re-admit date

So, I am being re-admitted to the Cleveland Clinic next Tuesday. My doctor wants to do another infusion of IVIG. Then he wants to perform a flex. sig.

Depending on what they see in the flex. sig. I may have surgery. It has been almost two years now and I have tried just about every drug possible (short of Remicade).

I have never been in remission.

Doctor said if I do have surgery there are a few options. I could wake up with a colostomy and still have my large bowel (my disease is all located there).

Not sure what purpose this would serve and need him to clarify this more for me.

Or I could wake up and they have removed my large bowel and hooked my small bowel up to my rectum. I have a perianal fistula though and he says this complicates things.

They need to determine if the fistula was caused by Crohn's or if it was caused by my sphincter muscle. If it is the second he says I will be in the clear and can hook things up to my rectum.

To be honest all of it is confusing to me. I don't think my wife, who is the non-drugged one of our household, is so sure about all of it as well.

I understand that at this point surgery is perhaps my only option. Thanks for listening. Any thoughts are appreciated.

 

It sounds like they are considering a temporary diversion - that would be the one where they leave your colon in place but do an ostomy for the stool.

The idea is that your colon would have time to heal without any stool going through it and you could be hooked back up once it has healed.

I have heard good things generally about the Cleveland Clinic but it sounds like you are really uncertain that you want to go ahead with surgery.

Have you considered getting a 2nd opinion somewhere? There are many good places to choose from that aren't that far from Cleveland. Chicago has a terrific program for one.

No matter how much you trust your current docs, sometimes a fresh pair of eyes can see options that have been overlooked.

Looking over the things you listed I wonder about the following options I am aware of that aren't on your list:

1) If you responded to Remicade but lost response it is not uncommon to re-do the loading doses, shorten the span to as few as 4 weeks and increase the dose (I know one person who's on triple dosing).

2) Trying the immune modulators - 6-MP and Methotrexate. Sometimes these turn out to be the best meds. Drawback is they take time, 6-MP longer than Methotrexate.

3) Other anti-TNF alpha meds that are not often used but work for some people include thalidomide (strictly controlled and good for a year or two only), tacrolimus are two I know are out there

4) clinical trial?? there are a number currently open that are testing a variety of treatment options including rifaximin
www.clinicaltrials.gov/ct2/results?term=crohns&recr=open

5) TPN as someone else suggested; exclusive enteral nutrition is usually most helpful for small intestine disease but does sometimes work for people with mostly colonic disease.

All that said, there are a lot of CDer's walking around without their colon who are very glad it's gone. You can actually live pretty well without it I hear.

Hope you get feeling better soon.

Patricia

Thanks everyone for the replies. But man, now I am even more nervous. You guys are throwing out names of drugs I have never heard of.

I was on Azasan for about two months. I think it helped me with not going as frequently. For some reason most of my bowel activity is throughout the night (you know, when one should be sleeping).

On Azasan I was hardly waking up to go. But still D no matter what.

The other debilitating thing were the fevers. Every night before going to bed I would come down with a fever. Always high. The last fever I had was on Christmas. Pretty much they have disappeared. They did take me off of Cimzia. So perhaps it was the Cimzia that was causing the fevers and not the Crohns. At any rate, still have the D and if I were an infant they would classify me as "failure to thrive." I can't gain weight at all. I eat a ton during the day and every night I flush it all away. I'll eat three square meals and also supplement here and there with a Ensure knock-off (Kroger brand).

I need to write down the name of the drugs you have all mentioned and bring the list with me on Tuesday. Not sure why they would force the surgery when there could be other drug options. They are supposed to be #2 in the country for IBD. For the most part I am happy. I'm just tired. After two years of no changes I'm just ready to feel normal. I realize that is a big request and maybe even naive. I have never been a negative person my whole life but lately it is just overwhelming.