Skip to main content

Well I Joined the club. On 9th August I had a total colectomy with loop ileostomy (J-Pouch created but not yet ‘connected’).   This was done electively due to dysplasia.  I previously had Ulcerative Colitis but was very well managed to the point I had no symptoms

 

On the whole it went very well, I was released from hospital in 4 days. Surgeon was very happy with my progress and has already suggested the reversal could be as soon as October (subject to pouch inspection etc).   The nurse wanted to change my compression bandages ‘to last the weekend’ but once they were removed she decided I healed so well I didn’t even need the wounds covered. 

 

Despite the fact im sure im doing well (and I know its early days).. I still have some concerns

 

  1. My output is water even if I only eat firming foods. If I take 1 loperomide before each meal then output is fine. Not sure if this is normal at this stage, but just a bit worried firming foods don’t firm me.
  2. I seem to have 2 types of pain, Gas which I just cant get rid of (I was in bed all days yesterday because of this, just couldn’t walk or sit, better today though) I took buscopan and windeze with every meal and that seems to help, but at night my mouth literally fill with saliva because I don’t wanna swallow and give myself gas.
  3. The second pain is very similar to the gas pain, just above the navel a tight stretching pain, that means I have to hunch over slightly when stood or sat.  When I lie down I need 3 pillows under my shoulders (I cant lie flat). I assume this is an operative ‘physical’ pain that should heal over time, but a bit concerned this doesn’t seem to be getting better, when the rest of me is healing so fast. I can lie on my left side for a few minutes, but if I lie on my right side I get pain in the stoma and my middle pain fires off.
  4. I know its usual to get some drainage out the anus, but I seem to be getting quite a lot.   It makes me feel nauseous until expelled.   Fortunately I have found a way to expel quite easily, basically hot water in a tub, splash the water over the anus and it drains immediately with no straining at all.   The drainage seems to be the same stuff that comes out of my stoma (not blood or puss) so I guess my Jpouch is actually fully connected, just not ready for full function yet.

 

In summary I think im doing well, but with the above concerns and battling with the ostomy bag im still finding it quite tough. I guess im really after re-assurance that number 3 is about par for course at this stage of the process, and hopefully my tip for 4 will help someone.

 

Cheers

Replies sorted oldest to newest

It sounds to me like you're doing great! You're less than two weeks post-op, so some adjustment is expected. I do worry that if you're afraid to swallow saliva you might not be getting enough fluid, and you do need plenty of fluid. You might get some benefit from soluble fiber (like Metamucil), which I prefer to loperamide, but  perhaps you could ask your surgeon's office (and I think you're using loperamide perfectly). Thickening foods really vary from person to person. Pay more attention to how they work for you than how they're "supposed to" work. 

Are you walking enough? It will help the gas move through. 

Scott F

Cheers for your thoughts Scott.   I think your bang on with both bits of advice you have given me.  I need to drink a bit more water and I need to walk a lot more.

I made the association shortly after posting between dehydration and stomach cramps so making a real effort today.  The problem is when you feel ill you don't really fancy eating too much or drinking, so im finding it difficult.  I need to up my game though.

Regarding the walking.  Im up and moving around the house, and I have been to the shops (once), but the pain in my middle makes me hunch forwards which hurts my back if I stand for too long, so im very weary of going to far.

Will try and do a lap or 2 of the block after tea, because I can feel my energy level dropping with each day I don't get out and exert myself.

 

Cant believe how brave everyone is on this site.  For me everything is going good and im still struggling and finding the whole thing very scarey, some guys have a nightmare of a time and can still stay positive....*respect*..

Bobish

Bobish, just to add to the above comments, another possible reason for back soreness can be from leaning forward while pushing the IV pole postop in the hospital. The "legs" of my IV pole were so wide that I literally had to hunch over to reach it. In any event, as uncomfortable as you are, it all sounds pretty normal and what most of us go through!

Lambiepie

Cheers for your thoughts LambiePie,  but I didn't have an IV pole in hospital.  They took me off morphine day 2, and onto oromorph.  The only thing I did have (which annoyed the heck out of me) was a rectal drain which was sewn into place).  I couldn't really walk or sit so I stayed in bed.   It didn't seem to be doing anything so I was pushing for the drain to be removed and the doc just said I could go home if I wanted.  Of course now the drain is removed, im seeing I do have some discharge and it makes me nauseous.  No way I would have kept the drain in for 2 weeks though.

 

the hunched back isn't 'learnt' its a result of direct pain I feel in the middle when I straighten my torso (be it standing up or sitting down).  Just wondered if that's normal 2 weeks on, when everything else is  progressing so well

Bobish

1. When I still had my stoma (I have a pouch right now) I can remember that the stool varied quite a lot. Some foods made it nearly water-like, some foods helped to keep it firm. But in the beginning everything was more or less water-like. I can't name any time frame but I'd suggest you give that some more time. Furthermore it's already working with Loperamide, so that's good

2. I know that pain. The only time I had it constantly was when I had a double-ended stoma. So I was in hospital, I was operated to form the pouch (it was made in three steps, first take out my whole colon and form a stoma, second form a pouch with double-ended stoma and third reconnect). Actually I should have lived with that double-ended stoma for some time (so that the pouch has some time to rest) and then be reconnected. But at step two, with this double-ended stoma, I also felt a lot of pain due to gas. It didn't get out and distended my belly which caused the pain. Somehow there must have been something wrong after that operation, maybe my intestine was somehow strangled. The end of the story is that my doctors decided to reconnect after two or three weeks where these symptoms didn't get better.

3. Can't say anything here

4. When I still had my stoma I also had leakage out of the pouch. As you said, it's quite normal. It was some kind of mucus. It wasn't too much but definately noticeable. I suggest to keep an eye on that and try to train your sphincter. Anal leakage is a common problem, though, even when you are reconnected. But everybody has different experiences and you are in a very early stage. As I said, train your sphincter as good as possible and don't worry about that leakage yet. The consistency of this mucus is nowhere near the consistency you'll most probably have when you are reconnected.

Hope that helps

E

Hello, Bobish. Your pain will go away soon. I had pain and walked hunched over for many weeks, also had difficulty catching my breath. it felt like a too-short steel rod had been tightened in my incision and could not straighten. Your tissues and muscles were cut and now they are trying to heal and knit together again. Everything is tight and stiff. But the incision and scar tissue underneath will soften and heal. 

I had weakness and pain in my lower back and could not even bend over the sink to brush my teeth. The abdominal muscles do so much work we aren't even aware of until they are not there. In a couple of weeks your abdominals will strengthen as you walk more and resume your normal routine. You will be okay. Do not lift anything heavy. I probably spent eight weeks hunched over from incision pain: because of adhesion complications during takedown I had to be cut open a second time on my big incision, which had already started to heal. Now I garden, drag bags of soil around. I don't dare lift heavy things; carefully drag them if you have to. 

I still cannot lie on my back completely flat though. Still need pillows under my head and knees. But I am much better than I was two months ago. My takedown was in April. You will be okay. Keep walking, even if hunched over. Lots of protein foods to help those tissues heal. Walk a bit farther each day. Good luck!

Winterberry

Add Reply

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