HELP Crohn’s Flare 10 months 10 steps forward 20 Back
I was diagnosed with Crohn’s at 20 I was hospitalized multiple times until 28. I was very lucky to have my 2 girls but with a lot of difficulty.
Crohn’s was in the colon and by the ileum...at 28 I was in remission for almost 20 years. No medicines ever at that time but predizone.
In 2013 I kept putting on weight I was 44 and never had weight issues and my original GI Doctor passed years ago. So I never had a new GI almost thinking maybe was misdiagnosed. (Wishful Thinking)
In 2013 i has a colonoscopy it showed activity only by pathology not visible. I never went further or asked questions and should have.
An MRI showed scare tissue by the ileum. Again nothing went further up I felt like a hard bowling ball was stuck in my stomach.
2017 August 27 I started to get violently ill throwing up, diarrhea and severe migraines. Went into GI office and started working with the PA she was wonderul. Had a colonoscopy again visible looked good but pathology showed cryptic abscess. (Sp) and a hiatal hernia with inflammation in my stomach. SED rate was normal even though I was in extreme pain.
Within 1 month:
1. Could not get out of bed bruises around all my joints
2. SED rate went high
3. Liver count went to almost 800
4. Migrants so severe I had to be an a dark room
5. Nausea constantly
6. Lipase count elevated
7. Lost 35 pounds
Now I was turned over to the GI Doctor not his Assistant but I didn’t have my past records at first but so he didn’t put me on anything strong until he was convinced that it wasn’t anything else. (After he confirmed diagnosis with RH it was confirmed he agreed Crohn’s) that exact visit I brought my old records and the Crohn’s was exactly in the same spots he said. But ironically the Genetic test was negative and we all dismissed that one.
Thank goodness the ER room put me on prednisone immediately I couldn’t walk in the interim until all tests confirmed Crohn’s and I started feeling relief...
Currently I am on:
1. Humira weekly
2. Entocort 9 mg daily
3. Imuran 100 daily
4. Bentyl 40 mg daily
5. Nausea pills as needed
6. Align probiotics daily
Started feeling amazing eating small portions took all fried foods, soda, processed out of my life. Only eat 3-6oz meat at a sitting an never eat more than 8 oz total.
I went back to work feeling amazing and I got the hard ball in my stock again, extreme pain in my lower left side location specifically under my belly button approx 2 inches and at a 45 degree angle. I have had my appendix out and a full hysterectomy with bladder lift at 40, it elimates anything else could the mesh cause this irritation or is it just my Crohn’s?
Last 3 days in bed first night violently sick in the bathroom with diarrhea and very nauseous. Temp only at 99.5 I have been putting heat on my side and the migraines are starting again along with nauseous feeling. The doctor said to be on clear liquids and watch my temp closely and go to ER if rises or continues.
I am not understanding WHY with all the medicines and started feeling so good again this is happening.
Does anyone have any suggestions I am so active usually and never missed work like this...I am in tears typing this.
I was diagnosed with Crohn’s at 20 I was hospitalized multiple times until 28. I was very lucky to have my 2 girls but with a lot of difficulty.
Crohn’s was in the colon and by the ileum...at 28 I was in remission for almost 20 years. No medicines ever at that time but predizone.
In 2013 I kept putting on weight I was 44 and never had weight issues and my original GI Doctor passed years ago. So I never had a new GI almost thinking maybe was misdiagnosed. (Wishful Thinking)
In 2013 i has a colonoscopy it showed activity only by pathology not visible. I never went further or asked questions and should have.
An MRI showed scare tissue by the ileum. Again nothing went further up I felt like a hard bowling ball was stuck in my stomach.
2017 August 27 I started to get violently ill throwing up, diarrhea and severe migraines. Went into GI office and started working with the PA she was wonderul. Had a colonoscopy again visible looked good but pathology showed cryptic abscess. (Sp) and a hiatal hernia with inflammation in my stomach. SED rate was normal even though I was in extreme pain.
Within 1 month:
1. Could not get out of bed bruises around all my joints
2. SED rate went high
3. Liver count went to almost 800
4. Migrants so severe I had to be an a dark room
5. Nausea constantly
6. Lipase count elevated
7. Lost 35 pounds
Now I was turned over to the GI Doctor not his Assistant but I didn’t have my past records at first but so he didn’t put me on anything strong until he was convinced that it wasn’t anything else. (After he confirmed diagnosis with RH it was confirmed he agreed Crohn’s) that exact visit I brought my old records and the Crohn’s was exactly in the same spots he said. But ironically the Genetic test was negative and we all dismissed that one.
Thank goodness the ER room put me on prednisone immediately I couldn’t walk in the interim until all tests confirmed Crohn’s and I started feeling relief...
Currently I am on:
1. Humira weekly
2. Entocort 9 mg daily
3. Imuran 100 daily
4. Bentyl 40 mg daily
5. Nausea pills as needed
6. Align probiotics daily
Started feeling amazing eating small portions took all fried foods, soda, processed out of my life. Only eat 3-6oz meat at a sitting an never eat more than 8 oz total.
I went back to work feeling amazing and I got the hard ball in my stock again, extreme pain in my lower left side location specifically under my belly button approx 2 inches and at a 45 degree angle. I have had my appendix out and a full hysterectomy with bladder lift at 40, it elimates anything else could the mesh cause this irritation or is it just my Crohn’s?
Last 3 days in bed first night violently sick in the bathroom with diarrhea and very nauseous. Temp only at 99.5 I have been putting heat on my side and the migraines are starting again along with nauseous feeling. The doctor said to be on clear liquids and watch my temp closely and go to ER if rises or continues.
I am not understanding WHY with all the medicines and started feeling so good again this is happening.
Does anyone have any suggestions I am so active usually and never missed work like this...I am in tears typing this.
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