Lack of comprehension by family care doctors

[gac]

I had to go to my family care doctor after unsuccessfully fighting a UTI for 3 weeks and suffering other side effects from it. She was shocked I waited so long and I tried to explain to her that the antibiotics she would prescribe would result in terrible diarrhea which would probably trigger a big D uncontrollable event in which I would need to climb in the bathtub to clean myself off. This event would trigger more UTI infections and vaginal infections, prompting the need for further antibiotics if D-Mannose and other OTC urinary products did not clear up the problem. Vicious Vicious cycle!!!! She said only alternative would be hospitalization with IV antibiotics but first she was concerned because my legs were swelling and required an ultrasound of my legs for blood clots (none found). So today I wait and wait for results of blood tests she ran and what she wanted to do. Finally at 5:30 she decides 7 days of Cipro (which requires I go off of another one of my medications due to a drug interaction problem), go see a vascular surgeon of my choice sometime at my convenience about my legs swelling, and if Cipro causes diarrhea, go to the ER.

She obviously is clueless!!! I do not go to the ER with diarrhea - I just sit on the toilet for long periods of time or stand in the bathtub over and over again trying to get myself clean.

I give up! Not sure where to find a new family care doctor but I need to dump this one. Lack of understanding by all who do not have MC is very frustrating but I would expect better from medical professionals. An MC friend of mine suggested the other day, "Where is Dr. Marcus Welby when we need him?"

[brandy]

only alternative would be hospitalization with IV antibiotics

If any other docs bring up the topic of IV antibiotics I would explore this further. Before I put Mom who has alzheimers on daily D manoose she never really every healed from UTIs. Mom is also celiac. During Mom's shingles in January they put her on IV antibiotics in the hospital for UTI that was not healing. She had dramatic healing results from the IV antibiotics compared to the oral Cipro she had been taking forever.

I asked the doc if IV antibiotics in a PIC line could be administered at the house if there were future problems as the results from the IV antibiotics were dramatic.. He told me not in the town Mom lives in. She lives in a small, rural farming town.

Celiacs and MCers have compromised digestion which makes things like oral Cipro less effective. i.e. just because we pop an antibiotic doesn't mean that it is all that effective due to compromised digestion and active MC.

Since you have a daughter in your house and you are in Atlanta I would ask if IV at your house is an option. (with new doc.)

[brandy]

I'd also ask if there is any place in Atlanta that you can get outpatient IV antibiotics. Stop by everyday and hookup for 90 minutes. In rural areas it is not an option but maybe there is such a thing in Atlanta.

[hollyweb]

When my mother was alive, she lived with me for 6 months with an IV catheter in her chest and I was able to administer her IV antibiotics for her. You're so right about that, Brandy. If your daughter can't do it, Gail, she may have co-workers or friends that could take some shifts; also, there are nurses that can come to the house and do this. I've had experience with all these methods; they are there. Sometimes one has to be quite the squeaky wheel to get someone to listen and get this sort of treatment started. (As I mentioned, Gail, what you're describing could be cellulitis, which is treated by IV antibiotics, and the doctor who usually treats this condition is an internal medicine specialist - who might be a much better medical practitioner for understanding the "whole" of your various conditions.)

Often, it is by calling 911 and getting taken to the hospital in the first place that this process can start. They have to take care of you when you are legitimately so sick. And while in the hospital, it's an opportunity to talk with other specialists and get HELP with some of the chronic issues that are causing you so much suffering ... help with figuring out how to stop the diarrhea; help with the UTI's, etc. It could be an opportunity to talk about things like magnesium deficiencies and food malabsorption issues, and possibly get needed testing and magnesium infusion via IV.

I'm in your cheering section, Gail. This may actually lead to a positive outcome of getting some of the care and attention you've needed for so long. That's what 911 is for and you're certainly not one who has abused this service in the past. Another plus of getting "into the system" and going to the hospital is it gives you a chance to ask the staff there about other primary care doctors they think might work better for you given your health needs. Sometimes, the benefits of doing this just really outweigh other options.

Please keep us posted.

Love,
~ Holly

[crervin]

Gail, I hope to find you better. I'm on the vicious UTI cycle myself. I will probably have to resort to IVs for other UTIs myself if they can even find an antibiotic that I can take. I have allergies and reactions to the antibiotics. I see a urologist in a couple of weeks to discuss the possibility of interstitial cystitis. I'm now thinking the IC is not IC, but the D-mannose causing those symptoms or feelings. I'm currently taking 1/2tsp in morning and at night. I'm also taking a nightly probiotic to get my bladder flora back up. I realize I can sleep while the gas pains are going on from it.

Maybe your primary dr can refer you to a urologist and they will further help you. I so hope you can get this resolved. When I was pregnant with my 3rd child (before my MC diagnosis, but chronic D), during my c-section they put clindamycin through an IV. I thought I would flip out (that's what caused my MC), but it had no effect on my BMs. Not sure if it can be used for UTIs (I so hope that might be my only resort), but that is an option.