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
- 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.
- 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.
- 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.
- 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