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Crohn's Disease Forum » Ulcerative Colitis Forum » Don't want to take Pentasa, just diagnosed


 
09-15-2011, 11:53 AM   #31
Lizzie
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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.
09-19-2011, 12:48 AM   #32
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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!
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09-21-2011, 02:30 PM   #33
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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.
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Last edited by lifesover; 09-21-2011 at 03:12 PM.
09-21-2011, 03:11 PM   #34
Lizzie
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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.
09-21-2011, 03:17 PM   #35
Lizzie
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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.
09-21-2011, 03:36 PM   #36
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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
09-21-2011, 03:47 PM   #37
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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?
09-21-2011, 05:29 PM   #38
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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
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09-21-2011, 05:42 PM   #39
Lizzie
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If we all used the Internet to self diagnose,
I don't really see your point in relation to this thread. I didn't self-diagnose: I had a colonoscopy and was given a medical diagnosis by a specialist.
09-21-2011, 06:23 PM   #40
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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
09-21-2011, 07:06 PM   #41
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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
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09-22-2011, 03:22 AM   #42
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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.
09-22-2011, 03:40 AM   #43
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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 ...
09-22-2011, 05:57 AM   #44
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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
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09-22-2011, 07:43 AM   #45
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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.
09-22-2011, 06:50 PM   #46
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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
09-23-2011, 05:02 AM   #47
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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.
09-23-2011, 08:18 AM   #48
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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.
09-23-2011, 09:54 AM   #49
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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.
09-23-2011, 03:13 PM   #50
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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.
09-23-2011, 03:29 PM   #51
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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.
10-27-2011, 08:07 PM   #52
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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.
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10-27-2011, 10:06 PM   #53
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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
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
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10-31-2011, 07:15 PM   #54
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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.....
10-31-2011, 07:17 PM   #55
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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.....
to the forum! Tell us more of yourself on a YOUR STORY thread and others can meet and greet you!
10-31-2011, 07:24 PM   #56
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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.
11-01-2011, 10:24 AM   #57
Lizzie
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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 by Lizzie; 11-01-2011 at 10:39 AM.
11-01-2011, 11:34 AM   #58
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Join Date: Oct 2009
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 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.
11-02-2011, 05:04 AM   #59
hannah-rose
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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...
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Hannah

Diagnosed 2011
Current meds: 6MP and plenty of exercise!
Previous meds: Metronidazole, Infliximab, Humira, Azathioprine
11-02-2011, 09:52 AM   #60
Lizzie
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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!).
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