Well, after lurking for a long time, I have finally registered today. I confess there are folks here I feel really familiar with, so pardon me while I jump right in with "my story".
I am 39 years old, and was finally diagnosed in October 2009 with CD and have recently started 6MP.
When I was 2 or 3 years old, I was admitted to the hospital for diarrhea and kept there for a period of time. They didn't do any diagnostics beyond blood work but my mother was told I had Celiac Disease and to take me completely off gluten. After a few months, I returned to "normal" and gradually gluten was reintroduced. I understand from my Mom that the thinking at the time was that children outgrew Celiac, and that I could periodically have a "celiac flare" and lower my gluten intake to get well again.
So throughout my childhood I had a lot of digestive problems that were chalked up to me having a "sensitive stomach", etc. I never really talked with anyone about my poop, etc. so what I know is just what "my" normal is.
I had a great childhood with my Mom and Step-dad, but visited my father monthly and for school breaks etc. He married a highly abusive woman with two older boys would tormented my younger brother and I throughout our entire childhood. Every time I had to go see my Dad, I would get stomach cramping, major diarrhea episodes, etc. and this contributed to the miscinception that all my digestive/bowel issues were emotional, etc.
In my early 20's I began to experience profound joint pain as well. Referrals to a rheumatologist were not fruitful. I was diagnosed with early stages of ankylosing spondylitis and non-specific joint inflammation. For several years I was on Celebrex and depo-medrol injections into my shoulder joints, and often crippled with pain.
Again, I was told that it "wasn't that bad". My younger brother has RA (diagnosed as a teen) and has his hip replaced at 23 or so, so in all fairness, it really wasn't THAT bad.
For New Year's Eve 1999/2000, my husband and I met my father and his crazy-assed wife in California, staying with them in their RV. DH and I took a side trip to Tiajuana for a few hours and I didn't eat a THING. I'm profoundly germaphobic and was very cautious. I ended up getting extremely ill when we came home and lost 22 lbs in less than 6 weeks.
I had several stool samples, had to do the 4 day collection into a paint can (mortifying to have the high school bully-turned lab receptionist explain that loudly at the recption desk at the lab) and was told that I must have picked up some parasite they couldn't find or identify.
I am 5'7" and a bit and went from 120lbs (which I worked hard to keep) down to 98 lbs and nobody took me seriously. Because of our frustrating medical system, it took a full 9 months to see a GI specialist. In the meantime I went on a VERY restrictive diet and my symptoms imroved gradually and by the time I saw the GI I was back up to nearly 110 lbs.
She immediately dismissed Crohn's, said it was likely a parasite I picked up while on holidays (not a chance) and diagnosed me with IBS. I asked about a scope and was told there was absolutely no point. Was told that "emotional people" are prone to IBS when I started to tear up in her office because I felt I wasn't being heard. I asked if it was normal to take 6-8 immodium a day and still have D, and was told to take Metamucil instead.
To be honest, I didn't have a reference point for how severe my bowel issues were because I had nothing to compare it to, and I left feeling like I was responsible for my bowel troubles.
My husband and I struggled for 7 years to start a family, and in 2004 I had an exploratory laparoscopy. I had some very mild endo removed and was told otherwise there was nothing wrong, but that the location of the adhesions may have caused some of my bowel symptoms. I went off Celebrex and onto Femara and got pregnant the following month.
That pregnancy was completely uneventful bowel-wise, but I had excruciating joint pain throughout and towards the end developed ICP and was induced at 38 weeks in February of 2005. Had a healthy baby girl who is now 6 and running the show around here.
In February 2007 I found a lump in my abdomen which took 9 months to diagnose and remove (thanks Universal Health Care). At the same time, I also found out that we were expecting our second child. Unfortunately, I miscarried soon after.
For many months I was told that the tumour was likely a soft tissue sarcoma and that the odds were not favorable due to its location. As you can imagine I was a terrible emotional wreck and had another severe flare. Ultimately, the tumour was a desmoid tumour and it was removed with clear margins and no further treatment required. I have a plastic mesh insert which makes vomitting extremely painful and look like I fought a rhino, but all is A-OK.
I breastfed my daughter for 2.5 years and during that time had few symptoms (until the tumour scare). My GP told me that it had probably been the emotional stress of infertility causing my stomach issues. This sentiment was reinforced when my symptoms worsened again with my health scare. I was told there was nothing physically wrong and to "try and be happy".
We got pregnant again in November 2008 and my symptoms didn't really go away. In February 2009 I went to the ER with incredible pain from what was diagnosed as a pilonidal (sp) cyst. They surgically drained it in the OR and packed it, sent me home with a health nurse to come daily to change the packing.
By the time the nurse aarrived the following day, it had gone from 7 cms deep to 2 cms and she couldn't properly pack it. A few days later I was back in the hospital ER again, same procudure, but done in the ER and not the OR. I had a total of 7 surgical procedures and 22 visits to the ER for drainage, packing issues, etc. from February 2009 to May 2009. Fun times. I don't think there's a nurse in town who hasn't seen my arse by now. I also had daily packing of the abcess site, which ultimately the nurse trained my husband to doo (poor man). I was in excruciating pain and my body was healing too fast for the abcess to heal from the inside out. They tried different techniques, got fancy with their cutting ("I did a moon this time - that should help"), went wider and deeper but still I healed too fast. I had the last procedure at the end of May and when it healed and abcessed again, it drained on it's own through a small opening which was actually a relief as it wasn't painful.
Again I developed ICP with my second daughter and this time was induced at 36 weeks in July 2009. Another healthy girl, and we thanked our lucky stars again.
I had a follow-up abdomenal CT to check for a desmoid tumour recurrence in August 2009 and the radiologist noted that I had Crohns. I denied it when the surgeon asked me, and then he said I was wrong. The pilonidal cyst was actually a fistula and I flared when pregnant. It took a casual notation from a radiologist to diagnose me.
The pieces started falling into place. In October 2009 I had a scope which firmed up the diagnosis and I was told to wean my daughter so I could begin treatment. I wanted to nurse her for a year, so put it off.
In February 2010 I found a tumour in my left thigh. Shiiiiiiiit... Here we go again. This time I went on a cancellation list, declined the biopsy and requested that they get me in for surgery asap. I had a myxoma removed from my left thigh in March 2010, which ruptured when they lifted if off my femur. More fun times, more delays in treating the CD.
Ultimately I started flagyl in December and 6MP four weeks ago. I never imagined I could be so freaking tired!!! It's insane. Symptoms haven't gone away and I still have the damned fistulas, but at least I know that while I may be sensitive, there IS something physical at the root of this problem of mine (ours).
I spent many years feeling like I was perceived as a basketcase that I began to stuff my emotions and internalize. This probably didn't help me out at all, but at least I felt less judged. I learned not to complain and as a result I don't think even *I* realized how ill I was.
I believe I have had CD since childhood, and definitely had a serious flare in 2000. I try not to be too frustrated at the lack of diagnosis and instead focus on the fact that I have a diagnosis and can now pursue treatments with promise.
Sorry for the novel folks - happy to have delurked!
Janny
I am 39 years old, and was finally diagnosed in October 2009 with CD and have recently started 6MP.
When I was 2 or 3 years old, I was admitted to the hospital for diarrhea and kept there for a period of time. They didn't do any diagnostics beyond blood work but my mother was told I had Celiac Disease and to take me completely off gluten. After a few months, I returned to "normal" and gradually gluten was reintroduced. I understand from my Mom that the thinking at the time was that children outgrew Celiac, and that I could periodically have a "celiac flare" and lower my gluten intake to get well again.
So throughout my childhood I had a lot of digestive problems that were chalked up to me having a "sensitive stomach", etc. I never really talked with anyone about my poop, etc. so what I know is just what "my" normal is.
I had a great childhood with my Mom and Step-dad, but visited my father monthly and for school breaks etc. He married a highly abusive woman with two older boys would tormented my younger brother and I throughout our entire childhood. Every time I had to go see my Dad, I would get stomach cramping, major diarrhea episodes, etc. and this contributed to the miscinception that all my digestive/bowel issues were emotional, etc.
In my early 20's I began to experience profound joint pain as well. Referrals to a rheumatologist were not fruitful. I was diagnosed with early stages of ankylosing spondylitis and non-specific joint inflammation. For several years I was on Celebrex and depo-medrol injections into my shoulder joints, and often crippled with pain.
Again, I was told that it "wasn't that bad". My younger brother has RA (diagnosed as a teen) and has his hip replaced at 23 or so, so in all fairness, it really wasn't THAT bad.
For New Year's Eve 1999/2000, my husband and I met my father and his crazy-assed wife in California, staying with them in their RV. DH and I took a side trip to Tiajuana for a few hours and I didn't eat a THING. I'm profoundly germaphobic and was very cautious. I ended up getting extremely ill when we came home and lost 22 lbs in less than 6 weeks.
I had several stool samples, had to do the 4 day collection into a paint can (mortifying to have the high school bully-turned lab receptionist explain that loudly at the recption desk at the lab) and was told that I must have picked up some parasite they couldn't find or identify.
I am 5'7" and a bit and went from 120lbs (which I worked hard to keep) down to 98 lbs and nobody took me seriously. Because of our frustrating medical system, it took a full 9 months to see a GI specialist. In the meantime I went on a VERY restrictive diet and my symptoms imroved gradually and by the time I saw the GI I was back up to nearly 110 lbs.
She immediately dismissed Crohn's, said it was likely a parasite I picked up while on holidays (not a chance) and diagnosed me with IBS. I asked about a scope and was told there was absolutely no point. Was told that "emotional people" are prone to IBS when I started to tear up in her office because I felt I wasn't being heard. I asked if it was normal to take 6-8 immodium a day and still have D, and was told to take Metamucil instead.
To be honest, I didn't have a reference point for how severe my bowel issues were because I had nothing to compare it to, and I left feeling like I was responsible for my bowel troubles.
My husband and I struggled for 7 years to start a family, and in 2004 I had an exploratory laparoscopy. I had some very mild endo removed and was told otherwise there was nothing wrong, but that the location of the adhesions may have caused some of my bowel symptoms. I went off Celebrex and onto Femara and got pregnant the following month.
That pregnancy was completely uneventful bowel-wise, but I had excruciating joint pain throughout and towards the end developed ICP and was induced at 38 weeks in February of 2005. Had a healthy baby girl who is now 6 and running the show around here.
In February 2007 I found a lump in my abdomen which took 9 months to diagnose and remove (thanks Universal Health Care). At the same time, I also found out that we were expecting our second child. Unfortunately, I miscarried soon after.
For many months I was told that the tumour was likely a soft tissue sarcoma and that the odds were not favorable due to its location. As you can imagine I was a terrible emotional wreck and had another severe flare. Ultimately, the tumour was a desmoid tumour and it was removed with clear margins and no further treatment required. I have a plastic mesh insert which makes vomitting extremely painful and look like I fought a rhino, but all is A-OK.
I breastfed my daughter for 2.5 years and during that time had few symptoms (until the tumour scare). My GP told me that it had probably been the emotional stress of infertility causing my stomach issues. This sentiment was reinforced when my symptoms worsened again with my health scare. I was told there was nothing physically wrong and to "try and be happy".
We got pregnant again in November 2008 and my symptoms didn't really go away. In February 2009 I went to the ER with incredible pain from what was diagnosed as a pilonidal (sp) cyst. They surgically drained it in the OR and packed it, sent me home with a health nurse to come daily to change the packing.
By the time the nurse aarrived the following day, it had gone from 7 cms deep to 2 cms and she couldn't properly pack it. A few days later I was back in the hospital ER again, same procudure, but done in the ER and not the OR. I had a total of 7 surgical procedures and 22 visits to the ER for drainage, packing issues, etc. from February 2009 to May 2009. Fun times. I don't think there's a nurse in town who hasn't seen my arse by now. I also had daily packing of the abcess site, which ultimately the nurse trained my husband to doo (poor man). I was in excruciating pain and my body was healing too fast for the abcess to heal from the inside out. They tried different techniques, got fancy with their cutting ("I did a moon this time - that should help"), went wider and deeper but still I healed too fast. I had the last procedure at the end of May and when it healed and abcessed again, it drained on it's own through a small opening which was actually a relief as it wasn't painful.
Again I developed ICP with my second daughter and this time was induced at 36 weeks in July 2009. Another healthy girl, and we thanked our lucky stars again.
I had a follow-up abdomenal CT to check for a desmoid tumour recurrence in August 2009 and the radiologist noted that I had Crohns. I denied it when the surgeon asked me, and then he said I was wrong. The pilonidal cyst was actually a fistula and I flared when pregnant. It took a casual notation from a radiologist to diagnose me.
The pieces started falling into place. In October 2009 I had a scope which firmed up the diagnosis and I was told to wean my daughter so I could begin treatment. I wanted to nurse her for a year, so put it off.
In February 2010 I found a tumour in my left thigh. Shiiiiiiiit... Here we go again. This time I went on a cancellation list, declined the biopsy and requested that they get me in for surgery asap. I had a myxoma removed from my left thigh in March 2010, which ruptured when they lifted if off my femur. More fun times, more delays in treating the CD.
Ultimately I started flagyl in December and 6MP four weeks ago. I never imagined I could be so freaking tired!!! It's insane. Symptoms haven't gone away and I still have the damned fistulas, but at least I know that while I may be sensitive, there IS something physical at the root of this problem of mine (ours).
I spent many years feeling like I was perceived as a basketcase that I began to stuff my emotions and internalize. This probably didn't help me out at all, but at least I felt less judged. I learned not to complain and as a result I don't think even *I* realized how ill I was.
I believe I have had CD since childhood, and definitely had a serious flare in 2000. I try not to be too frustrated at the lack of diagnosis and instead focus on the fact that I have a diagnosis and can now pursue treatments with promise.
Sorry for the novel folks - happy to have delurked!
Janny
I'm totally with you on the whole sensitive stomach as a child thing. I can remember being two or three and having terrible stomach issues and my parents literally walking me around. Yes, they didn't so much as tell me to walk it off, they literally made me try and walk it off. Hahah. I don't fault them of course, they didn't know any better 
