Some advice and questions please guys

Hi, I'm new to the forum. I've been lurking for a few weeks but now in need of some advice.

I was diagnosed with a mild case of UC last November so I've had it for just over a year.

Tried mesamaline enema's and suppository, both didn't work.

Then I tried Prednisone which didn't work either.

I've been on Budesonide for about 5 months. The symptoms are a lot better from day one. And the last three weeks my UC is about 95% better. No D or blood. Stools were flat though.

So I went to the doctor and he tells me I need to taper off the Budesonide. Prescribed mesamaline again. Used it that night and it started to worsen the next morning. Took it the next two nights and the same thing. Back to D and some blood today.

The doctor said if the mesamaline worked then I would take it indefinitely. I thought if the UC went into remission then medication wouldn't be needed? Is anyone on mesamaline all the time.

Even though when I seen the doctor last tuesday and it was about 95% better he wants to put me on humira if the tapering and the mesamaline don't work.

I've decided not to take the mesamaline tonight. (this would be the fourth night on it).

I asked him about changing my diet and he said there's no evidence of diet change to help UC. Do all doctors recommend not changing the diet?

I was doing a lot better and the darn mesamaline made my symptoms worse. Although the doctor saying that I needed to kick it properly by using the humira put a dampener on things.

Do people take humira indefinitely?

Thanks in advance for any help.

dazzk1q,

Welcome to the forum. I am sorry that you are having issues.

I was diagnosed with both UC and Crohn's. Please remember that everyone's journey is different, so what happened or worked for someone else may not work for you.

Steroids don't really heal your intestines. They help people get out of a flare but I have never had mucosal healing with them. I have been on Prednison- as it's one of the few that do work for me. After taking Prednisone for about 4 to 6 months I developed arthritis in my knees, hips and thumbs. I now use a walker.

I was put on Remicade in 2015. I am still on it. I sometimes have to supplement it with steroids. I do not use suppositories or enemas as I have fistulas. Long term use of biologics is becoming more and more main stream these days. When my GI and I made our game plan it was for long term usage--10 plus years is the game plan. It's been almost 7. We also developed Plan B, Plan C. (I like to know my options) Taking medication to keep you out of a flare and stop the inflammation is crucial. When your intestines are going thru ulcerations and inflammation they can become less pliable, develop scar tissues--which causes narrow openings for waste causing you additional pain and it can lead to obstructions. Uncontrolled inflammation can lead to a higher chance for colon cancer. My recommendation is to speak to your GI, make short and long term treatment plans and follow thru with them. BTW, I have someone in my IBD support group that's been on Remicade for over 15 years. Another person has been on humira since it came out. So long time use is possible.

Diet....I kept and still keep a food diary. My GI stated that although diet hasn't been studied enough to definitely say if it helps/harms he still believes that for some patients food choices can impact their IBD. He said he sees it every day. Patients won't eat this or that... I now know that canned tomatoes toss me into the middle of a flare, rice will constipate me for a week, seasoning salt with red pepper will wreak havoc...the list goes on. After keeping the food diary and listing how I was feeling and the # off bathroom trips per day--well I know that it helps me. I have a friend that it didn't help at all.

I hope you get to feeling better soon.

Others will chime in soon.
Clo

I've been on mesalazine (mesalamine) type meds daily (well I slack off sometimes when I'm in remission) since I was diagnosed in 2004, so approx 17 years now. Personally I haven't had any side effects from taking it, other than not being able to take 4 tablets of Mezavant a day (that makes me vomit), and sometimes a headache if I miss a dose. I stick to a slightly lower dose of 2 tablets while in remission and 3 while flared up, along with suppositories and enemas when required.

I took Humira for 6 years without side effects, other than my hair regenerating quickly (as I've said before, I thought I was losing my hair at first but it was falling out and growing back more quickly). I'd have happily continued with Humira but sadly it failed, ie it stopped keeping me in remission.

I try to eat a healthy anti-inflammatory diet, and take supplements that support overall immune system and gut health. I have to change my diet when I'm flaring (I tend to reduce insoluble fibre but continue to eat soluble fibre, stick to my safe foods, and eat nutrient rich, calorie dense foods to take in smaller quantities), but I still try to avoid heavily processed junk food, because it's harder to absorb nutrients during a flare up.

Your Gastro is probably making it clear that there's no evidence that diet causes UC, to encourage you to continue to take the medication. However I think it would be misguided of them to suggest that diet has no impact on overall health and wellbeing.

There's a lot of emerging evidence of the role of the gut microbiome on overall health. In my view it makes sense to eat a healthy diet if you have an auto-immune disease.

As Flowers said, this is a life long disease. The key is to find what works best for you and stay with it even when you feel good. Many of us made the mistake of stopping a treatment that worked because we didn't think we needed it anymore only to flare again and then finding out that treatment no longer works for us.

Some can get by with changes in diet or using alternative treatments, others need medications. You will have to do your own research on diet and alternative treatments. Most docs don't advocate for anything other than traditional medicine. Sometimes you get lucky and find an open minded doc but I have found those to be rare.

When you say that prednisone didn't work for you, could you share what dose you were on and for how long? Since you got immediately worse when you started on mesalamine it does sound like you are intolerant to that med so Humira is not an unusual next step.

There is a sulphate free rowasa but the regular one does contain sulphate or sulfites. Unfortunately I’ve found most UC medications to be horribly expensive — thanks to our current unregulated runaway prescription prices.

No having a partial colectomy will not cure this disease. It’s a systemic disease not localized. Until they discover a root cause (many different theories so far but no solution or consensus) all we can do is treat the symptoms and hope we hit on something that keeps us in remission for a long length of time. I’ve been happily in remission on entyvio for 4+ years now and living as if I don’t have UC for the most part.