Hey there. I made a thread a while back in the undiagnosed club so I believe this will be my 2nd. I'm a 26 year old male from the US. I had my first flare up when I was around 15. Terrible, terrible pain in lower right quadrant (my ileum, it's where the pain always is) and incredibly constipated. I had the urge to go, but couldn't. Could barely walk, waited for a couple days, longer then I should and went to the Dr. He was no specialist, just a family dr. I had never seen him before. He was a nice Indian with a very thick accent. I could barely understand a word he said. I had to keep asking him to repeat himself, and he eventually stormed out of the room in a fit.
What I got out of it was that I had Crohns. He prescribed me what I now know to be prednisone. Boy, that stuff really worked. Only I thought too well, I lost a ton of weight in the process. Went from about I don't know, maybe 220 to 140 within a very short time period. I didn't like how the stuff made me feel, the weight loss scared me too so I stopped taking the pred when I ran out. Throughout the years I stayed super skinny, with not too much of an appetite most the time. The pain would come back from time to time, and while it wasn't as bad as the first flare it was still bad enough for me to miss work here and there. I would vomit sometimes, bloody. I had diaherra, I still do, chronic, nasty, smelly, mucusy and bloody.
Anyways, I started smoking pot a little ways back, I'm a registered medical marijuana patient and it has made a huge difference in my quality of life when I am out of or in a flareup. This past flare has lasted almost 2 years now, I'm in constant pain, LRQ and if I don't smoke, I have no appetite. I smoke often, only the medical herb, I gained a good amount of weight (I stay at a near constant 185lbs, I'm 6'0).
Well I just couldn't take it anymore. I confided in my new girlfriend my secret illness that I was too proud to tell anyone about, and why I would have to act the way I do sometimes. We went to the Dr. They said I had IBS, no tests, no nothing. It's just stress they said, get your stress under control and you'll be fine. I told them I puke up coffee ground black blood, that I have constant diaherrea with blood that splatters all over the bowl, and almost everytime I wipe there's blood. I shit mucus, I always have to go, sometimes 20 times a day. And I swear I can feel it, my entire digestive system feels inflammed. I suggested Chron's, they said "you watch to much TV". Blamed blood on hemmoroids.
Anyways, new Dr. Still says IBS, refers me to GI but thinks its a waste of time he says "You're too young for these problems". GI does colonsocopy and endoscopy. Says he could see my colon spasming, so confirmed IBS. Took biosies, negative for that bacteria. He did say my esophagus, duodunum, stomach, ileum and colon all had "mild" inflammation. Put me on some crappy IBS medicine that didn't work, and said to keep taking omeprazole. Blamed it on gastritis. Diagnosed me with GERD. Took the damn omeprazole for months, in agony. Marijuana was only doing so much anymore. Went back when it was time to see him again, upped the omeprazole and gave me Elavil (amitryptilyne). I have to say, the Elavil does help with the LRQ pain. It also did wonders for my chronic shoulder, neck, shoulder blade pain that I think is Fibromyalgia.
Took the Elavil for a while, ran into huge financial burdens and headaches and wasn't able to see the GI again. He wouldn't refill until I saw him and caught up on my bill. So I suffered some more, kept smoking. Went to the ER when I was having unbelievable contractions in what felt like my ileum. Did a CT scan, showed "mild" inflammation in my small bowel. Gave me morphine, Flagyl thinking small bowel overgrowth, and vicodin. Haven't been back again to see the GI. If I have chronic inflammation, what could they blame it on? IBS does not cause chronic inflammation, right? They say that I can't have Crohn's, because of my white blood cell count and that other blood test I think they do. I'm really unsure and all new to this. But I have read people's stories about how inaccurate those two basic tests are. They have never offered to check my stool, and I am too embarrassed to ask them too. He want's to do a pill cam, but my insurance isn't covering any of this and I can't keep spending all this money, and getting into more and more debt and not get anywhere. My work hates me because I am constantly ill, but they have no idea how hard I try, every single day just getting up can be monumentous. The Flagyl didn't help at all I don't think. I went less often, and felt a little constipated, but that's a side effect of the vicodin too, so not sure.
I also have a theroy as to why my inflammation is "mild". First of all, everytime I do get tests run, I'm usually on a good day. I swear, it just works out that way. I'm in pain, but it will be bareable. Secondly, I have become a real, true medical marijuana advocate. My grandfather I believe had UC. He had chronic ulcers, but would never go to get them checked out. When he was finally dieing from I believe colon cancer, Marijuana really helped with his nausea and everything. My grandmother had pancreatic cancner, it spread throughout her whole body. The chemo made her as sick as a dog, and ALL of her doctors told her to get one of her son's, or someone she knows to get her some pot to help with the nausea, and the appetite. They both died before I ever even tried Marijuana, and before my state "legalized it for medical use". I was well over 20 before I started smoking, and the difference it made in how my stomach felt was HUGE!
So I won't pretend to know everything about the pharmacology of Marijuana. But I have been doing some resarch online about certain cannabanoids (which come from cannabis [pot]) that are targeted by the cannabanoid receptors that we have in our bodies including our digestive systems. These cannabanoids do all sorts of cool and useful things for us, including being an anti-inflammatory. My GI knows that I smoke, he's completely fine with it. But could it be that my chronic use of Marijuana is causing my chronic case of inflammation of not only my ileum, where all my pain is, but according to the DR. my entire digestive system to only be mild?
He says his willing to do more testing, but he isn't going to diagnose me with something he can't see. It's all so infuriating, all I want is for this to be over, the not knowing, I just want a diagnosis. Or even just a remission, if only for a little while. Should I demand pred, and see how it goes? I have thought of quitting smoking for a while and see what happens with the inflammation, but I know the Elavil won't be enough. It already really isn't. Vicodin's don't really do anything either.
Any advice? I know it's long and probably unorganized with typos and I'm sure I left a thing or two out on accident. I'm medicated as I type this. lol.
I really enjoy the forum, I've been reading and lurking for a while now, thought I should put myself out there and see if anyone has anything they can help me with. My story seems a lot like a lot of the other ones I've been reading.
What I got out of it was that I had Crohns. He prescribed me what I now know to be prednisone. Boy, that stuff really worked. Only I thought too well, I lost a ton of weight in the process. Went from about I don't know, maybe 220 to 140 within a very short time period. I didn't like how the stuff made me feel, the weight loss scared me too so I stopped taking the pred when I ran out. Throughout the years I stayed super skinny, with not too much of an appetite most the time. The pain would come back from time to time, and while it wasn't as bad as the first flare it was still bad enough for me to miss work here and there. I would vomit sometimes, bloody. I had diaherra, I still do, chronic, nasty, smelly, mucusy and bloody.
Anyways, I started smoking pot a little ways back, I'm a registered medical marijuana patient and it has made a huge difference in my quality of life when I am out of or in a flareup. This past flare has lasted almost 2 years now, I'm in constant pain, LRQ and if I don't smoke, I have no appetite. I smoke often, only the medical herb, I gained a good amount of weight (I stay at a near constant 185lbs, I'm 6'0).
Well I just couldn't take it anymore. I confided in my new girlfriend my secret illness that I was too proud to tell anyone about, and why I would have to act the way I do sometimes. We went to the Dr. They said I had IBS, no tests, no nothing. It's just stress they said, get your stress under control and you'll be fine. I told them I puke up coffee ground black blood, that I have constant diaherrea with blood that splatters all over the bowl, and almost everytime I wipe there's blood. I shit mucus, I always have to go, sometimes 20 times a day. And I swear I can feel it, my entire digestive system feels inflammed. I suggested Chron's, they said "you watch to much TV". Blamed blood on hemmoroids.
Anyways, new Dr. Still says IBS, refers me to GI but thinks its a waste of time he says "You're too young for these problems". GI does colonsocopy and endoscopy. Says he could see my colon spasming, so confirmed IBS. Took biosies, negative for that bacteria. He did say my esophagus, duodunum, stomach, ileum and colon all had "mild" inflammation. Put me on some crappy IBS medicine that didn't work, and said to keep taking omeprazole. Blamed it on gastritis. Diagnosed me with GERD. Took the damn omeprazole for months, in agony. Marijuana was only doing so much anymore. Went back when it was time to see him again, upped the omeprazole and gave me Elavil (amitryptilyne). I have to say, the Elavil does help with the LRQ pain. It also did wonders for my chronic shoulder, neck, shoulder blade pain that I think is Fibromyalgia.
Took the Elavil for a while, ran into huge financial burdens and headaches and wasn't able to see the GI again. He wouldn't refill until I saw him and caught up on my bill. So I suffered some more, kept smoking. Went to the ER when I was having unbelievable contractions in what felt like my ileum. Did a CT scan, showed "mild" inflammation in my small bowel. Gave me morphine, Flagyl thinking small bowel overgrowth, and vicodin. Haven't been back again to see the GI. If I have chronic inflammation, what could they blame it on? IBS does not cause chronic inflammation, right? They say that I can't have Crohn's, because of my white blood cell count and that other blood test I think they do. I'm really unsure and all new to this. But I have read people's stories about how inaccurate those two basic tests are. They have never offered to check my stool, and I am too embarrassed to ask them too. He want's to do a pill cam, but my insurance isn't covering any of this and I can't keep spending all this money, and getting into more and more debt and not get anywhere. My work hates me because I am constantly ill, but they have no idea how hard I try, every single day just getting up can be monumentous. The Flagyl didn't help at all I don't think. I went less often, and felt a little constipated, but that's a side effect of the vicodin too, so not sure.
I also have a theroy as to why my inflammation is "mild". First of all, everytime I do get tests run, I'm usually on a good day. I swear, it just works out that way. I'm in pain, but it will be bareable. Secondly, I have become a real, true medical marijuana advocate. My grandfather I believe had UC. He had chronic ulcers, but would never go to get them checked out. When he was finally dieing from I believe colon cancer, Marijuana really helped with his nausea and everything. My grandmother had pancreatic cancner, it spread throughout her whole body. The chemo made her as sick as a dog, and ALL of her doctors told her to get one of her son's, or someone she knows to get her some pot to help with the nausea, and the appetite. They both died before I ever even tried Marijuana, and before my state "legalized it for medical use". I was well over 20 before I started smoking, and the difference it made in how my stomach felt was HUGE!
So I won't pretend to know everything about the pharmacology of Marijuana. But I have been doing some resarch online about certain cannabanoids (which come from cannabis [pot]) that are targeted by the cannabanoid receptors that we have in our bodies including our digestive systems. These cannabanoids do all sorts of cool and useful things for us, including being an anti-inflammatory. My GI knows that I smoke, he's completely fine with it. But could it be that my chronic use of Marijuana is causing my chronic case of inflammation of not only my ileum, where all my pain is, but according to the DR. my entire digestive system to only be mild?
He says his willing to do more testing, but he isn't going to diagnose me with something he can't see. It's all so infuriating, all I want is for this to be over, the not knowing, I just want a diagnosis. Or even just a remission, if only for a little while. Should I demand pred, and see how it goes? I have thought of quitting smoking for a while and see what happens with the inflammation, but I know the Elavil won't be enough. It already really isn't. Vicodin's don't really do anything either.
Any advice? I know it's long and probably unorganized with typos and I'm sure I left a thing or two out on accident. I'm medicated as I type this. lol.
I really enjoy the forum, I've been reading and lurking for a while now, thought I should put myself out there and see if anyone has anything they can help me with. My story seems a lot like a lot of the other ones I've been reading.
