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"Inflammation has spread" what does that mean?

Hi everyone! Thank you so much for reading. I wasn't sure if this should go in extra intestinal manifestations, but there wasn't a subforum that applied to this and i'm not sure if it's an EIM or a separate condition that I have, so I put it in here. I've tried to use as many paragraphs as possible so this is easy to read.

I have mild Crohn's in my large intestine in two spots. It started about three years ago. About two years ago I began having problems with sexual function. I went to four different urologists and they were all vague and didn't order any imaging and basically didn't help. They just said that the inflammation in my colon was interfering with nerves in that area because those nerves are all close.

Out of desperation I went to a neurosurgeon thinking maybe he could help. He wasn't able to do anything but he did provide me with some answers. He ordered testing of my lower body nerves (where they shock you and stick you with needles) and MRIs of my pelvis.

The neurosurgeon told me that the shock/needle test came back fine but that the MRI showed that the inflammation had spread to other organs in my pelvis, including my prostate. Finally some answers!

I asked him if stool or anything else was getting out of my colon and coming into contact with those other organs (I have a fistula that has never closed so I thought maybe something was getting out of that hole). He said no and that the inflammation had spread. Those were his exact words.

My questions are: does inflammation literally spread and if so does anyone know how? Or do I have a separate condition affecting my prostate. Was he just not being clear? Or perhaps since he's a neurosurgeon he just doesn't know much about the organs that I am having trouble with? He went on to tell me that a temporary ileostomy may help which is what pretty much every other Dr. I have seen has said (9 Doctors and every PA, NP and RN Ive talked to. I try to ask as many people as many questions as I can even at the risk of being annoying, I think communication is key).

The reason those questions are important to me is because if what's going on in my colon is causing problems in these other organs, then something that is meant to reduce inflammation in my colon (the temp ileo surgery) may help with the other organs. If on the other hand I have separate conditions in my urinary tract, then i'm assuming the surgery wont help.

I don't want to go through with this surgery if it's not going to do me any good, and of course nothing is ever certain. My crohns is definitely mild and I have doubts about the appropriateness of such a major surgery without the presence of pretty serious crohn's, but if it helps with the problems in my urinary tract then I'm all for it. This has gotten to a point where it is seriously effecting my life and I need a solution. One thing I want to say is that im not worried about having the bag or any stigma associated with it. It's the surgery and the possibility that the surgery wont help that I'm worried about.

As of my last colonoscopy a few days ago, it seems that doubling my dose of remicade has helped some. I don't feel different and im not in remission because I still have active disease, but the images from the colonoscopy show a difference. The nurse said my colon appears 85% healthy. The disease is active in 2 areas: one area in my rectum and another area much farther up in my colon.

If you read this far thank you so so much. You've all been helpful in the past. I would sign on here more but it's difficult to even think about this disease I absolutely hate even the thought of it (sorry so negative). I would have my colon removed but since its crohns not colitis, im afraid it would just show up somewhere else. Again I wasn't sure which forum to put this in, it seemed like it could go in 3.


I'm sorry I don't have a decent response but wanted to show my support and bump the thread in the hopes someone can help you.

Why inflammation spreads I have no idea but with autonomic disease the body is possibly attacking itself as it misinterprets the situation.


Super Moderator
Does inflammation literally spread and if so does anyone know how?

In your case you still have two active areas of disease. If inflammation isn’t sufficiently dealt with it will spread and the lengths involved will increase in size. Inflamed tissue will creep into the healthy tissue beside it.
Crohn’s in general is characterised by skip areas and inflammation can spread that way too if not sufficiently treated. Why it does this is anyone’s guess.

Do I have a separate condition affecting my prostate. Was he just not being clear?

Since you have rectal disease I would think that it is highly likely that the issue with your prostate and sexual dysfunction is related to that, as the urologists have suggested.

As you can see from the image above, and would know from prostate examinations, the gland lays in very close proximity to the rectum. With Crohn’s inflammation the bowel becomes swollen and oedematous, the swollen bowel then presses against other structures and organs around it. This in turn causes these to become inflamed and would cause the sort of problems you are having.
A further complication of this type of contact can be fistula’s and abscesses.

A temporary (diversion) stoma can be a useful treatment in your case due to the rectal involvement and with the amount of other issues it is causing it may well be the way to go for you.

Dusty. xxx


It's great to hear that doubling your Remicade is helping a bit, but you may want to talk to your GI about adding an immunosuppressant, as well! Imuran/6mp and Methotrexate are the ones we're usually put on, and it should help in addition to the Remicade to treat your inflammation and help keep you in remission.