New and need advice please

[goldfish123]

Hi there,

I'm new here and need advice please. My husband has been suffering from UC for the past 5 years, he's been on different medications but things have messed up recently.

The thing with him is that every time he travels to a new country, his UC flares up and it takes him a while to get it under control.

He is usually on the following meds:
Imuran 4tablets/day
Pentasa 500mg - 6tablets/day
Prograf 1mg - 1 tablet twice daily

When things got worse a month ago, he started taking the following dietary supplements:

Nature's way Slippery Elm Bark (4 capsules/ twice daily)
Cod Liver Oil, Vit A and D supplement (2capsules twice daily)
Triple Alfalfa (3capsules twice daily)

After taking the above supplements, his bowel movements were never as good since he was diagnosed with UC! However, for the past week, things got really bad, worse than ever! (he had stopped his prescribed meds for 3 or 4 days)
Really bad diarrhea of more than or equal to 5 times/day
really bad cramping, though its better now
sandy-like stools, black in color (never seen this type of stool before!)
blood in almost every stool

We don;t know what went wrong? Are they the supplements or their dosages?
He's now taking absolutely everything.. we're keeping a close eye on his diet, he even started a course of Entocort (9mg/day) but its still not working.

What are your suggestions/advice? And how should he be taking all his medications - ie. all together is ok or do they interfere with eachother?

Sorry for this long post but we really need help!

Thank you in advance

 

[David]

Hi there and welcome! I'm glad you joined. I'm so sorry to hear of all the trouble your husband is going through. But he's lucky to have someone like you who is trying so hard to help him A few things:

1. I'd personally stop all the supplements, especially the cod liver oil. I'm not at all a fan of cod liver oil for IBD patients. Please read this -- while I wrote it for Crohn's Disease patients, it is pertinent for UC patients as well.

2. Your husband should not go off his prescribed meds unless the doctor says to.

3. Get in touch with your husband's doctor if you haven't already. They need to be advised of the situation to determine if he needs to be reevaluated.

Again, welcome We're here for you and your husband anytime.

 

[mussen]

Hi there,
Sorry to hear your husband is having such a hard time with this disease.
My advice would be go and see your G.P or G.I!! In my experience sometimes your current meds just dont do enough or lose there effectiveness. He may need to review things with his docs and try different meds. I would definaltely never stop taking my meds!
I have had IBD for just on 10 years, originaly told I had crohns then after about 9years they decided it was UC. I was on many different drug cocktails over the years but never really had much of a remission. I tried nearly everything but ran out of options. I had surgery last year to remove my colon and had another surgery last month to begin the reversal of my ileostomy. (best thing ever,I wish I had done it years ago)

Maybe it is time for a review and a change of meds for your husband? keep trying until you find what works!! let us know how he's doing!
Best of luck

M

 

[goldfish123]

Hi,

Thank you so much David and mussen for your replies.

With regards to visiting a GI, its difficult finding a good one here being in a new country. He did visit one when he first came here but my husband says he wasn't very pleased with him. So he's currently going with the advice of a physician he knows.

This is the update:

we made a gap between the supplements and the medications, and lowered the doses of the supplements. I will tell him of the cod liver oil, thanks so much David for this important info!
We kept a close eye on his diet, took away anything we thought was causing inflammation.

The result of the above was very positive. the first 2 days he went to toilet less number of times, but the stool still looked the same. Third day his stool began to change to a more normal nature, and it continued to get better until the blood ALMOST stopped and he'd go toilet only once or twice with solid stool.

We don't know what exactly is causing this development, is it the supplements taken at a different time, or is it the steroid? also David, you recommend taking off all the supplements! are they not helpful AT ALL? They really improved his situation more than ever! Are there any specific supplements or herbal meds that you would recommend? On that note, my husband's new job is very stressful for him, do you recommend any stress medicine?

I know that cooked veggies are good supplies but my husband isn't very fond of them, so are raw peeled veggies n fruits healthy for him? We did find that fresh orange juice is good for him.

Your help is greatly appreciated

best regards

 

[goldfish123]

Oh and is probiotic VSL 3 OK as others have tried it and it worked well for them.

 

[mussen]

Im glad to hear your husband is doing a bit better.
Stress isn't a good thing, especially with diseases like this.

Foodwise it can be difficult, and everyone is different in what they can/can' tolerate.
I found when I was having a flare up I couldn't eat any raw veges, and probably 50/50 with raw fruit. Even some cooked veges made things worse. I guess it's a bit of trial and error. When things got real bad eating real healthy wasn't really an option, I just focused on what I knew would do the least damage and hope for the best.

M

 

[jaggartini]

To be honest I think your husband should find a GI as he'll need one for life. He shouldn't be self diagnosing, stopping and starting meds, especially on Immuran etc. The advise of a physician is this over the phone or does he see this person?

Sounds to me like he's having a flare and the Immuran isn't working and may need a different course of action.