Needing advice

I am 27 and was diagnosed with severe UC - pancolitis in March of this year. I responded very well to Prednisone and Asacol at first but quickly had a severe flare after stopping the pred about 2 months ago. Landed in the hospital for 4 days and missed three weeks of work. My GI put me back on pred, though he is tapering me off again and I am continuing with the Asacol. Recently my GI added 6 mp 50mg and is considering Remicade. I feel great, gained back the weight I lost, and only have 2-3 bms per day. No blood, no cramping. I always respond very well to meds but my doctor worries because I also get very sick very fast. I see a lot of discussion about dietary supplements and nutrion. I have gotten little to no advice about my diet other than the usual low fiber, low residue during a flare. I would love to hear what has worked for other people when it comes to diet and nutrition. Thanks for any advise!!

Glad to hear you have responded so well to the medications. Sadly, most MD's do not think that diet is that important with UC or Crohn's....something that totally boggles my mind!

I would suggest adding B12 to your regimine and perhaps finding a stronger probiotic. The best ones are found in the refridgerated section in health food stores. I'm a big believer that they need to be kept cold because probiotics are live bacteria and they die from heat. Just my opinion :)

Some extra calcium and B complex wouldn't hurt either since you have been on Prednisone.

BananaChips,

Welcome to the forum.

Yes, most doctors don't feel there is a diet connection. But that never made any sense to me.

Here's what's worked for me:

1) Diet is key for me: I do the SCD diet, and I am very, very careful with food combining, because if you mis-combine it creates havoc! Here's some info on it: http://cureforulcerativecolitis.com/step-1-methodology-to-eating

2) Adding L-Glutamine 15 grams - for colonic repair.

3) Adding slippery elm bark powder - 1 tablespoon mixed in a little water, 3-4 times a day - IMO it is the equivalent in nature to the 5asa's.

4) Probiotics are key. If you can get your doc to write you a prescription for VSL#3 DS - that would be better, stronger, and probably cheaper ( IMO 3 x per day at least) than buying VSL#3.

5) Drink lots of good water.

6) Get your vit. d and b12 blood work done, to see if you are deficient.

7) SCD diet - specific carbohydrate diet - many have had lots of success with it. If you can't do it because it's so strict, at the very least do dairy free, wheat free, gluten free.

8) start a food journal and see what correlations come forth

9) Do some research on LDN - low dose naltrexone, you can search this forum as they are several threads on this. I can tell you it works!

10) Adding rectal meds. Are you on any rectal meds like canasa suppositories or rowesa enemas?

11) You may want to add liquid vitamins/minerals to make sure your stomach does not have to do the work of breaking them down, and hence not absorbing them.

12) Also, I've been supplementing with good quality whey protein - Dr. Mercola's Pro-Optimal Whey, which I make with almond milk ( you can see from my sig).

I think the more information you can have on UC and all its issues, the better you'll feel, albeit after you get over the feelings of being overwhelmed by it all (i know, :()

 

Good luck, and I hope you start to feel better soon. Let us know how we can help you.

Have you tried Rowasa enemas?

I eat whatever. Only things I've noticed that seem to upset my gut are a lot of sugar and raw carrots and broccoli.