- Joined
- Mar 1, 2014
- Messages
- 57
So I have a few questions for you:
1) were you diagnosed before or after you were diagnosed with crohn's? how were you diagnosed?
2) what are your main symptoms?
3) how can you tell if you are flaring from the fibro or CD?
R has been flaring since December. His GI put him on a course of flagyl and Zithromax in January to try to calm things down while we waited for the results of his Imuran levels (which were way out of therapeutic range). R's main symptoms have always been mild (diarrhea 1-3 times/day, growth delay, mild fatigue) and suddenly he started to experience abdominal pain and stinging/numbness in his index and middle fingers that came and went. We discontinued the antibiotics Feb 12/14 and R had his scopes Feb 13/14 which revealed severe inflammation and ulceration in his TI. We started MTX and Remicade Feb 15/15 and iron infusions Feb 18/15. After 2 loading doses of remicade R's pain has only gotten worse. The stinging/numbness is now in all of his fingers and varies in severity but never goes away. His skin is super sensitive to the touch and he says that his toes burn and feel like they are blowing up but has no visible swelling. He has occasional low grade fevers and complains daily of headaches, that his joints and muscles ache on the inside and literally says he hurts everywhere. His diarrhea has disappeared to a stool pattern that is all over the place (one day he will go 3 times ranging from firm to loose, and then he will go 5 days between the next, and then once every 2 days). The pain in his stomach (umbilical region) is always his top pain which he describes as someone pulling and tearing his guts. It is always worse in the morning, late afternoon/evening and R says it is actually a little worse right after a BM. We added 40mg of prednisone and had 0 effect after 10 days so we met with GI again and decided to taper. GI is no longer convinced that we are dealing with 'just' a CD flare and thinks there might be something more going on. R's bloodwork is perfect and his energy has actually picked up a little since the iron infusions which makes him all the more unhappy that he doesn't feel up to much.
He has seen a neurologist and know that it is not a result of any nerve damage that they could find. We have a referral into a rheumatologist.
1) were you diagnosed before or after you were diagnosed with crohn's? how were you diagnosed?
2) what are your main symptoms?
3) how can you tell if you are flaring from the fibro or CD?
R has been flaring since December. His GI put him on a course of flagyl and Zithromax in January to try to calm things down while we waited for the results of his Imuran levels (which were way out of therapeutic range). R's main symptoms have always been mild (diarrhea 1-3 times/day, growth delay, mild fatigue) and suddenly he started to experience abdominal pain and stinging/numbness in his index and middle fingers that came and went. We discontinued the antibiotics Feb 12/14 and R had his scopes Feb 13/14 which revealed severe inflammation and ulceration in his TI. We started MTX and Remicade Feb 15/15 and iron infusions Feb 18/15. After 2 loading doses of remicade R's pain has only gotten worse. The stinging/numbness is now in all of his fingers and varies in severity but never goes away. His skin is super sensitive to the touch and he says that his toes burn and feel like they are blowing up but has no visible swelling. He has occasional low grade fevers and complains daily of headaches, that his joints and muscles ache on the inside and literally says he hurts everywhere. His diarrhea has disappeared to a stool pattern that is all over the place (one day he will go 3 times ranging from firm to loose, and then he will go 5 days between the next, and then once every 2 days). The pain in his stomach (umbilical region) is always his top pain which he describes as someone pulling and tearing his guts. It is always worse in the morning, late afternoon/evening and R says it is actually a little worse right after a BM. We added 40mg of prednisone and had 0 effect after 10 days so we met with GI again and decided to taper. GI is no longer convinced that we are dealing with 'just' a CD flare and thinks there might be something more going on. R's bloodwork is perfect and his energy has actually picked up a little since the iron infusions which makes him all the more unhappy that he doesn't feel up to much.
He has seen a neurologist and know that it is not a result of any nerve damage that they could find. We have a referral into a rheumatologist.
