Hello, I am a 26 yr old mother who has been experiencing some disturbing medical issues..Any input or advice would be greatly appreciated..please read..I am so scared, and no one can seem to figure out whats wrong...I started at 130 lbs. 5ft 9 inches tall.....I am now at 112 lbs....I Can't lose anymore weight!!!!
I have been having chronic diarrhea for a little over a year now...It is not normal diarrhea..it has this horribly foul smell and appears to be fatty or mucous like(I can see my food in my poo..more than normal).I have bouts of sever burping and gas...where my stomach will bloat up like I'm 6 months pregnant, and finally after a few hours of labor like pain..I will be able to fart or burp ...I have nausia but no vomiting..I have a very decreased appetite..and when I do eat 9 times out of 10 I get the above gas bubble....I have severe hand tremors,mental fogginess, short term memory loss, balance disorders,visual changes,anxiety,this new kind of sever headache..but this headache usually only last a few minutes then it goes away on its own,increases urination,foam in urine,......and horrible night sweats. I went to the Dr who tested me for Lupus, the ana was a weak positive...so she said she thought I should just see a GI. The GI Dr. ordered like 6 different stool tests,blood work,A colonoscopy,endoscopy, and abdominal CT scan. They said I have reflux which I never even knew, and gave me aciphex prescip for that.They said my intestines,coloc..lookedgood/normal, and the biopsies of both came back normal.My stool sample tests said they were all normal..no blood in stool, no parasites, no foriegn bacterial overgrowth...in fact my stool samples had absolutely no bacteria in them...not even the good kind.The abdominal CT scan showed I had 3 small cycts in my left kidney(which they said I shouldn't be concerned about..it was normal)...and an abdominal mass the size of a large orange on my left lower quadrant...so the GI referred me to a Gynocologist ...It was a multiple density cyst, and stage 4 endometreosis.The Dr. said he doubted the diarrhea I had surgery for that 2.5 weeks ago and am feeling better from surgery but the other symptoms all persist....In fact the abdominal cramping and diarrhea seem to be getting worse....I am so tired all the time..my eyelids feel like they are falling down half the time....I called my GI back today to ask for a pancreatic function test and a liver function test...other than that I don't know where to go from here, and my Dr's don't either..and noe of them seem to be that worried about my extreme weight loss....But I am 5'9 and weigh 112 lbs...I am so thin it's grouse...I have no boobies left or anything....I need input, ideas ,advice...
.....It's not my thyroid by the way had that tested already...I'm native american and I know that we as a people have a higher risk of getting a lot of things...I'm just at a standstill, and something keeps telling me I don't have time to stand still.
Oh and all the blood tests she ordered came back regualer except my blood sugar levels were low..and I remember I went and ate right before I had those labs done...and when I checked into the Hospital for my Gyno surgery my blood pressure was like 80 something/ 55....that is way lower than my average blood pressure...I don't have high blood pressure or anything..but not that darn low....
Any input...anyone..I was reading on wrong diagnosis website and something that was number 2 on the list was Systemic mastocytosis..but I read up on that and it says it's an extremely rare orphan disease..but the symptoms fit..I guess I am going to call my GI and ask her too order the test on the existing tissue that she has from my colonoscopy...Hopefully I will find out something.
Has anybody considered your gall bladder? It can cause an increase in burping if there is a problem and is involved in fat digestion. Did they do a bowel prep before they did the surgery for the mass and the stage 4 endometriosis? Endometriosis can actually grow right into your bowels. Did they check your bowels when they did the surgery to see if they could find any endometriosis growing in there? Did you have a complete hysterectomy, or did you opt to have them save your reproductive organs if at all possible. I am asking as someone who was diagnosed with severe endometriosis who didn't know I had it with an emergency laporotomy and who later opted to get a complete hysterectomy and do no HRT because of endometriosis problems. While they did not see any on my bowels, they did find some on my bladder, which caused me considerable problem & I think I still have some problems, maybe from surgery related scarring to this day.
The Dr. said he was going to leave my reproductive organs for the next 5 years to give me time to complete my family...he said we would use hormone therapy to supress the endometreosis from growing back..until I get a hysterectomy. Yes I had a biopsy of my intestines when they did the colonoscopy...and the images and biopsy came back normal.
Regarding your increased urination and foam... have they tested your GFR to see how your kidneys are functioning?
Regarding your headache, balance & visual change- have they done brain and pituitary MRI scans to be sure there is no tumor, etc. causing these symptoms?
When you say they tested your thyroid, did they test your free T 4 and T 3 or just a TSH blood test? Because there can be nodules that produce thyroid hormones on a person's thyroid. When they test TSH, they are testing that pituitary hormone that is supposed to regulate the thyroid. But "hot" nodules on the thyroid can throw things out of kilter by emitting higher than normal amounts of hormones that can cause thyrotoxicity (if memory serves me correctly).
Did you get an ultrasound of your gall bladder?
Are you also having any rapid pulse and episodes of high (and possibly swinging low) blood pressures? If so, have they tested your catecholamines, plasma free metanephrines, and/or urine metanephrines? Headache, anxiety, sweating, can all be additional signs of high catecholamine output.
About the diarrhea... several years ago when I had prolonged diarrhea problems, a relative of mine sent me a product called Kona Gold. She told me to open the capsule and put its contents under my tongue because of my "leaky gut". I was so very tired and often dehydrated from all the diarrhea. With the second dose, I felt like God worked a miracle as far as my energy was concerned. I don't sell the stuff, but if you're interested, maybe you could find something about it online.
Have they tested you for celiac sprue disease?
Have you looked into the side effects of the hormones you are being given? A lot of times, medication can give bad side effects, and perhaps that is why your diarrhea is worse. The cramping might be worse due to scarring and or the hormones. And if they laser burned your endometriosis rather than excising (cutting it out) it, that can cause worse scarring, because your body treats burned tissue as foreign (I've read). I was laser burned the first time because it was an emergency surgery where they discovered the endometriosis and I knew nothing about it. I read up on it and the second laporotomy (where I had the hysterectomy), I had a sympathetic surgeon who agreed to excise wherever possible.
It is possible for anxiety to cause a lot of digestion problems. If the doctors rule out everything medical, you might want to consider checking with a psychiatrist about a mild tranquilizer for the diarrhea.
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