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Crohn's

J

JohnnyBoy

Hi I'm Johnny, and i need advise....

I have my consultation with my GI doctor tomorrow, I have seen my regular doctor about the issue and he prescribed Budesonide, and it DOES NOT WORK, as far as cramping or relief of chronic diarrhea, and i have told him this after a week or so of taking it. My brother has Crohn's and he gave me a few vicodin and it helped so much. I guess my question is how do i go about telling my GI doctor this without him thinking I'm trying to get pain pills(asking for them anymore is a losing battle because of the real druggies out there). Anyways advise or support would be greatly appreciated.

Thanks.
 
akanderson

akanderson

Honestly when I went to the GP when the symptoms were so bad at the beginning of this year, he put me on something to stop the diarrhea and it made me pee on myself, so they did more tests then finally went to the GI. Then I had a colonoscopy and during all this still in so much pain I felt like I was giving birth to my oldest daughter all over again, no pain meds. After being diagnosed with Crohn's they gave me pentasa and sent me on my way. The pain stoped for a month then bam.... Now after a long journey and pain and extreme weight loss, I have zofran, phinagrin, prednisone and pentasa. I still have pain randomly but not as intense or as long. I think it's just part of it. Just tell him how much pain you are in maybe it will help. I wouldn't say you are taking someone else's meds tho.
And once you are on the right meds I think it honestly makes a world of difference in the pain area.
Heck when I'm in pain oxy doesn't even touch it. My mom gave me some to try and ease my pain... Didn't do crap. I bawled myself to sleep, only diff, I was high.
 
S

Spooky1

Well-known member
Location
South Northants
i didn't find budesonide very helpful either, but prednisolone also did more harm than good, it never sent me into remission, as it seemed to be too much of a stimulant. i still had terrible cramps and far more loo visits than when not on it. but i was still left on it for years. its just what they did back then. however, when it comes to pain meds you yourself can only know what works and when you need it. i'd explain that you needed pain relief and brother insisted you had a few to help you cope. tell himn they worked and that you feel you are in need of this.

and, of course, good luck
 
K

klwbaylorfan

My G.I. dr. was very stingy with pain pills. I had just been diagnosed with Crohn's and I was doubling over with pain in my lower right side. He called me in 10 Vicodin. The smallest dose available. That didn't help me at all. Finally, I just told my husband that I'm going to the E.R. because something is really wrong. Turns out I had a partial intestinal obstruction. Ouch. I was then admitted to the hospital for 7 days and I was on IV Dilaudid every 3 hours. When I got out of the hospital, my G.I. told me to take tylenol for pain. PUH-LEASE! What a joke! He said he preferred not to write prescription pain killers. I told him that this was unacceptable to leave me in pain, so he referred me to a pain management specialist. I couldn't get into the pain management dr. for like 3 weeks, so my family doctor prescribed me Hydrocodone until I could see the pain dr. I just finished my 2nd Remicade infusion and I take Norco for pain. So, if you are in pain and I am sure you are in pain if you have Crohn's Disease...don't take no for an answer about narcotic medication. I hate taking these pain meds but I have a serious illness that I battle everyday. I needed relief and I wasn't going to stop until I got it.
 
scottmyster

scottmyster

HI Johnny, Welcome to the forum , if you are in that much pain i would ask him directly for pain medication they don't comprehend the pain a person's in when you have crohn's. It is immensely painful so i would ask him for pain killers and i wouldn't stop till i have them. Go to another GP if you have too. i am presently taking oxycodone for my pain and it helps alot. best wishes.
 
J

JohnnyBoy

Thank you all for your advise, i feel more at ease with bringing this up to him in a few hours, and I know I'm not the only one in pain. This is a new to me and rather scary, I felt really bad for my brother when i heard he had it and now i know what he and all of you are going through to some extent.
 
K

klwbaylorfan

Hey Johnny! I'm new to this, too! I was just diagnosed a couple of months ago, so this forum is really helping me as well! Be adamant about pain relief medication! They should know better (the GI doc) because we can't take NSAIDS. Only Tylenol and that doesn't even touch the pain. Hope it all works out with your doc today. Let us know how it went!
 
J

JohnnyBoy

Well, I just got back from the doctor and he scheduled a Colonoscopy (i have not been diagnosed yet) just going off what my General doctor said about him being "pretty" sure I have the disease. It didnt go as planned i guess, i asked him about pain meds and he told me to basically "tough" it out and that narcotics are bad for the GI tract in many ways, so it sounds like this doctor is a no go as far as real help(he is a very new doctor to the area so im not sure if he is going "by the book" or what) But i told him what helped and he said take tylenol as i laughed and told him "yah, tried that" so who knows i guess i'll wait and see what is happens Friday.
 
K

klwbaylorfan

Well even if you haven't been (properly diagnosed) pain is still pain. Right?? Do you have a good relationship with your family doctor? There is nothing wrong with getting a second opinion. Tell me your doctor didn't really tell you to "tough it out"?? That is crazy. Your colonoscopy is Friday? I had my colonoscopy on a Friday and my biopsy results were back by the following Monday conclusive of Crohns. If your GI doctor doesn't control your pain, ask him to refer you to a certified pain management specialist.
 
J

JohnnyBoy

I do not have any relationship with my family doctor, i have been to him one time (not a fan of doctors, have not been in a long time) I may get a new family doctor and a new GP we'll see i guess, and he told me to stop taking budesonide so he can actually see the problem on Friday, ha his exact words after asking him what i should do about pain was
"nothing, i know it stinks, but try tylenol" no joke.
 
K

klwbaylorfan

That's a typical GI doctor's suggestion. To take Tylenol. In my opinion, I think you need to stick with this GI doc for now and get your colonoscopy and biopsy results. Then, it is upto you if you want to switch doctors. I wouldn't stop until I find a doctor that you are comfortable with and who understands your situation and especially your pain. This isn't some round of strep throat that's going to go away in a couple of weeks, this is a lifelong journey if you do indeed have Crohn's. I'm so sorry you are going through this. Believe me, I totally understand. I brought my husband with me when I asked for pain medicine because I thought the doctor might see the gravity of the situation since I was in so much pain that I couldn't even drive. Stay strong my friend!
 
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