Crohn's or Ulcerative Colitis or something else PLEASE HELP!!!!!

[JenniferLR7419]

I just returned home from hospital after my 4th admission in 3 mos.  It all started when one day I was having severe lower abdominal pain and started having diarrhea which then led to me have pools of blood from my rectum.  I went to ER they said that the CAT showed that my intestines were inflammed as well as my rectal wall and I was losing some blood internally.  They diagnosed me with C. Diff. Colitis and sent me home w/Flagyl well 3 mos. later and I still have occassional bleeding, abdomin pain, and joint pain w/low grade fevers, fatigue, and just in general feeling like I am getting a flu its horrible and it happens at least 3 times weekly.  I was just released from hospital yesterday after a colonscopy which was negative except for internal hemorriods but that was it I still have many tests out right now that are pending.  But after first the specialist was convinced I had Crohn's Disease until the colonscopy which looked good but I am still sick!!  Any guesses as to what this could be??  I do not know anymore now than I did 3 mos. ago. HELP!!  I have a f/u w/my PCP but not until Monday!

[Herten33]

I suffered from c. diff for 4+ months in fall of 2007.  After three rounds of flagyl they finally put me on a 28 day round of flagyl + Vancomycin which actually did the trick.  I really know your pain and it feels like it is never ending.  The problem with c. diff is that it is the anti-biotics that cause it to begin with, but you need anti-biotics to cure to it even though they can cause it to re-occur all over again.  I would suggest taking a pro-biotic (the best are the ones that require refridgeration) to build up the flora in your intestines as well as talking to your doctor about Vancomycin.  Dr. usually hesitate to give this out as it is pretty strong and if they over prescribe it c. diff will eventually grow resistant to it just like it has grown resistant to other antibiotics.  I know it seems impossible for c. diff to still be the problem, but you would be surprised at how subborn this bacteria can be.  Good luck!

[OnTheNod]

I thought I had problems geez I feel sorry for you I hope they find out whats going on and the Doctors can help you. I hate being stuffed around, why they can't find the source of your problems and fix it or at least treat it bothers me.

I know it probably doesn't mean much but I hope you feel better soon, all the best.

[michell221]

Ask your primary to do 3 c diff tests. You may very well still have this and they need to take more than one test.

[JenniferLR7419]

I went to see my PCP today and I am even more confused now then I was before.  My PCP has no idea whats going she said that believes its colitis but the colonscopy was negative so she isn't sure unless she said its higher up in my stomach in which case I should get an endoscopy???  WHAT THE HELL IS SHE TALKING ABOUT??!!  Then my GI doc called because I got on them and they said I have IBS w/a spastic stomach and I asked him if that would explain the low grade fevers, weight loss, flu like symptoms including joint pain as well as the elevated C-Reactive Protein and he said "you know that is what is puzzling to me because IBS wouldn't explain these things I don't your a mystery right now" and then proceeded to tell me to have another f/u visit a different GI specialist in a few weeks!!!!!  I am so frustrated I could cry!!

[michell221]

C diff is known for false negatives.  Insist on 3 stool samples done 3 days in a row.  Make sure you take it directly to the hospital when you collect it.  If you cannot go right away freeze it until you can.  The toxins degrade rapidly at room temp.   Many people need repeated rounds of flagyl 500mg 3 x a day or more.  If flagyl does not cure it vancocin tablets are prescribed. It still can linger in some and they have to take long doses of vancocin and be gradually tapered off to keep killing the remaining spores that are activated on the off days during the taper.   A lot of people find probiotics help them also with the symptoms and help to get rid of the Cdiff.  Some good ones to try are florastor culturelle and align.  I would take a couple a day.  Maybe a florastor in the am and culturelle at  night.  You would still need the antibiotics.  Never take pain meds or anything like immodium etc with c diff. It can cause deadly toxic megacolon.    Most people are left with ibs after c diff and this can linger a long time.  I would insist on the 3 stool samples to be sure you are truly over the cdiff.  There is a great support group online if you google c diff support group.    I would also get tested for bacteria as well since you can have c diff and bacteria issues at the same time.

Also you need to clean and bleach your bathroom with bleach to kill c diff spores and to keep from reinfecting yourself.  This is the only thing that kills them. They can live on surfaces for months.  Most people keep a spray bottle with 10 water 1 bleach.   Spray down everything after using the bathroom and keep the lid closed when flushing.   Wash your hands with regular soap and warm water scrubbing well many times a day.  The scrubbing is the only thing to get the spores off of hands since regular soap and cleansers do not kill the spores.   It is also recommended to wash all clothes and bed linens in bleach as well and seperate from the rest of the familys wash.

[JenniferLR7419]

So I just heard back from my nurse and she said all results looked good which is good but leaves me with more questions than answers.  I am seeing my doc tomorrow.  But I am so baffled at this point if all labs were negative why was my WBC elevated and why did I have rectal bleeding and why do I continue to have awful flu like symptoms almost daily??!!!  My head is spinning!

[JenniferLR7419]

okay so i finally get my doc's office to call me back only to have them tell me that the covering physician wants my doctor to discuss this matter with me especially as i am seeing her tomorrow.  but it *** me off that i can't get my results so i don't have to obsess on this anymore.  and now i am more concerned because i have never been told to wait for my pcp to give me results i have always been told over the phone when i have asked never a problem so why wouldn't they tell me this time????  errrrrrrrrr!

[crambone]

sounds more like you have in infection causing this issue!,,,,
you could have picked up a bacterial infection or a parasite there not looking for?
i know this all sounds crazy,but i bet something like this instead of the obvious reasons.

[JenniferLR7419]

Why would my WBC be elevated too?

[JenniferLR7419]

Oh yeah they told me my white blood cell count was elevated too.

[JenniferLR7419]

Thank you Myown I really appreciate it.  I hate waiting for results........errrrrrrr!

[JenniferLR7419]

You know I am not so sure if it went away and neither are the docs. because they are doing a repeat stool sample for c.diff.  When I went to the ER 3 mos. back I was positive for C. Diff. but the hospital failed to inform me it was my pcp who 2 mos. later saw it and put me on Flagyl which I just finished 3 days ago.

[Myown]

I forgot to say,so maybe if this was "reactivated" after you got rid of it the last time??? IF in fact it ever did go away? I dunno, but tomorrow hopefully your doctor will have answers..

[Myown]

i just looked up Hematochezia. (And CRP I believe is a test for inflammation)..

Hematochezia seems to be the term they use for bloody stools.
But after reading about the C. Diff Colitius, IMO it sound like you still have that..

Read thru this:   http://www.medicinenet.com/clostridium_difficile_colitis/article.htm

here's an excerpt:

"How does C. difficile cause colitis?

C. difficile spores lie dormant inside the colon until a person takes an antibiotic. The antibiotic disrupts the other bacteria that normally are living in the colon and preventing C. difficile from transforming into its active, disease causing bacterial form. As a result, C. difficile transforms into its infectious form and then produces toxins (chemicals) that inflame and damage the colon. The inflammation results in an influx of white blood cells to the colon. The severity of the colitis can vary. In the more severe cases, the toxins kill the tissue of the inner lining of the colon, and the tissue falls off. The tissue that falls off is mixed with white blood cells (pus) and gives the appearance of a white, membranous patch covering the inner lining of the colon. This severe form of C. difficile colitis is called pseudomembranous colitis because the patches appear like membranes, but they are not true membranes."

Hope you feel better soon,
MO

[JenniferLR7419]

I just read my discharge papers and it states as a diagnosis the following:

hematochezia

eleveated CRP.



What does that mean????

[Myown]

Also if its crohns,,,check out www.lowdosenaltrexone.org
the study for crohns has been completed - excellent results and they have pics posted.
read as much as you can about LDN..and show your doctor the study. many doctors are unaware of LDN and  some docs just don't want to know..

[Myown]

Sorry to hear this. I don't know what it could be. But maybe if you post your lab results - blood work, CBC, AST, ALT etc. Maybe someone would be able to guess. Abdominal pain, flu like symptoms, joint ache - maybe you should get checked for hepatitus C..not saying you have it, but some people get those symptoms that you mentioned...take a look at your liver enzymes, if they are elevated at all, you can always ask questions in the hepc forum...and again,,,I don't want to scare you...there is no way of knowing if you have hep unless you are tested for it, so, I am just giving telling you so that the doctor can rule that out...

I hope you find out what the problem is.. I know how you feel, believe me. Its a pain in the neck when doctors can't give you answers..
Good luck,
MO

[JenniferLR7419]

Someone?  Anyone?