- Joined
- Mar 7, 2021
- Messages
- 5
Let me first start by saying I’ve been a lurker here for a good while but today I finally decided to post as I’m full of horrible anxiety awaiting my pill cam results.
I’m 33 years old and a new father of an amazing baby boy here has been my journey so far. I wonder if anyone else here can relate or share some advice as well.
I have been suffering from horrible issues with my bowels since I was about 15 years old or so. My parents have not really taken me to a doctors because they thought it was just “what I was eating”.
In 2018 I had my first colonoscopy only because of my fathers history of colon cancer. I also had the procedure because I was bleeding when going to the bathroom and also constant diaherra. I did the tests and they found lesions in my bowel which the doctor said and I’m not joking “you just have hard poop”. I’m personally still laughing about this because I haven’t had a solid stool movement for months.
Needless to say I changed doctors.
Also in between the time and even before 2018 I had 31 kidney stones through my life and on those cat scans it did show there was something going on with my bowels
Fast forward to 2020 where my primary care doctor recommended for me to have another colonoscopy. This time things are way different. They found Friable (with contact bleeding) and ulcerated mucosa at the ileocecal valve (copied from my medical record).
Just because of my all my symptoms and issues. My new GI doctor has soft diagnosed me with CD.
This is where all the fun begins. They started me on pentasa 500mg twice, three times a day. After a few weeks no control over my symptoms (diaherra, bloating, constipation, extreme fatigue, feeling sick without fever, nausea. The list goes on).
Also noted I do have very low iron and b12 as well.
She starts to second guess her diagnosis and then does a calproctin test. Which came back elevated at 170. Even after that she is still fighting it being IBD.
They send me for another colonoscopy and endoscopy.. this time it’s normal. Which at this time she is still confused on if it’s Crohn’s disease or not.
I am in the mean time sent to a rheumatologist because I have been also having extreme back pains as well and they think it might be related to CD as well. The doctor ordered a massive amount of blood work and a HLA-B27 test which came back positive. The doctor wanted to start my on humira but said “I want to consult with GI first”.
Which now I felt I am going no where with actually getting me on proper treatments. Also I’m so confused because of all my tests, there is a ton of evidence towards its.
So here is where I am at today. I had an MRE appointment to find if there was any strictures which luckily there wasn’t. my Pill cam procedure on Tuesday and awaiting the results.
I am hoping they can get me proper treatment already because I’m starting to lose my mind.
Honestly I’ve been straight forward with my doctor telling her this is really hard to deal with and it’s really starting to be a massive burden on my life. Where I’m sometimes in the bathroom 15+ times a day and I have almost been fired from jobs over it.
I’m 33 years old and a new father of an amazing baby boy here has been my journey so far. I wonder if anyone else here can relate or share some advice as well.
I have been suffering from horrible issues with my bowels since I was about 15 years old or so. My parents have not really taken me to a doctors because they thought it was just “what I was eating”.
In 2018 I had my first colonoscopy only because of my fathers history of colon cancer. I also had the procedure because I was bleeding when going to the bathroom and also constant diaherra. I did the tests and they found lesions in my bowel which the doctor said and I’m not joking “you just have hard poop”. I’m personally still laughing about this because I haven’t had a solid stool movement for months.
Needless to say I changed doctors.
Also in between the time and even before 2018 I had 31 kidney stones through my life and on those cat scans it did show there was something going on with my bowels
Fast forward to 2020 where my primary care doctor recommended for me to have another colonoscopy. This time things are way different. They found Friable (with contact bleeding) and ulcerated mucosa at the ileocecal valve (copied from my medical record).
Just because of my all my symptoms and issues. My new GI doctor has soft diagnosed me with CD.
This is where all the fun begins. They started me on pentasa 500mg twice, three times a day. After a few weeks no control over my symptoms (diaherra, bloating, constipation, extreme fatigue, feeling sick without fever, nausea. The list goes on).
Also noted I do have very low iron and b12 as well.
She starts to second guess her diagnosis and then does a calproctin test. Which came back elevated at 170. Even after that she is still fighting it being IBD.
They send me for another colonoscopy and endoscopy.. this time it’s normal. Which at this time she is still confused on if it’s Crohn’s disease or not.
I am in the mean time sent to a rheumatologist because I have been also having extreme back pains as well and they think it might be related to CD as well. The doctor ordered a massive amount of blood work and a HLA-B27 test which came back positive. The doctor wanted to start my on humira but said “I want to consult with GI first”.
Which now I felt I am going no where with actually getting me on proper treatments. Also I’m so confused because of all my tests, there is a ton of evidence towards its.
So here is where I am at today. I had an MRE appointment to find if there was any strictures which luckily there wasn’t. my Pill cam procedure on Tuesday and awaiting the results.
I am hoping they can get me proper treatment already because I’m starting to lose my mind.
Honestly I’ve been straight forward with my doctor telling her this is really hard to deal with and it’s really starting to be a massive burden on my life. Where I’m sometimes in the bathroom 15+ times a day and I have almost been fired from jobs over it.
