Re: Desperately looking for advice..........

From: toni welsh (
Mon Jun 12 07:30:22 2000

At Sat, 10 Jun 2000, Robyne Hinks wrote: >
>Dear Deborah & Jean-Marc, You sound just like me I too had the dhura punctured and had to have the blood patch and it was not much fun especially the headaches.I too have had to have intrvenous feeds since the 27th April nad still have two weeks to go on them.Then they will try and feed me normally to see if my bowel will kick start but he has not much hope.He says it can one of two things.Because of all the gut obstructions and adhesions surgery it could mean that it is "going on strike " as he put it and it just needs a rest,or it could be a virusor disease(their not sure what causes it )where the nerves that make the bowel move are damaged and are beyond repair.This will include the stomach,small and large bowel so they will not push food through.In this case they must feed you for life throughthe drip (at the moment) as there are no drugs to help.However he went to a conference a couple of months ago and they are bringing in a drug that can help and you can eat normally.To find ou
>t whether it is this disease they can take a small piece of bowel and look at it under an electron microscope.Either way they think it is too early to tell and want to feed me for another couple o weeks.If there is an improvement in the pain then he wants to put an ileostomy in to see whether when I eat normally that it works(the stomach and small bowel} and then he will take out the large bowel as if they work then it has to be the large bowel that not pushing through.It is all double dutch to me at the moment and have just spoken to my GI and he says the same as the surgoen but he would like to try harder to fix it up medically(it means at least another three months in hospital).Im beginningto be stir crazy however they have let me have my computer in here and so that helps.I also can go out for a few hours once a week.Keep your chin up and try real hard not to get down because if you do then it is so hard to get back up.At least I have a fantastic husband that cares and helps and l
>oves me unconditionally.Love always Robyne.

>> ----- Original Message -----
> From: Deborah & Jean-Marc
> To: Multiple recipients of list ADHESIONS
> Sent: Saturday, June 10, 2000 3:32 AM
> Subject: Desperately looking for advice..........
> May 2, 2000, I left the forum feeling defeated and lost to have my 19th
> surgery.
> I return to all of you today looking for "HOPE". I am sending my story
> from the "quilt"
> to share with all of you............Thank you in advance for your advice,
> and friendship.
> Deborah
> I am 33 years old. I have had 18 surgical procedures since the age of 21.
> The last 8 of 9 surgeries were due to bowel obstructions caused by
> adhesions(gallbladder also removed). In '99 I underwent 3 surgeries, the
> last one, for a bowel obstructions, was in Dec. I am now experiencing signs
> of a (partial) bowel obstruction, severe vomiting, lower abdominal cramping,
> and minor bloating. The only option presented to me thus far is yet another
> surgery, something I would, needless to say, like to avoid. In Jan 2000 I
> had to close my retail store, due to poor health. The store had been open
> for 2 1/2 years. It had been my life dream to have my own store, sharing
> with my clients giftware from all over the world, antiques, French linens,
> jewelry and my own artwork (pottery & paintings). We (my husband and I) had
> worked so hard to make that store a success. The last year was terribly
> difficult for myself and for my family. I had emergency surgery in June,
> which resulted in an 8 week hospital stay. In the operating room I was given
> an epidermal to be used for pain blocking for after I woke up from the
> surgery. During this procedure the doctor punctured the "Dhura", which
> resulted in severe 'spinal' head-aches when I awoke from surgery. The first
> week in hospital I had to stay in bed and under go a "blood patch" to stop
> the (spinal?) fluid from leaking. This resulted in having another partial
> obstruction, and having to have NG tubes to stop me from vomiting, then
> another tube to feed me. I left the hospital in late July, only to return
> again to emergency on August 28,'99 (My Wedding Day!!!) with incapacitating
> abdominal pain. I was given a 6 hour pass to get married. A couple of days
> later I had my Gall Bladder removed (another 3 weeks in hospital). November
> came and I was in hospital again with another partial bowel obstruction. My
> surgeon did not think I would be strong enough to have another surgery so
> soon, so I was in hospital with a NG tube and heavy narcotics for 2 weeks.
> On Dec 07 I returned to hospital. Surgery was performed but this time when I
> woke up my digestive system had stopped functioning and my bowel went into
> severe spasms. I stayed in hospital for almost 1 month, and was investigated
> by several "specialists". One so called GI "specialist" thought that I
> should have an IV put into my neck for 6 months to feed me. Another doctor
> suggested that a psychiatrist see me,..... my mental state was now being
> questioned for.. "it was not possible to have so much pain and require so
> many surgeries, just for adhesions... it must be in my head".That was the
> "last straw"...those words almost broke me. Some days I feel like I'm going
> crazy......I can't stand the idea of going back to hospital, to be cut open
> again...I don't want all of those horrible drugs put into my body. I want my
> life back! I want to be healthy for my children, my husband, and for me. In
> September my husband and I want to hike the "West Coast Trail", for our
> "honeymoon" that we missed last year, because of my being sick. I need to
> get strong and healthy for this! I am desperately searching for any
> alternative or advice that may be offered. Already, it is some psychological
> solace to have found this Society and to find out that I am not alone!!
> Thank you!
> UPDATE: May 3, 2000 Emergency Laparotomy In less than 4 months
> adhesions returned covering my abdominal wall. All loops of bowel twisted,
> and one loop, in the pelvis, of the small bowel was completely twisted
> around over 180 degrees. I am now 4 weeks post-op. I am in constant pain.
> The surgeon thinks the bowel has twisted again. Now what do I do?????

I feel for you, that is so much surgery,and when your bowel is obstucted there is nothing you can do. This is why I am not having any surgery for awhile. I had 3 surgeries in 98, and two of them were laparotomies, and I am no better. I feel at times I am going to have an obstruction sometimes, I do not have bowel movements unless OI take alot of senekot, and right now all it is doing is cramping me. I will pray for you, and help you if you need me. I am not online too much anymore, I am trying to stop smoking, and I have been trying to keep busy, I am making it so far.

Take care, I am thinking of all of you, Toni

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