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hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 4/18/2008 1:02 PM (GMT -7)   
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....
Live for today, for tomorrow you might just get hit by a semi.


Matthew
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Date Joined Oct 2004
Total Posts : 3932
   Posted 4/18/2008 1:24 PM (GMT -7)   
Well,
Are you feeling better? If not it's past time to find a new doctor/or medical team. Don't wait if the answer is NO. You are too important for those tired old games.
Please think it through & then act on my advice. I rarely give advice except when I see a situation that disturbs me. That is you.

Sincerely,
Matthew

hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 4/18/2008 1:33 PM (GMT -7)   
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.....
Live for today, for tomorrow you might just get hit by a semi.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 4/18/2008 1:52 PM (GMT -7)   
Colitis is a form of IBD, either crohns colitis or ulcerative colitis...and typically dramatic (or any) weight loss is due to bathroom frequency.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


Sarita
Veteran Member


Date Joined Mar 2005
Total Posts : 2486
   Posted 4/18/2008 2:48 PM (GMT -7)   
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.
Co-moderator - IBS Forum

Please always remember to consult your medical professional regarding your medical questions; this forum is intended to provide patient-to-patient support. Although some of us have healthcare backgrounds, we cannot diagnose or treat patients on the board.


Sarita
Veteran Member


Date Joined Mar 2005
Total Posts : 2486
   Posted 4/18/2008 2:50 PM (GMT -7)   
P.S. You might want to consider an infectious disease consult. Various parasitic infections, bacterial infections, immune deficiencies, other rarer gastrointestinal disorders could be the culprit...
Co-moderator - IBS Forum

Please always remember to consult your medical professional regarding your medical questions; this forum is intended to provide patient-to-patient support. Although some of us have healthcare backgrounds, we cannot diagnose or treat patients on the board.


Lynn
Regular Member


Date Joined Jan 2003
Total Posts : 492
   Posted 4/18/2008 3:25 PM (GMT -7)   
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
Dx'd with crohn's 1983, resections 83,85 and 89 Double Strictureplasty 2005, Dx'd COPD 2000, Psoriasis 2002 and Fibromyalgia 2005.
Currently takeing Humira, Pentasa, Lomotil, Elavil, Sinemet, Skelaxin, Advair, Abuterol, Oxycodone and Xanax as needed


Mellie
Regular Member


Date Joined Mar 2008
Total Posts : 110
   Posted 4/18/2008 4:12 PM (GMT -7)   
Well.... I am on the fence with a combination of Crohns & Colitis...I have bits of both but don't fit the profile of either exclusively. Take care of yourself and keep asking questions!
Diagnosed with Crohns/Colitis in 2004. Currently taking Azulfidine 500 mg/3 x 3 day, Synthroid. Have had joint complications such as pyroderma gangrenosum in ankles as complication of IBD.


hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 4/18/2008 4:20 PM (GMT -7)   
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.
Live for today, for tomorrow you might just get hit by a semi.


hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 4/18/2008 4:57 PM (GMT -7)   
Lynn~ I have used ensure before the prednisone to help keep my weight up. I still have some in case I start to lose again....

Matthew~ Is it that I disturb you or my situation? What are the "tired old games"?

I am just so confused. I don't know what tests to ask for next to figure out what IS wrong. I want to rule out the bacterial infection thing. If I have been on antibiotics a few times, would that have fixed it?
Live for today, for tomorrow you might just get hit by a semi.


Lynn
Regular Member


Date Joined Jan 2003
Total Posts : 492
   Posted 4/18/2008 5:49 PM (GMT -7)   
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.
Dx'd with crohn's 1983, resections 83,85 and 89 Double Strictureplasty 2005, Dx'd COPD 2000, Psoriasis 2002 and Fibromyalgia 2005.
Currently takeing Humira, Pentasa, Lomotil, Elavil, Sinemet, Skelaxin, Advair, Abuterol, Oxycodone and Xanax as needed


dragonfly137927
Veteran Member


Date Joined Sep 2006
Total Posts : 2527
   Posted 4/18/2008 10:04 PM (GMT -7)   
in order to test for parasites you collect a stool sample (which is to be collected in a bedpan,comode, or like my home collection mmethod a disposable aluminum pan I was able to fit iin my toilet under the seat....i put a cat pan liner in it too...makes cleaning up easier). A lab form gets filled out they give you the appropriate container(s). for parasite testing the containers willhave formalin in them & instructions should be with the containers. To test for C-diff the sample is placed in a sterile empty container (like a urine cup) then return to lab the closest to collection as you can. make note of time of collection they need that info
Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987
 
 
 


Sarita
Veteran Member


Date Joined Mar 2005
Total Posts : 2486
   Posted 4/18/2008 11:06 PM (GMT -7)   
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.
Co-moderator - IBS Forum

Please always remember to consult your medical professional regarding your medical questions; this forum is intended to provide patient-to-patient support. Although some of us have healthcare backgrounds, we cannot diagnose or treat patients on the board.


hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 4/19/2008 3:52 AM (GMT -7)   
I was on Cipro for 3 weeks for my kidney infection. I thought they gave me flagyl in urgent care once in my IV, but maybe I am wrong about that.... I also was on zithromax & levaquin & I know something else, but I can't remember right now...

I have not been out of the country...

They tested me for h.plylori at my 1st scopes & it was negative. I don't believe I have ever had my stool tested (except for blood). I asked for it when I first saw the GI & she said it wasn't necessary, she thought IBD.

The GI said the WBC was elevated due to IBD. My PCP said it was because I had just got off prednisone (I had been on it 3 times now – twice were quick burst/tapers). They did pathology of my WBC even. Mild luekocytosis.

I have had tons of CBC, with differentials.

I guess I am going to ask for a stool test AGAIN.
Live for today, for tomorrow you might just get hit by a semi.


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 4/19/2008 8:08 AM (GMT -7)   
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

hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 4/19/2008 10:03 AM (GMT -7)   
Well, currently I think I am just going to go ahead & see what happens when I get off the meds. I think that will be a good indicator. I also am going to ask about the stool testing as well.
Live for today, for tomorrow you might just get hit by a semi.


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 4/19/2008 11:42 AM (GMT -7)   
Sarita- time to follow your own advice! Haven't you been putting off seeing the infectious disease specialist!?!
26 Year old married female law student.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid.  For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn.  I also have bad acid reflux and have been on PPI's since age 13.  I have been through prilosec, prevacid, and nexium.  Currently I am on Protonix in the morning and Zantac at night.  I alos take a birth control pill to allow some fun in my life.
 
 


Sarita
Veteran Member


Date Joined Mar 2005
Total Posts : 2486
   Posted 4/20/2008 2:23 AM (GMT -7)   
Fitzy, yeah, kinda...I had an ID consult at Mayo back in 2005 and he was kind of clueless. They look for things like eosinophilia (elevation of a certain type of white blood cell that is common in parasitic infections), which was normal; never were able to isolate anything from my stool cultures or O&Ps. So I'm just like...ugh...not sure if I want to go through that again. I was doing better a while on that VSL#3 but yesterday had one of those 10+ days, which was kind of aggravating. Baby steps, they say. The good news is that my kidney function is holding steady at stage 2 (on a scale from 0-5) so it doesn't need to be treated yet. Yippee kay-yay!
Co-moderator - IBS Forum

Please always remember to consult your medical professional regarding your medical questions; this forum is intended to provide patient-to-patient support. Although some of us have healthcare backgrounds, we cannot diagnose or treat patients on the board.


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 4/20/2008 5:14 AM (GMT -7)   
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??

hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 4/23/2008 4:24 PM (GMT -7)   
Well, I am just tired of the poking & proding. I am just going to get off the meds & see what happens. "Medication holiday" my GI called it. If the colitis in the colon was gone, maybe the prednisone helped. If I get off it, I will know I am still sick if I lose weight or get D or become really ill or something. I see the GI the 19th of May & she said that was a perfect time because I will be just off prednisone. I am ready to know. I am kinda glad this colonoscopy was clear because if it is IBD than it will show it's ugly head & we will know exactly what we are dealing with. If it does NOT "come back" where I am super sick like in December & January, dropping weight like crazy & so exhausted & dehydrated all the time, then the GI says it's just IBS from an infection (I guess that can happen). But, if I am sick again, then I KNOW it's CD and I will finally have a dx.

You can guarantee that if I am still having mucus & frequent BMs, that I will push for another small bowel series to make sure that what they caught before isn't still there "in the small bowel loops overlaying the cecum or ileum". (That was a possiblitiy, but he THOUGHT it was in the cecum or ileum.)

I am not healed, I don't feel it, and I still kinda think it's CD. But, I HOPE it's IBS. And I am tired of this game, so I just want to know. I will post as I taper. I go down to 10mg tomorrow.
Live for today, for tomorrow you might just get hit by a semi.


hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 5/6/2008 3:40 AM (GMT -7)   
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....
Live for today, for tomorrow you might just get hit by a semi.


gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4096
   Posted 5/6/2008 7:16 AM (GMT -7)   
Wow, hot dogs and corn on the cob...you are very brave! I'm sorry you are so sick and frustrated! I have had positive biopsies for Crohn's, but also was positive for Salmonella...make sure they test for that with the stool tests. You'd think Salmonella would be an automatic test with stool studies, but the first time around they only tested for C-difficile and missed it. Cipro helped me. Hope you figure this out soon!
49 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007. Also have IBS, and had Salmonella Dec. '07
currently taking Pentasa- 8 250mg pills per day, Cipro 1 week/month, Metamucil, probiotics


hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 5/6/2008 12:57 PM (GMT -7)   
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.....
Live for today, for tomorrow you might just get hit by a semi.

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