A long road... wonder what tomorrow will bring?

So, here I am.

Last year in July I had chronic abdominal pain. Went to the ER and was diagnosed with a 20mm kidney stone. Had a lithotripsy and on my follow up appt with the urologist and said "it still feels like I'm passing fragments of stone" with intermittent bouts of severe abdominal pain. Urologist said it was unlikely, the scans were clear, but give it time.

So I did. In August, when the pain continued I asked my family doctor about a GI consult. I mentioned I had a fistula and a hx of reoccuring anal abcesses and wondered if there may be a relation. He then sent me to a general surgeon.

The general surgeon did a colonoscopy and fistula plug in October. Didn't see any signs of Crohns, but also didn't get a good look due to poor prep (Osmo-Prep- I followed the instructions, but it must not have worked well).

Within a couple of weeks the plug failed. Or so I thought it had and he wasn't sure. It's at this time he says that the drs in my town really aren't equiped to handle my condition, and suggests I see a colo-rectal surgeon.

By this time the abdominal pain was tolerable... until November. Back to the ER with another kidney stone. It was passable, and the pain again went away for awhile. Well, for the majority of the time. So I held of on the colo-rectal surgeon.

In March I found myself in the ER again, I would have put money on another kidney stone, but the test came back negative. So I made the appt with the specialist. I seen him last week.

He wasn't very impressed with the general surgeon, and took about 10 seconds to find out the plug did indeed fail (which, by this time, I knew it had). He is fairly sure with my symptoms that I have Crohns, and he is placing a seton for the fistula and doing another colonoscopy.

If it is Crohn's, he believes it can be handled medically. If not, then he will do a LIFT procedure.

So, tonight I'm drinking Nulytely and living in the bathroom, for yet another
colonoscopy.

Wish me luck that tomorrow that I will have answers. I appreciate any advice you may have for a possible new diagnosis and surviving the seton. From what I read on-line it's not a pleasnt experience.

Hi CT and welcome! Ugh...the dreaded bowel prep. Awful stuff. Hang in there! Hopefully, this colonoscopy will give you the answers you need, and you won't need to have one for a little bit. I hope things go well tomorrow. Please let us know how it goes!

Hi CT and welcome!

Hope the scope went well today.... I don't have much advice for you on fistulas, but there are many people on here with experience with them and with setons so just poke around and you will find lots of information on both.

Are there any other diseases that produce fistulas? I don't know of any others and in my opinion, that is a strong indicator of Crohns.

Let us know how it went today!!

- Amy

Well, the good news is that the CR surgeon ruled out Crohn's. The bad news is that it appears I need to have a surgical procedure to fix the fistula...again.

The seton is in and isn't as bad as I thought, or I'm still under the influence and haven't felt the full effects yet.

Still unsure of what's causing the abdominal issues. May still need to eventually see a GI, but if I control what I eat the pain seems to subside, so maybe I can self regulate it.

The colonoscopy wasn't pleasant. The last one was done under general, but I had an ERCP under sedation before and didn't remember anything. This time is was very uncomfortable and I felt like I couldn't speak... so I just moaned.

CT- I am surprised you haven't seen a GI yet. Where are you located - are you someplace with an NHS?

Glad Crohn's is ruled out but sorry youstill have to deal with the fistula....

- Amy

That is great news you don't have Crohn's! Fistulas aren't easy to deal with, but you will get that fixed in time. My dad had one (he doesn't have Crohn's), and it took quite some time to clear up. I hope you are 100% again soon!!

Yes, that is great news about no Crohn's found. But, I sure know how difficult a fistula and seton can be.

I had the drainage type, which is a loose loop of thread. The other type is a cutting seton which will be tight. I found mine to be unpleasant, but others find them tolerable. Maybe it depends if you're going to the bathroom 15 times a day (like I was).

Now, the colonoscopy only rules out Crohn's in your rectum, colon, and terminal ileum. One can also have crohn's in the small bowel and stomach - out of sight of a colonoscopy.

An EGD test is similar to the colonoscopy, but to check your stomach and duodenum (I've had my issues there). A small bowel follow (xray) through is commonly used to check the small bowel. I am hearing more and more people trying the pill cam, but I've never tried it.

Oh - and next time, insist on being knocked out for the colonoscopy!