Hi Everyone, I'm new to the forum and just wanted to share my story and perhaps get some info from people with similar symptoms to mine. I am in my mid 50's married woman with 2 children. I was first diagnosed back in 1988, so am certainly not new to the disease. It took about 18 months to get it under control, with a mix of Imuran, Prednisone & salazapyrine, and I managed ok for the next couple of years, then I started getting severe pain in chest which also went through to the back, I went back to GI and he did a gastroscopy, results came back that the Crohns had moved outside of the bowel and the cap of my duodenum was covered in multiple ulcers, as this is rare he was unsure how to treat it and decided to try conventional stomach ulcer treatments, he started with Locec and luckily for me these kicked in within a couple of weeks.
Anyway I went through the years with ups and downs. In 1997 moved interstate and not long after went into a remission and did not seek out a new GI until 2001. Again not to much to worry about with the bowel, but again with new flare had severe pain in chest and back area, this time Gastroscopy showed it was in my esophagus, again new GI told me this rare and unsure how to treat, tried conventional meds again, they took a bit longer but eventually worked.
I have tried numerous times over the years to come off these meds but within a week I am running for milk cheese or something similar to coat the ulcers as this eases the pain. For the last 10 years it has been back with a vengeance in both bowel & esophageal area, GI put me on low dose 6' Mercaptopurine & that in combination with steroids if I had a flare worked reasonably well, I managed to stay quite comfortably on a 50mg dose for 3 years. As I've gotten older I don't seem to tolerate a lot of the meds from early years, I am unable to take Salazapyrine anymore as it makes me nauseous, Imuran is also off the list as it seems to drop my resistance to low and I end up with chronic chest infections one after the other with really nasty coughs that I can't get rid of. GI argues the point with me on this, as this is not a common side effect, as I said it is how it lowers my resistance that is the problem.
In January 2012 I had a bad flare & GI decided to double the dosage of 6' MP which he had me do gradually over a 3 week period. Late March I began to feel really unwell, extremely tired & very fluish with lots of fevers, saw my local Dr who gave me strong antibiotics to take for 5 days, they didn't touch it & I went back & saw his partner who did blood test & gave me a different antibiotic, when I went back for blood test results, they showed my CRP level was sitting at 126 and he said I had severe infection somewhere and sent me to the hospital to get checked out. Turns out after 2 hospital stays a total of 19 days & every test known to man & suffering extreme high fevers and Rigors (uncontrollable shaking) it was an allergic reaction to the 6' MP, it caused Neumonitis (inflammation in the lungs) luckily for me this reversed itself & my lungs ended up with no permanent damage, so now I am unable to take this drug any longer or any drugs from the same family.
After being that sick I am loathe to take any more of these high powered medications. After a recent CT scan, Colonoscopy, & Gastroscopy, the GI has determined that the Crohns in my Ileum has badly damaged about 18cms of my small bowel an part of the valve, and that surgery is the best way to go. I see a surgeon to discuss this early September. This last flare in both my bowel & esophagus has been particularly nasty & very painful, I have been on high dose prednisone 50mg tapering down for last 6 weeks, and 40mg x twice daily Nexium for the esophagus area for past 3 weeks and it is just coming under control now, the prednisone while in high doses works for the classic Crohns, but it tends to irritate the Crohns in the upper GI tract, which leaves me stuck between a rock and a hard place. I would appreciate some feedback from fellow sufferers who have had Crohns in the Duodenom or Esophagus areas and what treatments were given and how successfully it worked for you.
Anyway I went through the years with ups and downs. In 1997 moved interstate and not long after went into a remission and did not seek out a new GI until 2001. Again not to much to worry about with the bowel, but again with new flare had severe pain in chest and back area, this time Gastroscopy showed it was in my esophagus, again new GI told me this rare and unsure how to treat, tried conventional meds again, they took a bit longer but eventually worked.
I have tried numerous times over the years to come off these meds but within a week I am running for milk cheese or something similar to coat the ulcers as this eases the pain. For the last 10 years it has been back with a vengeance in both bowel & esophageal area, GI put me on low dose 6' Mercaptopurine & that in combination with steroids if I had a flare worked reasonably well, I managed to stay quite comfortably on a 50mg dose for 3 years. As I've gotten older I don't seem to tolerate a lot of the meds from early years, I am unable to take Salazapyrine anymore as it makes me nauseous, Imuran is also off the list as it seems to drop my resistance to low and I end up with chronic chest infections one after the other with really nasty coughs that I can't get rid of. GI argues the point with me on this, as this is not a common side effect, as I said it is how it lowers my resistance that is the problem.
In January 2012 I had a bad flare & GI decided to double the dosage of 6' MP which he had me do gradually over a 3 week period. Late March I began to feel really unwell, extremely tired & very fluish with lots of fevers, saw my local Dr who gave me strong antibiotics to take for 5 days, they didn't touch it & I went back & saw his partner who did blood test & gave me a different antibiotic, when I went back for blood test results, they showed my CRP level was sitting at 126 and he said I had severe infection somewhere and sent me to the hospital to get checked out. Turns out after 2 hospital stays a total of 19 days & every test known to man & suffering extreme high fevers and Rigors (uncontrollable shaking) it was an allergic reaction to the 6' MP, it caused Neumonitis (inflammation in the lungs) luckily for me this reversed itself & my lungs ended up with no permanent damage, so now I am unable to take this drug any longer or any drugs from the same family.
After being that sick I am loathe to take any more of these high powered medications. After a recent CT scan, Colonoscopy, & Gastroscopy, the GI has determined that the Crohns in my Ileum has badly damaged about 18cms of my small bowel an part of the valve, and that surgery is the best way to go. I see a surgeon to discuss this early September. This last flare in both my bowel & esophagus has been particularly nasty & very painful, I have been on high dose prednisone 50mg tapering down for last 6 weeks, and 40mg x twice daily Nexium for the esophagus area for past 3 weeks and it is just coming under control now, the prednisone while in high doses works for the classic Crohns, but it tends to irritate the Crohns in the upper GI tract, which leaves me stuck between a rock and a hard place. I would appreciate some feedback from fellow sufferers who have had Crohns in the Duodenom or Esophagus areas and what treatments were given and how successfully it worked for you.
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Glad you found us. Sounds like you have had a major battle on your hands with this damned disease :-(