A sort of success story if it's helpful

I don't post on here much, but felt that this might be useful to some people.

I've got inflammation at the end of the rectum, about the first 12-13 cm. As you all know, that's all it takes for urgency and frequency and bleeding, which is what I had for years. I spent most of 2007-2012 trying to find something that worked while I went up the medication ladder. When I was prescribed 6MP I made one last push at trying everything I could as an alternative, and fortunately found something. I've shared it before anyway. I guess that's not the important part.

Anyway, since 2012 I've been so much better. I wouldn't say I'm completely symptom free, but life is very different.

The reason I wanted to post is that this weekend I completed the Bourbon Chase. This is a 210 mile relay race. I was on a team of 12 and ran three legs, 4.5 miles, 5.5 miles and 7.4 miles in 24 hours. The first and second legs were extremely hilly, so they were tough.

This meant 24 hours in a van with my team, moving from exchange to exchange, portaloo stops where necessary, 2 hours sleep, funny food, and of course a lot of running which can be hard on your stomach. It also means I managed to complete the weeks of training I needed in order to be able to do something like that. It felt like a big achievement - please forgive my self-congratulation. But when I thought back to how far I've come since I was sick, and how unthinkable trying to do something like this would have been a few years ago, I was really struck by it. I feel like all the work I put into finding out what works for me was worth it.

I know we're all different, but I just wanted to share in case anyone finds this supportive to their struggles with this annoying disease.

Good luck everyone.

it's a great news, congrats!

What worked for you?

Sorry - wasn't trying to be enigmatic - I've posted what I did on here before. And sometimes it sets people off on here when you say "I think this works". Also I think it's clear that different things work differently for different people, so my point was more about how it is for those of us who invested a lot of time and energy in trying to find what works specifically for us and how in my case I feel it paid off (in case others are, reasonably, tired and want to give up).

For what it's worth what I did was relatively simple in the end, but it came after years of time and money poured into all sorts of supplements and other things. I mix a teaspoonful of psyllium husk powder into liquid every morning and drink it. I also took a food intolerance test and modified my diet accordingly. That's it.

I have other things I do sometimes, but it's the psyllium husk that does it. If I don't take it for a day I see a change in 24 hours. Whatever's underlying is still there. It's just that the psyllium husk seems to bulk up the stool and slow motility and that gives my gut a break. Some people also think the psyllium seed breaks down into, inter alia, sodium butyrate, which maybe helps. I don't know. I just know if I take it I function fine, if I don't I gradually decline until about 5 or 6 days later I'm struggling again. And after taking it for two days I am better again. I've done this a lot of times, for example when I've traveled and forgotten to take any powder with me an deteriorated and then improved immediately I got home and used the powder again, or when I let the powder run out by mistake and had to order more.

The food intolerance test is also useful. I had one that gave me a red, orange and yellow list. If I eat things off the red list I get bad stomach cramps a couple of hours later, and then it's about 4/ 5 hours of what is more or less like colonoscopy prep. Once I cut those things out I was much better. I would get this cramping and violent diarrhea about once a month, maybe more. Since the test it's been more like once a year, and on each occasion I have a pretty good idea of what I ate that did it (it's never happened when I've been eating food I prepared for myself).

As I said, we're all different so this may do nothing for you. But I was annoyed that no doctor ever suggested this - in fact they told me avoid fibre. It's not good when I'm able to get myself to more or less normal with a teaspoonful of fibre powder a day, when the doctors wanted me on 6MP for life, with monthly blood tests to make sure it wasn't killing me. Really shakes your faith in them.

Hope that's helpful. Again, sorry if I seemed like I was being enigmatic - not my intention.

Yes - had a scope. GI said I had little to no inflammation. In my case at least there's not much ambiguity about whether there's inflammation or not. When there is there is usually some bleeding and also my stool is very thin.

I still take mesalamine as advised by the doctor. It doesn't seem to carry much risk if any. But I'm not convinced it's doing anything (maybe some prophylactic effect, but how would I know?).

My big mystery is why, given there's barely any inflammation, I'm still symptomatic if I don't take the fibre. Doctor has no idea. She just says if I have something that works to keep doing it.

I went to a nutrition type doctor here in NY and the food intolerance test was done through him but I think you can get it done anywhere in theory. I believe the company was called ALCAN.

I should say, lots of people think these intolerance tests are unreliable. I just know it's working out for me for whatever reason.

Just on the point of not discounting the mesalamine - which would be the case for any maintenance medication I guess - I get the reasoning. My only issue is that my faith in the doctors that I see not to overprescribe is a bit shot. I've read the research on long term mesalamine use so I'm willing to go with it while my insurance covers it because I don't believe it will hurt me. But I do hesitate taking pills indefinitely when I have no evidence they actually do anything.

I am a lot happier when I've tested something myself and can see what it does (or doesn't) do. The idea of taking something forever because maybe if I didn't take it something would happen is a bit like that old elephant powder story (the man who sprinkles powder on the road to keep the elephants away and keeps doing it because he's never seen an elephant on the road).

Probably what I find hardest about this is I've yet to find a doctor who seems to genuinely have any good ideas beyond moving me up the medication ladder a step at a time. And I've been to a number in NYC including people who are supposed to be the best. That's why I've determined to take things into my own hands a bit - not to a stupid extent, but certainly not to hand over my health exclusively to doctors.

"Poo poo the idea"

How apt!

PalaceDan, I read in another thread you were once trying sodium butyrate suppositories and had great success per the flex sig results - did you stop that? If so, why?

PalaceDan said...
after years of time and money poured into all sorts of supplements and other things. I mix a teaspoonful of psyllium husk powder into liquid every morning and drink it. I also took a food intolerance test and modified my diet accordingly. That's it.

Very similar to what works for me. Soluble fiber like psyllium husk helps but I find that powdered psyllium SEED to be far superior. It might be because the seed more readily breaks down into butyrate by my gut bacteria, and butyrate nourishes cells in the colon. I also find that taking probiotics with the pseed seems to increase its effectiveness.

I am another one of those guys who finds food intolerance tests to be unreliable and official UC diets don't work either. You are lucky to find a simple test that tells you what you need to avoid. For me keeping a food diary over the years has enabled me to isolate foods that trigger symptoms.

Monitoring my diet and taking powdered psyllium seed, especially after eating something that begins to start symptoms, is how I stayed mostly in remission for the past 10 years.

Great to hear about your successes. Thanks for sharing!