Throwing in the towel!

[bback12]

Tomorrow is my last day of Vanco, I called my GI's office today and left a message with his medical assistant to see what the next step is, and I even asked if there is any word on the fecal transplant. She usually is VERY good about getting back to me within a couple of hours. I didn't hear back from her AT ALL today. I honestly feel like I'm being blown off now since I had the whole run around with my insurance. ( They stated they couldn't see me because my insurance wont pay for things when I ended up calling my insurance and they said I'm 100% covered, and they were ticked that the office told me that). I mean, I've been dealing with this for 5 freakin years now, and I have done everything I can to continue with my somewhat normal 22 year old life. I don't drink, I don't go on vacations now because I can't plan anything, I don't get to go shopping like most people my age do since I have so much medicine to buy. I just don't understand it anymore. I guess once I relapse in two weeks( which I wil) I'll just go to the ER and let them handle it from there. I don't know what else I can do. There aren't that many GI's here in Cincinnati, and the ones that are here, they are all basically in the same practice. I want a fecal transplant so bad!! I would do anything for one!! GRRRRR! I pray every night that this would just go away and I'm to the point now where I cry almost every night. It just sucks!

[seekingcure]

Since the FDA is now requiring so much paperwork and red tape for a doctor to get approval to do the FT's, there are going to be fewer doctors who will be doing them. It was just beginning to become a more mainstream treatment option here in the US. One step forward, two steps backward for c-diff treatment in this country if you ask me. If this round of Vanco I'm on does not rid me of this evil beast, I am seriously considering doing home fecal enemas. It won't be the most pleasant thing in the world, but I will do whatever it takes to get well. That might be something you could consider looking into. Your donor will need to be screened for things like hepatitis and HIV, as well as stool tests for c-diff and other common pathogens.

Good luck with whatever you decide.

[gm37]

Brittney,
I am so sorry and ANGRY that you are being treated like this. It seems unethical for the doctor to refuse to treat you. He should be reported to the AMA. Do you want me to do it?
In the mean time, you need a good doctor. Ask around. Maybe call Cleveland Clinic and ask them for recommendations. Looking for a new doctor is tough. Do you have any doctor who you trust? You need someone who can treat you for the Crohn's as well as the c-diff episodes. My first urologist treated me horribly. His nurse practitioner witnessed it and she helped me find a new doctor who is very young and has been wonderful to work with.
You are so sweet and have had more than your share of misery. You are very articulate. Try to find a doctor who will listen to your problems. I wish I could help you. This is so frustrating!
Anne

[beth22]

Christina might know of someone in Ohio. Pm her and ask. I know exactly how you feel - I feel the same way. 5 years for me too. My insurance won't even pay for a test to see if I have Crohn's in the small intestine. I would also consider doing the fecal enemas. I did one in November, using just an emptied enema bottle to try it out and it went ok. I felt better after than before. When I come back from vacation, if my doctors haven't figured out a plan for me, that is what I am going to do, but this time I will do a week's worth like you are supposed to, although since my donor does not live with me, it might not be on consecutive days. It really annoys me that the FDA is making things so difficult. All they have to do is approve some kind of protocol that has been used and have doctors make sure donors are tested, etc. You run risks in many procedures, but people still get blood transfusions, have pacemakers put in, get angiograms, etc. I hope they "uncomplicate" this soon. Meanwhile, I would see if you can line up someone to help you in case you want to do this at home. Maybe your mom would be willing.

[getwellsoon]

I'm so sorry you are still battling this horrible disease Brittany. I can't add anything to the good advice you have been given, just know we are all here for you and know what you are going through. I think getting the ball rolling for a home FT is the way to go also. You will have to find a donor and get them tested but at least this is a plan. Whatever you decide, you are entitled to good health care. I would call back the Dr. today or get your Mom or someone assertive and let them know how you feel. Reporting them is a good idea as long as ;you know you won't be going back to them. I hope you can get it sorted out. You are too young to have such problems. I will keep you in my prayers. Carol

[Bobbie]

Brittany and seekingcure,

See my post New FDA Ruling on FMT's It contains a toll-free # for the FDA- call them! "Squeaky wheels" get the grease.

Brittany, I would try to call your GI again today re. Vanco.

Postby Bobbie » Wed Jun 12, 2013 3:40 pm

[AThurston]

The donor enema's were a breeze for me compared to the prep for the scope and the nasaogastric tube FT's. I did have to have assistance though. My brother was the donor and did not live with me and I went with his daily schedule. Like Liz said maybe your mom or someone that you are close with can help you. After the scopes and bouts with c diff, in and out of hospitals, I had no dignity left what so ever. But, this was my last resort, once I got past the "ick" part I managed. The FDA may have stopped FT's but they sure as heck can't stop you from what you do in your own home. I hope and pray you can start feeling better soon. You have been through so much with c diff & Chrohn's. My heart breaks for you and I have you in my thoughts and prayers. Never stop standing up for yourself. We are here for you and keep us posted.


Alletta

[bback12]

I got a hold of his medical assistant on Friday. She was out Thursday, so she didn't get my message until Friday morning. They put me on two more weeks of Vanco. I came out and just asked if he was still going to do the transplant, and she said he is, it's just taking time because of everything he has to go through( This better be the truth, not just throwing me under the bus).


Everyone here at my house doesn't have "good stool". I think my boyfriend would be the best donor, I'm just trying to convince him.

My mom called The Cleveland clinic, and they are willing to do one. The bad part, I would have to go up there and stay, and I've been told I can't take off work. So, here I am at another obstacle. This is why I wish my doctor could just do it.

[gm37]

Uuuggghh! It takes soooo long to get any action!! I know you are frustrated !!
I hope he really is going to do the FT soon and you get some relief.
It is good news that Cleveland Clinic would do one. I called them several years ago. They were super nice but said that they ony treated c-diff with Vanco. Hang in there.
Anne

[AThurston]

I do believe that is true, from what I have read and heard the Dr's do have to do a lot of paperwork thru and d/t the FDA to get the FT approved. Hang in there sweetie... maybe go ahead and call the FDA and give them the info for your Dr and keep at them till you get some action. I believe Bobbie listed the telephone for the FDA.

I don't know about your State on FMLA regulations, maybe, see if you qualify for FMLA to go to Cleveland?

[mfasules]

I have only skimmed the replies to your post; so I hope that I am not repeating information. I know the frustration of being brushed off by a GI doctor. That is what happened to my 91 year old mother who has been fighting c-dif for the last 15 months. It is slowly killing her. We tried to establish ourselves with a new GI specialist. He was impossible. Received a rec for another doctor but he is in the same practice with her original GI physician. The politics to switch made it impossible to do. Egos...egos. Now that is my venting but to get to the reason I am writing. Since you are in Cincinnati, you may wish to check with Indiana University School of Medicine and their GI dept. Dr Rex and others have been doing FT transplants for over a year. Just google and you can write Dr Rex directly. He responded to me very quickly.

PS: If anyone can recommend a great GI doctor within an hour or so from Dayton Ohio? We are in dire need. Maybe infectious disease??

[Bobbie]

See the Doctors forum. And/or check with Christina, one of our moderators, who lives in Ohio. Just type her name in the search box and you can PM or email her.

[Christina]

I see my name here. I was not impressed at all with Cleveland Clinic. I do not see a Dr here in Ohio for C-diff. If you are looking into a transplant I would recommend the Dr I went to in Indiana. It is a quick ride from Cincy. I only had to go overnight because of the drive and I went home right after the procedure. I believe I may have given you the contact info already. If not text me and I will forward it to you. He also treats C-diff patients and is up to date on treatment. Just remembered I do know a good Dr not far from you. He is my back up and was recommended by a colleague of my DR in Boston. I can give you that info too. Let me know. He is in Ohio near Cincy.

[Bobbie]

Brittany,
Since you work in a medical-related field, could someone at work help you out with what you can do to achieve this?

I am impressed your BF is willing to be donor. It took a long time to persuade my husband of 40 plus years to do so. He sounds like a keeper.

[bback12]

Bobbie- He has been great. He was not "thrilled" at the idea of being the donor, but understands he is the best choice.

I really like my GI. If he can't do the FT, I may go ahead and go to Indiana.

Christina- I'll keep you updated when I find something out. I may need to info from you again. I know he's in Mt. Caramel right?