Skip to main content

My husband brought me into the hospital Sunday night as I couldn't keep anything down including liquids. And was having a lot of pain. I had a cat scan done. And I have a bad bowel obstruction by a hernia. And was also told my pancreous is splitting and they don't know why. They think it's because of scar tissue wrapping around it. Has anybody every had this happen? Or even heard of it happening? My pancreous is functioning fine. But I am really scared. I'm in the hospital right now getting fluids,pain meds, and two different nausea meds through I.v. I can't even keeps water down I tried with some meds and vomited. So I'm not taking anything by mouth. I have the dry heeve's to. Tomorrow they are calling in my g.I doctor and a colorectal surgeon. I already had 12 surgeries. And really didn't want more because I already have a lot of scar tissue in there. But, I think it's going to be neccasary. I had to have a total hysterectomy also in 2010 due to scar tissue wrapping around everything. Any replys would be helpful. I've had my pouch for 17 years now since I was 13 and have had issues with it functioning. Any support would be greatly appreciated as I am very scared. Thanks!    Jamie
Original Post

Replies sorted oldest to newest

I've had a small bowel obstruction (twisted small intestine) and swear the pain was worse than giving birth.  Also, I have many adhesions but mine are behaving!  Had a hysterectomy a couple of years ago and my surgeon insisted on trying to do it lapro.  My colorectal surgeon said that wouldn't work.  I told my obgyn surgeon but he insisted on trying.  Ended up he opened the same scar resulting from my original proctocolectomy surgery and that worked for me.  Maybe surgery is indicated in order to release some of your adhesions.  Interesting occurrence with your pancreas.  Hopefully, they will figure out a relatively simple solution.  Stay on top of the pain!  Best wishes for a quick recovery.

Dear Jamie...I am so sorry you are in so much pain and in the hospital.  I wish you the best.  Several years ago that happened to me.  My blockage went away but in June I am scheduled for surgery to remove scar/adhesions.  I,too, am scared.  I have had about 12 surgeries myself and when they tried to do a hysterectomy several years ago, they couldn't cause of the mess inside.  O I wish you good health...please stay strong.

Patti

Hope you are better right now. I wish you the best.
I'm sure you have all our support.
  As for the pain... I had a twist in my intestine also.... For 18 hours before they took me in.  They didn't  know until they went in.  And yes the pain was absolutely excruciating.  I am a man.. And it was terrible.  If that's what childbirth feels like.. No thanks.  Kudos to all women that have had babies.  I don't know.... women are alot better as for dealing with pain but as for women who have a pouch.... I don't know how you do it.  For men there is one thing we don't have to worry about.  If we make a mess it's pretty well easy to clean up... All relative.  But I think we all know what I mean.
12 surgeries.  My goodness how did you survive?
I had just 3 and it was bad.  I cannot even imagine.
Thank you for all the support it means a lot! I am hanging in there they have been giving me diladid every two hours and two different nausea meds to. I just can't keep nothing down. And the pain is being controlled now. It wasn't at first. It goes into my back to. They just did another scan on me I am waiting on those results. Yes, it's very scary I never really know what's going to happen from one minute to the next. When I had my hysterectomy they had to call in 3 other surgeons because it was so bad. So there was 5 surgeons in there including my colo-rectal one. Last winter I was in the hospital 4 Times. I couldn't even move and my surgeon said my pouch and rectum was giving me severe spasms they were so bad I wanted a colostomy bag back. But they won't give me one because it's so bad in there they said it's not going to solve the problem it will just give me different ones. Sometimes I get tired of this pouch it prolapsed on me twice to.  The spasming is terrible I have to take valium to mantain them. And I get fissures all the time. I go to the bathroom between 10-20 times a day when things are working. But they certainly are not right now. It gets frusterating I'm so grateful to have this group for support. It makes you feel less alone. My husband is very understanding and is very supportive to. Unfortunately he is on the road right now he is a truck driver. Thanks for everything and for sharing your stories with me.  I will keep you all updated on what happens.     -Jamie

Dear Jamie...I'm so sorry you are really fighting a battle! I wish I could understand though, why the surgeons won't consider an ileostomy for you.  If you are experiencing all of this trial with a j pouch you can't keep going on like this.  I am feeling so sad for your pain.  I wish I could help you.  I will never complain again about my trials after reading this from you.  I will keep you in my thoughts and personal prayer. 

Patti

My surgeon would have put an illeo  on me by now if I had your problems.  She wanted to do this long ago but I refused and am working on getting the Pouch to function properly. 
I can't afford to go through another surgery right now anyways.  It's not the insurance.  We live on one paycheck now.  We had two.  I could do it if my finances allows it.  Insurance would cover it all except my time  off.  And I am still recovering financially from the first one. Physically too!
I feel for you.  That.... Is a lot to deal with at one time. I don't see why they would not put an illeo on you.  What complications would that cause?  Seems like it would fix some things up!
I agree with that but if your pouch is bad wouldn't it be logical to go to an illeo?  Even with adhesions.  Would strictures still form? I am not that educated on any of this.  My problems have leveled  off but prior to that my surgeon said she could put an end to all the problems I was having by putting an illeo on me.  Some days I wish I had one but I tough through them.  Glad that I have so far.  But that of course is my last resort.
Richard.

Pouches can certainly fail, and a stricture at the pouch that can't be managed might reasonably lead some folks to abandon their pouch (or get it surgically fixed). Adhesions don't really figure into that decision. But if your problems are *caused* by adhesions, pouch removal isn't likely to be a very useful path.

My problems were not caused by adhesions.  Don't know what the problem was or is.  I am just letting time take over cause the further I get away from the original surgery the better it is.  As small as the improvements seem they are improvements. 
I just cannot imagine the problems she is having.  If her pouch and rectum are spasming  uncontrollable there has to be a cause.  I don't know.  Like I said I am not that informed on it.  Just my own personal experience with it.  And I still have some figuring out to do myself.
I hope she gets some answers and relief soon.
Richard.

Wow, I really feel for you. But, I do understand the docs being so leery of more surgery, if it is not clearly indicated. Right now, you need to get pancreas mess sorted out before anything else is done. Surgery may ultimately be needed to release adhesions, but I am sure they want you in the best shape possible before they go in there. Like they told you, they don't want to make things worse.

 

Fingers crossed that things have simmered down some more.

 

Take care,

 

Jan

Jamie, any updates?  Wondering how you are doing.  I just had surgery in March (twice) due to multiple adhesions causing full bowel obstruction.  I was able to fend off surgery 4 times prior to that so it was time for me.  Once, I was in for a week, the other 3 times were about 48 hours on anti-nauseas and pain meds (and NG suction if needed) until things resolved.  So I truly and fully feel your pain and certainly hope that you got to go home instead of getting surgery.  My prayers are with you!

I had problems with the doctor at the hospital. He let me go home. I just seen a collegue of my regular doctor today and he was mad. I have a serious problem with my pancreas it only happens to 10 percent of the world population. And I have gull stones to. Full of adhesions causing my obstructions.  He is contacting my gi doctor and surgeon as he said it's a very serious situation I am in. And he wants me to report the doctor who sent me home. He was very angry about that. He said this is something not to mess with. So right now I'm on strong pain meds around the clock. Will keep everyone updated. Thank you so much for the support it means alot!!!  Sincerely, Jamie

Add Reply

Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×