• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

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.
 

Astra

Moderator
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
 

Crohn's 35

Inactive Account
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.
 
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.
 

Crohn's 35

Inactive Account
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.
 
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?
 
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.
 

Crohn's 35

Inactive Account
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.
 
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?
 
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.
 
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.
 
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.
 
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.
 
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.
 
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.
 
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.
 

Astra

Moderator
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!
 
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
 

Ian

Location
London, UK
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 I’d have reached this point if I’d 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.
 
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!!
 
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:
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).
 

DustyKat

Super Moderator
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. :hug:

Dusty. xxx
 
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 I’d have reached this point if I’d 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!
 
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.
 

Astra

Moderator
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
 
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.
 
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.
 
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.
 
My visit to the hospital yesterday went so much better than I anticipated! The doctor I spoke with was very understanding about my not wanting to take unnecessary drugs (in fact she said that she spends a lot of her time trying to get people off too much medication); she asked me about my symptoms and I said that though I get blood and mucus every day I have managed to achieve regular BMs once a day for the past five or six days. Hearing that, she suggested that I should just use the Pentasa suppositories and that there was currently no need for the pills, so we didn't actually get into a discussion about the make up of the pills. She also reassured me that my tinnitus would be unlikely to be worsened by using suppositories, since it's the opposite end of the body and the effect is of course topical rather than systemic. So I'm happy to try suppositories, just have to wait a few days for the doctor to get the letter from the hospital and then I'll go for a prescription.
 
Glad you got good news! Just be aware that the suppositories can make you feel unwell, too, but not as bad as the oral. Any time you're trying to make your body change course, it causes a few side effects.

I've been on Pentasa for 12 years and have also used the suppositories. I notice a loss of appetite, sensitivity to heat, nausea, and general unwellness/weakness when I first started it, and when the dosage is increased. It's normal and if you keep using it reguarly it will go away.

Best wishes to you!
 
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.
Take your medication or expect proctitis to become Colitis like mine did, Pentasa is nothing, doubt it even did anything for me health wise.

I have been on up to 30 tabs a day and if you think Pentasa is bad wait till you have to have prednisone, then you will see some side effects, I am wheening off it now after three weeks stuck in a hospital bed being drip fed.

Please take your medication seriously or suffer the consequencies.
 
Last edited:
Glad you got good news! Just be aware that the suppositories can make you feel unwell, too, but not as bad as the oral.
Right, thanks, I'll bear that in mind. I still haven't got the suppositories because I need to wait for the hospital letter to get to the GP first. I phoned today but it still hasn't arrived.
 
Take your medication or expect proctitis to become Colitis like mine did, Pentasa is nothing, doubt it even did anything for me health wise.

I have been on up to 30 tabs a day and if you think Pentasa is bad wait till you have to have prednisone, then you will see some side effects, I am wheening off it now after three weeks stuck in a hospital bed being drip fed.

Please take your medication seriously or suffer the consequencies.
As I said above, I have seen the hospital doctor within the last week and she is happy for me to use Pentasa suppositories alone, in fact that is her recommendation. I have radically altered my diet and I am managing to control my symptoms to an extent with the help of diet. I am conscious that this disease might get worse, my dad had hideous Crohns so I perfectly well understand where it all might lead if I am very unfortunate but nonetheless I feel that controlling my diet severely is a better option for me than taking pills. That way I will be aware of what my body is telling me rather than masking symptoms with drugs.
 
As I said above, I have seen the hospital doctor within the last week and she is happy for me to use Pentasa suppositories alone, in fact that is her recommendation. I have radically altered my diet and I am managing to control my symptoms to an extent with the help of diet. I am conscious that this disease might get worse, my dad had hideous Crohns so I perfectly well understand where it all might lead if I am very unfortunate but nonetheless I feel that controlling my diet severely is a better option for me than taking pills. That way I will be aware of what my body is telling me rather than masking symptoms with drugs.
I only wish you the best, I used to think like you re diet, until this illness really shows you what it can do please take good advice, from others here.

All the best
 
I only wish you the best, I used to think like you re diet, until this illness really shows you what it can do please take good advice, from others here.

All the best
But the drugs are obviously not a magic bullet. It seems like one drug leads to another drug and so on ad infinitum, and the more powerful they are the worse the side effects. I really don't want that. I know that diet is having some impact on my symptoms. As a matter of interest, how did you change your diet and for how long?
 
I have very little to say... Except...

If we all used the Internet to self diagnose, self medicate and access alternative therapies rather than going to a doctor.... A pharmacist, nutritionist or a trained natural therapist...

A sore throat would appear to be throat cancer rather than the flu.....

Period pains would be appear to be our uterus prolapsing....

Taking paracetomol would cause loss of hearing, skin melting off our faces, random limbs dropping off and our nostrils to sow themselves together....

Standing on your head while playing a violin with one hand, a tambourine in the other, while clapping our feet and singing Elton John songs would cure crohns and UC....

I'm not trying to mock anybodies beliefs... However the fact of the matter is that the Internet (while useful in some respects) is full of unsubstantiated information... And being the sad old humans we are... We will ALWAYS see and remember the negative aspects of ANYTHING before we will see and remember the positive....


This is for everyone with a disease (not directed specifically at you Lizzie)

If you are going to refuse medication... See a doctor to find out what it is you are refusing and to investigate the positive and negative aspects of the drug....

If you want to know what's in the drug... Ring a pharmacist for a fact sheet and remember that while there may be a list of 200 POSSIBLE side effects listed... Chances are you will get NONE of them....

If you are going to try diet and natural therapies... Consult a dietition or nutritionist... And make sure that they have treated crohns & colitis patients before!!!


Just yesterday I read about the religion of the flying spaghetti monster which is Apparently a real religion... Think I might join....

JJ
 
No... But u did use it to research a drug and drew conclusions upon it before consulting a professional... Much a muchness... That is why I wrote that it was not directed specifically at you... It was a generalization... Didn't mean to offend...

Jj
 
Hi Lizzie, I'm vegetarian too! But I can honestly say when it concerns my health it hasn't really crossed my mind (does this make me a bad veggie?!).
Like all the others have rightly said, untreated disease is the worst thing you can do! Although I respect you for having the positivity and will to try a more natural approach. Sadly it's not really that easy, and concerning this array of drugs you could go on pentasa is one of the least risky. Also, suppositories are pretty much the same as pills you take orally except...they go in the different end aha I'm pretty sure there's no major molecular difference.
Hope you decide to manage your illness, but don't give up on the diet as it will help in the long term, but just out of personal experience I would feel like a ticking time bomb without medication!

xxxx
 
No... But u did use it to research a drug and drew conclusions upon it before consulting a professional...Didn't mean to offend...

Jj
Fair enough, I see your point now. But I did actually read the clinical data online, produced by the manufacturers, and I read the manufacturer's leaflet for patients, also online, and ditto their own research data. So while I accept your point that there is a lot of garbage on the web, you can also get the facts "from the horse's mouth", as it were, if you look in the right places. You don't actually need to trudge to the pharmacist in this cyber-age (and I don't think my local pharmacist would be willing to give me the printed information unless I were actually buying the drugs on a prescription).

I think it's good that we can get clinical information online. Long before the internet,I was put on medication that affected me very badly and my life came to a standstill but the doctors told me I was imagining that I couldn't breathe etc. I had no way of checking this out. I insisted on stopping the drugs and went back to normal physically within a week or two. Years later I read that this drug had to be withdrawn because of the number of people it killed!

I have known so many people harmed by medication that I just can't accept that it is totally benign. Just to give one example, myhusband came close to losing his leg last year through complications of a relatively benign drug that he was taking for a minor complaint.

I am at a stage of my disease where I feel that the cons of taking oral Pentasa outweigh the pros. The doctor at the hospital does concur with my belief so there isn't a conflict of opinion.

Sorry if I was a bit tetchy before. I do understand how nasty this disease is and I am terrified of getting Crohn's like my poor dad so I get upset when anyone suggests that refusing drugs is more likely to worsen my currently mild disease. I don't know who is right and who is wrong but all I can say is that plenty of people here do seem to follow their drug regime to the letter and they still get worse, so for the time being I'll pursue my present course.
 
Hi Lizzie, I'm vegetarian too! But I can honestly say when it concerns my health it hasn't really crossed my mind (does this make me a bad veggie?!).
Like all the others have rightly said, untreated disease is the worst thing you can do! Although I respect you for having the positivity and will to try a more natural approach. Sadly it's not really that easy, and concerning this array of drugs you could go on pentasa is one of the least risky. Also, suppositories are pretty much the same as pills you take orally except...they go in the different end aha I'm pretty sure there's no major molecular difference.
Hope you decide to manage your illness, but don't give up on the diet as it will help in the long term, but just out of personal experience I would feel like a ticking time bomb without medication!

xxxx
Putting gelatine in my mouth would just feel a bit weird, that's all, I didn't mean to condemn other veggies who don't mind taking pills/capsules! The general view even among vegans seems to be that it's a regrettable necessity if there's no other alternative.

I suppose it all comes down to what you define as "untreated" disease. I feel that I am treating it by going vegan, giving up sugar, dairy, excess fat, sugar, caffeine etc. That's a lot harder than popping pills.

I suspect you may be right about the drugs being the same whichever end you insert them but because I am not being totally successful by dietary means I have agreed to go along with the doctor's suggestion of Pentasa suppositories. For all I know, they may well contain bits of dead animal too, but I view sticking something up your bum as more akin to wearing leather shoes than eating jelly. It wouldn't stand up to logical analysis, I'm sure! The hospital doctor did say, though, that there are fewer side-effects from suppositories than oral Pentasa.

As for "ticking time bombs", yes, I do worry about that (if I didn't, I wouldn't be asking questions on this forum) but I just recall my dad getting worse and worse, having his bowels out, becoming skeletal and so on, and he took enough pills to kill a horse ...
 
You have to weigh up the pros and cons as you have said. Yes some people get worse and worse with meds; equally some vastly improve and go into remission. IBD is not a common cold, it is nasty and also different in every person, and there may be a different reason why the meds do not work in each case, rather than them being no good for anyone.
Yes medication can cause damage; but it can also save lives- my own Grandfather is only alive thanks to modern medicine.
I hope I don't offend but you seem to be pretty focused on the negative aspects, try looking at it from the side of the positives.
To me, dietary changes help things run more smoothly and keep the intestines calm. But it does nothing for the underlying inflammation as the medications are designed to do. Cealic is treated by diet because it is the food that causes the negative reaction. With IBD it is the inflammation reacting to the food. And as you admit you are finding treating it by diet is not currently 100& successful.
I wish you the best of luck whichever route you take :)
 
I hope I don't offend but you seem to be pretty focused on the negative aspects, try looking at it from the side of the positives.
Yes, you are right about that. I have always been prone to gloom and doom and this illness is making me feel very down about most things. I keep reading that depressive people are far more likely to get IBD than cheerful types, definitely true in my case. Losing my dad this year hit me hard and I was still reeling from that when I started having these health problems. I don't seem able to feel optimistic about anything.
 
Sounds like you've had a really hard time Lizzie :( And I agree with you on the gelatine thing actually, I really do wish it didn't contain it if it does and I hate that I have to condone animal testing in order to control my illness - but like everyone has said it's a balancing act and a pros and cons thing. Just out of instinct I put my health first. Good luck on pentasa and with your vegan diet (I'm just eggs away from being vegan! let me know how you go and maybe you'll inspire me to give them up?) I hope it does you well and you get better soon <3
xxxx
 
Thank you. I hate animal testing too, and it's so pointless most of the time in any case, but that's a massive issue in itself, isn't it. I suppose there's no point cutting your nose off to spite your face and rejecting drugs that have been tested on animals as that won't bring back the creatures that have already suffered massively, but, yes, if I ran the country I would ban animal testing immediately because it is just immoral.

Regarding eggs, I've never been fond of them (bit squeamish about them coming out of a hen's backside) but I do miss cheese and coconut yoghurt lots. Soya yoghurt doesn't seem to agree with me as far as I can tell, and I don't think any other sort is commercially available. Maybe I need to get a yoghurt maker but I don't think there's any more room on my worktops now I've fecently got a juicer and a soup maker.
 
Assuming you have ulcerative colitis, Pentasa won't be too useful for you. From my knowledge, Pentasa gets absorbed very high up in the GI tract, while colitis typical is in the lowest part of the GI tract. A drug like asacol would make more sense

I'd ask your doctor.
 
Assuming you have ulcerative colitis, Pentasa won't be too useful for you. From my knowledge, Pentasa gets absorbed very high up in the GI tract, while colitis typical is in the lowest part of the GI tract. A drug like asacol would make more sense

I'd ask your doctor.
I was vaguely wondering about that from stuff I've read on these forums. I have proctitis. Since the hospital doctor I saw recently suggested suppositories only (and not the Pentasa pills which upon diagnosis they advised me to get from my GP), maybe she takes the same view? Hopefully the suppositories might do some good as they will be applied locally to the area where the problem is. Presumably Asacol is prescribed in the UK and there isn't any cost advantage to Pentasa for the NHS? I get the impression that Pentasa is pretty dear from people who have to buy it themselves rather than just pay £8 or however much for a prescription.
 
But the drugs are obviously not a magic bullet. It seems like one drug leads to another drug and so on ad infinitum, and the more powerful they are the worse the side effects. I really don't want that. I know that diet is having some impact on my symptoms. As a matter of interest, how did you change your diet and for how long?
I am new to this disease and trying to learn about it, everything I read seems to be contradictory, it's not as simple as you might think, I only wish it was. Even the hospital in Hungary told me to keep away from milk, sugar, tomatoes, and many other things, I have just come out of hospital in Spain last week, here they kept me off all food and drink for 10 days then introduced liquids then liquidised food then solids.

The first liquid they gave me was hot milk, then the solids I had Steak with a tomatoe and peppers, lettuce and onion mix salad covered in vinegar, everything the other hospital told me to stay clear of.

I am finding it very difficult, I eat almost everything except the obvious now like nuts, and if I see blood I try to avoid whatever I had for a while, I think fat is the worste, but again I am not sure, many say diet doesn't affect you.

I am sure like me you will find your way, I can only say that the tablets I was on earlier in my illness were killing me and so I tried it the diet way, now my whole colon is shot and I am worried.

I came out of hospital last week and now find I am bleeding a little again, I have done three months inside two hospitals and had 13 units of blood in less than 12 months.
 
I am new to this disease and trying to learn about it, everything I read seems to be contradictory, it's not as simple as you might think, I only wish it was. Even the hospital in Hungary told me to keep away from milk, sugar, tomatoes, and many other things, I have just come out of hospital in Spain last week, here they kept me off all food and drink for 10 days then introduced liquids then liquidised food then solids.

The first liquid they gave me was hot milk, then the solids I had Steak with a tomatoe and peppers, lettuce and onion mix salad covered in vinegar, everything the other hospital told me to stay clear of.

I am finding it very difficult, I eat almost everything except the obvious now like nuts, and if I see blood I try to avoid whatever I had for a while, I think fat is the worste, but again I am not sure, many say diet doesn't affect you.

I am sure like me you will find your way, I can only say that the tablets I was on earlier in my illness were killing me and so I tried it the diet way, now my whole colon is shot and I am worried.

I came out of hospital last week and now find I am bleeding a little again, I have done three months inside two hospitals and had 13 units of blood in less than 12 months.
I do realise that the food thing is fiendishly complicated, and I must admit that I'm beginning to lose hope slightly after six months of eating virtually nothing in terms of variety and my weight dropping a bit too dramatically. Mashed potato and carrot seems OK but you can't just live on that.

My personal view is that sugar is one of the worst things (my dentist was surprised by how much less inflamed my gums were on last visit, which I can only put down to cutting sugar out of diet, so hopefully it will eventually have some effect at the other end of digestive system too). Your Spanish hospital diet sounds incredible, like a long list of what not to eat!

I've started keeping a really detailed diary of what goes in and what comes out so as to try and analyse it all in a more objective way but as I get blood every day it makes it difficult to work out what's good and what's not.

Sorry to hear you are having such a rough time. My problems are very minor in comparison with yours, I just drive myself mad worrying about how they might end up.
 
How did you go with your appointment Lizzie? I've just come across your thread today.

I was first diagnosed with Proctitis 8 years ago and was shocked to hear I'd have to take medication (wasn't Pentasa, Mesessal tablets) for a long time. I was very naive, thought I could control it with diet etc, it went away, I stopped taking my meds on my own accord and BANG..... Hello Ulcerative Colits.
I'm now taking much stronger meds, I've had reactions, trips to hospital, it's been the pits. What I'd do to be back inserting one suppository a night.

I'm now on Pentasa Granules, have no idea if they have gelatine or not. I've never heard of side effects of hair loss etc. In essence they are a very mild medication compared to some of the other drugs you'll need to take if the condition gets worse.

Good luck.
 
I can't really understand why you are being so lax about taking Pentasa. Your father suffers severely from a bowel disease, you have been diagnosed with one yourself, and you have been prescribed probably the absolute mildest drug for IBD. I hated taking medication when I was young so I stopped cold turkey (I was taking prednisone and Pentasa) and the damage I did by not treating my Crohn's required immediate surgery. I too have a parent with IBD.

I hate when I'm on this forum and see someone who is deciding to not take medication. I made that awful mistake and will never make it again. Please, I implore you, to not be so relaxed about long term treatment of a chronic illness. All my best to you :hug:
ps: I'm sorry, I reread what I wrote and I do not mean anything I'm saying in a standoffish way, I just thought I'd share my experience with this issue as it is an important one that I feel strongly about :)
 
Take your medication or expect proctitis to become Colitis like mine did, Pentasa is nothing, doubt it even did anything for me health wise.

I have been on up to 30 tabs a day and if you think Pentasa is bad wait till you have to have prednisone, then you will see some side effects, I am wheening off it now after three weeks stuck in a hospital bed being drip fed.

Please take your medication seriously or suffer the consequencies.
I totally agree, The Pentasa or Asacol did nothing but good things for me. Taking the medication is the best bet, I was diagnosed with Crohns 9 years ago, I did not take the medication serious and i had to have an emergency surgery earlier this year. I am better now but i am serious about taking my meds so i do not have to go through the hell i went through last year.

I also started to gain weight when i was not on the meds. Weight fluctuation has been a constant for me, I was 170 pounds when i was diagnosed, dropped down to 145, jumped up to 235 when i was off the meds and went down to 165 on my own, after getting back on meds i went down to 140 while i started to get sick from not taking meds for a long time, i had to stay off meds for 6 months after my surgery last january, i went up to 185, i started taking them again 2 weeks ago and have dropped 7 pounds.

I am kind of rambling, i know but i just discovered this place so i may have a lot to say, hah.....
 

Crohn's 35

Inactive Account
I totally agree, The Pentasa or Asacol did nothing but good things for me. Taking the medication is the best bet, I was diagnosed with Crohns 9 years ago, I did not take the medication serious and i had to have an emergency surgery earlier this year. I am better now but i am serious about taking my meds so i do not have to go through the hell i went through last year.

I also started to gain weight when i was not on the meds. Weight fluctuation has been a constant for me, I was 170 pounds when i was diagnosed, dropped down to 145, jumped up to 235 when i was off the meds and went down to 165 on my own, after getting back on meds i went down to 140 while i started to get sick from not taking meds for a long time, i had to stay off meds for 6 months after my surgery last january, i went up to 185, i started taking them again 2 weeks ago and have dropped 7 pounds.

I am kind of rambling, i know but i just discovered this place so i may have a lot to say, hah.....
:welcome: to the forum! Tell us more of yourself on a YOUR STORY thread and others can meet and greet you!
 
I have been on Pentasa for a while now, about to be switched to Cimzia.. I haven't had any problems with the Pentasa except terribly dry skin but maybe this could also be related to the Prednisone? I never had dry skin in the past.. now the skin on my hands, feet, and other places has dried up and peeled off in the worst way but it looks a little better now and I hope it doesn't return.. my GI said he will wean me off the pills once I start Cimzia.. I'm new here, first post, and what I've read so far.. Cimzia seems more terrifying than Pentasa could ever be. Either way, I would take the meds they prescribe you because there isn't much other choice and the alternative is.. well, avoidable hopefully.
 
Thank you for the comments about Pentasa. I am scared to take it because I feel that it's a slippery slope and one drug leads to another drug and so on. However, I am not managing to solve my problems by diet and my symptoms are getting a little bit worse (I've now also got burning pain in my bum a lot of the time). I went to the doctor a few weeks ago for the suppository prescription and I've bought them but have been putting off the moment I start using them, partly because I've been away a bit recently and didn't want to begin until I'm on home ground overnight for a while. I am going to start this week.

I'd just like to say again that I'm not the slightest bit relaxed about this condition. It makes me hugely depressed and despondent. I do know how my dad suffered, and I've been reading clinical stuff on the web that is terrifying (in that Crohns quite often presents initially as proctitis and can be indistinguishable in the early stages). There seems to be a view, but as far as I can tell no actual research data, that suggests use of Pentasa can prevent or delay progression of the disease. I'd be very interested if anybody could point me towards any research findings on this issue. So many people on this forum do seem to have started out on Pentasa but their disease has still deteriorated, which is not a cheering thought.

I'll let you know how I get on with the suppositories. The little miniature finger condoms made me laugh. The stuff can't be so innocuous if you need to protect your fingers from the drug, surely?
 
Last edited:

Crohn's 35

Inactive Account
I have been on Pentasa for a while now, about to be switched to Cimzia.. I haven't had any problems with the Pentasa except terribly dry skin but maybe this could also be related to the Prednisone? I never had dry skin in the past.. now the skin on my hands, feet, and other places has dried up and peeled off in the worst way but it looks a little better now and I hope it doesn't return.. my GI said he will wean me off the pills once I start Cimzia.. I'm new here, first post, and what I've read so far.. Cimzia seems more terrifying than Pentasa could ever be. Either way, I would take the meds they prescribe you because there isn't much other choice and the alternative is.. well, avoidable hopefully.
Hey Phoenix :welcome: to the forum, could you please tell us your story of your IBD and put it on a YOUR STORY thread...looking forward to meeting you.

Sorry to hijack your thread Lizzie. :ycool:
 
I don't have the link because I'm on my blackberry but if you google 'steve jobs died alternative medicine' you should get a link to an article in the telegraph stating that a catalyst for his death was that he initially avoided conservative cancer treatments in favour of alternative cures including acupuncture, diet and spiritualists. Apparently his cancer may not have killed him If he had used conservative methods from the outset.

It might be something to bear in mind...
 
I don't have the link because I'm on my blackberry but if you google 'steve jobs died alternative medicine' you should get a link to an article in the telegraph stating that a catalyst for his death was that he initially avoided conservative cancer treatments in favour of alternative cures including acupuncture, diet and spiritualists. Apparently his cancer may not have killed him If he had used conservative methods from the outset.

It might be something to bear in mind...
I did read the story at the time of his death. However, the medic who made that statement had not actually been involved in Steve Jobs's care and didn't even know the man, so was making slightly reckless statements from a medical point of view (not that I favour spiritualism as a cure for disease!).
 
That's surprising so much press coverage talked about his use of alternative medicine - oh well I suppose if it was true it's a very sad and tragic lesson learnt, and if it's not true it's a mean thing to say about Steve Jobs.
 

kiny

Well-known member
Pentasa is nothing, it's like taking a flinstone tablet. Please, if they prescribe you only pentasa, thank the world and do what your doctor tells you to do, because it's nothing.
 

kiny

Well-known member
Thank you. I hate animal testing too, and it's so pointless most of the time in any case, but that's a massive issue in itself, isn't it. I suppose there's no point cutting your nose off to spite your face and rejecting drugs that have been tested on animals as that won't bring back the creatures that have already suffered massively, but, yes, if I ran the country I would ban animal testing immediately because it is just immoral.

Regarding eggs, I've never been fond of them (bit squeamish about them coming out of a hen's backside) but I do miss cheese and coconut yoghurt lots. Soya yoghurt doesn't seem to agree with me as far as I can tell, and I don't think any other sort is commercially available. Maybe I need to get a yoghurt maker but I don't think there's any more room on my worktops now I've fecently got a juicer and a soup maker.
If you decide to be a vegetarian, and you decide to not eat eggs, how are you suggesting you are going to get your protein, not gonna be on this Earth very long without protein.

I don't understand why people would decide to be vegetarian when they have Crohn's or UC. Your body is likely already dealing with shortages, then you decide to cut it off of half of the food groups by being a vegetarian.

Another thing I don't understand is how you believe being a vegetarian will help you control this disease. Food is not going to stop an inflammation, inflammations can happen in deep mucosa layers and even not eating at all does absolutely nothing, it just makes it worse.

Many people are selective with foods, and make choices based on evidence, there are foods that are anti-inflammatory, others are lactose intolerant, but being a vegetarian won't help you at all. I couldn't care less if they had to kill chickens as long as I get my protein, toughen up a bit and put yourself first . We're at the top of the food chain, not at the bottom.


I used to think like you, I used to think, if I eat just right and avoid this and that and this and that, I'll be fine. I got pain in my stomach, decided to eat less, got more pain, decided to eat less, I was 80 lbs., dragged into ER and couldn't walk anymore from the pain, had to use a wheelchair. They put me on infliximab (which is about 1000 times as strong as the pentasa they give you) and got intravenous food through my neck, IV on my left with iron, and IV on my right with glucose. After that I spent 1 month trying to walk again because once you don't have enough food and no fat, your body decides to take food from your muscles.

All because I thought I could do it on my own.
 
That's surprising so much press coverage talked about his use of alternative medicine - oh well I suppose if it was true it's a very sad and tragic lesson learnt, and if it's not true it's a mean thing to say about Steve Jobs.
Sorry, didn't express myself very clearly. I meant that the doctor was not involved in his care, I wasn't disputing that Steve Jobs initially tried alternative medicine.
 
Pentasa is nothing, it's like taking a flinstone tablet. Please, if they prescribe you only pentasa, thank the world and do what your doctor tells you to do, because it's nothing.
I don't know what a flinstone tablet is, I'm afraid. I assume you are saying that Pentasa is totally harmless and while I accept it's far less harmful than most drugs for these conditions, you only have to read the list of side effects produced by the manufacturers themselves to see that it can cause problems. However, it seems to me from looking at this forum that most people progress onto more powerful drugs and very few people are helped much by Pentasa, in which case it may well not do any good anyhow.
 
Last edited:
If you decide to be a vegetarian, and you decide to not eat eggs, how are you suggesting you are going to get your protein, not gonna be on this Earth very long without protein.
I am a lifelong vegetarian so that's not going to change whatever health problems I have. Actually, though, for anyone who hasn't got IBD it's really easy to get enough protein without eating animal products (beans, pulses, nuts, tofu etc).

Isn't it quite a mainstream view that dairy food has an inflammatory effect on the intestines, that's not just a cranky hippyish alternative fad? Sugar causes gum inflammation, so why wouldn't it do the same elsewhere in the body?

However, having said that, I've admitted that I now have less faith in diet than I did initially. The reason it isn't helping much may well be because of my own failings, that I can't manage a strict enough diet because it's so hard to get enough nutrients to stay healthy and keep up a good weight, which I suppose is the point you were making. So, with a very heavy heart, I am starting the Pentasa suppositories tonight.

I'm sorry that you've ended up on some horrible-sounding drugs, like so many people here, but how do you know that it wouldn't have happened regardless of what you ate or didn't eat, or whether you had complied religiously with the drug regime prescribed by the doctors? As far as I have seen, there haven't been any control trials to offer proof one way or the other (maybe such trials would be viewed as unethical?).
 
Hi lizzie I'm glad your going to give the pentasa a go and you certainly haven't made the decision lightly. Good luck and really try hard not to stress to much about the side effects I can tell by your thread that you are anxious about this. Medical research is hard to conduct especially for ethnical reasons and lack of double blinded control studies, but the drugs themselves have had rigorous testing. This research has been done especially for long- standing drugs like pentasa. All drugs have a long list of side effects even paracetamol, but again it is very unlikely that you will suffer from any of them. Hope they do trick though to making you feel better.
 

kiny

Well-known member
I assume you are saying that Pentasa is totally harmless and while I accept it's far less harmful than most drugs for these conditions, you only have to read the list of side effects produced by the manufacturers themselves to see that it can cause problems.
You take those risks, because the alternative is worse.

That doesn't mean you shouldn't be careful, the medical industry is a billion dollar industry and not everyone is in it to help us, but plenty of people are.

If you complained about drugs other than pentasa, I would have said "ok, it's your call to make", but you are talking about such a mild drug, where the chance of serious side effects is like one in a bazillion.

But the chance that you get something worse from not taking them are real.






You also said, people on this forum seem to be worse off sometimes.

Take into account that most healthy people who did get better, usually don't visit forums any longer, they are just living their lives without worrying. Some just decide to stick around, others do not. This forum is not a good representation of people with crohns or even UC. This forum often shows extreme cases.
 

kiny

Well-known member
If you're still not convinced by people btw Lizzy, go look at some slides of crohn's or UC intestins online, and see what this disease does to you if you're not careful. The fact that you said you lost weight and saw blood in your stool means you should realise that this is not something that is easily fixed by a diet. Pick a good diet and talk things through with your doctor, but be sure you know that the alternative of not taking simple meds is not a road you want to travel.

You need to be careful, but you also need to put a minimum amount of faith in people if you want to get better.
 
Lizzie, I think you are spending too much energy reading up on side effects (of which ALL drugs have a loooooong list, 99.99% of which will not happen) and trials, etc. If you are on this forum, I think it would be more to your benefit to read the person experiences of people who have dealt with this illness for a long time, and come here with experience they want to share with other's for all IBD sufferers benefit!
You seem say that people "inevitably" move on to the scary drugs so what's the point of taking the mild ones? Therein lies your problem... people only go to the scary drugs because they neglect to take the mild ones will their illness is still mild. As I said before, this happened to me.
We are all just speaking from experience, because we are here to help each other :hug:
 
you only have to read the list of side effects produced by the manufacturers themselves
You do realise that manufacturers have to put every single little side effect that may have only happened in one sole person to cover themselves legally.
Just like all the side effects listed on Panadol or Asprin. They are there "just in case" not as "this will definitely occur"

PS I'd rather lose my hair than my colon ;)
 
Hi lizzie I'm glad your going to give the pentasa a go and you certainly haven't made the decision lightly. Good luck and really try hard not to stress to much about the side effects I can tell by your thread that you are anxious about this. Medical research is hard to conduct especially for ethnical reasons and lack of double blinded control studies, but the drugs themselves have had rigorous testing. This research has been done especially for long- standing drugs like pentasa. All drugs have a long list of side effects even paracetamol, but again it is very unlikely that you will suffer from any of them. Hope they do trick though to making you feel better.
Thank you. I started on the Pentasa a few days ago and it's too early to say as yet, but I'm trying to be positive. My head feels a bit uncomfortable, a sort of pressurised feeling, and I'm a bit dizzy, but nothing too bad. The pain and mucus have eased but the Pentasa seems to be causing constipation and when I did go to the loo at last it wasn't a normal shape and there was some alarming black stuff everywhere, no idea what that is.

I've actually managed to find some double blind research (Pentasa v placebo) by the way. I know I'm really jumping the gun here, as I'm not in remission obviously, but according to the research if the ulcerative proctitis gets in remission then Pentasa three times a week appears to keep it under control. Some other research has found that maintenance therapy is useful in retaining remission for the first couple of years but thereafter is not necessary in those who have stayed in remission that long.
 
Lizzie, I think you are spending too much energy reading up on side effects (of which ALL drugs have a loooooong list, 99.99% of which will not happen) and trials, etc. If you are on this forum, I think it would be more to your benefit to read the person experiences of people who have dealt with this illness for a long time, and come here with experience they want to share with other's for all IBD sufferers benefit!
You seem say that people "inevitably" move on to the scary drugs so what's the point of taking the mild ones? Therein lies your problem... people only go to the scary drugs because they neglect to take the mild ones will their illness is still mild. As I said before, this happened to me.
We are all just speaking from experience, because we are here to help each other :hug:
You are right that I should try not to be so negative (habit of a lifetime, I'm afraid, and this condition has really hit me hard emotionally).
 
I am such a paranoid person that when my Doctor told me metronidazole could cause tingling and nerve damage in the hands an feet, i CONVINCED myself I was experiencing these side effects, and actually experienced physical pain in my hands.

Once I told my Doctor about it and he said it was virtually impossible to be a side effect of the antibiotic after two days, the symptoms stopped.

Sometimes your imagination does the damage - and if you're like me as soon as you hear of a side effect you'll convince yourself you're experiencing it!

Nearly had a minor panic attack during my last Inflix infusion because convinced myself I was going to feel ill.

It's very common for me now - any anxiety or stress or worry and I experience physical symptoms.
 
the medical industry is a billion dollar industry and not everyone is in it to help us, but plenty of people are.

Take into account that most healthy people who did get better, usually don't visit forums any longer, they are just living their lives without worrying. Some just decide to stick around, others do not. This forum is not a good representation of people with crohns or even UC. This forum often shows extreme cases.
I just wanted to say how much I agree with both these comments.
 
Hello Lizzie,

Thank you so much for posting! I too have recently gone through the same struggle. I have had Crohn's disease for over 10 years. Within a few years of diagnosis I had some of my intestine removed, then managed to be in remission without medication until now. However, with my symptoms returning, I've had to face the same decision. My symptoms haven't been too bad, and I struggled with the idea of being able to control this with diet vs. going on Pentasa. I am EXTREMELY resistant to taking any drugs, but ultimately decided to take Pentasa. I also had been a vegetarian for quite some time, but since my protein sources are somewhat limited (beans do a number on me!) I occassionally eat meat, which doesn't seem to bother me. Eggs, too, settle well with me.

I do feel that starting Pentasa was a good decision - it has really curbed the amount of mucus and blood in my stool. I still have pain and discomfort - and that's what I can control with what I eat. So, for me, Pentasa = a baseline of inflammation reduction. Diet = a way to lessen "irritation".

I'd love to discuss this further! I'll check back here later.
 
Hello Lizzie,

Thank you so much for posting! I too have recently gone through the same struggle...

I also had been a vegetarian for quite some time...

I do feel that starting Pentasa was a good decision ...
It's great to read your post, as I thought I was just annoying everybody with my fears about medication. Though I can understand why people who've had all sorts of treatment for years can say airily that Pentasa's nothing, to me it's a huge deal right now. I'm the sort of person who won't normally even take an aspirin, but there's also this deeper resistance to the idea of taking medication. You're accepting that you're "sick" and have got a chronic condition when you choose to start on the medication and psychologically it can be very hard, even though intellectually you recognise this from day one. I'm not sorry that I tried to control this thing via diet: even though it didn't succeed I think it's something you have to find out for yourself. Otherwise you would spend your life wondering whether you could have cured yourself by this means.

Diet's really not easy. Dairy, as with so many people, doesn't seem to agree with my symptoms, nor do beans, so I probably find myself eating not enough protein. Dairy and beans used to be the mainstay protein items of my diet. Meat is a bridge too far for me! I'm thinking about eating a few eggs now and then, even though I don't really fancy this. I suppose you'd know if you had a protein deficiency?

At the moment the Pentasa is helping with my symptoms too, mucus, blood and tenesmus have all but gone, touch wood, but I'm a bit unhappy with the side effects (pressurised feeling in head, mild dizziness, worsened tinnitus). The fear of surgery is a powerful motivator and I shall persevere with Pentasa for a while at least.
 
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.

Pentsa is one of the 5-asa group, as everyone has explained it is one of the mild treatments. There are other ones of its kind, like mesalasine (asacol) and sulphasalasine. I took the latter when I was very young and it did make my hair fall out (in big clumps) but it was an adverse reaction to the drug. I then took mesalasine and also pentasa (not at the same time), but did not lose any hair. They have to mention every side effect that has been reported, pretty much ever. Don't worry, it does not mean that it will happen to you. But if you find the drug doesn't suit you, there are alternative medications.
 
Hi Lizzie,

I just wanted to check back with you and see how things are going for you. Is Pentasa still helping?

I'm still taking mine and mucus and blood seem to be mostly in check, but I'm still in a bit of pain. I'm planning to start a raw food diet soon and see if that will help.
 
Hi Lizzie,

I just wanted to check back with you and see how things are going for you. Is Pentasa still helping?

I'm still taking mine and mucus and blood seem to be mostly in check, but I'm still in a bit of pain. I'm planning to start a raw food diet soon and see if that will help.
Hi, sorry for delay in getting back to you as I haven't been on the computer much because of personal circumstances.

The Pentasa had been helping, and I'd gone over to three times a week because I'd found research that said this was a good maintenance dose. However, I stopped taking it partly because I was getting bad earache/toothache (maybe caused by Pentasa, neuralgia is one of its side-effects) and I had been put on some type of Penicillin just in case the tooth problem was was an abscess. I didn't like the idea of taking two meds at once, and also I had this naive hope that I was "cured" because my symptoms had stopped. Well, the inevitable happened and my symptoms are coming back, a bit of blood and mucus today. Nothing too bad, but I am going to start taking Pentasa again and try to stick with it.

A raw food diet - that sounds brave!
 
I refused medication. Then I had a horrible flare and ended up in the hospital for a few days..
Do you mind me asking, did you have low level symptoms in the time leading up to your awful flare? What I am wondering is whether symptoms continue at a low level before a flare or whether they can totally disappear and then suddenly cause huge problems?
 
Do you mind me asking, did you have low level symptoms in the time leading up to your awful flare? What I am wondering is whether symptoms continue at a low level before a flare or whether they can totally disappear and then suddenly cause huge problems?
I had no symptoms. I thought I was doing really good! That day I had run a bunch of errands and stopped to have a snack. The moment I took the first bite I started to feel nausea. I went home and napped and felt much better. Later on early the next morning, pain and nausea woke me up out of a dead sleep and knew I'd be back in the hospital. It sucked too because my big brother had just driven 2 days to come hang out with me and I was stuck in the hospital the whole time :(
 
I am so with you on so much of this. I have a mild case of cd/uc. Dr gave me pentasa. Thankfully he does not use prednisone. I only take 2-500mg capsules twice a day. But I don't like pills in general and I don't like putting unnatural things in my body. I have been focused on eating more natural and organic foods for 3 years and was so disappointed reading I would be on meds most of my life. I am planning on seeing an dr that also deals with alternative medicine after the new year. I have found diet helps me. I do take pentasa but I also discovered food IgG allergies. My daughter and sister are both allergic to wheat. As of now neither have been tested for crohns. So I went gluten free with them since we all had similar symptoms. At first it seemed to help. Not all the way but definitely better. Then I started getting worse. Turns out I am allergic to rice. Which is the staple in a gluten free diet. I am also allergic to yeast. Which if you do research on yeast and crohns you will see that many cronhies are allergic to or have sensitivity to yeast. And one of the test in the states that test for ibd is a yeast reaction test. Of course it is just another theory but you may want to look at that. So I am on a gluten, rice and yeast free diet. After the new year I would be on this diet for 5-6 wks. I am planning to add ketchup then mustard then mayo back into my diet and see how I do. If ll is good then cheese. I am not a big cheese fan but like it here and there. I do eat meat as of now my main food is meat and potatoes. Some veggies. I also drink meal replacement drinks when I have not had a lot of calories in a day. And have started taking vitamins (flintstone) to help keep my nutrients as well. I really believe in the back to nature way of life but I also understand there is a time and a place for medical intervention. So I too am combining both diet and med.
 
Top