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11-02-2011, 01:12 PM   #61
hannah-rose
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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.
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11-02-2011, 01:19 PM   #62
kiny
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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.
11-02-2011, 02:09 PM   #63
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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.
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.
11-03-2011, 04:31 PM   #64
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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.
11-03-2011, 04:35 PM   #65
Lizzie
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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 by Lizzie; 11-03-2011 at 05:13 PM.
11-03-2011, 05:08 PM   #66
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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?).
11-03-2011, 05:31 PM   #67
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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.
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11-03-2011, 05:33 PM   #68
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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.
11-03-2011, 05:52 PM   #69
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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.
11-03-2011, 06:07 PM   #70
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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
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11-03-2011, 11:51 PM   #71
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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
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11-07-2011, 09:28 AM   #72
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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.
11-07-2011, 09:36 AM   #73
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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
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).
11-07-2011, 09:37 AM   #74
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PS I'd rather lose my hair than my colon
Good point there! I'm scared of losing both, though.
11-07-2011, 05:14 PM   #75
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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.
11-07-2011, 05:16 PM   #76
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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.
11-08-2011, 07:57 PM   #77
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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.
11-09-2011, 06:02 AM   #78
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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.
11-09-2011, 02:30 PM   #79
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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.
11-30-2011, 04:29 PM   #80
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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.
12-09-2011, 08:11 AM   #81
Lizzie
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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!
12-09-2011, 08:16 AM   #82
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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?
12-09-2011, 05:18 PM   #83
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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
12-14-2011, 11:59 PM   #84
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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.
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