Email from my consultant - "You are on the waiting list and we will get you in as soon as possible for your ileostomy reversal, If that's what you want!" - Why would I not want a reversal??? Is someone not telling me something?
Yes there is! The constant urge for the toilet and the feeling that you are pushing so hard that you are going to force yourself inside out. But come on, Stay positive, It will get better, won't it?
HOW AM I COPING?
The reasons for the problems that follow are due to the removal of the part of the bowel that stores the waste prior to going to the toilet which means that the re sectioned piece that is is now joined is not capable of storing the usual amount of waste and does not have the same type of nerves to be able to sense the same feelings as before. Having a double resection where part of the normal bowel was also removed means that bowel is shorter therefore motions are more fluid since there is less time for moisture to be absorbed into the body.
So how does one manage looser motions, less capacity and cluster urges?
It's been five weeks since the operation to reverse my ileostomy and at no time had anyone prepared me pre or post operation as to what could be expected and the challenges ahead "Eat normally and it may take a while to settle down" was what I was told as I was discharged from hospital.
The thing that you are not ready for are the Cluster motions where I was visiting the toilet several times an hour and doing very little however the straining and feeling of deification was very real. My first reaction was to visit my GP and ask for laxatives in order to completely clear me out. The GP openly admitted a lack of experience in the matter and gave me what I wanted.
The clusters did not get any better and it is only by researching on the Internet did I find that cluster motions could be reduced by increasing the amount of medicinal fibre in my diet in order to slow down the transit time through the bowel and to make the stools more solid. At the moment the answer to this could be Fybogel which when dissolved in a little water and drank twice a day after meals adds bulk, absorbs liquid and binds food waste together.
Other pieces of research mainly from USA based hospitals suggested bowel retraining so that motions could be released at a predictable time of day and reduced to twice or even once per day. One of the suggested program involves.
- The introduction of medicinal fibre (as above)
- Temporary use of imodium or Loperimide to slow the bowel movement down
- Drinking prune juice
- Eating a big meal (causes a peristaltic action in the bowel which moves waste through)
- Drinking a hot drink (also causes a peristaltic action in the bowel which moves waste through)
- Insert a glycerin suppository or if this does not work a Dulcolax suppository
- Going to the toilet
- Over a 14 day period reduce the imodium and suppositories
Well after a few weeks of messing around with no real plan I'm starting to get it together. My feeling is that if I can get myself empty in a morning then it will leave me virtually trouble free for the main part of the day when I'm out and later on this week back at work.
Therefore at the moment I get out of bed then have the following
- Prune juice
- Fybogel with a little water
- Hot drink
- Brush teeth
- Toilet - yes and wash my hands each time!
Later in the evening I'm going to the toilet again, not very often though, and this is fine for me since reducing toilet times from all day to twice a day is really acceptable.
I'm having a fair amount of wind at the moment which I cannot or don't want to hold in but this could be down to getting used to the Fybogel.
So although I'm having some good days I also have a few bad days especially when my motions are loose and / or when I'm close to the toilet. Being close to a toilet encourages me to go at the slightest urge rather that wait and hold myself. It may also be psychological.
I'll keep posting to keep anyone who is going through this informed.