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09-01-2011, 02:30 PM   #1
Lizzie
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Don't want to take Pentasa, just diagnosed

I've just been diagnosed with proctitis, which I gather is the least bad type of ulcerative colitis, and I received a letter from the hospital suggesting I go to my GP for 4g orally, 1g suppository.

I really don't like the idea of taking medication and I'd far rather try to control this thing with diet. It's trial and error at the moment, but I've studied what other people have said helps them and have gone vegan (not too hard as a life-long vegetarian), given up wheat, sugar, caffeine, alcohol and dairy. Some days are good and some are bad as far as passing blood and mucus etc but I don't want to give up a dietary approach just yet.

The problem is that I have a follow-up appointment at the hospital in a couple of weeks and I'm sure they'll hassle me for not giving the meds a try. Has anybody else declined to take drugs from the outset? If so, how has it worked out for you, and what was the medics' attitude? Is there any chance of getting dietary advice on the NHS and if so, is it any good? I'd love to hear what other people think.
09-01-2011, 03:06 PM   #2
Astra
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Hiya Lizzie

I stopped my meds cos I'm a fool.
I thought I was cured!
I ended up in hopsital for a week with a blockage and peritonitis.
Dr Bassi came to vist me and said, 'We nearly lost you last night'
OH!! WAKE UP CALL!
Do your body a favour, take the Pentasa ( a very mild anti inflammatory) and you can also continue with your diet.
I've been on it for nearly 6 years with great results.
No side effects.
Don't know about dietary advice, in my opinion, diet won't stop inflammation when it strikes, of course it can/may reduce symptoms.
good luck
xxx
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09-01-2011, 03:10 PM   #3
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Hi Lizzie, Pentasa is very mild and like Joan says you could get worse by not taking it and your doctor may get angry that you didnt take it. I did that once and I got mad at, and now I do as I am told. Doctors will just feel like you are wasting your time. Diet can help somewhat but it is a disease that is not curable, so you could hurt yourself in the long run. Let us know what the docs say.
09-01-2011, 03:13 PM   #4
Lizzie
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Thanks for the replies. I was hoping for a more positive response, really, so I feel a bit dejected now!

Another issue for me is that Pentasa is not vegetarian, at least the pills are not, I'm not sure about the suppositories as I have read different accounts of what they contain.
09-01-2011, 03:20 PM   #5
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Sorry you dont see what we mean but as far as suppositories, no way that would be something I would take. I am not a vegetarian, never knew meds were part of it.
09-01-2011, 03:24 PM   #6
Lizzie
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Well, I would never eat jelly because it contains gelatine so it feels weird to take medication that contains it, that's all.

When you said you wouldn't use suppositories, why is that? I was thinking they might be the lesser of two evils rather than taking drugs, but obviously I am new to all this and you have a lot more experience than me so I'd be interested to know why you are against them?
09-01-2011, 03:24 PM   #7
Misty-Eyed
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Why do you feel that Pentasa isn't vegetarian?

The reason everyone is responding like this is because they are unfortunately talking from experience. UC is not a condition to be taking lightly. You'll have it for the rest of your life unless you have your colon removed and it's VERY important to treat it as best you can to avoid it getting worse.

Please try not to feel dejected! We all have your best interests at heart and don't want to see you getting ill. A lot of people find that different foods make them feel worse but it's very hit and miss and is best tried out while still on medication to make sure you don't get ill.
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09-01-2011, 03:29 PM   #8
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I just dont like suppositories, they wont stay there lol. I feel it is an outie not an innie, not to make a pun. I have had Crohns 20 years plus and my sister has crohns colitis and my brother has UC, his is more controlled but he knows he has to be careful. I dont bleed but my sibs do. I would hate to see you end up in ER because you could of prevented it. I know with UC you can get a stoma? But that I would want as a last resort. Sorry if I offened you, Michelle basically said it all. Glad you are here though, hope someone sees your point of view.
09-01-2011, 03:36 PM   #9
Lizzie
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Why do you feel that Pentasa isn't vegetarian?

The reason everyone is responding like this is because they are unfortunately talking from experience. UC is not a condition to be taking lightly. You'll have it for the rest of your life unless you have your colon removed and it's VERY important to treat it as best you can to avoid it getting worse.

Please try not to feel dejected! We all have your best interests at heart and don't want to see you getting ill. A lot of people find that different foods make them feel worse but it's very hit and miss and is best tried out while still on medication to make sure you don't get ill.
I looked at the ingredient list on the web and it said Pentasol contains gelatine. Maybe it's in capsule form or something? I don't know for sure as I've never seen the stuff.

I've read huge amounts on the web, much of it contradictory, but I got the impression that proctitis can sometimes resolve itself without medical interventions?
09-01-2011, 03:39 PM   #10
Lizzie
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I just dont like suppositories, they wont stay there lol. I feel it is an outie not an innie, not to make a pun. I have had Crohns 20 years plus and my sister has crohns colitis and my brother has UC, his is more controlled but he knows he has to be careful. I dont bleed but my sibs do. I would hate to see you end up in ER because you could of prevented it. I know with UC you can get a stoma? But that I would want as a last resort. Sorry if I offened you, Michelle basically said it all. Glad you are here though, hope someone sees your point of view.
No, I didn't take offence and I'm grateful for the replies, it's just I'm very uncertain what I should be doing right now and I have never been a person to take tablets or bother the doctor normally. I only went to the doctor's because I was convinced I was dying of bowel cancer because of my symptoms.

I've never used a suppository, so probably ignorance is bliss, in the same way it was about taking the prep before the colonoscopy, which I also thought would be a doddle! Never again.
09-01-2011, 03:52 PM   #11
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Another for wishing I hadn't delayed taking the meds the consultant told me I should. Even went through another colonoscopy in the hope that diet had controlled my Crohn's. Now I very much regret delaying as I have had further joint and back pains.

Take the meds. Pentasa as everyone says, is a no-brainer. If that does the trick you'll thank your lucky stars you haven't had to go on to azathioprine, 6MP, methotrexate, or the biologics.

You can help yourself with diet, alternatives, outright quackery if you wish as a adjunct to meds. But please take the meds.
09-01-2011, 03:58 PM   #12
Lizzie
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Another for wishing I hadn't delayed taking the meds the consultant told me I should. Even went through another colonoscopy in the hope that diet had controlled my Crohn's. Now I very much regret delaying as I have had further joint and back pains.

Take the meds. Pentasa as everyone says, is a no-brainer. If that does the trick you'll thank your lucky stars you haven't had to go on to azathioprine, 6MP, methotrexate, or the biologics.

You can help yourself with diet, alternatives, outright quackery if you wish as a adjunct to meds. But please take the meds.
Do you mind me asking whether your symptoms diminished and that's why you thought you had the disease under control? Like I said before, I've read so much that's contradictory on the web. One school of thought seems to be that if your symptoms are better then your disease must be in remission (I know that's not the same as a cure) but another seems to be that your disease can be getting worse even if your symptoms have improved, and I really wish I knew which was the correct understanding.

I've read of loads of people losing hair and eyebrows with Pentasa, and when I looked at the clinical data it did mention alopecia as a side-effect. Can't say I fancy that.
09-01-2011, 04:12 PM   #13
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I don't mind at all. I was put on Elemental 028 diet drink initially, instead of pred, and whilst it was horrible, and after I worked out I dont tolerate maltodextrin, it reduced my toilet trips from a dozen or so to about 3 a day. I then introduced solid food again under the control of a dietitian. Again my toilet trips were about 3 a day. Soft stools, occasional blood, but nothing to get into a tizz about. Consultant said it wasn't good enough and I should go onto azathioprine because with a perianal fistula my Crohn's had obviously been very active, Pentasa or it's other preperations wouldn't be strong enough. I was reluctant and we agreed to leave it a couple of months to see how well I did, then either go on the drugs or colonoscopy to check. I chose the latter despite getting a pain in my jaw which I thought was an abscess, and lower back pain which is sacroilitis. He later should me the pictures of active ulcers and inflammed areas and the path report from the biopsies. It wasn't a good picture. I still had active Crohn's, I was simply changing the symptoms a bit.

What do want, possible hair loss which is annoying/depressing/etc, or much more nasty drugs or surgery? - I'm not trying to frighten you, I'm trying to make sure you really do understand what you are playing with.
09-01-2011, 04:12 PM   #14
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Losing your eyebrows??? Really??? As far as I knew pentasa was a mild anti-inflammatory, and I didn't even think it acted systemically, more like locally in the intestine (like rubbing on a soothing cream inside your intestines). Correct me if I'm wrong btw.

I took it for a while, nothing happened. They're a bit of a b*tch to swallow cos theyre chunky but that's it.
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09-01-2011, 04:15 PM   #15
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Oh yes btw when I took doxycycline as an antimalarial for three months when I went to Ghana, one of the side effects was apparently anorexia. Doxycycline is a simple antibiotic.

I kid you not.

I'm all for being informed but don't terrify yourself to death by overgoogling medications. Speak to your doctor about the way you're feeling and he/she will soon be able to reassure you and give you all the information you need.
09-01-2011, 04:19 PM   #16
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I don't mind at all. I was put on Elemental 028 diet drink initially, instead of pred, and whilst it was horrible, and after I worked out I dont tolerate maltodextrin, it reduced my toilet trips from a dozen or so to about 3 a day. I then introduced solid food again under the control of a dietitian. Again my toilet trips were about 3 a day. Soft stools, occasional blood, but nothing to get into a tizz about. Consultant said it wasn't good enough and I should go onto azathioprine because with a perianal fistula my Crohn's had obviously been very active, Pentasa or it's other preperations wouldn't be strong enough. I was reluctant and we agreed to leave it a couple of months to see how well I did, then either go on the drugs or colonoscopy to check. I chose the latter despite getting a pain in my jaw which I thought was an abscess, and lower back pain which is sacroilitis. He later should me the pictures of active ulcers and inflammed areas and the path report from the biopsies. It wasn't a good picture. I still had active Crohn's, I was simply changing the symptoms a bit.

What do want, possible hair loss which is annoying/depressing/etc, or much more nasty drugs or surgery? - I'm not trying to frighten you, I'm trying to make sure you really do understand what you are playing with.
Thank you for your reply. It seems from your experience that you were having symptoms of your worsening condition but didn't recognise them for what they were, which is very understandable. I do realise that taking or not taking drugs is a serious decision, which is why I am really agonising over what to do. My dad had his bowels removed with Crohns and spent many years basically living on mashed potato, which was very sad to see, and I am very fearful of ending up like that but my diagnosis is proctitis, which is a walk in the park compared with what my poor dad suffered.
09-01-2011, 06:03 PM   #17
Astra
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Lizzie
let me ask you this
You went to the doctor cos you thought you had bowel cancer, yeah?
So what if you had?
Would you be umming and arhring about vegetarian meds then?
Never heard of Pentasol. So I googled it, it says for vet use only for euthanasia of dogs and cats!
I still have all my hair and me eyebrows
See that photo there < that's me!
09-01-2011, 06:39 PM   #18
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I would go for the meds as they are the quickest way to reduce the inflammation. Once the inflammation is gone - you may, MAY, be able to manage with just dietary control.

My sister is that way with her Crohn's - she took the meds for awhile but although they helped with the inflammation she didn't like how they made her feel otherwise, so now she controls her symptoms thorugh diet alone. I don't agree with her approach as the damage could still be happening internally - she just can't yet feel it.

So don't give up on alternatives but don't refuse the meds either. I take ( and lots of people on here) lots of things to supplement my meds.

Once the intestines are damaged, it is really difficult to gain back that ground and leads to a host of other issues, so your best bet is to keep the damage to a minimun.

Good luck
09-01-2011, 06:50 PM   #19
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but my diagnosis is proctitis, which is a walk in the park compared with what my poor dad suffered.
That was my diagnosis 6 years ago. Then it was left sided colitis. Now it's pancolitis (entire colon) and I'm possibly a flare away from losing my colon - and now they're not sure if it's Ulcerative colitis or Crohn's colitis (the latter would mean a permanent stoma as a colon removal isn't curative for Crohn's). And this progression occurred despite me taking meds no questions asked. Who knows how quickly Id have reached this point if Id resisted them.
As a side note, rectal and colon cancer can occur later down the line as a result of chronic inflammation (such as untreated disease).

I don't mean to scare you, but you just don't know what might happen with this disease. I really can't recommend anything other than taking the suggested medication. Hopefully then you'll never need to progress to stronger meds (speaking of walks in the park, that's a great way to describe Pentasa compared to what drugs come next). You don't need to eat meat, or fish, or jelly, or wear leather shoes to stay healthy. But if you have a disease, you need medication. Your health is more important than your principals - and that's not meant to sound dismissive, I really admire vegetarians - but I'd really hate to see you go through something awful that could possibly have been avoided.

Maybe the medications won't be forever. Maybe once the inflammation is under control and you're in remission, you can try your own natural approaches of staying there. But GETTING there without drugs is different (and doesn't happen for most). Don't mess around with active disease. Just stamp the fucker out ASAP and go from there. That's my advice, it's up to you what you decide to do with it.

Gha, I hate this post. I sound mean and for that I'm sorry . I don't want to upset you when you're new to all of this, and were hoping for a more positive response regarding a natural approach. There just isn't any way to censor it. I hope I've been helpful and haven't offended you .

p.s. from personal experience suppositories/foam enemas are fine, you get used to things going up there pretty quickly lol.
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09-01-2011, 07:00 PM   #20
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Oh and never say never again to colon prep!!! You will have more colonoscopies to check and see if meds worked, etc.

My bloodwork shows normal but my colonoscopies are a different story completely - really thru my GI for a loop!!
09-01-2011, 07:04 PM   #21
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Ditto kllyeve. In Feb my CRP was 3 and my colon looked like a crime scene!
09-02-2011, 03:13 AM   #22
Lizzie
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Lizzie
let me ask you this
You went to the doctor cos you thought you had bowel cancer, yeah?
So what if you had?
Would you be umming and arhring about vegetarian meds then?
Never heard of Pentasol. So I googled it, it says for vet use only for euthanasia of dogs and cats!
I still have all my hair and me eyebrows
See that photo there < that's me!
Re your first question about bowel cancer, I can't honestly answer your question though I gave it a lot of thought while I was waiting for a diagnosis. I am quite a depressive person, so obviously Dignitas came to mind. However, I realise that when a person is actually in that situation rather than just theorising about it, they do choose to fight for their lives and who knows, maybe that would have been me too. In the past, when I've thought would I eat meat to stay alive in a plane crash or something ludicrous, I know the answer would be negative. As a child I went extremely hungry a lot of the time because of my vegetarianism (this was a long time ago in a working class family) and also because of a phobia about contamination, which thankfully has diminished in adulthood, but as a child and teenager I would try my hardest not to eat anything that had been cooked in a pan that meat had been in and almost vomit if I absolutely had to.

Not sure why you googled Pentasol, drug they want me to take is Pentasa. I don't think it would be much use for pet euthanasia! I've looked at IBD forums where people have said they discontinued Pentasa use because of hair loss, and the clinical data did also refer to this, so it can't just be dismissed as crankishness, though I accept it only happens to a minority of users.

Last edited by Lizzie; 09-02-2011 at 03:50 AM.
09-02-2011, 03:24 AM   #23
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I would go for the meds as they are the quickest way to reduce the inflammation. Once the inflammation is gone - you may, MAY, be able to manage with just dietary control.

So don't give up on alternatives but don't refuse the meds either. I take ( and lots of people on here) lots of things to supplement my meds.
Thank you for this. After thinking over what everybody has said, I am beginning to wonder if this may be a more balanced approach than a blanket refusal of all drugs.

My hospital appointment is in less than two weeks, so I will hold off doing anything until I see the specialist nurse and see if I can discuss the medication with her, and ask if a vegetarian alternative is available. If there is not, then at least I have tried my hardest to avoid animal products. I will also ask if there is a generic version (ie any animal trials will have happened way back in the distant past and won't be ongoing).
09-02-2011, 03:32 AM   #24
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Hey Lizzie,

As a Mum of two kids with Crohns my instinct is to tell you to take the medication because that is what I would want my kids to do and it supports my beliefs.

My daughter is a vegan but went down this path whilst in remission. She started on Imuran post operatively 5 years ago and to be honest I don't know if she is still taking it. A vegan diet suits her, she is well and feels very energised.

Shannon has a thread about her taking the holistic route, might be an interesting read for you...

http://www.crohnsforum.com/showthread.php?t=15655

Good luck with the decisions you need to make hun, it's not easy.

Dusty. xxx
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09-02-2011, 03:45 AM   #25
Lizzie
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That was my diagnosis 6 years ago. Then it was left sided colitis. Now it's pancolitis (entire colon) and I'm possibly a flare away from losing my colon - and now they're not sure if it's Ulcerative colitis or Crohn's colitis (the latter would mean a permanent stoma as a colon removal isn't curative for Crohn's). And this progression occurred despite me taking meds no questions asked. Who knows how quickly Id have reached this point if Id resisted them.
As a side note, rectal and colon cancer can occur later down the line as a result of chronic inflammation (such as untreated disease).

I don't mean to scare you, but you just don't know what might happen with this disease. I really can't recommend anything other than taking the suggested medication. Hopefully then you'll never need to progress to stronger meds (speaking of walks in the park, that's a great way to describe Pentasa compared to what drugs come next). You don't need to eat meat, or fish, or jelly, or wear leather shoes to stay healthy. But if you have a disease, you need medication. Your health is more important than your principals - and that's not meant to sound dismissive, I really admire vegetarians - but I'd really hate to see you go through something awful that could possibly have been avoided.

Maybe the medications won't be forever. Maybe once the inflammation is under control and you're in remission, you can try your own natural approaches of staying there. But GETTING there without drugs is different (and doesn't happen for most). Don't mess around with active disease. Just stamp the fucker out ASAP and go from there. That's my advice, it's up to you what you decide to do with it.

Gha, I hate this post. I sound mean and for that I'm sorry . I don't want to upset you when you're new to all of this, and were hoping for a more positive response regarding a natural approach. There just isn't any way to censor it. I hope I've been helpful and haven't offended you .

p.s. from personal experience suppositories/foam enemas are fine, you get used to things going up there pretty quickly lol.
Thank you for a very thoughtful post. Like I mentioned above, this thread has made me wonder whether I am doing the right thing in refusing meds from the outset, and the idea of taking them temporarily rather than long-term does seem a reasonable compromise.

I am conscious of the risks as I saw my dad's struggle with Crohns, he had it throughout his digestive tract and was often hospitalised. However, he was a heavy drinker and never, ever gave up even when it literally nearly killed him, only in his last two months of life did he stop drinking.

I haven't taken offence from anybody's posts, just felt a bit upset at being called foolish in the beginning, but I can understand why people with longstanding disease that is far worse than mine might have strong views and I know people are being helpful.

I'm glad you think suppositories aren't too bad. I've already had more stuff stuck up my bum in the past few months than I'd care to recall!
09-02-2011, 04:06 AM   #26
Lizzie
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Shannon has a thread about her taking the holistic route, might be an interesting read for you...

http://www.crohnsforum.com/showthread.php?t=15655

Dusty. xxx
That's a fascinating thread, thank you very much. I've started reading it and later I shall read it from start to finish (have to go out soon). I've just ordered a juicer, funnily enough, as I've noticed that my symptoms do ease if I eat my food in liquid form.
09-02-2011, 11:44 AM   #27
Astra
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I looked at the ingredient list on the web and it said Pentasol contains gelatine. Maybe it's in capsule form or something? I don't know for sure as I've never seen the stuff.

I googled it cos that's what it said ^

I will get back to you Lizzie, gotta go out
Take care
xxxx
09-02-2011, 12:59 PM   #28
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Pentasa doesnt contain gelatine because it's not a capsule its a powdery pill. Like the difference between paracetemol tablets and paracetemol capsules/caplets. You can also get dissolvable pentasa and that shouldnt have gelatine in either.
09-04-2011, 06:18 AM   #29
Misty-Eyed
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Pentasa doesnt contain gelatine because it's not a capsule its a powdery pill. Like the difference between paracetemol tablets and paracetemol capsules/caplets. You can also get dissolvable pentasa and that shouldnt have gelatine in either.
I think it depends on how it's formulated, Hannah. Some slow release tablets do contain gelatine so that the drug is released in the correct places.

I have looked at some brands of pentasa that doesn't have gelatine though. So if anyone is that adverse to taking gelatine there are ways around it.
09-04-2011, 08:02 AM   #30
archie
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Hiya I totally understand your concern about taking meds, it's not nice to be told that you have to take anything especially long-term medication. I too am very reluctant to take meds, however that said when I was really ill last year I did and took everything I was told by the medical team, they are after all the experts and these meds have all been tried and tested they really won't make you take anything just for the sake of it. I now am off all meds as I am in remission but that wouldn't have been possible if I hadn't taken the meds in the first place.

As far as I know there is not much clinical evidence on the usefulness of diet over drugs so ultimately you will have to base your decision on your own thoughts, which of course is your right, but unfortunately you run the risk of requiring stronger meds in time if the inflammation gets out of control. Pentasa really is a mild drug and might be the lessor of 2 evils. Side effects are rare, peoples comments here are based on personal experience which can be far more beneficial than any other research.

Good luck with your decision.
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