Hello everyone,
I would like to share my experiences for those who are looking for information on the internet because they are now in the same uncertain situation as I was. I apologize if this post is too long.
I would like to share my experiences for those who are looking for information on the internet because they are now in the same uncertain situation as I was. I apologize if this post is too long.
From the moment I got sick, I read all the tips on this site and watched all the j-pouch videos on youtube. I have to say it helped me a lot. So I would like to tell about my recovery. Maybe I can help someone with it.
In May 2018 my colon was removed after 1 month uc. I never had any problems before that. My world was turned upside down within 1 month. I have had 3 operations, the last one at the end of May 2019. I'm now nearly 9 months into my recovery and it is/was not easy. Physically because of the discomfort and pain and mentally I still have to accept my new way of living with a pouch. But you have to hang on, how difficult it is. We all know that, because we have all experienced the same thing.
I wanted to post my recovery a few times before, but every time something new happened with my pouch, causing me to relapse again. That's also the most important lesson in recovery. It takes a lot of time and it is never a straight line. My way in dealing with the pouch:
I wanted to post my recovery a few times before, but every time something new happened with my pouch, causing me to relapse again. That's also the most important lesson in recovery. It takes a lot of time and it is never a straight line. My way in dealing with the pouch:
1. immodium
I use 5 immodium per day. 1x morning, 2x lunch 1x dinner 1x for bed. It takes a while for your body to respond really well to immodium so don't expect immediate results in the frequency. I take them at least half an hour before eating for the best effect. It's important to experiment with the amount, but also when. It can make a real difference when you take your immodium on the day.
2. BMs
I now go 4-5 times in 24 hours. sometimes I have periods of 9 hours between bm's. I never thought that would ever happen again. But the most important thing for me is not even the number of bm's. For me it's especially important to have no or as few inconveniences as possible between the BMs. The first 8 months I felt the pouch constantly due to, among other things, a fissure. I went completely crazy (see also my previous posts). I really thought that it would never be okay again. When I started to use diltiazem it quickly became less. I apply it quite far into the anal canal and use a plastic glove. I still have days when I feel the pouch or whatever it is. It itches, hurts and is especially uncomfortable. I hope that also gets better because the hours you don't think about your pouch are worth gold.
3. Toilet routine
I'm in the toilet for quiet a long time. It takes at least 20 minutes before I feel that I am completely empty. If I stop earlier, I'm certain that I have to go within a hour and have an uncomfortable feeling that time.
I also have a sort of routine on the toilet. If you see me on the toilet you
I first start with putting a stool under my feet. I make a hollow back with my belly as far forward as possible to discharge the first batch. Then I rock from left to right and lean forward. I stand about 1x minute and repeat that 2x. I always use a bidet bottle and always use sudocreme or diltiazem. If I'm somewhere where I don't have a bidet bottle I just use wet toilet paper to get rid of the worst stool. I use an enema about 3 times a week. After using the enema I'm sure that the pouch is completely empty. I wish I could empty faster. I also read stories of people who were ready within 5 minutes. Wow.4. diet
I still have a pretty boring diet. Most of it is from the list that can be found here on the site. I do not eat fruit and vegetables except banana. I eat white bread and gluten-free crackers. Lots of peanut butter. I stopped using Greek yogurt because of the lactose and now eat lactose-free curd cheese with cornflakes. rice, chicken, potato, fish. Unfortunately no more spicy food because I'm afraid of butt burn. No more soft drinks and alcohol maybe again in the future. It's really very important to drink well. I had a blockage 3 times, which was probably due to too little fluids. I now drink 2.5 liters a day. Since then I have not had a blockage anymore.
5. Bloating
Sometimes I seemed pregnant after eating and I did not know exactly what caused it. I have noticed that good chewing is very important. And by that I mean really good chewing. It seems to help. I bought super digestive enzymes last week but I didn't notice any difference yet, but maybe it needs time.
Sometimes I seemed pregnant after eating and I did not know exactly what caused it. I have noticed that good chewing is very important. And by that I mean really good chewing. It seems to help. I bought super digestive enzymes last week but I didn't notice any difference yet, but maybe it needs time.
6. sleep
1x a night I go to the toilet. I sometimes have days when I sleep through, but they are rare. I really hope that it gets better because sleeping through the night is so good.
7. life
I'm working fulltime again which is getting better and better. My social life, apart from my best friends and family, is not much left of. Which is mainly due to my own uncertainty. I don't dare to go to a bar or party. Hope that if things get better I can someday.
1x a night I go to the toilet. I sometimes have days when I sleep through, but they are rare. I really hope that it gets better because sleeping through the night is so good
.7. life
I'm working fulltime again which is getting better and better. My social life, apart from my best friends and family, is not much left of. Which is mainly due to my own uncertainty. I don't dare to go to a bar or party. Hope that if things get better I can someday.
I will not get my old carefree life back. I try to look ahead and that is not always easy. Especially if you have problems again, have to go to the bathroom again, cannot sleep again. I still have days that I despise this new life, but I am happy that I am still alive. I enjoy the little things more and (unfortunately) you only really learn that when you know what being sick is.
If I compare my current situation with a few months ago it is really much better. It is not my old life but I am now convinced that a good life is possible. Believe me I wouldn't say this a few months ago.
Anyone with problems, hold on and don't give up ...
Greetings
Alex
Alex