ADHESIONS Messages for December, 2001: Re: Urologist- to Kimmi

Hi Kimmi

There are many questions I have started to ask surgeons and specialists in the last six months and depending on what the surgeon or specialist is proposing they would be along the lines of some of these:

Have you any statistics on your personal success rate with this procedure?

Do you have statistics that show the individual side affects that can occur during or after this treatment?

How many times have you used this treatment?

Is there any patients willing to talk to me and give me their experience in their own words?

How many other surgeons/specialists use or believe in this treatment?

How long has this treatment been available and what research information do you have regarding it?

I have started to ask these questions because I am sick of being lead by the nose (picture that cow with a ring thru it's nose, rope attached being pulled along by the "expert" farmer/medical person......) do you see what I mean? I don't agree to anything any more without a great deal of thought and discussion, not only with those from the medical world who are a part of my possible treatment plan, but with my husband, some of my friends on the board, friends who are around me often (in my home town), my parents and my in-laws.

I have discovered that I MUST maitain control of my treatment and consider all teh what if's and maybe's that go with a suggested treatment. We are in charge of our own destiny and health, we can no longer take a back seat and wait and see which way that ring in our nose is going to be yanked. We cannot complain about our treatment or situation if we haven't taken an active and inteligent part in deciding it's course. We must learn to keep the reins of our own life firmly in our own hands.

OK, I will get off my soap box now, Kimmi, I am so glad you are taking such an active approach towards finding middle ground and some sort of relief from your pain. I hope my suggestions for possible questions to ask help you.

Love & warm gentle hugs

Jo (Australia)

>From: "Kimmi&Dave"

>Reply-To: adhesions@adhesions.org

>To: Multiple recipients of list ADHESIONS

>Subject: Urologist

>Date: Fri, 30 Nov 2001 14:36:34 -0600

>Hi All..Sorry getting behind in emails. Life has been hectic per usual.. Went to the urologist the other day.

>The Urologist would like to try another treatment for IC. I believe there are a few in here who have IC too correct ?

>Wondering if anyone has tried this treatment.

>The urologist wants me to come in every week for 6-8 weeks they place a catheter in and inject medication into the bladder. This is suppose help rebuild the lining of the bladder, reduce pain,spasms, and how often I urinate. I am up to over 30 times a day. I swear I live in the bathroom between the IC and IBS.. I was wonder if anyone has tried this treatment yet. He says he cannot say for certain if its the IC that is causing the extreme abdominal pain, or if its adhesions or bowels. But this suppose to be another process of elimination.

>I am really not sure what I am going to do, if I am going to do this treatment or not. He said it will cause an increase in pain for a few weeks because it will aggravate the bladder, and bowels. Oh Joy more pain.

>It takes me about 45 mins to drive into Boston, coming home from Boston can take a good 2 hours with all the traffic and my poor body cannot stand the ride. Have to pay for parking every week which is super expensive.

>My poor husband will be the one driving me back and forth, and then I have to figure out what to do with the Kids, and get a sitter for them which is extremely hard.

>Then if I don't do this treatment I am not following orders and trying to help myself get better. I don't know what to do anymore I can't stand it. Tomorrow is my last physical therapy appt, I have been going for 8 weeks. The only relief I got was for my shoulder I was able to regain motion and some pain relief with it.

>My back and abdomen are still exactly the same as when I went in. Some days worse because of all the crap they make me do. I feel like such a failure and is anything going to help me be pain free or even reduced pain. I have been on pain medication daily and other meds for almost 6 years now, and they always say I cannot stay on this medication forever.I have tried about a zillion different therapies to combat pain.. all failed.Drs say I am going to have to figure out a way to deal with all this. Have it be more exercise,diet,quit smoking ect. More exercise makes me laugh walking from living room to my kitchen is painful let alone walking around my appt complex for some addition exercise. Even had one say join a gym.. Omg are they that stupid.

>I have tried the exercise it has failed. I have tried changing my diet and eating more. Which absolutely kills my stomach no matter what I put in it. And well I haven't quit smoking yet, honestly don't have any will power to do that. I know its a crutch and I need a crutch. I guess you can tell I have not been doing so good,Depression is coming slamming back.

>I use to love the xmas season but I cannot get out and shop anymore. Cannot even decorate my house because its too painful for me to try and do all that stuff even taking the pain pills and muscle relaxers It kills, which is another thing that is bother me, what to do when the meds don't work anymore, you try telling them that they don't work anymore and they look like you have 2 heads, they say with the high doses of all my medications I should be able to function some what but I don't.

>Guess I am going to have to start making a bunch of doctors appts and going back to everyone again and say now what. I have tried all your treatments they have failed. I am really nervous that they are all going to give up on me and tell me there is no hope just life of pain..Ok I have babbled an awful lot and I am truly sorry. I guess its just a pity day..

>Gentle hugs

>All

>Kimmi