Hi I'm Sharleen,
I'm 39 & live in NZ. I think I possibly developed Crohns in my teens/early twenties but it wasn't diagnosed till after my second baby at 33 yrs. When I was pregnant with my first in 1999 I developed what was thought to be a bartolins abscess but it had tunnelled to? my bowel and so it required unorthodox surgery, I required this op twice during that pregnancy, once at 12wks, once at 20wks, despite being told in ER I might lose my bub during that op, I had a healthy baby boy who is now 13. <3 In my early twenties I kept getting told i had "IBS", i had barium enemas and sigmoidoscopies done and nothing was revealed. It wasn't until at age 32, I had what was thought to be 4 wks of extreme gastro, with joint-pain, a swollen ankle that could barely bare weight, about 6kg weight loss and the beginnings of a septic looking rash all over my buttocks and tummy that I ended up in the ER & on standby to have my bowel out! Luckily for me I responded to everything that was thrown at me (steroids, electrolytes, anti-biotics) and I kept my bowel. After this initial shocking diagnosis (back then they said UC), (I am the one in the family who is the health freak! Ex-vegetarian, non-smoker, fitness enthusiast, known to eat spinach for breakfast...& at the time was training to be a Herbalist/Naturopath!) I was really proactive, totally changed my diet (Eat Right 4 Your Type) and took fish oil etc and with the steroids I got well really quickly, my Dr took another look in my bowel and said - "I think we made a mistake, I dont think you have IBD at all, go off all your meds & we'll see what happens". I relapsed. But I am odd, my CRP often doesnt reflect my active disease. I was in agony again and was back to my Specialist. He told me it was all in my head, because my CRP was within normal limits and did a sigmoidoscopy and said my bowel was "pristine". I ended up having to pay for a private specialist. He watched my weekly bloods and when he saw a small shift he got me straight in for an endoscope & colonscopy & biopsies which came back as Crohn's Disease - large bowel, worse effected was the Transverse Colon. (The 'siggy' just hadnt gone far enough!)
Since then I've been on Azathioprine, (fatigue came off) then 6-MP & Pentasa had me in remission since 2010, but Nov last year the 6-MP started damaging my liver so I had to come off it. I was off all meds for 3 mths waiting for things to stablise and during that time I stayed in remission, i actually felt more energetic the longer I was off the 6-MP & managed to keep my fitness up and walk up to 34km! (I was training for Oxfam 100km walk) Then HELLO! a relapse! back in hospital. Nothing major but entire bowel is ulcerated. I am currently on Prednisone reducing dose...& the Oxfam walk has been canned.
My specialist says I am running out of options. I have been approved Humira but with a family history of cancer on both sides (breast x 4, prostate, pancreatic, stomach, cervical x 2) I am really scared about the cancer risk & that I will regret going on it. I have even been thinking perhaps I should just get an Colectomy just to avoid the risk! My Specialist thinks this would be drastic as my bowel is "bad" but not as bad as others. At the moment I actually feel pretty good, I am working full-time...
I just wanna be around for my kids as long as I can! I am so frightened and confused and I cannot believe that things can change so quickly.... I have been enjoying great health for 3 years. Has anyone else elected to have their bowel out and if so did the disease come back elsewhere? My specialist said it would be rare if it did since it is ltd to my large intestine.
I have so many questions...
I'm 39 & live in NZ. I think I possibly developed Crohns in my teens/early twenties but it wasn't diagnosed till after my second baby at 33 yrs. When I was pregnant with my first in 1999 I developed what was thought to be a bartolins abscess but it had tunnelled to? my bowel and so it required unorthodox surgery, I required this op twice during that pregnancy, once at 12wks, once at 20wks, despite being told in ER I might lose my bub during that op, I had a healthy baby boy who is now 13. <3 In my early twenties I kept getting told i had "IBS", i had barium enemas and sigmoidoscopies done and nothing was revealed. It wasn't until at age 32, I had what was thought to be 4 wks of extreme gastro, with joint-pain, a swollen ankle that could barely bare weight, about 6kg weight loss and the beginnings of a septic looking rash all over my buttocks and tummy that I ended up in the ER & on standby to have my bowel out! Luckily for me I responded to everything that was thrown at me (steroids, electrolytes, anti-biotics) and I kept my bowel. After this initial shocking diagnosis (back then they said UC), (I am the one in the family who is the health freak! Ex-vegetarian, non-smoker, fitness enthusiast, known to eat spinach for breakfast...& at the time was training to be a Herbalist/Naturopath!) I was really proactive, totally changed my diet (Eat Right 4 Your Type) and took fish oil etc and with the steroids I got well really quickly, my Dr took another look in my bowel and said - "I think we made a mistake, I dont think you have IBD at all, go off all your meds & we'll see what happens". I relapsed. But I am odd, my CRP often doesnt reflect my active disease. I was in agony again and was back to my Specialist. He told me it was all in my head, because my CRP was within normal limits and did a sigmoidoscopy and said my bowel was "pristine". I ended up having to pay for a private specialist. He watched my weekly bloods and when he saw a small shift he got me straight in for an endoscope & colonscopy & biopsies which came back as Crohn's Disease - large bowel, worse effected was the Transverse Colon. (The 'siggy' just hadnt gone far enough!)
Since then I've been on Azathioprine, (fatigue came off) then 6-MP & Pentasa had me in remission since 2010, but Nov last year the 6-MP started damaging my liver so I had to come off it. I was off all meds for 3 mths waiting for things to stablise and during that time I stayed in remission, i actually felt more energetic the longer I was off the 6-MP & managed to keep my fitness up and walk up to 34km! (I was training for Oxfam 100km walk) Then HELLO! a relapse! back in hospital. Nothing major but entire bowel is ulcerated. I am currently on Prednisone reducing dose...& the Oxfam walk has been canned.
My specialist says I am running out of options. I have been approved Humira but with a family history of cancer on both sides (breast x 4, prostate, pancreatic, stomach, cervical x 2) I am really scared about the cancer risk & that I will regret going on it. I have even been thinking perhaps I should just get an Colectomy just to avoid the risk! My Specialist thinks this would be drastic as my bowel is "bad" but not as bad as others. At the moment I actually feel pretty good, I am working full-time...
I just wanna be around for my kids as long as I can! I am so frightened and confused and I cannot believe that things can change so quickly.... I have been enjoying great health for 3 years. Has anyone else elected to have their bowel out and if so did the disease come back elsewhere? My specialist said it would be rare if it did since it is ltd to my large intestine.
I have so many questions...
