every single I've gone to the toilet, a constant pain very low down on the right hand side of the abdomen, and an uncomfortable cramping feeling around the top of the abdomen, any ideas? Could I now have chrons?

Thanks in advance xxxxxxx

I had similar symptoms after takedown. I thought it could be a stricture but after a few weeks things just settled down.

 

I think it could have been butt burn in the anal canal. have you started taking immodium yet? also try and clean the very beginning of the inside of the anus if you can with wet wipes. some people also put a barrier cream like ilex just inside the anus

Rachel,

Did your surgeon suggest never pulling to the front due to a possible tear/perforation towards the vagina? I get frightened to do self dilation as my prior GI was concerned about perforation also even with balloon dilations (which I have never had as of yet). My current surgeon has said if he does place some cuts around the anastomosis he will not put any towards the front near the vagina, just on the sides and back. Even this gives me shivers.  

 

Thanks so much for your reply shainy, I'm praying to God it just settles down, did you have pain in the lower abdomen? And did you almost have to pull the things part a little to help things come out? Even then I still have to strain, sorry for such personal questions :/ xxx

Also I forgot to mention one other thing,this pain in the abdomen right at the bottom is constant, and basically I can't lift my right leg up even slightly to put my pyjamas or jeans or whatever on because that pain in the stomach becomes unbearable until I put my foot back down :/ could it be a hernia?

Thanks in advance xxxxxx

I had some abdomen pain for a week or so after takedown which is because the bowel doesn't like being moved around. I had to strain a lot at first, and sometimes I would just strain involuntarily. it does help to wear a hernia belt whilst on the toilet if you are straining because its not good to strain. I think at first you need to get used to the pouch and understand the sensations. just try and relax and if something comes out it does if not wait a bit. play a game on your phone whilst there.

 

I actually have a very small hernia which I am getting repaired the week after next. I think I got it after the very first surgery. doesn't really cause me problems but I think its best to get it fixed now rather than deal with a serious issue further down the line. I am also very active with sports...

Thanks shainy, I'm a week out of surgery now, and the pains started, did yours subside on its own? I'm hoping it does, i think I'll put my hernia belt on straight away the pain is horrible right now xxxx

yes my pain subsided on its own. I had some gas pains too at the beginning. but they were intermittent.

 

if you are having severe pain probably best to contact your surgeon just in case its something else

Thanks so much for your help shainy I really apprecaite it I've left another message with my hospital ward and nurse really hoping they get back to me as soon as they can xxx

yeah the first few weeks are anxious times. always worried about complications. my surgeon just said to me give it 4 weeks and then see how you feel, and he was right it all settled down. but having said that you should get in touch with them if you are in a lot of pain so you have done the right thing

sally what hospital did you have your surgery at? st marks?

jeanne, he just said risk of creating an issue/perforation is highest towards the front. You don't do anything that isn't gentle. I slip it in gently, the go side to side twice and back, all gently. He said as long as I could pass the 18mm Heger, chances of a stricture/not passing stool would be low; meaning, that diameter should = an open anastomosis. 

 

sally, I'd say there are plenty of "other" things to rule out before you jump to the conclusion of Crohn's disease. Plus, you're so very early on, I think things for you just need a time to settle. I got to a relatively good place in 3 months, but for many folks it can take up to a year. 

Thank you Rachel. I am going to discuss with my GI  

Sorry guys I've not had the greatest week got really ill with a. Cold went to the nurse she said it's not related to the pouch I didn't have a temperature just really bunged up so been in bed and on the loo! I had an ok ish first week second week things started getting a bit thicker, but it's 3 weeks today and this week I've had diahroea, urgency when I go to the loo to push but nothing much wants to come out, really bad anal irritation and burning, and so much gas that I have to go to the loo a lot more than even straight out of surgery, night times can be once every hour some days does this sound like pouchitis? Or SIBO?

Thanks for the help shainy and Rachael, Yes shainy I had the operation at St marks, the 1st step was an emergency operation that was done at Wexham park, but as soon as I could I transferred over to St marks for the other 2 steps

Rachael I'm hoping the 3 month mark shows improvement for me to
Sally xxxxx

hi Sally,

 

I've been reading your story and I have the same symptoms although I am 5 months post op.  pain and cramping both on and off the logo, need to separate bum cheeks to evacuate, gas, clustering, etc.  I see my surgeon Tuesday and will post an update.  I'm in the states btw....

 

wishing you well!

 

Sue

Hi sue,

Thanks for your reply, I thought i was the only one having to do the whole bum separation thing! Was starting to feel really lost with it, I'm 3 weeks post takedown but all the symptoms like the one above, and cramping and gas and diahorea seem to be getting worse and not better, and the frequency is also not calming down! I hope your appointment goes well let me know, I'm going for my 6 week check and hoping they tell me what's going on, I'll keep you updated also xxxx