News from my ID doctor anyone else hear of this?

[ttpelrine]

Hey everyone, hope you are all ok. I am still suffering with the c-diff really bad and my infectious disease doctor told me the c-diff has burnt out my colon so it makes it almost impossible to get rid of and if you do get rid of it most likely it will come back. He has says the only way to cure this is by surgery. Has anyone else out there ever heard of a burnt out colon due to c-diff?

[cryingsilly]

I am so sorry you are still struggling.

I have not heard of a burnt out colon. Could you maybe call a c. diff expert and ask them about this?

What does he mean by surgery? Does he mean you have to have your colon removed?

I am so sorry that you, we, us all , are going through this.

Vanco has stopped working for me I guess as I am now having pretty bad symptoms on the max dose of vanco. I think you mentioned once before that it had happened to you as well.

Let us know what is happening with you and what you find out.

Darlene

[ttpelrine]

Thanks for the reply, by surgery yes they do mean removing the colon. So Vanco has stopped working for you. Vanco, flagyl, fucidic acid, questran, rifampin none of them work anymore and my doctors don't know what else they can do. I am going to see if any other doctors have heard of a burnt out colon. I am also sorry that we are all suffering with this horrible c-diff. I will keep everyone posted. Thanks again

[Bobbie]

Doris,
I would get several opinions before having such drastic surgery.

Sorry you are still suffering. Know it's been a "long haul" for you.

I've never heard the term "burnt out colon." You might check out the term on some medical web sites. Some are listed in the first forum. You could also "google" it.

[ttpelrine]

Thanks for your input Bobbie I have searched some but haven't found anything. I will keep checking into it though and will definately check some of the medical web sites. Oh and it is Tammy not Doris maybe you have me mixed up with someone else. Yes it has been a long hard haul and I am afraid it is going to get worse before it finally gets better. I am trying to stay positive but these days it is almost impossible. Thanks again Bobbie.

[fire7163]

I would ask for him to clarify burnt out...does he mean a section that is chronically infected that he wants to do a resection ? I had 10 1/2 inches removed lapriscopically due to a section that was chronically inflammed and non-responsive to meds. I actually had 6 opinions before I agreed to the proceedure. If it comes down to it, inquire if they can do it lapriscopically. I was only off work for 3 1/2 weeks and in the hospital for 4 days. If you need I can recommend a surgeon in Oregon who developed and teaches this proceedure. I hope it's not necessary...lot's of luck

[ttpelrine]

Thanks fire7163 for your input. I have an appointment with my specialist soon so I will inquire further about this burnt out colon. I know my entire large colon has been chronically inflammed for 2 and a half years now. They want to do a subtotal colectomy with and end ileostomy which would be reversable after about one year. I am a bit scared and skeptical but I am to the point where I think this my be my only hope. Thanks for offering to refer me to a surgeon in Oregon but I am in Canada and would not be able to go to Oregon. I have been seeing doctor after doctor and specialist after specialist and they all give me the same answer that they have tried everything and that there is nothing more that they can do for me and there only suggestion is a colectomy, I am still seeking for someone who has a better idea but haven't found any as of yet. The doctors are telling me without a colectomy I will never be rid of the c-diff or inflammation because the c-diff has destroyed my colon. I didn't want to accept that answer at first but now after all this searching I have had no other answers or suggestion and I am beginning to think that maybe all of these doctors are actually right. I don't know how many more doctors I should see or talk to as I have already seen so many. When is it time to accept what they are telling me. I am not sure whether to keep searching or take what these doctors are telling me to heart since many have all told me the same thing. Thank you for the reply I hope everyone here can finally beat this thing, and I also wish everyone the best of luck and you are all in my prayers Tammy aka ttpelrine

[Bobbie]

Tammy,
Sorry I got you mixed up with Doris. I remember there was a problem with your sign-in name & you had two for awhile. After eight years & so many posters, sometimes it's difficult to keep people straight.

If you have had other opinions & the majority of docs. recommend, surgery, it might be your only option. Just make sure it is. From what little I know about it, you can live a productive life after the surgery. Have you been on any of the discussion boards for Crohns/Colitis. I'd go on them & ask others. The hyperlink is in FAQ or just "google."

We wish you the best.

[cindym]

Tammy, I have never heard of burnt out colon and TRUST ME when I tell you if anyone ever had one I think it would be me. I have dealt with this stuff for 7 years now. I read you have become resistant to meds.......are they sure of that? I have periods of time where it seems as though I am forming resistance but it always turns around. #1 thing I found out is that probiotics at times make things much worse for me and I have to really limit how many I take and how often. FLAGYL made my condition MUCH WORSE........have they tried high dosage of vanco ONLY for a week or two and then reducing it? Geez- I hope things get better for you and you do not have to undergo that surgery. It is no piece of cake... Through all my trial and error findings with cdiff I have found the least I take into my system......the better I am. Crazy, but true! Good luck and I hope you find your answers.

[whitepine]

I would absolutely try the fecal infusions before I had surgery. If it were me, I would have nothing to lose and do 5-10 infusions. It may work! I would also beg, borrow, and steal to see a c.diff expert in the USA before I resorted to surgery. Good luck and you have our support. :)