Medication advise: Hi I'm new here. I... - Crohn's and Colit...

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Medication advise

dang profile image
dang
19 Replies

Hi I'm new here. I was recently prescribed Mesalazin, Pantroprazole, and Telfast. I know that Telfast is an anti-histamine (I have histamine intolerance) but I don't know much about the other two drugs.

When I take them I get all sorts of bloating and stomach pain. Can anyone tell me what these drugs exact are? What they're supposed to do? Is it worth all this discomfort?

(My basic understand is one lowers stomach acid, and the other is supposed to help with ulcers?)

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dang
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19 Replies
Angep profile image
Angep

Hi there, if you look for thyroid uk. Forum there will be lots of people on there who. Can help and support you.i personally don't know about your condition other than it's an autoimmune disease. My autoimmune disease are chrohns and psoriasis. Maybe there are people on here who could help you too so the more the merrier. The thyroid forum is part of health unlocked too.

dang profile image
dang in reply toAngep

I was just diagnosed with ulcerative proctitis and duodenitis. Is this not the correct forum? I'm also part of the thyroid uk forum.

Angep profile image
Angep

For some reason I thought I read you had Hashimotos!! So sorry about that😬😬

dang profile image
dang in reply toAngep

I also have Hashimoto's 😓

dang profile image
dang in reply todang

Haha sorry for the sad face I just realize it looks more dramatic in context than I meant it

Angep profile image
Angep in reply todang

That's ok 😂 I'm sure someone will be able to help you then. The joys of autoimmune diseases!! They don't come alone!!

dang profile image
dang in reply toAngep

Yea isn't it fun? 🤔 hehe

Angep profile image
Angep in reply todang

I just hope they find a cure sometime. Soon!!! Be nice not to have to take drugs that risk giving you other horrendous things to contend with😲

dang profile image
dang in reply toAngep

Thanks! I hope so too.

Ccupcakes profile image
Ccupcakes

Hi Dang, I don't know about the other two but have used mesalazine for about ten years, have Crohns Colitis andalso take Azathioprine. The mesalazine was initially huge tablets but then gastrologist changed it to sachets of granules and also enemas to help with lower colonic tract flare ups and a fistula. My understanding is that it reduces the raw patches of inflammation that are then attacked by your immune system, what I do know is that once it settled I did not bleed out and I was in much less pain it took a little while to settle down tho. I think like everything, it probably doesn't suit everyone and I always take it before food because I personally find this suits me, the wind and bloating is a problem I agree, but it did lessen eventually and I use windeze. Hope this is helpful but a word of warning ( so sorry this is a long post) I have just developed a lung condition and the resp clinic and gastro have stopped the mesalazine as it has been shown to rarely cause a kind of alveolitis so to cover all bases , for the moment I can't take. Good luck my friend hope you settle down .

dang profile image
dang in reply toCcupcakes

Thank you for all the information. Very helpful! Is mesalazine something that is usually prescribed for life? I'm confused if I'm supposed to take this until the inflammation and ulcer is gone, or if I have to continue to take it after.

I'd prefer to take it until I no longer need it and then control my condition with diet or supplements instead. Am I hoping for too much?

CeeJay12 profile image
CeeJay12 in reply toCcupcakes

Hi. I was interested to read all the posts. If you don't mind me asking, what's the lung condition you've developed? My daughter is 14yrs & was diagnosed with an autoimmune condition called Behcets last year. She also has colitis and PSC liver disease. She's on Mesalazine & Azathioprine. She also has Alpha-1 which has affected he liver and will affect her lungs later in life too so interested in the medication

Ccupcakes profile image
Ccupcakes in reply toCeeJay12

Hi Ceejay, so sorry to hear about your daughter, that's harsh. The lung condition is OB- obliterative Bronchiolosis, it's followed on from a hefty bout of pneumonia and pleurisy that just wouldn't respond either in hospital or out , on going since July last year. Don't know what Behcets is, need to look that one up!

CeeJay12 profile image
CeeJay12 in reply toCcupcakes

Thanks & that's very helpful. Behcets is a rare autoimmune disease and the immune system is so overactive it starts attacking the body. It kick started in May 2015 when she suffered a stroke and they couldn't find out why the blood clot formed in the brain. It turns out her vessels became very inflamed with Behcets that blood couldn't pass through them. All under control at the moment though!

Ccupcakes profile image
Ccupcakes

Hi Dang, always told it's long term, until the lesions in my gut heal if ever. Was put on Azathioprine a few years ago to try to achieve this and had started to really settle down but my immune system has other ideas and at the mo is in freefall and affecting lots of other parts of me so am about to start chemotherapy which I'm not happy about!! Couple of things tho, that are now part of my psyche- think of your gut as a distressed child, it has to be coaxed gently into anything new, so when I get New meds you start them gently , half the dose for a while and build it up and only one thing at a time if you follow? I also found the slimming world eating plan really good, not for the weight loss but I went to support my daughter and liked the whole idea of no preservatives and everything fresh, that was I about ten years ago and she's now a consultant and I still try to stick to it cos it suits me, so hope this helps , let us know how you get on x

dang profile image
dang in reply toCcupcakes

Sorry to hear about the chemo 😓. I don't think I can continue Mesalazine, I took it last night again and cried in pain for the first time since I was a boy. It feels like there is an army of hamsters violently running through my intestines, it lasts an hour. I emailed the Gastroenterologist if i don't get a reply soon I'm going to call him. I don't think I can split the dose either it's a suppository.

Is this a normal reaction? It starts so soon after taking it...

I agree with you on the diet, I've been left with histamine intolerance due to low DAO enzyme in my gut, so I can't even eat anything preserved, aged, fermented without getting sick. So I only eat fresh, and avoid even fresh foods with high histamine levels (like avocado).

Ccupcakes profile image
Ccupcakes

Oh Lord I'm so sorry and I really feel for you, simple tummy ache just doesn't cover it does it? Back to yr gastro then trial and error I guess trouble is we're all so individual so what helps one doesn't help another , I really hope you get it sorted.

dang profile image
dang in reply toCcupcakes

Thanks for your help!

Ccupcakes profile image
Ccupcakes

Will PM u later

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