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Reply to "My life with a pouch"

ebazkh posted:
Hello Everyone,
I’m new to this forum. I’m a pouchie since 2005 after a 4 year battle with UC. Before surgery I was on a heavy dose of pred aas well as methotrexate. Since my surgery, I have somehow managed to make a life for myself. Stable job and career, married with two kids. But my life has changed so much in that time. I’ve had to make numerous adjustments to my lifestyle and it has been mentally challenging. I’m just sharing my experience with others with the aim of helping someone.
  • My normal range of bowel movements is 6 to 8 per day but can be slightly more depending on what I eat
  • I find that the more hungrier I am, I will have probably have to go the immediately afterwards to empty the pouch
  • I am unable to eat spicy food as that causes me problems
  • I can pretty much eat anything but food such as soups and lentils will cause loosening of stool
  • When I get food poisoning or gastroenteritis, I become really unwell – last occasion I spent 5 days in hospital as I became dehydrated so was on IV until I was better
  • Metronidazole 200mg is my default medicine to treat pouchitis and help me recover from gastroenteritis
  • I take a number of vitamins and food supplements
  • I don’t really put on that much weight, it’s fairly consistent – but this is probably because I have more bowel movements than the average person so my body loses a lot of nutrients etc on a daily basis I like to think
  • I can’t do any intensive physical exercise – just light exercise
  • My stomach has edged a couple of inches forward after surgery so when I am wearing clothes, it appears that I have a big belly – this is apparently normal, my surgeon said that the operation would move the abdominal wall forward a few inches 
  • I have chronic lower back and neck pain as a consequence of the heavy dose of steroids I used to be on causing a thinning of my bones
  • I have to take one Imodium tablet in the morning to help relax my pouch as it can be prone to pass gas
  • When I go on holiday, I have to take an ample supply of Imodium with me
  • Only my family know that I have a pouch – I haven’t disclosed it to friends and nor to I disclose it to people. Not sure if this is the right approach but it makes me feel at ease
  • When I go on holiday, I make sure I go to countries that have a high standard of hygiene as I am more prone to catching stomach bugs which is not good news for me. When I do have to go to countries that do not have a high standard of hygiene, I make sure I stay away from eating out and instead have basic staple foods and lots of fruit.
  • For some reason, I have developed a craving for ready salted crisps which I find are actually good for me when I recover from gastro helping me to replenish the salts in my body
  • Lucozade and Gatorade are my best friends during pouchitis and gastro as they help me rehydrate
  • I can tell the difference between pouchitis and gastro enteritis. With pouchitis, I have diarrhea and experience pain in my back passage but with gastro it’s just full blown diarrhea
  • I have to use and also carry a supply of flushable wet wipes with me whenever I go out - cannot do with out them
  • I have a 23cm scar that runs from my midrif to my pubic bone area from the surgery and also a small scar where my ileostomy used to be
  • I'm not comfortable with my scars when I go swimming so have to wear a waterproof t - shirt
  • Recently I have had my first instance of an anal fissure, and the pain was unbearable - taking a laxative and procto glyvenol cream to treat it and it's working fine so far but doctor said that I will probably have to try to change my diet altogether as my stool is getting firmer as I get older
So, that's me and my pouch in an overview. How has your life changed and what adjustments have you had to make?

Hi and welcome to the group. I think we can all relate to several of your comments. We are different in how we may react to food, but probably all having bowel movements about 8 times a day (including, for me at least, the middle of the night and possibly again in early morning).  I don't keep my J-pouch status too private, but I certainly don't lead off my conversations with it!  A lot of people don't realize you can live without your colon, so they are interested in hearing how that works. Like you, I am also scarred up and self-conscious about my abdomen. But I am getting older now and frankly, my bikini days are over anyway. I wear board shorts and a tankini to swim and am happy as ever.  I got my pouch in 2011, so I am not as experienced as you. I just wanted to reach out and say Hi.

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