Guess I am magically healed?!?

Well, I am not sure if you all are aware of my story, so here goes...

I got really, really sick with a severe kidney infection last June. Then I started having a lot of pain, (and a zillion other symptoms) and I lost a bunch of weight (50 lbs total). They thought kidney stones, but no, no stones. They thought thyroid, nope, tests negative. CT scan, normal. Bone scan, normal. Then, my brother was dx'd with pancreatic cancer, so they started doing all kinds of test. I did the hemoccult test & they found blood in my stool. I never noticed it, but started looking & did see very small amounts once in a while. I was going much more often (2-4 BMs a day compared to 2 per WEEK, but I didn't mention it to my doc because I thought it was a good thing not to be constipated). They rushed me for a colonscopy/EGD. The colonoscopy showed colitis; inflammation & some small ulcers in my colon. I had FAC, but did also have "crypt distortion". The surgeon who did my scope, thought I would clear up (hopefully) after a month or two on Azulfidine. After a month, they took me off it and I began losing more weight. My pain pills began not digesting, but coming out whole & sometimes like sandpaper. They put me back on the azulfidine & my osteo said I probably had crohn's. He was shocked at how thin I was. I was so weak & I was feeling so ill, every time I ate, it hurt. So I was sent to a GI. She immediately said because of the "crypt distortion" I had IBD, she just wasn't sure which one. She wanted to get more info from the surgeon who did my original scopes. In the meantime, she wanted to do a small bowel series. So I had that done & it showed a clumping in the cecum/ileum or the small bowel loops overlying that area. She put me on 20mg of prednisone. I began getting this lump in my belly, just to the right & below my belly button. No one could tell me what it was....

I ended up in the ER/Urgent Care 3 times since January, dehydrated, low potassium, high WBC, with lots of pain. The last time I was in the ER, the doctor told me it for sure sounded like crohn's to him & he looked at my small bowel results.

She still wanted the scope for a dx, so I had that done last week. The scope looked normal, she was really surprised. She took a bunch of really deep biopsies, hoping it would show something. She said if not, I would do the promethsius lab blood test, and if that was negative, she said it might have just been a really bad bacterial infection that was holding on... (but that doesn't sound right to me...)

I got the results of the biopsies today. I don't know EXACTLY what the report said, the nurse was going to read it, but it was pretty close to lunch, so she just said the doctor wrote over it that it was normal. I can taper of the prednisone (Yippee!!!) I didn't get any info about doing the blood test, so I don't know if she still wants to do that or not. I do have a follow up appt with her the 19th of May.

In the meantime, I am confused. First, I just had colitis, then it was IBD, now nothing? Do you lose 50 lbs for nothing? Do you lose 50 lbs with a bacterial infection? If you have a bacterial infection, how do they test for that? What is the treatment? I still am going 2-6 times a day, and that is so unusual for me. I am just wondering if I will ever get back to normal, and what exactly this all means... What does the small bowel series results mean? They said it was IBD as well... Would it show clumping like that if I had a bacterial infection?

Does this mean I am all clear & no IBD? I would love any input....

No, I am not better. Well, a bit better than January when I was so weak I could barely walk.... I do have more energy, but still have mucus in my stool, frequent BMs, pain & low grade fevers, etc. etc. I haven't lost any more weight though since I have been on the prednisone. It has helped my fatigue as well.

My GI is the in the gastro office that has the only GIs around for like 6 or 7 counties, so I am stuck. I do like her, too. But I just don't know what is going on.... My PCP wants me to refer all pain questions & gastro questions to the GI. So, she's the only one I can talk to about this.... I guess I just have to wait to see what happens when I get off the prednisone.....

Well, Hukle, you're not alone. I was having watery diarrhea 20-25 times a day, 50 pound weight loss, high fevers, low potassium, blood and leukocytes in stool, etc. and I supposedly do not have inflammatory bowel disease either. I've been dealing with this rollercoaster for 3 years. There ARE other things that will cause these symptoms, not just inflammatory bowel disease. It could be a million things. My recommendation to you would be to deal with getting your symptoms under control, first and foremost. I know it's frustrating to not have a definitive diagnosis, but right now you just need to deal with the symptoms...time will tell the rest. Hang in there.

Hukle,
Do NOT give in or up on a diagnosis. I went almost 2 years without one. If you have pain and continue to feel sick and lose weight there is something wrong somewhere. In the mean time I would suggest ensure or something to help control the weight you continue to lose.
Don't take "no diagnosis" for a diagnosis. Hang in there, hope it turns around soon.
Lynn

Thank you all for posting. I am curious to see how I do when I get off the prednisone. I think that will tell.

In the meantime, I haven't totally given up on thinking I may have Crohn's. (I am 99% sure it's not UC.) They have tested pretty much everything else. I asked the GI if I should be tested for parasites, and she said she didn't think it was that. But she's thinking it could have been a really bad bacterial infection, and sarita, you mentioned that as well. Anyone know how they test for that? I want to be tested.

There are specific antibiotics that work in the intestines and GI tract. If you haven't been on Xiaxifin or Flagile or another that specifically targets I would think the usual antibiotics for ordinary infections probably would not do the trick.

Hukleberrie,
The thing about parasite infections, specifically, is that they are often very hard to test for. If you haven't traveled outside of the U.S. recently, chances are you do not actually have a parasitic infection. My case is weird because I actually did contract a very bad parasitic infection when I was living in East Africa in 2000 (I was actually studying parasitology in wildlife), so it just makes everyone think that I have a chronic parasitic infection - but I haven't had any parasites isolated since I came back from Africa. Incidentally, I HAVE felt better after rounds of metronidazole (Flagyl) and Cipro. That combo packs quite a punch for parasites. I've been treated at least 7-8 times with that combo and usually have some semblance of relief for a little while.

As far as bacterial infections...well, the best way to test for that is with a stool culture. You'd give a sample and they would literally swab your fecal matter onto a plate with special nutrients designed to encourage bacteria to grow. If something grows and they can isolate it, there's your answer. The other ways to test for bacterial infection are via blood tests, like a complete blood count (CBC). For instance, an elevated white count, like you indicated, might indicate a bacterial infection somewhere in the body, but they can't tell what bacteria is causing that just with a CBC. You should ask your doctor about the following tests: stool culture, fecal leukocytes, ova & parasites. Also make sure that your CBC included a "differential" - this is a breakdown of the components of the white count. Different kinds of infections can sometimes point you in one direction or another - but remember, none of this is ever definitive.

I know it's overwhelming and confusing. Medicine is by no means the "exact science" that many people think it is. It's frustrating for patients - and also for your doctors. I can sympathize with both sides! Let me know if you have more questions.

Huckleberry,

Being sick & confused. But the DX roller coaster often doesn't stop ( those games) for us. I have different types of IBD according to who treats me ( & one who tried to say I didn't). What counts is treatment for your symptoms if it does turn out to be CD or UC..

Sincerely,
Matthew

Sarita- time to follow your own advice! Haven't you been putting off seeing the infectious disease specialist!?!

Hello Hukleberrie,

I definitely recommend an infectious disease Dr. They are trained to diagnose weird stuff never encountered by regular Docs. I've seen one before and so has a friend of mine. I think they have a different view point and are more open minded.

Sarita -- what parasite did you get while in East Africa??

Well, I took my last 5mg of prednisone yesterday. I am happy about that. But last Friday, 2 days after going down to 5mg, I was so sick. I puked & was shaky & exhausted. I slept most of the weekend. I was feeling a bit better & then the D hit. I think maybe I just ate something I shouldn't have (I had hot dogs with onions & corn on the cob). The GI said everything was clear, so I figured I could eat whatever I wanted & was happy to be off that blasted low residue low fiber diet. But I am feeling rough now with D & cramps. I hope it will go away.... I have lost a couple pounds, 5 to be exact. I am sure that's just water weight from coming off the prednisone, right? That's normal?

I see the GI the 19th. I am curious what she will say....

Well, here's the thing. My GI thinks I am healed from the bacterial infection. So I am thinking she won't do a stool test. She thinks I just have IBS from a bacterial infection that healed. I don't get it.

Is it normal to lose weight when getting off prednisone? I am trying to figure out if this weight loss is due to the prednisone or if I still have a problem.....