Update: still no return of the mouth ulcers. On final month of Entocort at 3mg/day. GI doc wants me to go on 6 MP. I don't want to take it. I'm containing with an anti-inflammatory diet and supplements, under a doctor's care. Also, going to see a different GI doc who might be more willing to discuss options and research with me.
Good luck! Keep us posted.
Thanks so much for the update. Unfortunately, mine isn't hopeful in the least. I wish I had better news to share but here's the second update I had posted in a different topic because I thought this one was deleted.. Gotta love technology.
Thanks to everyone who has commented, replied and engaged in conversation with me these last few weeks on my previous post. I appreciate every anecdote in the form of personal experience as well as any and all valuable suggestions/warnings or recommendations.
As I stated previously, I was set to receive my pillcam after a clean upper & lower endo. I finally did after back-and-forth with insurance representatives. Sadly, there was still no gross evidence to be found that could discern my diagnosis. The only comment from my GI was that the pill took what he considered to be a "while" to go through my digestive system - approximately 6 hours. He now is convinced I have an "Intestinal Functionality Disorder." In doing some research, I basically chalked it up to be the medicinal fancy name for IBS (mine would be subtype D for diarrhea) and I am really shocked. From the research i've been doing for months I learned IBS would not cause bloody (black & red in color) diarrhea, and that this symptom should not be brushed off as "normal." Also, I mentioned the severity of my recurrent mouth ulcers, which share no linear relationship with IBS as well. Severe weight loss is never mentioned either.
I am so lost & really, I can't see myself going on in this way for much longer. I downright refuse to accept I might have to "just live this way" because there is nothing lively about
this life I am existing in. I can't go to the ER (or, I won't go) because I refuse to pay thousands of dollars to get a CT scan, have my blood taken, get fluids and pain killers and be sent off with a follow up prescript
ion for a GI doxtor. My current GI is sending me to a more sub-specific specialist who deals with "Gastrointestinal Motility" in two-weeks time. I'm really hanging by a thread here quite literally - both physically and mentally.
Can anyone offer a parcel of information to my desperate self?
How likely could it be to have some form of a-typical Crohn's &i not have it show on an upper & lower endo as well as a pillcamera? Is that such a stretch when considering my symptoms?
In the event you haven't read my previous post, my symptoms are complied here as followed:
Severe stomach pain esp. in lower, right quadrant that can extend up my side & wrap around to my back
Severe bloating every time I eat
Frequent, bloody diarrhea which is both black in color & red
Rapid heartbeat, especially after eating
Inability to digest esp. fats
Green stools (rapid transit, no absorption)
Not able to "wait" to use the restroom
Feeling full from barely eating
Pain during & after eating that makes me have to stand up and walk around
Persistent low-grade fever with no cause
Low blood pressure
Severe, re-current mouth ulcers - at their worst I had 6 lesions at once
Upper endoscopy - biopsies with no results other than evidence of gastritis
Colonoscopy - clean, biopsies ONLY of colon & NOT terminal ileum
Pillcamera - no gross findings
I was put on an antibiotic to rule out any intestinal infections.
No DX of Celiac but I have a gluten intolerance & have been eating GF for nearly three years. Symptoms persist.