• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

I'm new here - some advice please

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
 
So sorry you've been through so much. Fistulas can be difficult to identify but definitely suggest Crohn's. Sometimes a dye test is done -did they ever do or suggest one?

Inflammation and ulcers of the ileum are very suggestive of Crohn's. Bad constipation doesn't cause that. When you say the biopsies didn't show Crohn's I'm wondering if they showed inflammation consistent with Crohn's but did not show granulomas. Granulomas help doctors make the diagnosis of Crohn's but many people with Crohn's do not have granulomas on biopsy.When present, granulomas are extremely helpful in securing the diagnosis of Crohn disease, but they are absent in 50-60% of cases.

"When present, granulomas are extremely helpful in securing the diagnosis of Crohn disease, but they are absent in 50-60% of cases."
http://www.crohnsforum.com/showthread.php?t=38388

Is your doctor an IBD doctor?
 
Hey there.

I am sorry you going through all this. I hope your doctors can figure this out for you. Maybe the pill camera will give you more answers. Did the urologist look inside your bladder? He would likely see a fistula when looking inside I would think ( not sure though). Do you have pain in your bladder? I have a disease called Interstitial Cystitis. I also get the skin looking flakes In my pee when I am in a flare. It is the inflammation from the IC that causes this from what my uro told me.

I mean something is definitely going on. If your doctor does not come up with anything, maybe look into getting a second opinion if possible. Hope you get some answers and help soon...
 
Cystoscopy, looking in the bladder with a scope, can definitely miss fistulas. The dye study is called an excretory cystogram (see below).


How is bladder fistula diagnosed?
Bladder fistula is diagnosed by the use of an excretory urogram, which is an X-ray examination of the bladder. An excretory urogram study uses a contrast dye to enhance the X-ray images. The dye is injected into the patient's system, and its progress through the urinary tract is then recorded on a series of quickly captured images. The examination enables the radiologist to review the anatomy and the function of the bladder and urinary tract. http://www.urologyhealth.org/urology/index.cfm?article=97
 
Hi again and thanks for your replies.
He just said non-specific inflammation and said it was consistent with an active ilieits. He is a gastroenterologist, unsure if ibd.

They looked in my bladder, didn't see a fistula there but then thought there may be one higher up the intestine. The tissue I was passing was pretty large and at first I thought it was pieces of toilet tissue but thinner...was pretty weird! Docs didn't dispute it as I could describe so well and is unusual. Apparently though, they thought they saw a kidney stone but I didn't find this out until my first hospital admission in April.

Also have been having bad night sweats for months but with everything else going on, put it down to pain/weather/coming off other meds etc but weather much cooler now and off meds and still having them. Mentioned them to gastro doc today and he just said it could be a few things but didn't seem very interested. Am just so tired, probably with restless nights but also uncomfortable lying on side in bed and really bad when I try to lie on tummy on right hand side. Just disrupts sleep so bad.

Les x
 

DJW

Forum Monitor
Hi Les. I'm so sorry your going through all of this. Just want you to know you're not alone. Sending you my support and hope for some answers to get you on the road to recovery.
 
Top