Hello everyone!
I have been reading over your posts for a few weeks now and thought I should join and tell my story. I am still undiagnosed and have been suffering for over 10 years now. For most of this time I have been uninsured and thus never made it to the countless apts. and tests that are needed for making a diagnosis. I do however believe that I have been suffering much longer as I remember being about 7 or 8 and having my stomach bloat up with severe pain. My old timer granddad gave me water with baking soda.. Nasty Stuff and never really helped but I always seemed to get better and go on for a few more years before bam another painful episode.
When I was 19 started happening again and this time went to ER because for two days I was either curled up on the floor or in the bathroom feeling like I was in labor. Not that I could compare the pain to labor, had never been through it yet. Now that I have I would give birth over these insane stomach cramps that I get. The difference was that I was actually taken care of during labor. You don’t have the nurses and drs giving you that sideways glace, as if “yeah right your really in that much pain?” Because I don’t have red flag symptoms, until recently never had much of a D problem nor constipation, just pain… hard stomach and gas.
As of March 2010 I gave birth to my son, my 1st child it wasn’t until that point that I started getting episodes after episodes, never cooled down, meaning I break out into cold sweats, really embarrassing. Started going to drs. Did a lot of bloodwork, as they thought I was having early menopause, although NO ONE in family has this.. The sweats never go away, dr. says it is hormonal because of having baby and it takes time to recover?? WTF 1 ½ years is not enough?? Then I start getting dizzy spells and almost passing out. Come to think of it this has happened to me about 1 or 2times a year since the onset of severe pain when I was 19. But I never put 2 and 2 together nor do drs. Apparently.
I have now had upper scope, MRI special one for pancreas and ducts (found that I have a birth defeact of pancreas called pancreas divisium), and CT, am getting colonoscopy in a few days and an MRI to look at small intestines. The only reason I got those tests is because my dad came with me to the apt. (he has Crohn’s disease was diagnosed back in like 1980, back when no one knew what was going on, he was basically bleeding out before they gave him a look). Every single apt I have been to, I explain to them my families medical history and the fact that I have gastrointestinal problems and my dad has Crohn’s you would think they would have looked into it. What I always get is- It’s not crohn’s it’s not presenting like Crohn’s, must be IBS what??? I thought they have a hard time differentiating between the two, but this dr. knows everything apparently. My fear is that I will never get diagnosed. Instead I am getting sicker, can’t do anything without stomach hurting and feeling exhausted, the sad thing is I have kinda learned to live with pain, not that it is a life, but the tiredness, the joint pain, and now sweating are all recently new and too much to deal with while being in pain and raising a toddler. My GI dr told me they don’t prescribe narcotics for GI problems because it makes it worse. I was like o.k great so I am just suppost to me miserable? He was basically like yes, This brought me to tears. I had waited so long to FINALLY talk to a GI dr. and to have him act like all the other dr.s was just too much. Don’t think it helped my case thought
Sorry this is way longer than I meant it to be.
Amy
I have been reading over your posts for a few weeks now and thought I should join and tell my story. I am still undiagnosed and have been suffering for over 10 years now. For most of this time I have been uninsured and thus never made it to the countless apts. and tests that are needed for making a diagnosis. I do however believe that I have been suffering much longer as I remember being about 7 or 8 and having my stomach bloat up with severe pain. My old timer granddad gave me water with baking soda.. Nasty Stuff and never really helped but I always seemed to get better and go on for a few more years before bam another painful episode.
When I was 19 started happening again and this time went to ER because for two days I was either curled up on the floor or in the bathroom feeling like I was in labor. Not that I could compare the pain to labor, had never been through it yet. Now that I have I would give birth over these insane stomach cramps that I get. The difference was that I was actually taken care of during labor. You don’t have the nurses and drs giving you that sideways glace, as if “yeah right your really in that much pain?” Because I don’t have red flag symptoms, until recently never had much of a D problem nor constipation, just pain… hard stomach and gas.
As of March 2010 I gave birth to my son, my 1st child it wasn’t until that point that I started getting episodes after episodes, never cooled down, meaning I break out into cold sweats, really embarrassing. Started going to drs. Did a lot of bloodwork, as they thought I was having early menopause, although NO ONE in family has this.. The sweats never go away, dr. says it is hormonal because of having baby and it takes time to recover?? WTF 1 ½ years is not enough?? Then I start getting dizzy spells and almost passing out. Come to think of it this has happened to me about 1 or 2times a year since the onset of severe pain when I was 19. But I never put 2 and 2 together nor do drs. Apparently.
I have now had upper scope, MRI special one for pancreas and ducts (found that I have a birth defeact of pancreas called pancreas divisium), and CT, am getting colonoscopy in a few days and an MRI to look at small intestines. The only reason I got those tests is because my dad came with me to the apt. (he has Crohn’s disease was diagnosed back in like 1980, back when no one knew what was going on, he was basically bleeding out before they gave him a look). Every single apt I have been to, I explain to them my families medical history and the fact that I have gastrointestinal problems and my dad has Crohn’s you would think they would have looked into it. What I always get is- It’s not crohn’s it’s not presenting like Crohn’s, must be IBS what??? I thought they have a hard time differentiating between the two, but this dr. knows everything apparently. My fear is that I will never get diagnosed. Instead I am getting sicker, can’t do anything without stomach hurting and feeling exhausted, the sad thing is I have kinda learned to live with pain, not that it is a life, but the tiredness, the joint pain, and now sweating are all recently new and too much to deal with while being in pain and raising a toddler. My GI dr told me they don’t prescribe narcotics for GI problems because it makes it worse. I was like o.k great so I am just suppost to me miserable? He was basically like yes, This brought me to tears. I had waited so long to FINALLY talk to a GI dr. and to have him act like all the other dr.s was just too much. Don’t think it helped my case thought
Sorry this is way longer than I meant it to be.Amy
