Husband CD or UC

Long story short, is there a veteran out there who has any suggestions for some relief?

Any suggestions about ruling CD or UC?

My husband (40) has been diagnosed with CD on symptoms. Blood, pain and d.

Nothing seems to help....Colazol, Canasa, Entocort, currently on Asacol and Prednisone.

An herbalist headed us in a different direction saying it was a prostate infection radiating into abdomen. After a week of Pygeum he added hamamelis virg. and a week from that, on both, no results. (no history of prostate symptoms anyway, but we are grasping at straws here)

The Dr has only done colonoscopy and said "looks like hamburger meat in there" and other than that has only prescribed meds and said "try this, if it works...." He started with Cipro., Flagil, and I don't remember what else...(with first flare in 2006)

Symptoms with both bad flares are d approx.6X a day with blood. Some days more blood, some days less. Severe pain lower left descending colon. Weak, tired, and shakey on "bad" days.

Entocort increased d to 8-10X daily and waking in the night. Off Entocort stopped that.

He has had minor flare "on and off" since 2006 that he didn't tell me about until this bad one.

First bad flare in 2006, gradually got better with Prednisone over 2 months. This time nothing is helping. We are on a roller coaster.

His blood pressure is high from the steroids, and his potassium in "dangerously low" because of the d  ...along with sleep apnea, risk of heart attack? - ya

He is now taking Asacol 800mg 3xdaily, vicodon tramadl or dicyclomine as often as needed (as often as safe), Prednisone, RX potassium, started today on Intestinew(herbal), Calcium, multi-vitamin and Tums at bed time.

We have reduced gassy foods, reduced wheat, started today eliminating dairy(this is a hard one!), and eliminated fried greasy food.

He is contemplating Remicade.

Any other suggestions would be greatly appreciated. 

 

Mommaduck,

First off, I am SO SORRY your hubby is going through this. This disease is awful when it rears it's ugly head. I have had CD for a little over two years and have climbed the medication ladder. I have been on asacol, 6-MP, entocort, cipro, flagyl, prednisone, and remicade. I have just tapered off of the prednisone (thank goodness) but am still on remicade. For me, nothing was able to control my symptoms BUT prednisone. My doc has just doubled the dosage of my remicade, so we'll see how that pans out over the next couple of weeks since I took my last prednisone pill on Tuesday. In my opinion your hubby should get a second opinion and get on remicade. If his large intestine looks like "hamburger meat" then he should probably be on some stronger meds then what he is on.

As for diet, different things will set different people off. When I'm flaring I used to make my home made chicken and rice soup with just organic white rice, organic chicken, and organic chicken broth. That helped me out the first few flares but didn't work for me the last flare I had. Like mentioned above he should absolutely stay away from fiber, wheat, nuts, spices, etc. He should be on a low residual diet. He could also go on a liquid diet. I've been on a Peptamen liquid diet before, sometimes it works sometimes it doesn't. It just depends on the flare. He should DEFINITELY stay away from fried foods. I now drink goats milk and eat goal milk yogurt and drink goat milk kefir. It's not as bad as it sounds! My body tolerates goat dairy products very well! It took a little getting used too, but it's not bad, I promise! If he's a dairy lover, this is a GREAT alternative. I think it tastes much better too. I do eat ice cream every now and then, but only as a treat.

I will keep you and your hubby in my prayers. Good luck! It took me almost two years to figure out what works/doesn't work for me. And sometimes, what once worked doesn't work anymore. The human body is definitely strange! Please keep us updated!

He'll need more than a colonoscopy to DX whether it's CD or UC (sounds like it's definitely one of them though)...

If his colon looks like hamburger then that could be the result of either UC or CD, with CD there are skipped patterns of inflammation (healthy tissue in between) with UC the entire area will be inflammed...with CD the inflammation can go through the many layers of the intestinal linining with UC it's limited to the surface only...

He should have some small bowel tests done to see if CD is affecting his small intestines...even if there is no inflammation in the small intestine that does not mean it's not CD, as CD can affect any part of the GI tract from mouth to anus (more than one area at a time) or just one area at a time. He should also have the routine blood and stool tests done if he hasn't yet.

:)

Thank you all so much for your input. I am going to try to get him online this evening to read these.

He is on Centrum multi-vitamin. He also was prescribed 6MP, but we are very concerned about the side affects and he has a history of cancer(6yrs ago). So he hasn't filled it nor taken it...yet.

Do you ever feel that there has got to be something else out there to stop this misery, but you just can't find it?!

I hate feeling helpless to make him better. God chose me as his helpmeet, and I'm trying the best I can, but he is trying me some days too ...the Pred is bad stuff

I hate that he is feeling so terrible. When he had cancer he slept. I helped by buying and cooking the only food his stomach could tolerate. (severe nausea from radiation) I also could help by keeping the kids quiet so he could rest. The year prior to that he crushed his foot at work, and I could get pain meds, ice packs, assist walking to the rest room, etc. When it started to heal I could massage his feet and they think it actually helped it heal. When he has long days at work now and his foot hurts pretty bad, I make him a warm scented soak, and then massage lotion into them for him. So even a life long thing isn't a problem for me - "in sickness and in health". The problem is just what do I do this time?

This is unimaginable. I bought a pill sorter and I count out his meds each week. When I pack his lunch in the evening, for work the next day, I make sure he has his AM and lunch meds in there, and that he has plenty of pain meds in case he works late. That's the extent of all I can do. I have researched online for SOMETHING to help, but he has researched as well. I try to be encouraging, but I don't know how to help.

Don't get me wrong, I'm not depressed, just exhausted. The only thing I can think of is diet and he is very difficult about compromising what he likes to eat. The fried food elimination has been okay for now, because he thinks it is temporary.(I know he'll read this later, but that's okay) Fried food elimination isn't really a bad thing for us a family anyway with my side's history of heart disease and I have high cholesterol. The kids are all skinny, but it still is a good habit to form in them anyway.

whew, I guess venting helps some as well. Getting it all on "paper" so to speak.