HELP! Husband feels like he's tried everything...

Anyone on various UC meds & doing the SCDiet? Is it working for you? And if so, how long until you saw a change and believed in the diet? My husband is still seeing blood & we've been STRICKLY doing the diet since his release from the hospital on 1/23/10. Frustrated because we want to know if it's going to work. He's 6"1' and has lost 20lbs, down to weighing 141lbs...the diet isn't putting any weight on him. Any suggestions or success stories would be a lot of help. Still having 8-10 BMs a day. Anyone else taking remicade? How long until it started working for you? Should he not do the diet while taking all the meds right now, would it be better to wait? Are we trying too much at one time??

Husband was diagnosed with left sided UC in late 2001. Started off on Asacol 3 pills 3 x's daily with no issues until 2006. Flare Dec 06 thru March 08 (started right before & continued throughout a 15 month deployment to Iraq). Haven't truly been in remission since then. Tried various meds and nothing has seemed to work. Hospitalized (1st time) in Jan 2010 for 12 days. Did various tests while in hospital: lumbar puncture, colonoscopy, urine & stool samples, blood tests...all for various things and all came back negative! Eventually looked for CMV gastroenteritis/colitis and came back positive. Of course the colonoscopy showed left sided colitis (10 inches) but according to our doc it looked good, he was excepting to see it extremely inflamed b/c of all the issues my husband has been having.

Currently on: Prednisone, started @ 60mg now down to 35 mg, drop 5mg each Friday; Remicade, going for 3rd treatment soon, Colozal 3 pills x 3 daily; Rowasa, when needed; Valcyte (for CMV gastroenteritis/colitis) 450mg 2 pills x 2 daily. On the SCDiet.

Have Tried in the Past: Asacol/Canasa/Probiotics/Iron Supplement/Multivitamin/6MP/Dicyclomine/Fish Oil/Lact-Enz/Zymex II/Cholacol II/Benefiber/IntestiNew/Super Acidophilus Complex

Thanks!
Worried_Wife

Why canned spinach? You ate it to help your UC??

Thanks for your response.

Yeah, I was eating it specifically for the UC symptoms. I was sorta forced to eat it too, since I had got so sick I really couldn't tolerate much more than that and a baked potato. Actually wasn't even able to lay in any position other than curled up on my side, because of the stress it put on the colon. It's one of the easiest things in the world to try, and even though I am doing much better I am still focusing on eating a can every 3 days. This is first day I haven't had a BM in at least a year. There's a rather large thread on spinach/sunflower diet here you can search for.

I did go into remission once with a course of Flagyl too. There are just some things that work at certain times, and may never work again.

They gave him antibiotics while he was in the hospital. He was admitted b/c he had been on 6MP for 7 days (as well as been on Prednisone since Dec 10th) and started having a fever & headaches. The doctor was concerned about the fever so he admitted him. Did all the various tests b/c the fever would not go away. Checked for c-diff twice...negative both times. That was the most frustrating part, although we liked that all the tests were coming back negative, he wasn't getting any better and they had no idea why. That's when the CMV came to light. We weren't convinced he had CMV until later blood tests proved positive.

Dr-A - This sunflower/spinach diet sounds interesting although looking through the old posts I can't find the actual guidelines for it...does anyone know the specifics?

imagardener2 - I find your modifications to the diet very interesting. I don't think my husband should try the yogurt or the dccc, just my opinion...something about dairy regardless of the science behind it cooking longer...I just don't think it agrees with him. We have also wondered about the welch's grape juice and it being too much too. But what else can he drink besides water? This diet is kicking his butt. He has a major sweet tooth, and it's a big deal for him to have followed it this long, but that hospital stay was brutal. We were willing to try anything after that. Especially b/c we have a baby now. Everyday it's something different and everyday we go through questions...is it too much almond flour, is it red meat, is it the CMV, the prednisone, the honey, the dccc, the yogurt...it's never ending. And he HATES the weight loss, he didn't have any weight to lose to begin with and it was a huge shock to the both of us when we realized it was 20 lbs. And like I said earlier, it's not coming back fast enough, or at all for that matter! The urgency & blood are the most discouraging part.

mbx5 - the doc put him on an anti-anxiety med while he was in the hospital, he said it was to help him relax while he was there but he did not continue him on them once he was released. It was only administered at night too, I can't remember what it was called. On another note, we are in PA as well, central PA though.

Hi - one thing I noticed on his meds is that he is tapering pred. even though he is still having severe symptoms.  I never taper the pred until my symptoms are under control, otherwise what was the point of being on pred in the first place.  Of course for some people pred. does not work well.

For me diet makes very little difference.  The only things that bother me when in a flare are red meat (to some extent), eggs (but I have a slight allergy to them anyway) and artifical sweeteners.  When not flaring nothing bothers me.  Since he is loosing so much weight it might be better for him to eat heatlhy but not restrictive at this time. 

Have the doctor's discussed the pro's and con's of surgery in your husband's case?

So sorry you guys are going through such a tough time and I hope he gets better soon!

Worried Wife

I just received the book "Life Without Bread" today and suggest you look in the library or get one to read. Very interesting. It's not the SCD diet but more like the diet I'm on which is SCD-modified (no dairy esp). High protein and low carb.
It is not specifically about UC/Crohn's(many diseases are discussed) but there is much information about both and how they were improved through diet modification.

In regards to your concern about weight loss it is addressed and shows photo of a man who was severely underweight before beginning their diet and well nourished and healthy afterwards. He did not have UC however.

I agree with the poster who wondered why pred. was being tapered without reduction of symptoms. Talk to his doctor and ask why the reduction with no improvement.

The book does not recommend stopping meds.

I would however stop the sweet tooth. Both the SCD or the "Life without Bread" thinks thats bad.
Yes the diet is tough but it cannot hurt you, it is full of nutrition and vitamins.

This is the first time I've ever written anything like this, but after reading several posts, especially Burli's, I think I'd chuck the diet.  If your husband has stuck to it for so long and seen so little improvement... in fact, isn't he getting worse?  Why stay on it? 

I have no answers on how long to give anything a try, but if he's lost that much weight in that length of time, it doesn't seem like a good choice to me.  If there were any improvement, maybe it would be worth hanging in there. 

Personally I thought the book was so poorly written with the additional chapter on helping autism thrown in that I kind of felt ripped off after getting so excited and buying it.  And I admit, after I read the book, I never did try the diet.       

He's tapering off the prednisone because it's the devil LOL the doc wants him off it too, the idea is hopefully the CMV meds & the remicade will kick in and make everything better...he's just been on prednisone for so long and he, we, the doc want him off asap...but carefully of course.

Each day is different, not everyday has been so bloody & urgent & constant BMs. It just seems like it lately and we are back to square one. Right before that he had two BMs that were solid & normal which was really exciting but the very next day this happened. He's keeping a journal to help figure out what foods may be causing the urgency...we believe red meat is one of them. He's been eating the SCDiet cheesecake with the DCCC in it like the book suggests...but he hasn't had it today so we will see how it goes (I'm hoping he gets better by avoiding it). He's also stopped doing the yogurt, he was only eating a couple of tablespoons of it mixed with the homemade apple sauce...but has been off that for the last two days b/c of the reaction he's been having.

The sweet tooth is under control right now. Since he's been on the diet. He realizes that even if he comes off the diet he can never go back to eating laffy taffy or nerds ever again...he LOVES nerds on a rope but has finally come to term with the fact that those types of sweets are off limits!!

He's decided that he's going to give the diet only so much more time before he stops and introduces other foods back in, with caution of course. Not sure when that will be but he will have to figure that out on his own. I can only support his decision. His Mom found the diet and told us about it back when he was deployed. She was even trying to send him packages with SCDiet approved foods and get him to obey it while in Iraq, which was impossible. Talk about adding stress to an already stressful situation. It's just seemed to be an on going nightmare, but these past few months have been the worst & it just doesn't make sense. He's eaten better, stress level is down, life is good other than the UC. Our current situation is ideal but he can't even enjoy it b/c of his urgency with the UC.

I'm ranting...anyway...I really enjoy this site and reading everyone's situations & opinions too.

Thanks for all the advice, keep it coming!!

Worried_Wife

Yes, it did...thanks! :)

Thanks wolverine2

I believe rice will be the first thing he eats once he stops the SCDiet.

He's been eating tons of chicken, we've tried beef patties & steak but like I said before red meat doesn't seem to agree with him. We eat salmon almost every other night too. He's also eating turkey & turkey patties. For sides we've done carrot to start with, then introduced zucchini, avocado, tomatoes...all cooked soft. He's so sick of eating homemade chicken soup...with only the allowed carrots, chicken, & broth...have introduced almond flour, had the pancakes, some bread recipes, muffins, all in moderation. We read labels like crackheads. Everything is organic and/or fresh. He's hungry all the time, he eats non-stop, even before the diet he ate all the time! Was an avid runner until a few months ago...he's always been in great shape from his love of running and the PT from the military...this just sucks! If we could just get the urgency under control it would be a lot better. He would love to just be able to "hold it", it's something he can't even imagine now. Ugh!!

I just ate rice, potatoes, noodles, and chicken, and some boiled veggies til I got better. I just did it because the doctor said starchy foods would help slow things down. But really I dunno that it did anything. Food doesn't do much to me. Although apple juice cramped me up and salad just didn't get digested.

What do you mean he had a reaction to the yogurt? I can't see a couple of spoonfuls doing much. Also what kind of yogurt? I eat a cup or two of Activia every day.

Give him one lil treat at some point or he might quit, lol. I was soo sick, boiled chicken all the time, I was tired of it. Then dad gave me a cinnamon roll (with icing) and I was like, giddy XD

Oh, and what did the fever end up being? Was his bloodwork okay on the 6mp? How long did he take it? It takes a while to kick in.

I highly recommend this diet which has personally worked for me and a few others I know. It's an Indian diet so consult with someone first if you are not sure what any of the items are. (it is vegetarian)

Vegetables
Broccoli
Cauliflower
Pumpkin
Zucchini (peel off skin)
Tindora (cooked really well)
Parvar
Tomato (w/o skin - ie. soup).....remove seeds???
Masoor Dar (not orange)
Powa (thin type....can put in warm milk)
Chole (not canned)
Squash
Carrots (must be steamed)
No peas
 
Fruits
Grapes - Red (best as juice w/o skin)
Pomegranate (fresh fruit or can make juice from fresh fruit)
Pears
Apples
Cherry
 
Other
Oatmeal
White Rice (Brown Rice is best)
Seero (not from Grits)
Mohanthad (use very little Ghee and little sugar)
1% Milk (never cold and never with Yogurt)......I think this needs to be updated??
 
Ingredients
Dhana Jiru (cumin seeds have to be made into powder via heating, smashing and removing chunks)
No mustard seeds - rye
Canola Oil (olive oil best)
Salt (small amount)
Best sugar = Sacrid (Jaggery or Ghore)….or if not then regular sugar
Whole Wheat Flour (for rotli - best brands are King Arthur or Pillsbury Whole Wheat)