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No Diagnosis -Crohns?

Omaklackey

Omaklackey

no Diagnosis -Crohns?

Hi,
I see you have a "undiagnosed thread" so I'm not alone. I have been reading lots of your stories and researching for a year. I have had one colonoscopy, one sigmoidoscopy and Endoscopy, Barium xray with small bowel follow through but without the UGI, and only a few blood tests because I can't get anyone to listen to my symptoms and everything come back negative. The endoscopy did show massive ulceration in the esophagus, stomach and duadonum as well as a DX of "gastritis" and hiatal hernia, but the surgeon was convinced the ulceration was due to the NSAIDs I was on due to the endometriosis. I haven't taken NSAIDs since but the pain has never changed and three weeks ago got significantly worse when my PCP told me to go off my H2 med because she thought to many tummy meds was causing overproduction of bile. I get fever, chills and shaky when I have to go BM which is all the freakin' time. I have blood in my stools constantly, nausea but no vomitting because I self medicate with Mecclizine and overall constant pain in my epigastric and middle back. I have seen two GI docs neither of whom have been very helpful.

The first one didn't even do a biopsy during the colonoscopy. The second one, my current one, is a pill doctor. He always has one more pill to try. I have tried three kinds of 'oprazole type PPI drugs, Bentyl, a H2 blocker and just got put on Sucrafate. I have stage IV Endometriosis which is on my bowels and may be causing some of the issues. I have also found multiple studies on small bowel endometriosis mimicing Crohns issues. I have had a total hysterectomy with Bilateral salpingo (removal of ovaries) to help with the endometriosis and I had gallbladder removal as well due to a large stone. My weight is the constant fight I have with my doctor. He says that I can't have Crohns because I'm overweight? I also have a horribly distended tuumy which cause significant discomfort and pain, as well as I fight these scratchy throat issues that make it hard to swallow. I just need some reassurance to keep looking for answers. My PCP wont' even talk about getting a new GI doctor and I want to find one with Crohn's experience anyways. I have to get a new PCP because she only wants to give me Narcotics and I refuse to take them so it made her angry. (they make me very sick, nausea and vomitting) When do I give up and live with this and when do I keep trying to find an answer???
 
Cat-a-Tonic

Cat-a-Tonic

Super Moderator
Hi Omaklackey and welcome to the forum. You are correct, we have an Undiagnosed Club (in the "Support" part of the forum) and there are quite a few of us on here who are undiagnosed, myself included. You're not alone! Don't give up looking for answers, you know your body better than anyone and you know that something isn't right. It sounds like you're on the right path, getting some new doctors would be a good step as it sounds like your current docs aren't very good, especially if your primary care doc won't even refer you to a new GI! Don't give up, you know you can't live like this forever, you need some appropriate treatment, answers, and relief. Best of luck and hope you stick around the forum!
 
David

David

Co-Founder
Location
Naples, Florida
Goodness, you poor thing :( I'm so sorry you're going through so much. I know all too well how frustrating it can be to not be properly diagnosed.

Regarding the doctor who said you don't have Crohn's BECAUSE you're overweight, ditch him. Yesterday. This forum has plenty of people who are overweight and have formal diagnoses of Crohn's Disease. Everyone seems to be affected a little differently.

I'm glad you decided to join and share your story. We're here for you any time and I hope that you choose to stick around. If there's anything we can do for you, just holler :)

*hugs*
 
xJillx

xJillx

Your Story Forum Monitor
David is right - get rid of that doctor! And I can't believe they didn't take biopsies! Crazy!

Listen, you don't pass blood for no reason. Obviously, something is going on. You need to find a good doctor who will not rest until he figures out what is causing you to be ill. Please don't put this on the back burner. Be aggressive in finding a new doctor and don't let anyone brush you off!
 
netnetroberts

netnetroberts

hmmmm.... omaklackey, we have a lot of symptoms in common.. i too had a complete hysterectomy due to endometriosis they took the ovaries and all.. i never thought about that affecting my bowels.. i also cannot take narcotics as they slow my stomach and make me sick.. i have been diagnosed so far with gastroperisis.. my stomach is broken.. but i am convinced there is more wrong and am hoping for more testing to come.. lastly, i just ditched my gi dr who was unbelievably unprofessional and am getting a new referral to the gi dept at the university of pennsylvania in philly, pa.. don't take no for an answer.. when one door closes.. open the next one.. there are good dr's out there.. do some research and only settle for the best!!!
 
Omaklackey

Omaklackey

So I spent four days in the hospital with an ischemic small bowel obstruction caused by an endometrial adhesion on my small bowel (complicated by a lovely sinus infection prior to the NG tube insertion not after). It came on very suddenly. It confused me to because I had a bowel movement smallish/medium at 330pm and was at the ER by 630 (after stalling for two hours because my paramedic husband and I (nursing student) couldn't convince ourselves to go. I was curled up on the floor of the bathroom in contraction like pain but thinking "It can't be a bowel obstruction, I just had a bowel movement". We finally went and after puking up most of my contrast right before I got my CT (literally, while sitting on the CT I was puking my guts out). I was in the hospital from last monday until thursday afternoon. I'm so nauseous, just feeling gross and its not going away. I went in for a follow up on monday (yesterday) and she took flat plates only (which can't show obstruction so I'm not sure what the point was... ugh. BUT I don't have any gastric issues, I don't have any small bowel endometriosis, or colon endometriosis. NOTE: huge sarcasm insterted here!!! Makes me want to slap the living SH*T out of both of those GI doctors that told me that. It was a horrible experience. The NG tube chocked me, I had some kind of nasty reaction that kept my throat all swollen up and it took SIX freakin' tries to place the NG tube. I wish I could find a GI who wasn't a freakin' moron. That would be helpful. I do have a diagnosis for gastritis (could that be causing nausea ??? ) and fatty liver disease, and a hiatal hernia, (could that cause nausea ??? ) I'm just so confused and I'm a little afraid to eat. I did the BRAT diet starting friday (full liquid before that) I'm staying away from any hard to digest foods (low residue diet) for a while too. Any thoughts anyone who has dealt with this before? Or suggestions for a doctor in Washington who is NOT a moron and not at the Wenatchee valley clinic. Spokane, or Seattle is fine but they have to take Basic Health Molina. :yfrown:
 
Omaklackey

Omaklackey

I've looked everywhere and asked around and finally went to my Endometriosis specialist in Gig Harbor who is a uro/gynecologist and met with her general surgeon (who did my hernia repair they found last september during my five and a half hour surgery to remove endometriosis). Her name is dr. Pai. She and Dr. Mosbrucker are working on helping me figure out what else is going on. Obviously adhesions are a likely suspect however both of them agreed that some kind of IBD is also pretty likely. I'm getting another CT scan, and a sitz marker test? They are checking it day 2,3,4,5 and I have to swallow a pill with little markers that are picked up by the xray machine. They are specifically looking for anything/anywhere that stuff is slowing down. Has anyone done one of these and can direct me to a thread or any information on it? How accurate are they etc?:sign0085:
 
Keepingfaith

Keepingfaith

@Omaklackey: A friend of mine had to do that test and they did the test not to check for Crohn's, but to see why her GI motility is so slow. The tests were pretty accurate. It's hard for it not to be accurate as they only time GI transit time. The markers didn't pass out of her GI system until 2 weeks later.
 
Omaklackey

Omaklackey

I haven't posted in a while. I have another colonoscopy May 30th. My endometriosis specialist wants it. I'm considering another big surgery with my endo specilialist and she works with a general surgeon. I know I have adhesions which caused my SBO but she is worried that there may be a narrowing. I have had a lot of issues with very small diamater stools. I have tried Miralax, dulcolax suppositories and most recently lactulose. They have been pretty unsuccesful. Frequent cramping, bloating and pain even after bowel movements are "done" is common, and a feeling like I'm never able to have a normal BM. I'm still hoping to avoid a bowel resection but at this point in time it would probably be better to just get rid of any blocked or narrowed areas. I have found further studies about the link of Crohn's and Endometriosis in my school studies. (Nursing Program graduating June) So my question? What should I ask for as far as getting a diagnoses of Crohn's during this colonoscopy? Is there anything I could ask for or do that might help?
 
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