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[Deb from Michigan]

Hi my name is Deb. I was diagnosed with crohns back in Feb '06 at the age of 47, however, I have had problems most of my adult life and was previously diagnosed with irritable bowel. I started on Remicade in 07, then went to Humira in '08, then Cimzia in '10 and mercaptopurine in '11, had to stop all of those as I had reactions to all, so currently just on prednisone. Anyway, starting spring of last year I started getting terrible intense pain in lower right side starting as soon as I woke up and had bowel movement and would continue all day. I had never experienced pain 24/7 from my crohns so I was sure it was something else, so I had every test you could think of but all came out ok, so dr. is telling me it is my crohns. I am currently taking percocet 7.5 about 8 a day and pain is still at times unbearable! I am afraid that my liver will start suffering from the continued pain meds but I can barely function with taking the pain med so without I would be bed ridden as I am still during the day as well!! Does anyone have any advise for me or possibly different pain meds to try? Thx!

 

[Angrybird]

Hello and welcome to the forum. I am sorry to hear that you are not feeling well at the moment. With regards to the tests I assume the did do a colonoscopy? Did they do scans to to look at the area around the bowel to see if something else is going on? I agree that it is not ideal to be on constant pain meds especially as this is not sorting out the problem. I would continue to push to the docs to find out what is going on. Pain wise does heat help - hot baths, heat pads etc? Are your BM's 'normal' when you go?

Will keep fingers crossed that this can be sorted soon.

AB
xx

 

[David]

Hi Deb and welcome to the forum!

You should absolutely positively not be experiencing constant, unbearable pain! If your doctor is not willing to do the tests necessary to find out what is causing this, get a new doctor. Yes, I'm sure it's related to the Crohn's but saying as much and sending you on your way with just some pain meds that don't do the trick is not the correct way to help you. They need to make sure nothing serious is going on and if it is, deal with it appropriately.

We're here for you. Demand the level of care you deserve. If it's not provided, get it elsewhere.

*hugs*

 

[Jennifer]

Ya I agree with the above that handling the pain really isn't the best option at this point. If your GI wont do their job (there are many different meds out there) and figure out what's causing the pain (inflammation, stricture, abscess etc.) then you gotta seek a second opinion from another GI.

What were your symptoms on all those other drugs you tried (Remicade, Hurmira, Cimzia, 6MP)? Have you tried any meds like Asacol, Azathioprine, Entocort etc.?

Welcome to the forum!

 

[lisakuney]

Sounds like your doctor either needs to step up his game, or you need a new doctor who will take your pain seriously and do more to look for the cause. Good luck and I hope you feel better soon.

 

[Pirate]

Agree w/ everyone else. If you have to get another GI do it. Hope things turn around soon.

From another Michigander

 

[Deb from Michigan]

Thanks for all your responses, sorry it took me so long to reply. I just went to another GI dr. at the Univ of MI on 8/31/12 - he wants me totally off the Percocet as he advised this could actually be making pain worse, he called it narcotic bowel syndrome! I have lost 40 lbs because the pain is worse after eating,so I am eating very little, but I am weaning off the Percocet down to 3 a day now weaning to 2 a day, he said to wean off one pill every 5-7 days, so of course pain is even worse. He also took me off baby aspirin because he said crohns patients should not take aspirin - first time I've heard that! I also told him I have used medical marijuana which i legal in MI, but he told me that can actually promote scarring in the intestines, which i again something I have never heard! He mentioned a FODMAP diet also? Also wants me to go to therapist or attend group sessions, as I am very depressed. Also said possibility its chole stryamine? again never heard of any of these things??? Does anyone know anything about the above mentioned items? If he confirms the crohns is active again he also said I could try methotrexate, thats only med I havent tried yet. Any suggestions or answers would be greatly appreciated! Thanks, Deb

 

[David]

Hi Deb,

I haven't heard of medical marijuana promoting scarring. Will you ask him for the source of that information next time you talk to him please?

I'm guessing he was referring to cholestyramine which is a bile acid sequestrant that, for some, reduces how often you have to use the bathroom.

FODMAP is a type of diet. It and other diets are discussed in our diet section.

And yes, no aspirin or NSAIDs for Crohnies!

 

[Deb from Michigan]

Thanks David yes i will ask him cuz i tried researching this on computer today for hours and could find nothing? Thx again for responding so quickly!

Deb