Ill, Vomiting, Pain, Nausea, Weakness, Dizziness: nothing wrong?!?

Okay, I guess I should start by saying that I have been living a 2-year long IBD diagnosis ordeal. I was told in the beginning that I had "focal active colitis" and that it would go away with azulfidine treatment. It didn't, and I keep going back & forth between being ill & being okay (not great, but okay). I have had blood in the stool, with usually 4-7 bms a day. I had lost 50 lbs. Small bowel follow through showed inflammation in LRQ. Most other tests were normal. Stomach ulcers. Migraines. Ear problems (needed tube in ear). Abdominal pain. Stuff like this for the last couple years... I recently went to a new GI at a teaching hospital who went over my records & biopsies & said that I had microscopic (lymphocytic) colitis. She put me back on azulfidine, but a double dose of what I was on before. She did tell me that early in the disease, crohn's resembles microscopic colitis, so it may possibly still be CD, but they were going with microscopic colitis. I felt like at least I was told it was IBD, and that it would probably come out as crohn's down the road as my PCP had told me. She told me that the "lesion" on my bum was something that people with crohn's get, but that doesn't mean I had crohn's.

I was doing pretty well. My BMs were down to 4ish a day. Then I started to feel under the weather again. I had been under a lot of stress, so I think this might have played a part in it. My BMs totally changed. I went to not having any for days & days, then having diarrhea. Lots of mucous & blood in the mucous. I have had complete exhaustion. Then last weekend, I again was ill. Horrible abdominal pain. All I could do was curl up in a ball & try to keep from crying. I was nauseated. I only ate oatmeal that day trying to be calm to my tummy. The next day I was still feeling horrible, waking up in pain. I was dizzy so I figured I would eat, I had a piece of toast with butter with a tiny glass of milk. It hurt after eating. My husband asked if I wanted some potatoes & it sounded good, so I thought I would try it. about a half hour to an hour later I was in the the bathroom vomiting violently. It took some retching to even get the vomit up, it seemed to come from my toes. I kept vomiting every 15 minutes after that for abotu 4 or 5 times with lots of bile. It was so painful, it brought tears to my eyes. It didn't feel like normal vomiting to me.

My husband suggested the ER but I didn't want to go since I have had bad experiences there. I decided to hold off & see if it would pass or call my doctor Monday morning, which is what I did. I couldn't get in to see him, so they suggested urgent care. I went & they did xrays & checked my urine (I have had lots of UTIs & also a kidney infection before). I had blood in my urine, but no infection. The doctor looked at the xrays & didn't like what she saw & printed my xrays to take with me & sent me to the ER. She felt I had a possible obstruction & that I had 2 strictures. At the ER (after a 3 hour wait) they gave me an IV & zofran & prevacid. Blood tests showed mild elevation of my WBC, but everything else was normal. They said there was no infection. I was told the xrays showed no obstruction, but they thought there was some inflammation & gastritis. (can they tell that from plain xrays?). I was sent home.

I hadn't eaten anything Monday or Tuesday because I was deathly afraid of the pain I experienced when vomiting on Sunday. Tuesday, I had called my GI as instructed by the ER doc. They wanted to see me right away, so I went down there. They did blood work & ordered xrays. My belly is not tender where they pressed, I am having most of my pain right around my belly button, and just above it. I was told it was probably just IBS. When I asked about the lymphocytic colitis, I was told there is nothing in my symptoms to suggest I was have a flare of that. I was told to drink gatorade & work my way to soup then solids as best I can.

They called & told me my labs looked good. I am so confused. How can IBS cause all this? What can I do? Does anyone ever go through a flare without having much show up on your bloodwork?

I am hoping to get my life back. If it's not CD or colitis, then I keep thinking it's something that my be fixable & I want them to figure it out already!!! It's just all so confusing. I want to be able to eat again & not have pain. I don't know what to do....

I have already changed my GIs... I am limited & this GI is a very respected teaching hospital 3 hours away.

I have called them & told them I am still having problems. It wasn't my GI I saw the other day when I was there, but another doctor since my GI was unavailable. I am lost. I don't know how many times I have to bug them... I am just really, really tired of it all...

What your experiencing sounds alot like my flares at times....major major pain that takes me fully out of commission, loss of appetite, vomitting til its just bile and beyond, all that 'good stuff' and yet I always get those same results too. Bloodwork shows fine, urine, everything shows normal. Half the times they never believe I'm having that flare, yet the signs are all right there. Hopefully you can get ahold of your GI or get put on a good course of meds to get things under control....for me cipro/flagyl do good when I'm in that bad of shape, or a course of prednisone and all those that they use to keep flares under control. I also find that yeah, sometimes just doing the liquid thing for a bit and giving the stomach a rest works well too, keep nourished but keep it easy to digest. Hopefully someting works out for you, keep trying for your doc though, bug them til you get what you need!

I finally had a BM! But it was only two small dime size pieces & they were black....

I am eating a little more & no vomiting. I guess that's good. A lot of pain though. Just around my belly button & just above my belly button. It's so confusing. I just want it to go away... Thank God for compazine. It has really helped the nausea. I guess I am optimistic today, but scared that this is never going to end.

My GI seems uninterested & seems to think nothing's up. I see my PCP on Wed. He's the one who thinks I have crohn's. I agree with him, but getting the GI to agree without a biopsy confirming it is next to impossible. No matter my symptoms or ulcers or small bowel follow through results.

My husband has been really great. But I think since we have been dealing with this so long, we are just used to these ups & downs & don't get as concerned. I just can't take the pain & vomiting. I feel like I am at the edge of a cliff...

There is a poorly diagnosed condition that resembles CD as far as symptoms go. Next time you get a colon biopsy, ask them to test it for eosinophiles. For more see: APFED.org

I assume that the previous biopsy was negative for Crohn's. This is one possible cause.

Well, I am hoping my IBD doc will actually take a look at all this. The others I have seen are not my actual doctor... That's all I keep hoping.

Can you still have a partial obstruction that doesn't show up on the xray?

What is fecal loading? Anyone ever heard of that? Is it just constipation?

I surely have appreciated my family doctor. He's so caring & knows what I have went through. He told me on my last appt. that if this was microscopic colitis, it's a really, really, really, really, really bad case of it.

BTW, the bump, or lesion as my IBD doc calls it, has gotten better. She had put me on Flagyl & Azulfidine & the Flagyl didn't do much, but taste horrid, lol, but once I started the Azulfidine, it went nearly away. Can't barely feel it anymore. Once in a while though, it feels like when I sit a certain way, that there is a sliver or something poking me there, but I don't think anything is really there. I wonder if it will come back since they told me to get off it.

I have been drinking & eating again. I drank 3 tall glasses of apple cider hoping that might help get things moving. And stool softeners. No luck yet. I am feeling so bloated after last night's dinner. First real meal since last week. Burping & pain. Ick. I hope something moves soon. I have noticed I have passed gas twice... So that's good right?

I hope the enemas get things going. She wanted me to do 2 each day. I thought you aren't supposed to do enemas that often...?

Ugh.

Have you even had a small bowel follow thru (barium swallow and a series of xrays done)?

Well my personal non medical opinion is, if it walks like a duck, quacks like a duck, its a duck! Hukleberrie, keep advocating for yourself, you are sick and need to get the help you deserve. Any chance you can get your doctor to do a pill cam on you like CrohnieToo suggested. Alot of Crohnies had to do this test before finally getting their diagnosis. Good luck and big hugs sweetie!

ok regarding the biopsies - where in your gut were they taken from? from personal experience I've had colonscopies done & biospies not taken from the terminal ileum & sent home saying your grand & i was not. you may have had the early stages of crohns when they were taken - so if someone was to scope you again it may be a different story. they need to biopsy everywhere in the colon & the terminal ileum - they should be taking a minium of 5. just because things look ok on tests does not mean they are ok - especially if you have symptoms saying otherwise. Have you had a gastroscope done to check your stomach & duodenum -again you need to be biospied everywhere. also you may need a pill cam done - it will show up parts of your small intestine that the scopes cant see - however if you are at risk of an obstruction & your symptoms are suggestive of a possible stricuture/narrowing - this may not be the best test so a ct scan would be another option. you mentioned a barium being done showing inflammation in the lrq - near the caecum - this could possibly be the terminal ileum - a classic site of crohns - if you have inflammation on a barium you defo do not have ibs - blood defo not ibs either - vomiting defo not ibs. elevated white cell count possibly assoicated with crohns as in absess infection - you need to shout & roar until you are heard - not easy i know but recently i was in a situation where i wasn;t being listened to & i had to change gis - now i'm still quite sick but it was the best thing i ever did - i'm much more contented. by the by a good teaching hospital means crap - i went to a gi very well respected - so much so the gi i changed to was in shock over what was going on. - also note tests (x rays etc) can be interpreted differently by diff doctors

I have had 2 c-scopes, 2 EGD. First EGD was clear, second there was an ulcer. First colonoscopy had an ulcer, biopsy showed colitis, second colonoscopy with lots of biopsies done after a few months of prednisone & azulfidine treatment was clean. SBFT said inflammation in area of cecum, possibly ileum, or cecum or bowel loops overlaying the cecum.

This is already my second GI. I am too tired to fight on this. I guess if I get horribly sick then they will have to treat me. I am just kinda afraid of getting sicker...

My husband is coming with me to my appt. I am tired of being a pain for everyone. My mom went with me to my appt. at the IBD clinic but didn't come in with me. She's been too worried... I hate to cause her worry. My brother just died from cancer a year & a half ago. I try my best not to worry her cuz she thinks everything is worse than it is...

I finally had 2 BMs today. Still some black, then followed with okay soft stools. Still lots of abdominal pain around my belly button.

Well. No luck, doctor is of no help at all. I don't think he's looked at my tests or anything. He offered to send me to another doctor & that's it. He said I have a lot of air on the right side & he thinks I have more stool still in there. No help for my headaches, pain or bowel stuff. Just no help whatsoever. All he would say is that I have to make myself go somehow if I don't go for a day. I thought it's bad to use enemas over & over?

I don't know what to do. I can't keep this up. I am going crazy.