Anything better than Ensure?

I'm actually posting on behalf of my husband. And this is my first post, so if I'm doing it wrong, please forgive me, not sure how to list his meds correctly. He's probably had ulcerative colitis for years, but it was finally diagnosed 3 years ago with a colonoscopy. He has been on Endocort since then, 3 daily, then 2.

He tried Lialda but it caused severe arthralgia pain and he had to discontinue that.

He has been in a major flare since the beginning of November. It was brought on by Vimovo which his family MD said was safe for his U.C., unfortunately, she was wrong.

To date, he has lost 34+ pounds, down from 200 to 164.

Back in Sept. of 2011 he weighed 309, started Weight Watchers and did quite well, (his goal was 199 which he reached) but when he got this flare, really had no fat stores to fall back on.

Because so much seemed to trigger the gas and cramping, he pretty much stopped eating and drinking. His most recent albumin was 1.5, drawn this past Thursday. Hemoglobin was 9.4, but is probably much lower as he was dehydrated. Has not been hospitalized only because he is stubborn.

Bleeding has stopped over the past 3 days (finally). Cramping and gas is better over past 2 days, so I think he is finally healing.

It has been a long road for him. He has been working until the past 3 weeks, although has taken time off a few days here and there, then a week over the Thanksgiving, then 2 weeks over the Christmas holiday, then he went in last week and the GI MD told him no more work until he gained some weight and strength as his reserves were nil.

Back to my question, anything better than Ensure?

Right now he is on a low fiber diet. I'm watching his fat intake (keeping it as low as possible as that seems to trigger the cramping), no carbonated drinks, no caffeine. While doing WW he drank no milk, but started craving it when he started losing so much weight. I think because his protein and calcium levels were down so low.

His meds currently are: Prednisone 10 mg. 2 q a.m., 1 q p.m. (weekly taper); Librax TID; Levbid BID; Krill Fish Oil 1 daily; D-3 1 daily; B Complex 1 daily; Lactaid 1 daily; Digestive Advantage Gas Defense Formula (probiotics) 1 daily; Tramadol q 4 hrs. prn; multivitamin with iron bid; gax-x prn. Anucort suppositories, he has difficulty retaining them so stopped using them. No enemas were suggested.

The Ensure I'm using are the High Protein, the Clear Ensure and another Ensure, but that one is higher in fat and does seem to trigger the cramping.

I'm so happy to have found this forum. I've read so many of the posts and appreciate what you all have shared.

I haven't gotten him to read the posts, but as I'm his caretaker...also, his mom had ulcerative colitis and she had an ostomy bag back in the 1970's. He has a cousin with it also, so strong family history.

He's had 2 CT's scans, last one this past week, all showing the extensive ulcerative colitis. I haven't seen the reports, but when we go in for his appt. this week to his GI in Louisville, I'm going to request copies of his scans and his labs.

Also, his GI has told me that there is no need for him to see his family MD and I disagree with that. I'll like some input from anyone on that subject too if you don't mind?

I've had to add the vitamins and supplements on my own, including the probiotics and the Lactaid, suggest having the chemistry panels checked, and had to beg the GI to send him to the ER for the initial CT scan. And he is a good GI specialist, but the lab numbers don't lie.

My husband is severely malnourished despite my best efforts and I do not know what else to do. He has no fat stores left, and his CPK's are also very elevated from his muscle wasting. Thanks for your time.

Post Edited (BobbyzGirl) : 1/21/2013 11:48:51 AM (GMT-7)

Stay away from Ensure. It is packed with sugar and other things that people with digestive problems should stay away from.
My recommendation?
Get away from anything gluten, dairy, sugar.....get on a good "root" diet. Keep meals simple with simple ingredients (ingredients that you are familiar with and that aren't toxins). Get on a really good probiotic that works for you and drink PLENTY of water.
Your husband is much better off if he can arrange his diet so that he knows exactly what goes into his food. Lots of good bland, earthy-type veggies and "sour" fruits. And a small helping of meat (preferably chicken).
This is what has helped me...I know it sounds gross but for the past few days I have had the cleanest poop and I thank my diet for that!!!

the best meal replacement drink or whatever you want to call it in my opinion is "absorb plus." it is expensive, but each serving is over 400 calories and it's the size of a normal glass. the taste isn't bad at all and it has the consistency of milk so it goes down pretty easy.

So is your hubby still running to the toilet multiple times a day?
For many of us, we can't gain weight back until after the flare is under control.

I agree with others who have recommended real food. Bone broth, bland whole foods, veggies that are well cooked, rice.
Ensure would definitely make *me* (not everyone) have some GI issues and, if I were drinking it daily, might even cause a flare.

It is really tough to eat when food seems to be the enemy; I hope you find a plan that works and your hubby is feeling better very soon.

Welcome to the forum.

At his worse, he was going approx. 30-40 times a day. Since last Thursday, the change in the probiotics, adding the vitamins, not sure if this change is the result, but the gas, cramping and trips to the bathroom have decreased. Not stopped, but decreased. Blood free (thank you, Lord) x 1 week. At times, it was "like a pig was gut-shot" according to him.

The probiotics we're using right now are Digestive Advantage Gas Formula. I'm trying to decide between Benebiotics vs. VSL. What's anyone's input on those, that is, one vs. another?

I'm letting him tenatively try foods, and deal with the consequences. He was hungry for clam chowder yesterday. Then he was up all night with gas. I tried to nix the chowder and encourage something else, but again, at 167 pounds when he should be 199, it's trial and error trying to re-gain the weight.

Instead of Bentyl, he has Librax tid and Levbid bid. But again, many thanks for the suggestion.

His albumin was extremely low, not sure if he has ketosis. How would I find that out?

Mornings and nights are still worse. He was up again all night due to gas and cramping, again, depends on food intake. Fatty foods are the biggest culprit, and he pays for it. Low fiber diet.
___________________________
Male, age 57. Weight should be 199. Current weight 167, loss of 34 lbs. since 11/1/12 with current flare of ulcerative colitis. Severe malnourishment, weakness.
Meds - Prednisone 10 mg. 2 q a.m., 1 q p.m. (weekly taper); Librax TID; Levbid BID; Krill Fish Oil 1 daily; D-3 5000 IU 1 daily; B Complex 1 daily; Lactaid 1 daily; Digestive Advantage Gas Defense Formula (probiotics) 1 daily; Tramadol q 4 hrs. prn pain; multivitamin with iron bid; gax-x prn. Usual medication - Entocort 3 daily, multivitamin with iron.

BobbyzGirl said...

The probiotics we're using right now are Digestive Advantage Gas Formula. I'm trying to decide between Benebiotics vs. VSL. What's anyone's input on those, that is, one vs. another?
.

Frankly, can you afford ~$130 for 20 VSL#3 DS sachets? If not, go with Benebiotics. if your colon is inflamed, the environment is hostile for bacteria so VSL#3 is not gonna hold up anyways. I would first get the flare under control and then start Benebiotics. I bought VSL#3 DS but I am not buying it again. First I can't afford it, second, I find it easier to pop in one more capsule than making smoothie just for VSL#3.

I am sorry, I misunderstood his weight. He needs to regain weight but concentrate on his flare than weight at the moment. Force him to eat (but he won't eat unless his cramps and trips reduce). If whatever he is taking is not helping then get Bentyl. Thats the only thing that helps me. I also take Tylenol for cramps.

Blood test is the only way to find if he has ketosis, else smell his breath/sweat/body odor. Does it smell sweet/sugary or similar? If yes, then its Ketosis. (Fat is used for running the body and the byproduct of this method of energy production is ketone bodies, which smell sweet). Talk to the GI about it.

Go on low fiber, some rice/lentil preparation. If you have Trader Joe's nearby, get Masala Dosa from frozen section (Looks like Rice crepes) or regular rice cakes. I have been eating a ton of this for last 2 months.

I hope you are keeping a diary of his foods and the effects. Its essential.

Is Entocort Hydrocortisone or Budesonide? capsule or enema?

Glad he is improving.

He will get better and then gas will reduce but it will take time. Not eating anything is not a solution. He can at least sip chicken broth or something similar, right? I juice fruits and veggies and whatever leftover is, I make broth out of it. I freeze it in small portions and warm it up to drink instead of tea and coffee. It is hard in the beginning but you get used to it.

I just checked and Bentyl and Librax both act in same way so either should be fine.

With Budesonide, AFAIK and whatever research I have read, it is used more for Crohn's and not for UC. Whats his diagnosis? There are trials ongoing at the moment with Budesonide for UC but its not in the market. If he goes on Imuran, he needs to tested for liver enzymes and WBC, platelets before the dose is increased every time. The method I followed, 2 weeks on a dose, blood test, all well, increase the dose, repeat till you reach desired dose (he will be either 150 or 200mg daily) and then 2 weeks, tests, then every 3 to 4 months.