• 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.

Just a question

just a question

i am not fully diagnosed with chrons yet iv was first diagnosed with ibs but i never had any tests i get diarhea 40 plus times a day severe pain im anemic and im lacking in other vitamins also i get alot of blood i found a new dr. that said it sounds like chrons and he prescribed me meds for crohns iv beed taking asacol i take 2 pills 3 times a day and my diahrea stopped iv been taking it for a month now im finding it dosent work as good as it did when i first started but i dont think i can live with out it now, this week im having a little bit of the diarhea not much though but the pain is still pretty bad im taking t3s they arent working that good i think im becoming immune to them now i was just wondering what do other people take for the camps i get them so bad i can do anything im basicly curled up in pain, thanks
 

GoJohnnyGo

One Badass Dude
Hi cj28, fellow Asacol user here. Sorry to hear you're in a lot of pain. I have a lot of your symptoms.

My doctor started me out on Asacol back in August. I'm up to 9 a day now, plus something called Prevacid.

It doesn't help with my diarrhea much, although I'm going less often now. As for pain, I've pretty much been gritting it out unaided. I've had mixed results with acupuncture.

Everyone seems to have different reactions no matter the medication. Crohn's is just that way. I have been diagnosed with it for 19 years come January.

Hang in there... hope everything gets sorted out for you. I think you'll find a supportive group here for any questions you have.
 
Last edited:
havent found any meds that help with the pain, but i am constantly laying down with my heating pad wrapped around my belly. it definitly seems to relax things slightly for me.
 
thanks guys im still stuck with the tylonal 3s iv been trying not to take them but i had no choice yesterday the pain is so bad and now iv been put on something called Prednisone not really sure what it is but im taking it cause the asacol is going straight through me and coming back out in pill form hjas that happened to anyone else?
 
Prednisone is a steroid many people on Crohn's use, including me.
Not meant for long term, and is not a pain killer, it is an anti-inflammatory.
Are they giving you this without having a diagnosis? If so, that is very odd,
being that Prednisone has many side effects and doctors don't usually start
those kind of meds until they are sure you have Crohn's or some other
immune disease. I am also on Asacol. Sometimes people poop out the pills,
but if this happens often, the info sheet says that you may not be absorbing
them and you should definitely let your doctor know.
 

soupdragon69

ele mental leprechaun
Try sipping some peppermint tea for cramps and gut spasm too - it was used alot by the staff when I was in hospital for patients in pain on top of the painkillers.

My gastro nurse was telling me on Tues that there is sooooo much they still dont know about Crohns and I know she is trying very hard to help patients address the pain they are in because it often goes unacknowledged.

Sometimes its a case of layering things like the peppermint tea and painkillers and going for a more global approach. Have a look at what you are eating too and go for soft easy to swallow and digest stuff like soup and mashed potatoes (but dont reheat mash or rice as the starch can be very tough on the gut).

Prednisolone as has already been said is an anti inflammatory and your doc must be pretty sure its crohns I am sorry to say between that and the asacol. Many find the asacol on its own only helps short term and often need something else on top.

The pred can have a side effect of insomnia and also increasing your appetite too so they are things to watch out for. Once the pred has brought your inflammation under control it will gradually be decreased until you stop them. The trick then will be to keep the inflammation in your gut at a low level or non existent.

Thing to remember with Crohns is it peaks and troughs - so it comes and goes and its a case of learning to listen to your body and looking for the signs that show your gut isnt happy. This will come in time as you start to get spells where things improve.

One of the biggest issues is exhaustion due to poor absorption of nutrition, the anemia you have and lack of sleep due to running to the loo constantly to name just 3 aspects. As each of these is addressed by the treatment your doc gives you you will gradually feel better. Rest when you can even though its frustrating and allow your body some recovery time ok? Its been trying to help you cope all this time so dont be sore on yourself for not being able to all you think you should!

Welcome to the forum!! Looking forward to seeing you posting more. We are here to listen whether its a good day or not. Things will improve! ((hugs))
 
Last edited:
thanks every all the posts from all of you , my dr is very sure i have chrons and this is day 2 of the Prednisone for me and its working great i feel much better already, i am waiting for the scope to get done but my dr knows how severe my symptoms are and i couldnt function with out meds he said if they work than i should be taking them and im really glad i am i couldnt do anything before i couldnt eat or anything the asacol worked for awhile but i guess its just stopped now i havent had any bad effects of the Prednisone yet but im only taking them for 7 days.
 
Last edited:
I was diagosed with Crohn's via a new blood test that looks for Crohn's antibodys many dr.s still do not know about that, I also was diagnosed with Celiac disease that usually goes with Crohn's. ( you have to eat wheat or Gluten inorder to test positive) after that if you are positive they want a biopsy that is up to you if you want to do that , Then if you are + you can go Gluten Free. You are lucky that your dr. believs that you have pain my dr. says that Crohn's does not cause the pain I am in. I have been buckeled over in pain for 2 years. The heating pad helps. Happy New Year.
LL
 
Glad to hear the Pred is working well for you. Side effects differ for everyone,
and I didn't have any side effects at all until about 3 weeks into them. No
insomnia for me, instead I got joint pain, heartburn and a puffy face.
 
dollamasgetcrohns? said:
I was diagosed with Crohn's via a new blood test that looks for Crohn's antibodys many dr.s still do not know about that, I also was diagnosed with Celiac disease that usually goes with Crohn's. ( you have to eat wheat or Gluten inorder to test positive) after that if you are positive they want a biopsy that is up to you if you want to do that , Then if you are + you can go Gluten Free. You are lucky that your dr. believs that you have pain my dr. says that Crohn's does not cause the pain I am in. I have been buckeled over in pain for 2 years. The heating pad helps. Happy New Year.
LL
Thats horrible that your dr. dosent believe you about your pain, i had a dr just like that i was going to him for a year asking for help and he didnt do any tests n me and said its irratble bowel syndrome i was going d between 40 and 60 times a day with all the chrons symptoms and he offered me no help i am so glad a switched dr.s when i did it got to a point where i could barley even drive my kids to school from the pain, i hope your dr. smartens up and gives you some help.
 
:( I was thinking to show him a print out of all the Crohn's patients talking about pain. The IBS really upsets me because I do not believe in it. If I actively try to prove my pain with all the statments he might not believe anyone I guess then you all have Irritible Bowl Syndrom , to me that is just a garbage can term. If I switch Drs then he thinks I am Dr.Hopping, I have made up my mind that he will learn, one day, because if you still have a deram that they must learn about Crohns and Celiac then I have made my point, I hope it does not wind me up with a seriouse siyuation again. Right now I fear I might have an obstruction. I am just waiting to see which way this will go.:(
 
cj28, glad the prednisone is working for you - I remember taking it the first time. I went to bed one night crying my eyes out because I was in so much pain and so exhausted. Woke up the next morning feeling about a hundred times better, it was miraculous :) Side effects can be nasty, but hopefully you won't have too much trouble with them.

As for the cramps - I take paracetamol and codeine for RA joint pain. I cant' take anti-inflammatories mostly because they inflame my CD, can't take things like tramadol because they send me loopy, so paracetamol and codeine is about my only option.

The codeine rocks because it slows my gut down - deals very effectively with the cramps and definitely slows down the whole urgency thing for me. Just a thought - not a long term option because of the risk of obstructing, but I'm lucky in that my doc is happy for me to self-medicate to a degree. She knows that I'll slow down on the codeine if I see a change in the way my gut's moving, so to a large extent I use codeine to control things.
 
scratch my comment about codeine - just seen that it seems that it's only in the UK that it's freely prescribed for CD. I didn't realise that in other countries it's strictly controlled, my GP prescribes them at the rate of 200 at a time!
 
Sparky said:
scratch my comment about codeine - just seen that it seems that it's only in the UK that it's freely prescribed for CD. I didn't realise that in other countries it's strictly controlled, my GP prescribes them at the rate of 200 at a time!
In a way i find this strange because why dosn't the doctor admit that i might be in pain due to Crohn's. They all say Crohn's patients do not suffer from that much pain. I spend the whole day in bed now curled up in a ball. Now i am so bloated i think i mighht have a blockage the doctor says as long as i have a bm a day i am fine, i feel like i am 9 months pregnant and that i have to sit up straight otherwise the food is backing up, in my Hysophycus. :(
 
I've no idea why your doc wont accept you're in pain, I guess maybe I was just lucky with mine? He's a total legend, but it probably helped that I knew him in a professional capacity beforehand, and that with one or two exceptions (days where I was just in tears due to pain/exhaustion/frustration), I could talk to him quite clinically about it.

Medics tend to be quite clinical, it's the nature of what they do. I used to keep a pain diary, using a scale of 1-10. I was always honest, tried very hard not to let my state of mind affect the way I 'rated' my pain, and I think that helped him see what I was dealing with. For example, today I'd rate it at around a 4 - uncomfortable enough to make me take something for it, but with a bit of effort I'll be able to do what we've got planned this afternoon. The day I fainted due to pain in the car was a 9. Days where I wake up doubled up at 5am usually get a 7.

I'm sorry you're having so much trouble :(
 
Well that prednisone worked great for the problem im done my 7 day treatment but coming off that was horrible i had mood swings and this strange pulse in my neck, and it felt the pulse was expanding it was the worst feeling next time i think i would rather suffer than take that again.
 
Hi

I too am going through the same issue with pain....the best thing that works for me is sitting in a really hot bath and i find that it works wonders. But of course you can not stay in the bath for ever without becoming a big prune. I found that prednisone worked really well to control the inflammation and the pain but that comes with a lot of other nasty side effects. T3's worked for me for a little while as well and then T4's but they both stopped working eventually.

I currently have a prescription for medicinal marijuana but have yet to fill it. I have had the prescription for about 6 months and think that it may be expired but i am worried about taking it, some people have sworen by it.

One other thing for pain is percocet. That is to be quite nice to take, but i do not have any experience with this one as well. Morphine has been given to me on a regular basis in the hospital and does not work at all.

Sorry i hope this helps somewhat!! But set up a TV or a radio near, not close but close enough to at least hear it or take up reading and have some nice long hot baths, i really like those a lot. As soon as you get in the pain is gone instantly, for me anyways.


Thanks good luck
Ray:)
 
I can't believe the Dr.'s would think that Crohn's patients don't have that much pain. Sounds like they aren't that familiar with the disease. My GI is kinda dopey some times, but at least he knows that I am living with pain...and that it is the disease, not me just making it up.

It just sucks when you feel like you can depend on a Dr. and they disappoint you. Makes me feel helpless.
 
i finally got my scope booked in two weeks, good thing you get put out for that i saw the specialist and he thinks its more likley colitis i heard thats worse than crohns, he said its either chrohns or colitis well at least the good thing is i can finally find out and treat it properly.
 
Top