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crf450r

crf450r

Joined
May 4, 2009
Messages
16
Well I am a 29 year old male. Was diagnosed with Crohn's about three weeks ago. It started with constant pain in my right side. I went to my regular doctor and they thought I had appendicitis . So they sent me to the emergency room were they did a CT scan. The scan showed wall thickening in the terminal ileal. So they referred me to a Gastro doctor. He saw me and said lets wait to make sure its not an infection. I waited and pain got worse. When I went back to the doctor he said it was more than likely Crohn's. So a colonoscopy and x-ray later I was diagnosed with Crohn's in my ileal only. Now I have been taken Entocort, Lialda, and folic acid for about three weeks. I still have a elevated white blood count. The doctor gave me Cipro and Metronidazole to try to get the white blood count down but I could not take it. It made me sick,gave my bad headaches and body aches all over. The pain still seams to get worst everyday. The only thing that helps me feel any better is pain meds. I go back to the doctor in 3 weeks and if I am still not getting any better he wants to change meds. All of this is making me very depressed. :depresse
 
Hello CRF,
I am new to the forum but by no means new to crohns. Like Pen said the Cipro is so important! The Flagyl is one of the most disgusting tasting medications that you will have to put in your mouth. Again it is almost a must to get you on track! I have had so many rounds with these same meds.. These and pred. are kind of the ones to get you through a flare. If you can't get them down you could have a hospital stay before you know it. Try to take pain medications for as short of periods of time as you can. You want them to work for as long as possible. The more dependant the harder it is to control the pain during the hard times. Not that you don't need it now because I know the pain is like nothing ealse. Also make sure like Pen mentioned to keep your doctor updated you don't have to wait two weeks to see your Dr if the medications are not working. Best wishes with this and rest when you can. It does seem to help during the flares also.. I hope I helped a little. I have been going through this for about ten years and I have a hard time when it slows me down. My husband seems to keep me in check in the rest department better than I do!
 
hi CRF, welcome to the forum.

wow, three weeks to diagnose! that's pretty good going compared to some of us.

it may be that the meds you're on just need more time to work, or possibly they're not right for you - i guess time will tell. it might be helpful to keep a diary of how they're making you feel, and you could also include in the diary foods you've had and how your symptoms are afterwards. diet is a big factor in managing Crohn's pain, many of us have trigger foods. there are many threads on dietary advice here in the forum, so have a good look around..

if you're flaring, it would be a good idea to try a low residue diet for a while, keeping off things that are hard to digest (raw veg, onions, mushrooms, chewy meat etc). also like Pen suggested, you could try probiotics.

to assist the effect of your pain meds, you could also try stomach massage (it's better with a carrier oil than without), and heat like from a hot water bottle. ibruprofen can irritate stomach linings so if you can avoid that then all the better.

good luck, i really hope you start to feel better soon. please keep us posted.
 
Hi CRF, welcome to the forum. I am glad to hear you got a diagnosis so quickly...an important first step.

I just want to add to what has already been said about the cipro and flagyl. Like many others here, I have taken rounds of these meds too many times to count. I know how you feel with the flagyl...it is probably one of the hardest meds to take.
I moan and complain everytime I have to take it because it makes me feel like crap. The thing is, all of the aches and nausea and lightheadedness and general funk you feel with the flagyl is probably coming from the infection working its way out of your body. These meds really do work if you can push yourself through it. In the short term it's horrible, but I think the long term benefits are worth it.
 
Dingbat I want to say thanks for the tips I have read from you! I sometimes think you hear the same suggestions all of the time. But checking in on here has been good for me! Sorry this is a little off subject. Thanks......
 
you're welcome :) and don't worry about taking things off topic, we're experts in that here lol
 
Thinks everyone for the tips and support. Today pain isn't as bad as yesterday. Yesterday was real bad. It helps me talking to people with the same problem as me.
 
same boat (almost)

sounds similar to me; but I have just started Pentasa (my first med). I'll let you know how it goes.

NL
 
Howdy.

Hate to hear you've got Crohn's. It's a real bummer. Dunno if we can help you out of your funk but hey, you've found some commiserating "Crohnies."

It DOES suck. Welcome to the club!
 
Today is another bad day. My right side pain is bad running all the way up to my shoulder. I am also running a fever of 101.
 
hey crf and welcome
sorry youre havin another bad day.
what is your fever from? is the prospect of infection totally ruled out?

i mean, crohns inflammation itself can also cause fevers, mine usually hung around 101-103 range, not fun at all. but if they are caused by infection, then its important to find the cause!

do you find that anything helps? i found 1000mg of tylenol to help a BIT. not much, but when i felt the chills coming on, a dose of tylenol would make the fever spike pass faster than without it.

good luck, let us know how youre doing!
 
I ran the high fever for just 2 days over this weekend and then it went away. I had water poops and side pain too. I have blood work done every 2 weeks. I have had an elevated white blood count ever since they started doing the blood test. The doctor says the meds I am taking can sometimes cause the elevated blood count. I am feeling much better this week maybe the meds are working? I still have a little side pain but boy do I feel better.

Do yall have elevated white blood counts when a flair happens?
 
Well I started feeling better for about 2 weeks but then things took a turn for the wrost. Entocort doesnt seem to be helping me so my doctor put me on Prednisone. I still have a high white blood count. and now my right shoulder hurts bad with my right side pain. The doctor says that crohns can cause joint pain. But only my shoulder hurts. Anyone else with bad joint pain with there right side tummy pain? Also anyone else taking depression meds due to there illness?
 
hey crf
coincidentally, i just started taking prozac today for depression stuff. i know i know, my posts dont really sound depressed, but in real life theres a lot of tears, frustration, being cranky, pushing people away yet feeling lonely, and not a lotta laughing or happy :(
are you on something? how long? dr said it could take a week or so for it to kick in, so its kinda wait and see right now.
 
Hi CRF. I had exactly the same case as you. Now 9 years later, 5 hospital stays, 2 obstructions and various meds (Pentasa, Prednisone, Imuran, Cipro, Flagyl....), I have started the SCD diet a month ago. And I'm feeling much much better and only taking Pentasa and fish oil. If you have the will for it , give it a shot. Here is a link to get you started:

http://www.breakingtheviciouscycle.info/

If you need any help with this, don't hesitate to ask.
 
Last edited:
Mazen said:
Hi CRF. I had exactly the same case as you. Now 9 years later, 5 hospital stays, 2 obstructions and various meds (Pentasa, Prednisone, Imuran, Cipro, Flagyl....), I have started the SCD diet a month ago. And I'm feeling much much better and only taking Pentasa and fish oil. If you have the will for it , give it a shot. Here is a link to get you started:

http://www.breakingtheviciouscycle.info/

If you need any help with this, don't hesitate to ask.
Click to expand...


Thanks for the link. It seems interesting so I ordered the book.
 
hello again!

I am not very familar with the med called Lialda? That is one I don't think I have
taken..imagine that..lol. Anyway, real quick on the fever spikes and wbc I had these same problem when my crohns was in a real bad flare but they also said both of those two things were a side effect of my of some of the meds I was taking at the time. They were methatrexate, enbrel and one other?? Sorry a can't remeber that one. Ok the reason I am saying all this is my dr had to take me off of them because those symptoms were just not getting better...I don't know how long you have been on those but I thought I would just through that out there....
Take care keep us posted :)
 
The predisone is working for me. I feel the best I've felt in a long time. My shoudler and side pain are completely gone. I hope I can keep feeling this well. Its almost like the Predisone gives me more energy, so much so I have trouble sleeping. Does anyone else here get this side effect from the Predisone? I go back to the doctor Tues. and will give an update after.
 
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Well the predsoine worked on me. And now the doctor is winging me off of it. And know the doctor has me taking Azathioprine. Anyone else taking this. Or anyone tummy pain from it?
 
HI Crf - I am on azathioprine and haven't had any belly pain from it. Do you take it with anything? I take mine with chocolate milk. And maybe if you usually take 2 at a time, maybe you can separate them with docs permission.
 
Now that I am not taking predsoine anymore I have side and shoulder pain again. I was on precdsoine for about 4 weeks and felt better when I was taking it. When I started tapering off of it the pain started to come back. It seemed the less I took the more pain I had. Now I am completely off of it and the pain is the same as before. :depressed: How long do others stay on Predsoine?
And when you stop taking it does the pain come back?
 
Hi crf -
Welcome to the forum - sorry i missed your initial post. i just finished a 9 month sentence on prednisone. i am now taking 6mp. so far I'm good but it's only been a week off the pred.
 
hey crf
yeah thats something that is a problem for patients sometimes, you feel good on the pred but then once you stop it, the problems act up again.
what did your doc think about this? does he have you on other meds that are supposed to help control the symptoms?
usually pred is used for a shorter period of time however as you can see that time really varies from situation to situation. i ahve been on it for a span of a year and a half almost and then iver also been on it for a span of just 5 days.
then there are some people who dont respond well to any other treatments except the pred and are left on it for years at a time, which is very unfortunate in my opin, as we all know how damaging it can be.
a lot of gi docs wont make a move like that though,. they worry about the risks just as much as we do.
 
My doctor wasn't to keen on the LDN idea. He's never heard of it being used for Crohn's. So he put me back on pred. 40mg a day.And I got a new med as well to add to the meds I'm already on. He's got me taking Kapidex 60mg. Its for reducing acid in the stomach.

So this is list of meds I am taking now.

1. Kapidex 60mg
2. Pred. 40mg
3. Lialda 3.6gm
4. Azathioprine 100mg
5. Folic Acid 1mg
 
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crf

What is LDN and where did you get the idea from? I think its amazing how well Predisone works. I have Chrons Coloitis, and there is a guy at my work with Chrons. He said if he ever feels sick...he breaks a predisone pill in half and it works. A bottle lasts him 6 months. I thought that was crazy! I was on Predesone and it worked, but then I went back to feeling like crap after I was done with it.
Everyones body reacts different to different medications I guess.

I am new to the boards..so its nice to start meeting everyone.
 
PS3 Player said:
What is LDN and where did you get the idea from? I think its amazing how well Predisone works. I have Chrons Coloitis, and there is a guy at my work with Chrons. He said if he ever feels sick...he breaks a predisone pill in half and it works. A bottle lasts him 6 months. I thought that was crazy! I was on Predesone and it worked, but then I went back to feeling like crap after I was done with it.
Everyones body reacts different to different medications I guess.

I am new to the boards..so its nice to start meeting everyone.
Click to expand...


LDN = Low-dose naltrexone

Go to the treatment thread and you can learn about it.
or go to lowdosenaltrexone.org
 
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Well I am coming off of Pred. again and low and behold everything comes back. And this time I have knee and ankle pain thats so bad I can hardly walk. What is the deal? I am starting to feel this isn't ever going to get under control. I go to my GI doc tomorrow and the last time I was there he wants me off of the Pred. he hates that I am taking it. He wants me to start taking Bio. Meds. Not the Remicade because he almost lost a patient that was taking it. He talked about a shot I would take 2 times a month at his office. I am afraid of taking the Bio. meds because they dont know the long term affects of these meds. And what if I have a bad reaction to it? My doctor even told me he doesn't like giving the Bio. Meds. So thats has scared me even more of them.
 

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