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Crohn's Disease Forum » Extra Intestinal Manifestations » Abscesses, lesions, and tumors, oh my!


09-22-2012, 11:31 PM   #1
Avw
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Abscesses, lesions, and tumors, oh my!

Oh, where to begin...

I stopped responding to conventional treatments about a year ago, and have been dealing with many abscesses and fistulas all year. During one of my hospital visits, about two months ago, I had a pelvic MRI to locate the abscesses my surgeon couldn't find the old fashioned way. I always ask for copies of my scans, and while looking at them I noticed what appeared to be a "hole" in the center of my thigh bone, where the bone marrow would normally be. I brought it to the attention of my GI and Colorectal Surgeon and requested a bone density test and more scans. They indulged me the bone density scan, probably just to shut me up. I never got the results of this scan since my GI has "done all he can for me" and has basically blown me off.

Fast forward to last week, I'm in Chicago being evaluated for a Stem Cell Transplant. The GI I saw gave me the go ahead for the transplant, but I obviously have to get the abscesses and fistulas under control first. So he orders some more advanced MRI's to assess what's going on in there. (This was done on my last day there, so I had to go home and wait for him to call me with the results)

Got the call Thursday, good news- they located the pain in my ass and will be scheduling me for surgery! Bad news- they found a lot more than we were looking for, including the aforementioned "hole" in the center of my femur, and he insisted I get X-rays done asap to rule out some sort of bone infection. Went to GP's office, got X-rays, didn't see anything... which rules out bone infection.

The report from the MRI in reads:
"A 1.4-cm T2 hyperintense enhancing lesion within the right femoral metaphysis is consistent with a chondroid lesion. Correlate with any history of pain and available radiographs."

I've been researching all weekend, and from what I can gather, a chondroid lesion is a bone tumor. And since the X-rays did not show bone infection, this means the lesion, hole, whatever is some sort of soft tissue which wouldn't show on an X-ray... right? Which basically leaves tumor?

I'm really not freaking out about it because I have to go through chemo for the Stem Cell Transplant anyway, but the uncertainty is bothering me... and it would help immensely to have some feedback so I don't stress too much about it between now and however long it will take to get some concrete answers...

Osteoporosis or something similar would make sense given my family history and years of being on Prednisone, but that would be more consistently spread out, not concentrated in my femur.

Any help or insight would be greatly appreciated! Thanks in advance!
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Diagnosed with CD in 2004 at age 18.

Previous Medications:
Every oral medication,
Remicade,
Humira,
Cimzia, etc..

Currently Taking:
LDN 3 mg
VSL #3
Prednisone 10 mg
Flagyl 1000 mg
Entocort
Protonix
Xanax as needed

Insurance still rejecting appeals for Stem Cell Transplant. Tested positive for JCV Antibody so Tysabri is not an option. Searching for matches in Cord Blood Registry and working with an attorney to fight insurance company. Fingers and toes crossed!
09-26-2012, 06:43 AM   #2
vanilla_chai
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Wow, I'm so sorry. I don't have experience with anything this advanced so I'm afraid I'm not any help

I hate the not knowing and just wanted to say I feel for you: (

2
09-26-2012, 09:46 AM   #3
David
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I don't have any insight either but wanted to send good vibes your way. That must be a bit scary

*hugs*
09-26-2012, 05:28 PM   #4
Avw
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Thanks for your support guys. Looks like this tumor may be a good thing after all. My insurance (who had already approved my transplant) just called to tell me it was a mistake and it had been denied, because it is still investigational for autoimmune disorders.

Well, lucky me! It's not investigational for cancer!
Blue Cross can go put that in their juice box and suck it!

(Excuse the rant, just trying to find a funny side to all this nonsense.)
09-26-2012, 05:32 PM   #5
vanilla_chai
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Wow, its crazy what can turn out for the better!

Hope it all works out
09-27-2012, 05:42 AM   #6
Kip1
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Hi I am sorry you are having so much trouble.

Mum had something similar with bone issue diagnosed when she was in her 30's. Apparently it was caused by high doses of pred for over 25 years. she was told that unless they could reduce the amount successfully she may end up crippled.
Luckily at 58 she is neither crippled or on pred but she will need a hip replacement & does have osteoporosis although she can still walk without much pain.

I do hope whatever they find can be sorted & that you are able to find relief from your symptoms.
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10-06-2012, 11:11 AM   #7
Mark. M
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My disease took a similar trajectory to yours I think. Dozens of abscesses and fistulas that look like spaghetti junction. What happened to me is those fistulas began to track back into my pelvis toward my spine, which in turn began to fill up and become abscesses - but with no where to drain. They got to the point they were touching the bone, and I almost got a bone infection. It seems like maybe a fistula of yours has tracked it's way to a bone?

I ended up getting a colostomy because apparently if the bone becomes infected you're screwed. Since then i've had no abscesses and everything has gotten slowly better. Have you considered this? It might be that the end of your bowel just needs to rest? I'm also on LDN which is working a treat. This time last year I was almost going to end up having everything from my anus to half way up my small bowel out, and now everything is healing up nicely and i'm in remission.

Sorry to hear about all the buggering around you are facing with your doctors and insurance. I don't know if anything i've said has been helpful.
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