I have been suffering since my colon was removed with extremely acidic, watery output, explosive gas and terrible diarrhoea. This has been one of the reasons, I believe, I suffer chronic cuffitis and now pouchitis as the irritation to my pouch and cuff is constant and inflammation cannot heal when this is my output.
I have been discussing this with my specialist nurses and they mentioned that the gallbladder manages bile salts in the body and are needed to digest food amongst other things. However, the colon reabsorbs this to help maintain levels. As I don’t have any colon left, levels can often cause, or exaggerate, some of the issues I have been suffering. If it is a problem medication can help.
I have also been researching this and found that long term antibiotics can also cause bile sat malabsorbtion (BAM), I have been on antibiotics for the last 9 months.
This was very exciting news as I have been saying for the last 2 years that if my output can be managed the rest surely must stand more of a chance to heal. I know I’ll still have disease, but it can improve my chances of recovery!
I recently attended hospital for BAM testing, known as a SeHCAT scanning. I swallowed a slightly radioactive capsule and waited an hour then had some isotope scans done. I needed to go back in a week for more scans. Apparently, this test will help them decide if I am absorbing bile salts sufficiently.
The second visit was quick and painless. Just 10 mins to have more scans done and I was finished, the results were to be sent to my consultant a few days after.
The results came back as positive and my consultant prescribed a medication to help called Colestyramine in sachet form or Colesevelam Tablets which is a bile acid sequestrant, This works by removing unwanted excess bile acids from the body, binding it into your stools rather than it staying in your bowels.
I started treatment on Colestyramine sachets as they are easier to absorb, however, the consistency was awful, gel like with gloopy lumps in it and gritty to swallow, it made me have a gag reflex. After 5 days I gave in and requested a tablet equivalent from my GP. I am starting on 2 a day and can go up to 4 if needed.
The early results have been very promising and immediately my frequency has reduced dramatically, the output is noticeably less irritating to my bottom and things seem more settled. I am sleeping thought the night more often, which is a real first for me since surgery! I am not sure if it is linked as well, but I feel less nausea in general.
I am excited to see if this continues to help reduce the gas, acid and urgency and feel there is a new option to help me fight this and keep my JPouch!