Hi, I am new to forums, so you guys will have to help me. I am having a flare, so I've been looking for some support.
I was diagnosed with Crohn's at 13 months , but after the initial flare it was controlled with Pentasa for more than 10 years until I was 11. When I didn't gain any weight for a year my GI doc tried having me supplement my diet with extra calories. Unfortunately the way he decided to do that was to have me drink a milkshake each night, even though I had a history of a milk protein allergy. I ended up getting gastrointestinal reflux, which he then prescribed Prilosec for. I had an adverse reaction to the proton-pump inhibitor and developed severe stomach cramps with two different PPIs.
We stopped the Prilosec and my GI doc scheduled a scope at CHOP. Only the biopsy showed inflammation and what we saw was minimal. At this point the abdominal pain I was experiencing was inflammation, but the scope didn't show enough inflammation to make sense of the pain. Even though my doc knew I had Crohn's and that I could have inflammation in my small intestine as well, he treated my Crohn's like I only had inflammation in the places the scope showed.
When that course of treatment didn't resolve my pain he tried Prednisone and Entocort. After I had been on these for a while we attempted to taper, supposedly because my GI track had hopefully been able to heal by then. Unfortunately it hadn't and tapering caused me significant pain. We tried to taper anyway, but every time I just felt worse.
We weren't happy with the care we were receiving from CHOP so we switched to AI Dupont. My new GI doc had me do another scope and the results were the same. Eventually we tried a white blood cell scan and finally saw the significant irritation in my small intestine. I was put on Remicade and 6mp. The 6mp messed with my liver so we stopped it. For a while the Remicade worked great, but wasn't taking care of everything, so we tried adding methotrexate to my medicinal cocktail. It was looking really good for a while but then I got really dizzy. We are in the process of attempting to transfer to Humira.
Ok, I think I got all that right. It's been more than a year now since it was obvious this was a Crohn's flare. I have had 2 scopes, 2 white blood cell scans, been on an elemental diet for 3 months, and tried almost everything. If Humira doesn't work, I probably will need to try trial medications.
I don't have much of a life any more. I can hardly go anywhere anymore because of the pain and even though I have been having pain for months, my GI doc still doesn't want to do any narcotics, even though nothing else we have tried works. We have tried anti-cramping meds and lots of non-narcotic pain meds. I have been on the Pred so long I am developing steroid toxicity.
I am so sick of this and I am really ticked off at my GI doc. It feels like none of the GI docs are listening to me. I am not making this pain up, people! All of you must understand how painful and debilitating IBD can be. I can't go anywhere without a wheelchair at this point! We shouldn't have to lose our lives while attempting to treat this. I spent the last month on a mattress on the floor of our family room! I understand that they want to treat the cause, not the symptoms, but I can't do anything. I hope you guys understand how I feel.
I was diagnosed with Crohn's at 13 months , but after the initial flare it was controlled with Pentasa for more than 10 years until I was 11. When I didn't gain any weight for a year my GI doc tried having me supplement my diet with extra calories. Unfortunately the way he decided to do that was to have me drink a milkshake each night, even though I had a history of a milk protein allergy. I ended up getting gastrointestinal reflux, which he then prescribed Prilosec for. I had an adverse reaction to the proton-pump inhibitor and developed severe stomach cramps with two different PPIs.
We stopped the Prilosec and my GI doc scheduled a scope at CHOP. Only the biopsy showed inflammation and what we saw was minimal. At this point the abdominal pain I was experiencing was inflammation, but the scope didn't show enough inflammation to make sense of the pain. Even though my doc knew I had Crohn's and that I could have inflammation in my small intestine as well, he treated my Crohn's like I only had inflammation in the places the scope showed.
When that course of treatment didn't resolve my pain he tried Prednisone and Entocort. After I had been on these for a while we attempted to taper, supposedly because my GI track had hopefully been able to heal by then. Unfortunately it hadn't and tapering caused me significant pain. We tried to taper anyway, but every time I just felt worse.
We weren't happy with the care we were receiving from CHOP so we switched to AI Dupont. My new GI doc had me do another scope and the results were the same. Eventually we tried a white blood cell scan and finally saw the significant irritation in my small intestine. I was put on Remicade and 6mp. The 6mp messed with my liver so we stopped it. For a while the Remicade worked great, but wasn't taking care of everything, so we tried adding methotrexate to my medicinal cocktail. It was looking really good for a while but then I got really dizzy. We are in the process of attempting to transfer to Humira.
Ok, I think I got all that right. It's been more than a year now since it was obvious this was a Crohn's flare. I have had 2 scopes, 2 white blood cell scans, been on an elemental diet for 3 months, and tried almost everything. If Humira doesn't work, I probably will need to try trial medications.
I don't have much of a life any more. I can hardly go anywhere anymore because of the pain and even though I have been having pain for months, my GI doc still doesn't want to do any narcotics, even though nothing else we have tried works. We have tried anti-cramping meds and lots of non-narcotic pain meds. I have been on the Pred so long I am developing steroid toxicity.
I am so sick of this and I am really ticked off at my GI doc. It feels like none of the GI docs are listening to me. I am not making this pain up, people! All of you must understand how painful and debilitating IBD can be. I can't go anywhere without a wheelchair at this point! We shouldn't have to lose our lives while attempting to treat this. I spent the last month on a mattress on the floor of our family room! I understand that they want to treat the cause, not the symptoms, but I can't do anything. I hope you guys understand how I feel.
