Posted 3/3/2008 7:56 PM (GMT -6)
Hello, all. I am new to this forum, but have been posting over on the CD forum. I was told by someone on the CD forum that I should post here, so here I go!
I started to get sick last May. Constant illness, the flu, cold, a kidney infection, pinched nerve, another cold, the flu again, another cold, sinus infection, etc... etc... I started getting pain after the kidney infection–pain in my back/rib/shoulder area & also pelvic/groin pain. At first they thought I had kidney stones after the infection, but after testing discovered that wasn't the case. I started dropping weight left & right. They did test after test with no DX. They did find ovarian cysts, but said they wouldn't cause my pain & problems. An MRI showed "increased signal" in the area of concern where my rib pain was, but could not say why. They did a hemmocult test that came back positive. They questioned my BMs (which was so embarrassing to me since I am so shy about this stuff...) and I told them everything was fine, I was just going more frequently. I had seen blood periodically, but figured it was due to fissures or something since I have always been kinda constipated with small, hard, round stools. Since I started dropping weight, I was going 1-2 times a day instead of 2 times a WEEK. I thought this was a good thing, if any of y'all have ever been stopped up, you know what I mean. It wasn't diarrhea at this time. So I had a rush colonoscopy because they were thinking cancer (my brother was just dx'd a couple months before with pancreatic cancer, he has since passed on), but it came back as "colitis". I was told it was NOT the ulcerative kind, though, and that after taking azulfidine for a month it would go away. After the month was up, I began losing weight quickly again. My brother was so ill, I didn't want to even take notice of how sickly I was. There was too much going on to worry about me...
Anyway, I went to see the DO for OMT on that darn rib (I went through physical therapy & the PT said that rib is out of place, no one can get it back in...) & he couldn't believe my weight. He told me he thought I had IBD (he thought CD) & that I should see a GI. I told him that I was going to (I had an appt. with my PCP to get a referral, my brother had passed & I was able to focus on my health at this point). I had lost 50 lbs. He put me back on the azulfidine.
Then my pain pills (& other pills) started to go right through me & show up in my stool. I also started having tons of foods that weren't digesting. Horrible gurgling began.
Not long after, I ended up in Urgent Care dehydrated. I had had 10+ BMs (big D) that day. I started having a lot of D. Then a week later I was in the ER dehydrated (even as I was drinking water on the way to the ER?!?) & low potassium with migraine & sinus infection. (Since this all started I have had this fluid in my inner ear (& mastoid sinus I ended up finding out from the CT scan at the ER) without ever getting rid of it.) So I saw my PCP & got the referral & when I saw the GI, she said it was for sure IBD, just that she wasn't sure which one. She requested the info from my surgeon about the colonoscopy/EGD, and sent me for a SBFT.
The small bowel follow through showed that the contrast pooled in an area of the LRQ, either the cecum or ileum, "probably due to an inflammatory process". The GI called to say that there were no strictures, but that they couldn't tell what type of IBD I had still. They said that the first colonoscopy didn't look at the cecum or ileum & didn't take biopsies of either. The biopsies that were taken from the colon showed inflammation with mild crypt distortion, and she said that the "crypt distortion" means IBD. Anyway....
A week after the SBFT, I started having HORRIBLE abd. pain. It spreads all accross my lower belly just below my belly button, all the way around to my lower back & hips. It is incredible pressure & almost feels like the last bit of pregnancy where the baby's head drops down in the pelvis.... I don't know if this is related to the IBD or not...
So, I have had all kinds of test: CT scans (with & without constrast), MRI, IVP, X-rays, Small Bowel Follow Through, Colonoscopy, EGD, Blood tests, Celiac Test, FOBT, Pelvic Ultrasound, etc. etc.
I have had pain, mucus in stool, blood (not much) in my stool, skin tags in & around my anus, high WBC count, low potassium, high total protein, ulcers & inflammation found on the colonoscopy, mild chronic gastritis found on the EGD, migraines, palpitations, 50 lb. weight loss, dizziness (due to ear problems?), weakness, FATIGUE, gurgling belly, lump in my lower right side next to my belly button, excessive belching & excessive sweating, food/pills not digesting, irregular/long/heavy periods, periodic low-grade fevers, etc. etc. I also have this feeling often that I have to go, but nothing comes out. It's annoying. I have also had problems with hypermobile joints & also my SIJ & TMJ, but don't thinks that is related.
I have NOT had a bacteria/parasite test on my stool. This I think is the only thing I have missed. Well, and maybe the lactose test, but I think lactose is fine with me.
I am currently on the low-fiber, low-residue diet. It seems to have helped slow me down a little, I think. I am also now on prednisone & still on azulfidine. I am on darvocet now for pain (Norco would not digest for me), and also on aciphex, nasonex, provera, multivitamins & viactiv.
I would love any insight as to what I should or shouldn't do... Should I have the next colonoscopy so the GI can get a biopsy of the iluem and/or cecum? Someone mentioned a pill cam?
Does this sound like anything anyone else has experienced? How do you get through this diagnosis period? Every time I see a doctor at the ER or ugent care or anywhere, they won't even go down the IBD path, because they want to know if it is CD or UC. They start talking IBS if I tell them the GI isn't sure.... You don't lose 50 lbs with IBS....