- Joined
- Dec 12, 2014
- Messages
- 3
My is daughter, Emma is 13 years old. She was diagnosed with Crohn's Disease when she was 9 years, but had symptom since she was 7 years old. She has been in this long painful journey that has seems to be endless. She has never been in remission. She is being seen at UCSF IBD Clinic. They have put her on several different medications over the last years. One of the confusing things, is her blood and stools tests always come back normal.
So, this year, about last March Emma was experiencing extreme pain more then ever. Her doctor and nurse kept saying it was IBS as well as Crohn's. The months went by and nothing was getting better. I kept bugging the her nurse and finally they decided to do a colonoscopy and endoscopy in May. The result was thousands of ulcers from her above her ileum to her anus. This shock was a to the doctor because all of the tests they have been running have came back normal. He decided to start her on 5mg of Remicade starting in June. She seemed to feel a little better after receiving treatments, but it would only last for a week after the treatment. By August she was going to receive remicade every eight weeks. Well just after four weeks she got really sick. So they ran general labs and her ast/alt for her liver enzymes her high. The doctor then decide to increase her remicade to 10mg every and to receive treatment once a month. That started in October. Emma has received two monthly treatments so far, and her liver enzymes are still slightly high, but not worry some. (I guess, the doc doesn't seem to be). They also did a Prometheus test and it showed she has a high volume of remicade is her blood/ 0 antibodies and they can not give her anymore. She is also taking 25mg of Imuran (which can not handle more) The doctor started her on this because her Crohn's symptoms were getting worse; such as increase in mouth sores, rashes, joint pain, ect.
Now, here she is. Last treatment was November 24th, but this time she did not feel better at all after. Liver enzymes are still slightly high, but everything else normal like anyways. Two weeks ago she start to have blood in her stool. Last week she start to feel a lot of pain, so the doctor did some stool tests. They always want to rule out other illnesses. So, we an appointment this coming Monday. Oh I forgot to mention we live five hours away from her doctor. So we mostly communicate over the phone. Her stool test came back negative so she doesn't have another illness. They also did a Calprotectin that did come back normal.
This is what I am affraid of and keep questioning
1) the doctors are still going to press this IBS thing. I feel that the only stress in her life is this disease.
2) I read while on remicade sometimes test can read falsely and Calprotectin is one of those. Should I request the doctor to retest her.
3) should she have another colonoscopy. That is what we did last time. It seemed to answer questions.
4) what other questions should I be asking the doctor?
I know this is rather long, but I appreciate your time
I am so grateful to find this forum and am looking forward to getting advice, and hope I can give some back along they way. Thank you
So, this year, about last March Emma was experiencing extreme pain more then ever. Her doctor and nurse kept saying it was IBS as well as Crohn's. The months went by and nothing was getting better. I kept bugging the her nurse and finally they decided to do a colonoscopy and endoscopy in May. The result was thousands of ulcers from her above her ileum to her anus. This shock was a to the doctor because all of the tests they have been running have came back normal. He decided to start her on 5mg of Remicade starting in June. She seemed to feel a little better after receiving treatments, but it would only last for a week after the treatment. By August she was going to receive remicade every eight weeks. Well just after four weeks she got really sick. So they ran general labs and her ast/alt for her liver enzymes her high. The doctor then decide to increase her remicade to 10mg every and to receive treatment once a month. That started in October. Emma has received two monthly treatments so far, and her liver enzymes are still slightly high, but not worry some. (I guess, the doc doesn't seem to be). They also did a Prometheus test and it showed she has a high volume of remicade is her blood/ 0 antibodies and they can not give her anymore. She is also taking 25mg of Imuran (which can not handle more) The doctor started her on this because her Crohn's symptoms were getting worse; such as increase in mouth sores, rashes, joint pain, ect.
Now, here she is. Last treatment was November 24th, but this time she did not feel better at all after. Liver enzymes are still slightly high, but everything else normal like anyways. Two weeks ago she start to have blood in her stool. Last week she start to feel a lot of pain, so the doctor did some stool tests. They always want to rule out other illnesses. So, we an appointment this coming Monday. Oh I forgot to mention we live five hours away from her doctor. So we mostly communicate over the phone. Her stool test came back negative so she doesn't have another illness. They also did a Calprotectin that did come back normal.
This is what I am affraid of and keep questioning
1) the doctors are still going to press this IBS thing. I feel that the only stress in her life is this disease.
2) I read while on remicade sometimes test can read falsely and Calprotectin is one of those. Should I request the doctor to retest her.
3) should she have another colonoscopy. That is what we did last time. It seemed to answer questions.
4) what other questions should I be asking the doctor?
I know this is rather long, but I appreciate your time
I am so grateful to find this forum and am looking forward to getting advice, and hope I can give some back along they way. Thank you
