Getting help on the NHS

Hi all

Need some advice, I originally made a post here
https://www.healingwell.com/community/default.aspx?f=45&m=3267742
but was advised to post in Crohn's to help me getting some Dr attention on the NHS.

I've been suffering from chronic nausea/stomach pain/reflux for two years, which comes and goes and I cant seem to find any reliable link between it and diet. I have been through a lot of tests which all indicate inflammation at the end of my small bowel but nothing else wrong. The Gastroenterologists have sent me back to my GP telling me I don't have Crohn's and the inflammation wont do any harm so I just need to control the symptoms.

My GP didn't know what to do when I saw him, I am on every medication possible for the stomach, PPIs, ranitidine, domperidone, other anti-nausea pills, Elavil (tried sucralfate, made me worse) and we have nowhere to go. So now I just dont know what to do..

I don't get any symptoms from my actual bowels unless I eat certain trigger foods, when it feels like a clump of barbed wire is being dragged through my intestines followed by the usually relieving trip to the toilet. I also have really bad constipation (like toilet every 3 days is regular for me), probably caused by the 100mg of Elavil I'm on but I dont really want to reduce it as its really helped the pain and depression from all this. Apart from that my bowels give me no problems whatsoever, not even the occasional pain. My stomach on the other hand gives me living hell. Nausea all the time, stomach pains if I move around too much. I have to basically sit on the floor all day with my knees to my chest because its the only thing that relieves the nausea, God knows why.

My situation is pretty desperate, I cannot eat enough to maintain my weight, I eat plain rice and white fish, I try adding some fat to the diet at times but my stomach just rebels and I end up stopping it. I have noticed recently also that my hair is falling out due to what I presume is malnutrition and my simple diet.

So I dont know what to do or where to go next, everyone is very worried, my GP and dietician, yet they seem to have no idea what to do..

Welcome to Healing Well, FML@@! I'm not from the UK but I do have Crohn's and know quite a lot about it.

"I have been through a lot of tests which all indicate inflammation at the end of my small bowel but nothing else wrong. The Gastroenterologists have sent me back to my GP telling me I don't have Crohn's and the inflammation wont do any harm " ---- OH BROTHER!!

Inflammation is the end of the small bowel is NOT normal. It is an indication of a problem. It may not be Crohn's because some medications can cause inflammation there. The only way to rule out Crohn's is by taking biopsies in the area of inflammation.

Did they see the inflammation on colonoscopy? If so, did they take biopsies? Can you get a copy of your colonoscopy report? If you didn't have a colonoscopy, how did they determine inflammation? If you didn't have a colonoscopy, then you need to have one.

Don't know how to work the NHS. Hopefully one of our other members will see this and offer suggestions.

Yeah, histology is biopsies. And yes, they were normal.

You probably don't have Crohn's. But even if you did, I can't see a bit of inflammation in the terminal ileum causing all the stomach problems that you have described. To be honest, much like your doctors, I'm baffled. When this all began, were you at a normal weight and eating normally?

Meanwhile, it might be worth trying Miralax for the constipation. Constipation can cause nausea in its own right, though I'm not sure quite as bad as what you've described...

Yeah....that is a confusing report because I would have thought that cobblestoning of the terminal ileum and terminal ileitis is Crohn's disease. Maybe you need another GI opinion

Thanks for the help interpreting the results, I'm very relieved that it's probably not Crohn's because I really don't think I could cope with that on top of the problems I'm having now.

The inflammation could be a drug side effect, I never touch NSAIDs but with the large amount of pills Im taking I wouldn't be surprised if it was causing problems elsewhere.

I think I will ask to be referred to another hospital for a second opinion, I've seen about 5 different GIs at the current one (otherwise appointments are months apart) and they're all pretty much the same. I'm allowed a second opinion on the NHS, maybe I should try and find a doctor with experience in abnormal cases like mine.

This is all really getting too much for me