How I feel..........

From: Wally (
Fri Mar 9 18:43:59 2001

Since finding this site, I have visited almost daily to read the amazing number of posts each day. I have been getting more and more concerned about how many are "treated" by doctors & other health professionals. We all know that we know our own bodies better than anyone else. Probably your partners would have the best idea beside us....because they live with us 24/7. It is difficult to express our anxieties and concerns during a doctors visit. So how can we deal with it? I have asked myself that question.....what can I do?

I started by dealing with my emotions after my horrendous hystorectomy last year. I put my fingers on the keyboard & I typed. I told my story from when I first got my period, right up until a few months after the surgeries. I wrote about everything, emotions, how I was treated by hospital staff & doctors. I wrote about my fears, and my pain. This helped, I showed it to a couple of people, close friends, to help them understand how I felt. Since writing my story on the computer I have had various procedures to find the cause for my pain, and why my bladder isn't working properly.

Each time I go into an operating room, I become anxious and panicky, understandable considering what has happened to me....

So a few months ago when I was referred to a new GYN (the last one that was treating me refused to see me again, he told my GP there was nothing wrong with me!....another long story)

When I went to see him, I printed out my story, I did edit some of it as I made personal comments about how I felt about some of my doctors. I didn't want to give him the wrong idea! Anyway, at the end of the consultation it was decided that he would have a "look" through a laperoscopy. As I was leaving, I handed him my typed out story & said that I wanted him to read it. I was unable to express myself about my pain & feelings because of what I had been through. I told him that I needed him to read it before our scheduled "surgery meeting", because I wanted him to understand what an effort it would be for me to even show up!

It worked........almost 6 weeks ago now, that laperoscopy was performed. He found extensive adhesions, completely encasing my overies (he couldn't find them), he used a laser to cut one very thick band of tissue, and said that my bowel was "pushed up". Before the surgery, they spent almost half an hour with me, reassuring me and answering all my questions. The anasthetic doc (sorry not good with med spelling) was wonderful, she was a specialist and was quite happy to discuss my "feelings". I know this is a long winded way of explaining things, but I felt that if I told you my story, it would validate my suggestions, thoughts and opinions.

I have a follow-up visit from that surgery on the 13th March...

IBS - My wonderful husband was diagnosed with this years ago, and was prescribed various drugs to help with the "problem", to me in the end it seemed that they were prescribing drugs to counter the effects of other drugs he was taking. In the finish he lost his job in Real Estate and his health continued to decline. (He was dying...) We were both convinced he had cancer, and I believe the doctors thought so too, but just couldn't find it. His pacreas shut down, and other organs threatened to do the same and more medication was prescribed. He was alergic to this which created more problems. The day after my emergency surgery (5 days AFTER my hystorectomy) he travelled to Sydney with a family friend for biopsies of his pancreas. They found nothing. The professor threw up his hands & said I can't find out what is wrong with you. He had been doing clinical research on herbal therepy & it's effects on IBS. He told my husband to find a good herbalist.

After reading many posts here, I suspect that he also suffers with adhesions. He has never had a diagnostic Laperoscopy, but had every other humiliating test you can think of. You see as an 18mnth old baby, he had his appendix out, sometime later he was rushed to hospital for complications with adhesions!!!!!!!

He is heading towards the end of his herbal therapy, Gordon says it is just some " tuning fine" now. IBS DOES EXIST, it is the cause of it that varies (this is my opinion based on our experiences). I am concerned at the dependance on Laxatives that seems to exist with those who have bowel involvement with ARD. Really, isn't this just making your condition worse? Have you looked for alternatives? Seriously? Have you visited a naturopath or a herbalist? There are other forms of natural medicine too. How long did you try this treatment before you gave up? It is not a quick fix cure, and you MUST give it enough time to work. There will be good weeks and there will be bad ones....the key is DON'T GIVE UP!

The anniversary of us meeting Gordon is this week. I intend to write a book about our experiences with western medicine, and my husbands return to health using herbals, and about my journey also.

An update on my treatment - YES I am trying the herbal therepy too. I see Gordon once a week, and I have good weeks and I have had bad weeks. Gordon has made NO PROMISES, but he has told me he can strengthen my organs and increase my energy (This is traditional Chinese herbal therepy that I am trying) My GP is aware of what I am doing and she approves....she was very sceptical when my husband started, but she hasn't seen him as a patient for almost 12 mnths! So in order to see if we can avoid more surgery, she is behind me 100% on this experiment.

How do I feel? Sometimes FANTASTIC! Sometimes aweful! BUT when I am using the herbals (I missed a few days due to work schedule...another story) I find that the sleep I manage to get is "energising" I am more more alert and the ache in my kidneys is getting less & less, the pain in my groin has reduced to almost bareable. I too have a bowel problem now, I don't take laxatives, I drink plenty of water, eat fresh fruit & vegetables, very little red meat and mostly chicken & fish (especially tinned). Yes a bowel movement can be VERY painful, but I don't want to become dependant on laxatives to go! To me, that's just adding to my condition. Please don't get me wrong, I am not critisizing those of you using laxatives, I have based my "self help" treatment on the comments you have made about your experiences. My "self help" ideas may not work either, but I am giving it a go, because from what I have read here, surgery is the absolute last resort! I wish I had found this site BEFORE my hystorectomy, I know that many of you have expressed the same sentiment.

Please, don't critisize others for their comments,feelings and ideas posted here. Read them yes, form your own opinion and make decisions on your own treatment based on HOW YOU FEEL YOU WILL BEST COPE WITH ARD. Many of us have no other place to "vent", to whinge and basically feel sorry for ourselves. I believe that talking about things, even typing it here, is a form of therepy, as long as we don't "dwell" on things.

I'm not saying that what I am doing is right for anyone else, but it is what is right for me. I have some pretty bad days too, and I honestly don't know how my family put up with it. Tell your partner how you feel, explain your fears, your hopes and how much you appreciate their love and support. I think this is some of the best medicine we have available. If you don't have access to have us, we will be your "family" for love and support. I have seen evidence of that here daily.

If you have managed to read this whole thing....thanks for listening!!!!

I feel a bit lighter now! LOL

Cheers & hugs, Wally (Jo)

You will never never know.......if you don't give it a go :)

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