DX: IBD... UC or CD??????? Advice greatly appreciated....

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hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 3/3/2008 6:56 PM (GMT -7)   
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....
Live for today, for tomorrow you might just get hit by a semi.

Post Edited (hukleberrie) : 3/4/2008 4:17:31 AM (GMT-7)


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 3/3/2008 8:24 PM (GMT -7)   
Hukleberrie, I'd suggest having the colonoscopy. In order to get proper treatment, it's important to know how much disease you have and where it's located.

There are two things that might help you in the meantime: get yourself on a good probiotic to replace the good bacteria in your colon, and ask the doctor about rectal medications - Rowasa or steroids. Also avoid all NSAIDS - aspirin, ibuprofen, naproxen and anything else in that category of drugs.

And try to follow up with your own doctors instead of going to the emergency room whenever possible. When you go to the ER or urgent care, their job is to get you more comfortable and somewhat stabilized until you can get in to see your own doctor. Their role is not to diagnose and treat, just basically to keep you functioning until you can get to the office. Therefore, the treatments they do may or may not be appropriate for more than a few days.

I hope you get at least some of your questions answered when you see the GI.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 3/3/2008 8:31 PM (GMT -7)   
As soon as I read you have issues with skin tags in and around your anus that tells me crohns, not UC, there is no anal involvement with skin tags and UC only with CD, they are reffered to as perianal crohns skin tags and I have them too, infact that is how my CD first manifested itself, not internally but instead with these skin tags which were mistaken as hemmies (but that's another story, just don't get surgery done on those skin tags, you'll regret it).

I say it's crohns, quite obvious with the skin tag issues and because you also mentioned this;

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".

With UC, there is never any small intestinal involvement...UC is limited to the colon and rectom, CD can affect any part of the GI tract from mouth to anus and more than one area at a time as well.

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


philly-fan
Regular Member


Date Joined Dec 2006
Total Posts : 185
   Posted 3/3/2008 8:31 PM (GMT -7)   

I don't have much advide for you, but I want you to know I am praying for you. I burried my bro one year ago (February) and I feel your pain in that department. As for which diagnose, I know sometimes it can't be nailed down. They do not know whether I have UC or Crohns. I have had numerous tests. They lean towards UC at this time but their diagnosis has changed a few times. 

Hang in there!

  


Steve


Asacol 1200mg-3x a day

Probiotic=metagenics ultra flora plus DF

Hydrocortizone when needed

Off the prednesone since September 8th (omg)


Heart meds

Lipitor,Toprol, aspirin 81

synthroid


lynne95
New Member


Date Joined Feb 2008
Total Posts : 8
   Posted 3/3/2008 10:23 PM (GMT -7)   
Hi, I have Endometriosis and UC. I have been trying to find inforamtion on both ,I thought maybe they were linked. Today I found some articles I think you might be interested in. I am still trying to figure out how to do things on this dang computer so I don't how to provide links. I just type in(Inflammatory Bowel Disease-A Complication of Gyn Disorders) and hit search web. I also have cysts on my Ovaries and intestinal issues. My Obgyn told me that Endo and Cysts would not cause intestinal issues. GI told me in 1999 inflamation
in colon was not bad enough to make me so sick.So what the heck is wrong with me?!!! I hope you get answers.

hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 3/4/2008 4:15 AM (GMT -7)   
I don't see the GI again until after the colonoscopy. She said that the SBFT didn't give definitive due to that it could be a problem in the cecum, which is in the large intestine.

I haven't taken NSAIDs since September when I saw the first surgeon, he told me to NOT take any. I did have to take some a few weeks ago, my PCP told me to, to try to get my period to stop, I only took a few a couple times. So, I am definitely aware of that. BTW, I always try to get with my doctors instead of going to the ER or urgent care. My doctor told me to go the ER when I called her the one time & the time I went to urgent care the doctor's office was closed (this was before I went to the GI). I found out the hard way about how they treat you at both, they don't ever want to intrude or change what the GI is doing, I went to urgent care last weekend due to extreme pain in my hips/groin/lower back/lower abs & it was a waste of time. They did not want to change my meds or anything. Didn't want to step on the GIs toes!! : (

I have a skin tag outside & one just inside. They are not very large & would never be mistaken for 'roids as they are only small.

I have already read the info on gyn disorder & GI issues. Interesting...

What type of probiotics? Any info on this would be greatly appreciated.

The only thing about the colonoscopy is that it isn't until May 1st. That's the soonest I could get in. So by then, maybe the prednisone will heal it up & it won't show anything.

Since I am on prednisone, why do I need rectal meds?
Live for today, for tomorrow you might just get hit by a semi.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 3/4/2008 12:44 PM (GMT -7)   
1. It doesn't matter how small your skin tag(s) are, they're still perianal crohns skin tags.

2. You need rectal meds even if on prednisone because it reaches the rectom (proctitis) and partial colon, when flaring in those areas.

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


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 3/4/2008 1:24 PM (GMT -7)   
Rectal meds treat the inflammation where it starts - in the rectum.

There is another thread on probiotics where several good ones are listed. You may want to look at that. A few that are usually easy to find are: Culturelle and Acidophilus pearls. GNC has a few as well - just be sure to stay away from those with FOS as it causes excess gas!

Prednisone has some wicked side effects from long term use. Best to avoid it when possible.

BTW - Welcome to HealingWell! Glad to have you, sorry you had to find us.
Pan-colitis and GERD diagnosed May 2003
 
Asacol 12 per day,  Azathioprine 75mg, Aciphex, Effexor XR, Forvia and a Probiotic
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
 
Co-Mod for the UC forum
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