A strange but wonderful thing that happened

[severtt]

I tried everything after two years of hell but a blood transfusion caused all symptoms to stop

After the blood transfusion (a lot of blood) due to a non-life threatening condiiton that caused me to slowly lose blood over time , I had one short flare, and then everything related to IC ceased! I slowly discovered that I could eat anything I wanted, even chocolate, coffee, you name it.

I had been in a pitiful shape, and the pain was so bad that I had to see a mental health professional to deal with it since I live in Arkansas, and as far as I could determine, no doctors here prescribe pain meds for IC. I was very angry about this, but there was nothing I could do. I would go to my bedroom, bury my face in my pillow and cry and scream for hours.

Should the condition every return, I plan on moving away from Arkansas. As far as I can get, and I don't every want to come back. I have met the most ignorant, misinformed, malignant-minded, short-sighted, fools this side of the Mississippi River. (I am referring to some of the healthcare professionals I dealt with, not the people of Arkansas) I love the people here. It's just that a person with IC as painful as mine was is not in a good place for treatment.

[some_guy]

That is great!!! I hope you never experience an IC related symptom ever again. Very interesting about the transfusion. Sorry about the doctor situation in Arkansas I feel for anyone still there that has to live without medical care.

Congratulations Again.

Mike

[bob04951]

Wow, what is THAT? Very interesting, and hope it will be long term for you. Hmmm...yet another area to explore that is similar to stem cell? What do you guys all think?

And by the way, sorry to hear about your rural experience, we're in the same boat here in rural Maine, but you're right, the people will give you the shirts off their backs, the docs, not so much. Best of luck to you, and don't be bitter, look ahead...

[musiclover]

Now that's interesting. Could there be something in our blood that is an irritant?

[severtt]

The doctors here are afraid of prescribing controlled substances for IC. It seems to be off the radar screen of what the Arkansas Board of Medicine allows-- pain killlers or sedatives can be given for only about two weeks. My urologist was Dr. Brizzolara, one of the best urologists in the U.S., but he strictly adheres to the same standards. My best guess is that he wants to retain his license.

I have done due diligence, and found that the problem is the Board. Unless you have a condition that falls within a certain criteria, such as a serious spinal injury or a terminal illness such as cancer, they prohibit prescriptions of controlled substances as I stated above, narotics for more than two weeks, or sedatives for a month or so.

[Zygala87]

Yes Doctors must adhere to State regulations. Each State is different. Arkansas Board of Medicine needs to move out of the dark ages and into the real world of today. I love Arkansas and the people there. I can think of many diseases that might need strong pain meds for more then two weeks. The Doctors must feel bad that they can not help more. Lets hope for better days ahead. Hug, Ziggy

[severtt]

My mother had a case of shingles, and she received a month's worth of meds, so there are exceptions here and there. The main thing is that IC is such a lingering, perhaps lifetime condition, and it is just not on that exception list or the main list.

[bubbe1]

Wow! That truely is amazing. I wish someone would do a study on your case and maybe come up with something we don't know yet.
Whatever the reason, it's wonderful that you are better! Stay well,
Laurie

[Snowden1]

Just curious as to what blood type you are? The stem cell theory I think is very interesting. I wonder if anyone else with IC has had the same experience? They should study your case.

[severtt]

I have a cousin who is a nurse. She talked to her colleagues not long after I first was diagnosed with IC and one nurse said that she had IC and it was a horrible, devastating experience, destroying her life and career. This all happened, though a long time ago according to my cousin. The nurse said that she saw a urologist in North Louisiana and injected two treatments of horse serum into her bladder. She said that all of her symptoms went away. This nurse was close to retirement, was highly respected in her field, and I don't know why she would have made this up. I search for any type of similar treatment, and even Dr. Brizzolara who uses everything, including Botox, did not know of it.

Anyway, to make a long story short---it gives some credence to what happened to me. I also received serum that was not my own. After about 48 hours of the IV drip, I felt fluttering sensations in my bladder. I don't think it was my imagination because it kept happening. I will always wonder

[Daisy Mae]

severtt.... I know the story was basically that she received horse serum, but I'm thinking maybe what she was trying to say was possibly horse linament?
DMSO was used in the past as a horse linament for race horses with sore muscles. I'm thinking that may be what she meant.

[ICNDonna]

I agree that it was probably DMSO.

Donna

[Mytita]

Is DMSO still a recommended treatment? I have not tried it, but would consider it.

[ICNDonna]

DMSO isn't used as much as it was for a long time, but it's still being used.

Donna

[nottoc4]

I think my Dr.uses DMSO in his bladder instillation cocktails.He did not tell me the name of the substance but told me I would smell like garlic.

[LaurenEngland84]

I'm writing to see if anyone can help or offer any advice.

After a cystoscopy and a change of diet over 2 years ago, I found myself in remission for around 2 years. I barely had an IC flare and could manage eating foods that weren't IC friendly.

However, over Christmas I've had the longest flare ever. It's lasted over a week and has made me feel feverish and miserable.

I've been to the doctor's for antibiotics and been given 2 courses of Trimethoprim, as the doc suspected I had a water infection. However, a urine sample came back normal. The antibiotics seem to be giving me some relief but I still get a mild flare every now and again.

Should an IC flare really last this long?

I'm going back to the doctor's this evening in the hope of being reffered back to my urologist at the hospital. Does anyone have any advice on how I can deal with the pain? xx

[ICNDonna]

If the cystoscopy was with hydrodistention, that may be what put you into remission; I do think you need to see your urologist.

Sending healing thoughts,
Donna

[Judy Gee]

Hi Lauren, you could have written my story. I am going through something similar. But not feverish, just the flare. So far I have been doing ok with staying on the diet. I wonder if it had anything to do with my cysto and distention being 3 yrs. ago. Hope others will answer with more clues to what could be going on. Let us know how your feeling. Judy Gee

[musiclover]

Hi Lauren. Yes, a flare can last at least that long. Mine usually last a couple of weeks.

Since you have partially responded to the antibiotics, maybe there is some sort of an infection, but I don't know. Or maybe there was an infection that set off the IC. Like Donna said, it could be the cystoscopy with hydrodistention that put you into remission. It seems you really need to find an IC specialist that can help form a good treatment plan for you.