My wifes issuse and the doctors incompitance

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I will try to make this short but concise but I have some questions and the doctors are all clueless or so opinionated that they think they know it all. So she have been living witth Crohns for about 20 years or so now had several surgeries to remove multiple parts of bowels. At least once ever two months we end up in the ER because of complication. The do CT scans, X-Rays, blood work and even scopes from time to time and everything comes back normal. She has seen so many doctors I could even begin to name them all, been on every know medicine aside from Humara and a new one I cant remember the name of that that FDA just appoved a few years back. Nothing has helped her. But 20 mins after eating anything she is curled up in pain. The doctors think she is nuts and the only relief she ever gets is from opaites, the problem here is all the doctors think she is some junk just seeking meds. She has been told she has crohns and then she doesnt then it's IBS, or Colitous, or nothing at all or all three. She clearly has in the past had a crohns issue bad enough to cause her to need surgery but is it possible that the years off taking pain meds have cause her bowels to because super sensitive to anything and the real undelying cause for all of her pain is the pain meds. I know for a fact she isnt taking the meds as a way to get high or anything like that as she does not get the euphoric effect the junkies seek. But I'm at a loss the doctors cant find anything wrong but she is serious pain 24/7 and is lucky if she eats once a week because of the pain. Even just drinking water cause her issues. Ironically the only thing that doesnt seem to cause her serious pain is iced tea and sun flower seeds, neither of which should be good for her and should cause her serious pain but don't. I would love some input from you all and see if maybe I can come up with something the doctors have missed.
 
Hello! This is a very familiar story, because Crohn's Disease doesn't show up on many tests. Has your wife seen a GI Specialist? If not, please get her family doctor to refer her to one ASAP. Also, I would recommend a soft food diet, which means eating easy to digest food, such as yogurt, eggs, toast, and you could supplement her diet with Ensure drinks or other supplement liquid drinks. Every person is different, so sometimes you have to experiment with food, to see what is tolerated and what isn't. I avoid any food with a lot of fiber and seeds or nuts. But every person has a different tolerance.

Your wife should get a correct diagnosis first. You can be helpful, by writing down symptoms that she has and when. Going to the Emergency room is not a good way to get a diagnosis. Go to a GP and ask for a referral to a GI Specialist. Go with your wife to the doctor and explain that she is not a drug addict, but that she needs to know what is wrong. The GI Specialist can do tests that they don't do in the ER and hopefully can get to the bottom of this. Best of luck!
 
So here is the thing you can have crohns AND have no sign of active disease but be in severe pain 24/7
It's known as amplified pain syndrome
Think of it as a tv remote if the same button keep getting hit over and over ( due to inflammation from any gi disease) then sometimes after the inflammation is gone the button basically is "stuck " pushed in and still sending out pain signals
So minor things cause an inordinate amount of pain

We went through this with ds for three months ( 4 hospital stays)
He had a flare of diarrhea but once that was fixed the pain from constipation was amplified
And he was curled up in a ball
He did een ( formula only for a few months ) and participated in a pain program which emphasizes exercise to desensitized the nerves and not pain meds

Things are almost back to normal now
Tagging Maya142

Depending on where you are there are a few adult pain clinics that use similar techniques
Cleveland clinic is one I think

Good luck
And definitely go with her to the GI - ds had a ton of tests to verify the disease wasn't active
 
Yes, it is possible to have pain without the disease. Make sure that there is no active disease, through a GI Specialist, but if there isn't, then ask to be referred to a pain clinic. It may take awhile to get the referral, but they can find the best pain management program for your wife. I have been dealing with chronic pain for 18 years. I am on a long acting pain medication, that doesn't make me drowsy, but helps keep the pain at a manageable level. At first, I was thinking that your wife hadn't been diagnosed yet, but then I reread your post. Hope things will get better for you and your wife!
 
I agree it could easily be pain amplification/chronic pain. As MLP explained, the nerves get so used to sending pain signals because there has been inflammation for so long, that even after the inflammation is gone, they continue to send pain signals.

There are some meds that can help this pain -- meds like Gabapentin, Lyrica, Elavil work on nerve pain. Of course, regular pain meds may also help.

There are also intensive pain rehab programs which use PT and OT and psych (usually cognitive behavioral therapy) to help you learn how to live with the pain and to "desensitize" the nerves. Cleveland Clinic does have one for adults (my daughter did the pediatric one).

The other things they can use include a TENS unit, biofeedback etc.
 
I feel your pain. I have been on disability and it seems like Liberty Mutual does to believe I have CD and in that case will deny my claim. A few weeks ago I saw a new DR. his opinion is the ONLY way to diagnose CD is with a biopsy. I asked the nurse why then did he do over $1100 in blood work alone? Turns out my antibody tests came back positive for CD. Its not my fault my CD is in an area not reachable with a scope. The lab work, CT scan and SBS will just have to do. I mean at what point do you look at what has come back positive and the symptoms and the response to medications and call it what it is????? How many test do you really need to say its CD???

It seems to me- we almost need a medical degree to get good medical care. to many people are suffering because Drs don't treat it well enough. Not what I really wanted to say but, hopefully you get the picture!


Lauren
 


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