Frustration and My Story

From: International Adhesions Society (tracy.joslin@adhesions.org)
Thu Sep 9 11:17:46 2004


From: adhesions@adhesions.org [mailto:adhesions@adhesions.org]On Behalf Of Tammy Taber Sent: Wednesday, September 08, 2004 10:54 PM To: tracy.joslin@adhesions.org Subject: Re: Frustration and My Story

Dear Deb, The IAS message board has been whacked lately, so I just saw this message for the first time today, I hope someone has been able to get back to you sooner than this.

[moderator note: please consult your physician before trying any medications as mentioned below]

My name is Tammy Lynn Taber and my story is on the IAS QUILT. Where you can read more about me and how I came to know a lot about adhesions. I myself suffer from the nasty buggers, hate em, hate, hate em. I have had them since I was 15 and now I am 35. I am on disability both with my company and with the State of Washington. I take Oxycontin because otherwise there is no possibility for joy in my life, it is the only thing that relieves the pelvic and leg/groin pain that has stolen my life from me.

I am not a Dr. but I know a lot about what we are going through, you, me and about a thousand other women and a few men too.

So, here goes my advice, take it or leave it or discuss it with a Dr. that will listen (good luck to you there, I hear those are few and far between)

1. it sounds like you need to get on a drug for pain relief, trust me I understand that feeling of dislike for taking pills better than anyone I personally know. So unless you prefer to lay on the bathroom floor curled up in pain, get you butt on that oxycontin and consider yourself lucky to find a Dr willing to give it to you and pray that your insurance will cover it and if they won't try Methadone or Morphine. Straight up, get out of that pain first off or you will make yourself literally crazy. I'm serious! It happen to me before I finally came out of denial and accepted my fate. Being on the meds isn't so bad, you get use to it and then you find a happiness within the relief of the pain and you learn how to deal with the side effects. Oxycontin is the best, it doesn't make my head fuzzy like the morphine does. Start with 10 mg 2 times a day (they are time released and last for 12 hours) and work up from there. You might build up a tolerance to them over time and in time you will need to go up to 20 and then 40 but that will happen over a few years.

ok, enough, said.

Secondly try a drug called Metoclopramide (exact spelling) also called Reglan. It will help a lot with your stomach nausea and vomiting. What is probably happening is your stomach had been attached by the adhesions and is refusing to pump properly. This will really mess with your gall bladder and liver functioning. I had to have my gallbladder taken out and I still had problems for a little while afterwards but I eventually quit puking. I had puked non stop for 3 months, God, I wanted to DIE! Oh Man I lived in my bath tub.

Being immersed in hot water is very therapeutic for me. Ok, last but never least, get yourself on an anti depressant/ anti anxiety med something like Celexa (again, exact spelling, these are straight out of my med case) or Zoloft or something else, keep in mind, these might be the hardest to get use to and the hardest to want to keep taking and the hardest to do without once your body becomes dependent on them. For the first two weeks expect to feel like you drank way too much coffee or did some type of speed, neither of which I consume. After you get on these things and have gotten use to them you will begin to feel like a real person again, I promise.

Until then....Welcome to Our World, it really sucks here but we lean on each other for support and advice.

My personal email address is tammytl@msn.com so even if the IAS board is down you can get a hold of me.

Sorry that this letter is so long but there is no easy way to welcome someone to hell.

One last thing, THERE IS HOPE, there is a product that is in clinical trial stage, if and when the FDA passes it for use in the United States we will all have a chance at a normal life again. The product is called SprayGel (spelled just like that) Look it up on the internet and see what you think, there is quite a bit of information out there about it.

SprayGel is made by Confluent Inc (I'm not certain of that spelling but you'll know it when you see it) It will act as an internal adhesion barrier and with it many of us will be able to have successful operations to remove and prevent the reoccurrence of adhesions. If you can wait you might want to wait to have another operation until SprayGel has been approved.

But, from the way you described your situation you might have to have an operation just to get out of you what that surgeon left inside of you. I assume he used the mesh as a sad attempt at a barrier, well it don't work like that, just ask anyone who knows and there are Dr's out there that know what the heck they are talking about when it comes to these adhesions, some of them can be contacted via email and they have letters to take to your Drs that think they know what 'they' are talking about but don't, you know like the surgeon that tried to take care of your situation, though it sounds as if he only made it worse, much worse.

So like I said you can take my advice or leave it, this is simply my own personal testimony and line of advice derived from personal experience and not time in a medical text book, by the way; we're not in those medical text books, that's why no one believes us, if it can't be found in a medical text book then it must not exist, right? What F*#@ing Ever!

Ok, I am going to send this off to you, I always end my letters, Pain Free Hugs and Best Wishes to You and Yours, Tammy Lynn Taber (that way you'll know when it's me on the message board, or you can write to me directly)

>----- Original Message -----
Sent: Tuesday, September 07, 2004 10:28 AM Subject: Frustration and My Story Sender: dood4bama@bham.rr.com (Deb)

Hello...new here. My story is pretty much what you all hear frequently and know all too well. I am in a downward spiral and came here to tell my story and vent as I really have no one else to talk to that will understand. I apologize for the length, but I need to get this out of my system.

I have had right sided abdominal pain for 5+ years now. Around 1993 I had my gall bladder removed via lap (first surgery ever) and was told then that I had an unusual amount of adhesions in the right side of my abdominal cavity. The surgeon asked if I had any prior injuries or severe infections and I had not to my knowledge. We assumed it was possible that the gall baldder inflammation may have been partly to blame and I recovered well from the surgery and went on with life. For a few years I was great.....VERY active..played raquetball, basketball, traveled...had a good life. Around 1998 I began to notice something tuggin and pulling in my right side and pelvic area. At first it was just occasionally annoying. It progressed over a few months to severe pain, nausea, dizziness. I was so sick I didn't know what to do. I ended up in the ER and was admitted.......


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