A very confused update...thoughts?

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imissicecream
Regular Member


Date Joined Oct 2009
Total Posts : 157
   Posted 4/17/2010 11:14 AM (GMT -7)   
Well, I know you guys don't want to read my rambling, but I would like your opinions on my whole situation, so I'm going to start from the beginning.

Starting in October 2008 (soon after I stopped being a vegetarian..which I was for 3 years), I started getting very mild symptoms such as acid reflux, occasional nausea, mild abdominal pain, and diarrhea maybe twice a week..I didn't think too much of it and contributed it to my body starting to readjust to meat.
Then, the day after Christmas in 2008, I got extremely sick with a stomach flu- I was sick for over 3 weeks with SEVERE abdominal pain, diarrhea that woke me up every night for the duration of the sickness, a fever, and nausea. It subsided for awhile, but then started to pick back up again. I thought 'okay, maybe this is a relapse, it shouldn't take too long before I get better.' I let it go until March, when I went to see my family doctor who told me that I was just constipated and the diarrhea was a result of the constipation (WHAT?!). Well, I tried taking fiber every day for nearly a month and it made me much sicker. My abdominal pain sky rocketed.
In May of 2009, I took myself to a gastroenterologist who then scheduled me for a colonoscopy. The colonoscopy showed ulceration and friable mucosa in my terminal ileum. He took biopsies and they came back positive for Crohn's. He also did an IBD serology panel which came back negative. He also did blood work and my SED rate was elevated above 60, my CRP was elevated, and I was anemic. He started me on Pentasa and Entocort. I felt better for a little over a month, I thought I had my answer. My doctor directed me to start tapering my Entocort.

At this point I was about to move to Chicago with my boyfriend for college. The day before we moved, I got extremely sick. My stomach was very distended, I was throwing up, and I HAD to go to the ER for pain medication. It was horrible. I was sent home and moved to Chicago the next day- still very much in pain. I got to Chicago and had intermittent pain and diarrhea until I could see a doctor there at the University of Chicago hospital. When I saw her, I had broken out in a rash (she said was Erythema Nardosum), and my joints were aching every morning. I couldn't eat too much without being in pain, so I had lost over 20 pounds. She prescribed me Imuran...because, obviously, the Pentasa wasn't doing it's job. She hiked my steroid back up to 9 mg. Well...the Imuran made me VERY sick. I was throwing up daily, and for the first time since this started- I actually had bright red blood in my stool. Also, I was very constipated. This doctor thought I might have a stricture and sent me for a CT scan. Everything came back OK, she took me off the Imuran, and put me on Cipro and Flagyl for about a month. I started feeling sooo much better. Once I stopped the antibiotics, I felt worse again.

I couldn't go to college like that, so I finished up the semester and went on medical leave and moved back home. While my family was moving our things back to Ohio, I had another attack like the one before I moved to Chicago. Other than, I hadn't eaten for a couple of days, so I couldn't blame it on that. My stomach distended, my fever went up to 104, and I was in severe pain..also, my joints ached like it was no one's business and I had chills. I had to be hospitalized because I was so dehydrated that I lost 30% of my blood volume...I hadn't even had any D.

I went back to see the doctor who had originally diagnosed me. He said it didn't sound like Crohn's anymore...or at least the mild case of Crohn's that he diagnosed me with. He did some blood work- my SED rate was elevated, as was my CRP, my potassium was low and I was slightly anemic. He did an EGD which came back clean...but he still thought I should start Humira. I was very hesitant because my white blood cells were at a 17..the highest they've ever been. He pushed me to do it, so I caved. Well, it wasn't a pretty situation. I ended up in the ER about 2 hours after my loading dose because I was shaking so much I couldn't walk, I had a horrible headache, my chest was very tight, I felt like I couldn't breathe, and I broke out in a rash. Also, Humira made me so depressed (and yes, I blame it on the drug because I have NEVER been that kind of person, and I'm not) that I ended up in the psych ward on suicide watch. Also, I started having more diarrhea with undigested food and a lot of boody mucus.
After I got out of the psych ward, I started the SCD. I felt minimally better. I was very upset with my doctor for putting me on Humira without any solid evidence and against my true wishes, so I switched to a new GI in the Cleveland Clinic.

The new GI told me that he really thought I didn't have Crohn's disease, and instructed me to stop taking all of my medication (taper the steroid and discontinue Pentasa). He scheduled me for a colonoscopy and an MRE. A couple of weeks after this, I had another attack like the others. When I saw the first signs of pain, I stopped eating and waited until I could go see my PCP. I couldn't drink much either without starting to feel nauseous....again, I was dehydrated even though I didn't have any D at the time. My PCP put me in the hospital again. The day after I got out of the hospital, I needed to get ready for my colonoscopy. I went in for the colonoscopy the next morning and he found nothing...everything was clear. I was frustrated and confused, because even while I was doing my prep, mucus and blood were coming out. I still had to wait for the MRE, and during that time period (about 3 weeks), I could hardly eat. Every time I ate somthing, I threw it up and my abdominal pain was worse yet again. My PCP hospitalized me AGAIN. He decided to run a bunch of tests while I was in there including a CT Entography, gallbladder tests, a Gastric stomach emptying test and several x-rays. Everything came back normal, other than the wall of my gallbladder is thickened. I was let go.

Now, last Monday, I saw my GI in Cleveland again. I was severely dehydrated yet again, and he hospitalized me but told me that he wasn't going to be able to find me answers within the week...but he was almost positive that I don't have Crohn's. While I was in the hospital, I got another EGD (biopsies showed nondescript inflammation at the end of my small intestine), an MRE (showed nothing), and a stool test. Come to find out I have C diff (which I was tested for in February and came back negative) which had to be from my last hospital stay, and I'm lactose intolerant (could have told you that). The doctors put me on antibiotics and told me to follow a lactose and gluten free diet...I told them I was on the SCD already, but they didn't seen to think I was following it (I am VERY strict about my diet. Hello, I was a vegetarian for 3 years!). They're testing me for Lyme Disease but don't really seem to think it's that.

Sigh. I'm frustrated and confused. Help? Opinions?
18 year old female
Crohn's dx in May 2009, symptoms since October 2008
Currently taking: Entocort 6mg
Off nearly all meds so the doctor can re-evaluate my diagnosis. Ugh.


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 4/17/2010 12:29 PM (GMT -7)   
Sounds like you've been through the wringer! I hope you're feeling better now that you are back on antibiotics. C-diff would certainly explain the diarrhea and mucous. If c-diff is positive, it must be treated - the usual treatment is flagyl or vancomycin for 2 weeks. However, this does not mean that you are free of c-diff . . . you could suffer a relapse, because c-diff is a very hardy spore forming bacteria. The spores can even live outside the body for 6 months or more! And because the antibiotics can only kill the live bacteria and not the spores, the spores can hang out in your intestine, and weeks or months later become live bacteria, and can become a bad c-diff infection again.

It sounds to me like when they first put you on antibiotics (Cipro & Flagyl), it probably resolved an active c-diff infection, allowing you to feel better. Once you stopped the antibiotics, it sounds like you suffered a relapse. The relapse rate for c-diff infections is between 20-25%, so it is quite common.

It surprises me however, that your colon showed no signs of disease - c-diff usually results in pseudo membranous colitis, which they should have been able to find with some biopsies. I know you've been in and out of the hospital, and c-diff is usually a hospital or community acquired infection, unless you are taking some antibiotics that can upset the flora in the gut and cause problems. My husband has crohn's, and he got a c-diff infection (and has struggled with it since) without ever taking any antibiotics, or being in the hospital. This is because people with IBD are more susceptible to c-diff.

To me, it sounds like you also have something else going on in addition to the c-diff. You should start feeling better with the c-diff infection under control. And hopefully you'll at least be back on your feet and able to live your life reasonably well until they can find out if there's something else going on. What makes me suspicious is the skin rash, which is one of the possible complications of crohn's disease.

Here's what we have to do for my hubby - we never know if it is c-diff, or crohn's or stomach flu causing his symptoms. So, if he is starting to feel bad, he immediately gets a stool test to test for c-diff. So, anytime you start feeling bad, test for c-diff, until you have at least 3 negative stool tests. I've read that 3 negative stool tests, and you can confirm that you don't have an active c-diff infection, and start looking into other causes.

I don't really have any other suggestions for you. Hugs honey. I hope you get a good diagnosis and a course of treatment that puts you on the road to recovery soon.

(((Hugs)))
PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Crohn's in Remission since June 2008
C-diff recurrence Sep 2009
Reactive Arthritis Nov 2009
Currently c-diff free
Osteopenia of spine (Mar 2010)
Canasa (1gm), Lialda (4.8 gms), Remicade (8 weeks)
Currently In Remission


imissicecream
Regular Member


Date Joined Oct 2009
Total Posts : 157
   Posted 4/17/2010 12:47 PM (GMT -7)   
Thank you so much. One thing that I'm confused about it the biopsies from my first colonoscopy. They said that they were 99% positive that I had Crohn's based on the biopsies...but now, I guess I don't have Crohn's after all? Or maybe I did have Crohn's and now it's in remission? Possibly. I hear that a lot of people still have symptoms even though they're in clinical remission.
18 year old female
Crohn's dx in May 2009, symptoms since October 2008
Currently taking: Entocort 6mg
Off nearly all meds so the doctor can re-evaluate my diagnosis. Ugh.


mom-who-hurts
Regular Member


Date Joined Mar 2010
Total Posts : 28
   Posted 4/17/2010 4:05 PM (GMT -7)   
This all sounds sooo confusing and beyond frustrating.  I am so sorry.  I am not diagnosed yet, so I am far from being an expert, but ever since the doc said "i think you have Crohn's" I have been in research mode.  I thought Crohn's cannot be cured.  Once you have it, you always have it...?  So if they found it on that first colonoscopy, I would think that is what you are still dealing with, but maybe not in the same area they originally found it...?  Has your entire GI track been checked from mouth to bottom?  (like the middle of the small bowel where scopes cannot reach...?)  Maybe they should do a pill-camera test...
 
Like I said, I am far from knowing much about these things, but based on research, it sounds to me like you have IBD, and they just haven't found it recently.  But the fact you had it should secure their confidence in that diagnosis...shouldn't it?  (unless Crohn's can now be cured...?)  Ugh...I'd be sooooooooooo frustrated.  Hang in there, and keep us posted.  I have been following your posts a lot this last week, and really feel for ya.

imissicecream
Regular Member


Date Joined Oct 2009
Total Posts : 157
   Posted 4/17/2010 4:42 PM (GMT -7)   
Evidently, the endoscopy that I had went all the way through to my ileum, and I've had a colonoscopy before. I didn't know endoscopies could go down that far...but I guess it can. Thank you for your support. I am very frustrated, and some doctors keep telling me that it's IBS...I have a really hard time believing that, but I guess it might be. My gastro has NEVER said that to me and he's really well known. I have an appointment with him on the 26th. I can't wait to hear what he has to say about the other doctors telling me it's just lactose intolerance.
18 year old female
Crohn's dx in May 2009, symptoms since October 2008
Currently taking: Entocort 6mg
Off nearly all meds so the doctor can re-evaluate my diagnosis. Ugh.


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 4/17/2010 5:40 PM (GMT -7)   
If the biopsies previously showed inflammation consistent with Crohn's disease, you most likely have Crohn's disease. From my husband's experience, and from what I've read, it is not uncommon for a person with IBD to get a c-diff infection, because just having Crohn's can impact the flora in the colon. So, really, it sounds like you need to ask for your medical records, and see what the biopsies show. If the biopsies show inflammation consistent with crohn's, I would assume that it means you have both Crohn's and a c-diff infection. If the biopsies are iffy, then, you have more digging to do.

Hope you get some answers soon.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Crohn's in Remission since June 2008
C-diff recurrence Sep 2009
Reactive Arthritis Nov 2009
Currently c-diff free
Osteopenia of spine (Mar 2010)
Canasa (1gm), Lialda (4.8 gms), Remicade (8 weeks)
Currently In Remission


imissicecream
Regular Member


Date Joined Oct 2009
Total Posts : 157
   Posted 4/17/2010 7:51 PM (GMT -7)   
I have all of my records. The report says 'Biopsies consistent with IBD. Architectural distortion and inflammation found.' or something to that same effect. They took the positive biopsies out of my TI, so it's almost 100% sure Crohn's.
I just don't know why...if it was such a mild case...that none of the medications made me feel better. Only worse. And now, I'm being told I don't have Crohn's? Could it possibly be in a different layer of my intestines than the part that they scrape to biopsy?
18 year old female
Crohn's dx in May 2009, symptoms since October 2008
Currently taking: Entocort 6mg
Off nearly all meds so the doctor can re-evaluate my diagnosis. Ugh.


imissicecream
Regular Member


Date Joined Oct 2009
Total Posts : 157
   Posted 4/17/2010 7:52 PM (GMT -7)   
Oh, and I don't doubt that I have c-diff, but I don't think it's been the problem this whole time.
18 year old female
Crohn's dx in May 2009, symptoms since October 2008
Currently taking: Entocort 6mg
Off nearly all meds so the doctor can re-evaluate my diagnosis. Ugh.


Blossom
Regular Member


Date Joined Mar 2008
Total Posts : 176
   Posted 4/25/2010 1:25 PM (GMT -7)   
Forgive me if you already mentioned this, but like someone else here stated, I wonder if your ENTIRE small intestine has been checked. Typically, the EGD only checks down to the duodenum (1st part of small intestine). The colonoscopy can only check into the first part of the terminal ileum (the last part of the small intestine). However, there is a LOT of small intestine between the duodenum and terminal ileum.

I'm not an expert on what type of test(s) are best for checking the entire small intestine, but I do know that to determine if there's stricturing, a small bowel follow-thru (where you drink the barium and they x-ray the small intestines) is one type of test. Another is the pill-cam, but that can be risky as it can get stuck in the small intestine if there's stricturing--NO THANKS!

Hope this helps some!! I certainly feel your frustration and pain!
54 year old female;
 
Have had Crohn's of terminal ileum for 10 years.   Small bowel resection (my first) on 7-30-09.  Monthly B12 shots.
 
On Humira since Dec. 2008.  Allergic/hypersensitivity to Pentasa, Entocort, and 6-MP.  


imissicecream
Regular Member


Date Joined Oct 2009
Total Posts : 157
   Posted 4/25/2010 3:33 PM (GMT -7)   
Yes, my entire small intestine was checked with my last EGD, they pulled biopsies from my terminal ileum with it which showed nondescript inflammation. I have an appointment with my gastro tomorrow to see what else he wants to do. I'll keep everyone posted.
18 year old female
Crohn's dx in May 2009, symptoms since October 2008
Currently taking: Entocort 6mg
Off nearly all meds so the doctor can re-evaluate my diagnosis. Ugh.


MToronto2
Regular Member


Date Joined Apr 2010
Total Posts : 232
   Posted 4/25/2010 6:27 PM (GMT -7)   
This is the bit that sticks out from my reading: when you wrote: on Cipro and Flagyl for about a month. I started feeling sooo much better.

I'd be asking for an infectious disease specialist.... Ulceration can be caused by other things.

Hope you get this sorted out soon!
CD 24 years. Multiple surgeries in past 10 yrs. 4 year Illeostomy. Mesh rejection. Too close to death, twice. Large inscisional hernia. Perpetually underweight. Short bowel syndrom. Have used a variety of complementary medical therapies. Highly recommend Bowen Therapy as the best body work. Take me vites. Started Low Dose Naltrexone March 27, 2010. Got married for the only time 2008. Survive because of the love of good friends, and because I can. Happy to be alive. IBD needs more awareness and more voices willing to speak up. BE well.

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