J-Pouch Surgery, Ulcerative Colitis...sorry if this is off topic :)
Hi everyone! My name is Alyssa, and I'm 17. I wasn't quite sure what category to put this in, and I'm not even sure if this is on topic enough for a Primal forum, but I do need advice! I'll try to keep it short
I was diagnosed with ulcerative colitis 2.5 years ago, and since I didn't like the prospect of being on meds for the rest of my life or loosing my colon, I tried a few different diets to see if I could cure myself. First I tried the raw diet, which was not successful. Then I was gluten free for a while, but it still wasn't enough. I finally settled on the SCD, which I've been on for 2 years. It's basically Primal- no grains, no sugar, no lactose- except WAY more strict because you can't even have a speck of anything 'illegal' or it will mess you up. I've actually experienced this, so the strictness is actually quite necessary.
So, I consider myself Primal, but the thing is, I haven't been able to do any lifting of heavy things or sprinting for pretty much the whole of the past 2 years because it makes my symptoms flare. Oh, and I also can't eat any raw fruits or veggies (no big ass salad for me!) for the same reason.
Though my diet has somewhat controlled my symptoms, I haven't gone in remission yet, and none of the meds have worked, so my last option is J-pouch surgery where they would remove my colon. I was wondering if anyone on here has dealt with colitis, or Crohns, or had this surgery, because I've been talking to some people who have had J-pouch surgery and I feel like I can't judge too much by their experiences because they all eat whatever they want! I really want the perspective and experiences of someone PRIMAL who has dealt with this, but it would be helpful to talk to anyone who has gone through this if they'd be willing Thank you so much, and I apologize again if this isn't a primal enough topic to merit posting!!
Oh, and I was also thinking about my diet afterwards, if I did decide to get surgery (which seems likely). Does anyone have any opinion on occasional indulgences such as potatoes, cheese, and rice? I know the usual recommendation is to avoid if you want to loose weight, but because of my colitis, I've been chronically underweight and would really need to gain weight. But also, these things are supposed to be harder to digest? It seems like a catch-22. I'm hoping my small intestine has no problems, but as you can imagine, I would be more inclined to baby what I'd have left of my digestive system!
Okay, I'm done, now, and really impressed if you're still reading I SO appreciate any insight or guidance or advice you want to give me! And sorry if that was confusing; hopefully my abbreviated description of my situation made some sort of sense
I know there thereare several Crohns disease sufferers on the forum and at least one with a J-pouch. I'm responding to bump this up for you to see if they see this and respond.
Yay, thank you!! I'd love to connect with them, hopefully they'll see this!
I'm new here and also have UC. I was diagnosed a little over 3 years ago, though I had it longer than that (I'm REALLY stubborn about my health and didn't go to have it checked out for almost a year after I started having symptoms).
I switched over to Primal in Febuary of this year after a really bad run of symptoms that had been going on for about 5 or 6 months. My doctor wanted to put me on immuno suppressors. I declined as I work in a hospital and immuno suppressors don't sound fun at all. I am however taking Asacol which is for Crohns. I was originally on Pentasa which is geared towards UC, but have had better results with Asacol, even though I don't have Crohns. The two are the same drug, they just get released in the system a little differently.
I have slowly been tapering off my meds. I still take a pretty heavy dose, but it is less that what I had been taking. Like you, I can't cheat. I think gluten kicks my butt the most as I don't really have problems with rice or corn. But man, bread stuff... I've found that seafood works wonders for me. If I eat seafood (especially bottom feeder fish) for a few days my system gets right back in line. I also tend to eat more meats and eggs as it has the best effect on my symptoms. I still try to get my veggies and friuts in though for the nutrition.
The diet isn't enough for me, I do have to still take medication. However, I can take less oppressive meds with sticking strictly to the diet. I walk a lot. I do sprint from time to time and do a lot of pull ups, but I'm not any sort of fitness mogle. I'm lazy in all reality. See if maybe Asacol will work for you and try to stick to the meats, especially seafood and see if it works for you. I wish you the best of luck!
Hey Tony! Thanks SO much for responding, I really appreciate it Though I was dead set against meds of any sort from the time I was diagnosed, I did actually try asacol, and unfortunately, it made my bleeding and cramping worse. Now I've been through al of the immuno-suppressants, and none of them worked for me.
I definitely feel ya on the gluten!! Rough stuff, for sure. That's interesting about the bottom-feeder fish. I hadn't really noticed any change in my symptoms when eating seafood, but next time I have fish I'll see if anything's different.
Thanks again, and best of luck to you as well!
Adrianag showed me this thread. Sorry I missed it.
I think I can answer your questions. I had UC from 1986 to 1991, and had to get the j-pouch in 1991 since things progressively got worse. I have lived with it for 20 years as of tomorrow, and I would not hesitate one second to do it again. You don't realize how sick you have been until you get that colon out! If I had it to do over, I would have spent less time taking Prednisone and just gone for the surgery.
I also tried to solve it with diet myself, for about 2 years. This was before the www, so I spent tons of money at the bookstore and the natural food store trying to stay away from a gastroenterologist.
Unfortunately, UC is just not something people have much luck with at all as far as treating it with diet, or waiting for it to go into remission. There are a variety of meds people can do, but it basically doesn't go away. You can maybe find ways to improve symptoms and have less bad days, but the constant cycle of flare up degrades the colon, and depending on what meds you are taking, the side effects add up.
If the doc suggests going for the pouch, I would do it. It's likely just a matter of time anyway, and some of those drugs will be damaging in the meantime.
As far as how to eat now, avoid sugar and gluten of course, do primal, and look up anti inflammatory foods and spices. I wouldn't be afraid to google anti inflammatory supplements and experiment. UC is colon inflammation out of control.
You also want to supplement b-vitamins and minerals, because these are things an inflamed colon doesn't absorb. My favorite when I had UC was Twin Labs Super Rich Yeast Plus. It's strong on B vitamins and packed with minerals, just what you need right now. You also may want to try L-glutamine.
As far as eating after j-pouch surgery, its pretty much wide open. Whatever you ate when before you got UC, you can eat again. It takes a little getting used to in the beginning, but it settles down. Try to avoid the lomotil and drugs like that and let your body handle it.
The best support site is The J-Pouch Group There are plenty of people there that have been there, done that, and you will find a lot of good advice. Just don't bring up Primal...The readers are a bit too hung up on conventional wisdom. There is even a Metamucil Wafers rep that is a busy member, and guess what the #1 ingredient is-wheat flour! ug! I gave up arguing with her.
One last thing...I don't know what drugs you are using now, but if you get a pouch, beware of side effects even after the surgery. I was on Prednisone for 2 years, and didn't know how much damage it did, and neither did doctors. It's a very long story, but my health got worse and worse for years after surgery, starting with weight gain, then thyroid, then adrenal fatigue, and it took literally 15 years to find a doc that would get it right.
Even with that, I would still go for the pouch if that is what the doc says. You can have a long and productive life with it, and not have to worry about managing an energy-killing, unhealthy condition the whole time. I haven't done any drugs at all for many years. The only problem is occasional pouchitis, but that is cake compared to UC.
I was able to race some motocross after I got my pouch, and spent 10 years travelling every weekend as a motorcycle photojournalist. The pouch didn't slow me down, and I wouldn't have even attempted it if I was trying to manage UC. I went to 450 events and about 12 countries from 1997 to 2008.
I wish you the best of luck and health. I know what you are going through and its very tough. Don't hesitate to ask if you have more questions, and sign up at j-pouch.org.
Last edited by DFH; 05-16-2011 at 07:11 PM.
Hey DFH! Thank you so much for your reply! That is actually just what I needed to hear. It's been a hard decision, considering it will effect the rest of my life, but hearing about your positive experience and the fact that it IS possible to be primal with a pouch is really encouraging.
One thing, when you say you were sick for 15 years after the surgery, was that from prednisone? Were you still taking it, or was it just after-effects? Hopefully I won't have that problem, since I haven't been on it for 2 years; just a few months. Definitely good to be aware of though!
Again, thank you so much, and you might be hearing from me again in the future with more questions
Originally Posted by shine4Jesus
Right after surgery, I was off all meds and had a couple of months of feeling like a million bucks. I felt OK, but weight started creeping up. Plus, in the hospital, I had a visit from the hospital dietitian and she gave me the "low fat" lecture, which I unfortunately followed.
I tried exercising it off, but it kept creeping up, about 2 lb a month on the average, no matter what. By the time I was up to 245 a couple years later, I started doing hard cardio (motocross, very strenuous) and after 6 months, all I did was manage to keep it at 245.
Then came fatigue, skin problems, sleep apnea, more weight. All this time I was on no meds. A few years later, more weight, hypothyroidism, and then by the time I found a good doc, I was over 300. This doc found problems with the synthetic thyroid meds, adrenal fatigue, and chronic fatigue syndrome.
This was a thyroid/hormone doc, one of the best places in the country. The fix was the right hormones and low carb... Very close to Primal.. He said do south beach and stay on phase 1. This fixed everything pretty much.
The best we can figure is that the prednisone and stress of 5 years of UC did the damage, and no one knew. I'm sure the low fat diet made it worse too, but atbthe time, who knew?
That's why I was saying beware of the long term effects of the UC meds, and follow up even if you are off meds after surgery. The docs I saw for years just didn't know what to do.
BTW, if you join j-pouch.org, don't worry that so many people are talking about pouchitis. It can happen but it's nothing like UC. 10-20% will get it sometimes and usually a week of flaygl knocks it out. The site has a lot of discussion about it because the people that need help tend to hit sites like that, and you don't hear from the majority that are doing just fine.
I hope I got across that if the doc says a pouch is the best option, that you feel good about it and don't delay. Pay attention to your body afterwards, stay primal, and don't hesititate if you suspect thyroid/adrenal issues later on. You have to be your own doc. Don't be shy about getting help if stress becomes an issue either, that eats away at health.
I don't want to scare you, but in Dec my pouch developed a small hole near the opening. I've been seeing a surgeon all year about what to do. This morning I'm going in for a scan to decide how to fix it for good. The doc said after 20 years, the pouch is in great shape, just a very rare and unexpected small hole in it.
Wow, thanks for the info DFH. I'm learning a ton here as well. It seems most doctors just want to throw pills or injections at me at tell me to stay away from veggies and excessive sugar. I'm not okay with that. I'd rather make lifestyle changes than take meds. I feel fortunate in that I'm not so bad as to need surgery yet, but the last time I was at the doc's they didn't rule that out. I'm holding out while I can, but I don't know how long it'll last.
On a side note, I used to do a little road racing have have been getting into riding dirt more lately. Don't know if I'm ready to jump into racing motocross yet, but its not out of the question either. Post up a few of your pictures sometime!
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