Hi, I am new here so but wonder if anyone can shed some light on my situation.
Unsure if I have posted in the correct forum so please bear with me.
My story began a year ago with a horrendous thigh abscess and followed with a string of bizarre symptoms. First was a pain in left kidney area and severe constipation which at times was so bad, brought on nosebleeds. Next I started passing white tissue (have been told by a urologist it was epithelium), then urinary casts. I saw a gastroenterologist in January who was very concerned and told me he strongly suspected a fistula and started a battery of tests.
After the CT scan, which showed inflammation in last 10cm of terminal ileum, I had a colonoscopy. I immediately started passing lots of bubbles in my urine which lasted for months. They saw apthous ulcers in the TI but biopsies showed non-specific inflammation I believe. Then came vaginal discharge(sorry, very embarrassing but feel I need to give the full picture) and passing air there too.
I have had CT, MRI, cystoscopy etc but a fistula hasn't been seen despite 2 gastro's, surgeon and urologist believing there was one. I have seen a couple of docs now and still undergoing tests for Crohn's.
I have been to and fro the hospital for months and admitted twice, ?perforation ?obstruction. Gastro thinks my bowel is not working and causing severe constipation despite taking 3 types of laxatives numerous times a day to prevent impaction again! He repeated my colonoscopy a few weeks ago, hopefully never to be repeated it was sooo painful and remember it all! On the day he said I had patchy erythema through right colon and some of transverse and took numerous biopsies. I went for results today and he wasn't there so saw another doc...he said biopsies did not show Crohn's and there wasn't inflammation in colon although that's not what the other guy said on the day. They couldn't get into the terminal ileum he said this time.
The pain has more recently been all right sided and is awful..even very sore to touch. I have been in so much pain now for about a year. He told me today that I now have to have a wireless capsule test for Crohn's...the recent MRI didn't show much.
He also said it could still be Crohn's but don't understand really as never had weight loss or diarrhoea which I always thought were the symptoms.
This has all been so stressful and feel bad posting this as you guys all have such a hard time that this will probably sound nothing in comparison. I have been off work since April and just want to feel well again. The urinary symptoms are a bit better and see uro next week again and I am glad but am so confused at all that has gone on. Don't know what to think...just bad constipation? surely it couldn't have caused all this or is Crohn's a possibility? Also, where I had abscess started leaking again a couple of months ago and gastro said it was actually ?Supurativa something.
My head is spinning with it all.
Apologies for having gone on so long and have probably not remembered everything :smile:
Thanks folks,
Les x
Unsure if I have posted in the correct forum so please bear with me.
My story began a year ago with a horrendous thigh abscess and followed with a string of bizarre symptoms. First was a pain in left kidney area and severe constipation which at times was so bad, brought on nosebleeds. Next I started passing white tissue (have been told by a urologist it was epithelium), then urinary casts. I saw a gastroenterologist in January who was very concerned and told me he strongly suspected a fistula and started a battery of tests.
After the CT scan, which showed inflammation in last 10cm of terminal ileum, I had a colonoscopy. I immediately started passing lots of bubbles in my urine which lasted for months. They saw apthous ulcers in the TI but biopsies showed non-specific inflammation I believe. Then came vaginal discharge(sorry, very embarrassing but feel I need to give the full picture) and passing air there too.
I have had CT, MRI, cystoscopy etc but a fistula hasn't been seen despite 2 gastro's, surgeon and urologist believing there was one. I have seen a couple of docs now and still undergoing tests for Crohn's.
I have been to and fro the hospital for months and admitted twice, ?perforation ?obstruction. Gastro thinks my bowel is not working and causing severe constipation despite taking 3 types of laxatives numerous times a day to prevent impaction again! He repeated my colonoscopy a few weeks ago, hopefully never to be repeated it was sooo painful and remember it all! On the day he said I had patchy erythema through right colon and some of transverse and took numerous biopsies. I went for results today and he wasn't there so saw another doc...he said biopsies did not show Crohn's and there wasn't inflammation in colon although that's not what the other guy said on the day. They couldn't get into the terminal ileum he said this time.
The pain has more recently been all right sided and is awful..even very sore to touch. I have been in so much pain now for about a year. He told me today that I now have to have a wireless capsule test for Crohn's...the recent MRI didn't show much.
He also said it could still be Crohn's but don't understand really as never had weight loss or diarrhoea which I always thought were the symptoms.
This has all been so stressful and feel bad posting this as you guys all have such a hard time that this will probably sound nothing in comparison. I have been off work since April and just want to feel well again. The urinary symptoms are a bit better and see uro next week again and I am glad but am so confused at all that has gone on. Don't know what to think...just bad constipation? surely it couldn't have caused all this or is Crohn's a possibility? Also, where I had abscess started leaking again a couple of months ago and gastro said it was actually ?Supurativa something.
My head is spinning with it all.
Apologies for having gone on so long and have probably not remembered everything :smile:
Thanks folks,
Les x