Re: Where to from here?

From: Laura (Fivestarairinc@hotmail.com)
Sat May 1 20:28:44 2010


Dear Geri, I heard that the MAYO clinic in Rochester Minnesota has worked wonders for people. Maybe you should just call them for a consult and see if they could help you. I wish you the best.

At Fri, 26 Mar 2010, Geri wrote: >
>I'm 26 years old, and pain is my constant companion.
>
>My story starts years ago; I had surgery for what appeared to be a burst
>appendix, which was actually a burst cyst. After that surgery, the pain
>started to increase considerably. I eventually went to see an ob/gyn,
>thinking it might be my reproductive organs. I was 23 at that time.
>They found two massive tumors; one was 8 cm in diameter. I had to have
>emergency surgery. I stayed in hospital for 4 days, and the ob/gyn told
>me there is no hope for me, within a year I would have to get a hyster
>as I have severe Endo. No word about adhesions. When the pain came
>back about 3 months after the op I obviously did not go back to that
>doctor. I went for another opinion. I found a bear of an ob/gyn, who
>decided to do a lap first to see what the problem is. I had the lap in
>Jan 2009, and was met by a very serious ob/gyn at consultation. I had a
>frozen pelvis, after trying to see an ovary for over an hour; he got out
>and closed up. He referred me to a specialist, whom I almost disliked
>from the start. I say almost as I had no reason to dislike him, just
>felt something was not right. After more tests and a virtual
>colonoscopy, he confirmed that it's Endo Stage 4 and adhesions and that
>I indeed had a frozen pelvis and that my ovaries and uterus were so
>diseased that the only other option was a hysterectomy.
>
>I went back to my ob/gyn that did the lap, gave him the findings and
>asked him to do the surgery. He agreed.
>
>My TAH/BSO was scheduled for the 23rd of February 2009 for Endo stage 4
>and numerous tumors on the ovaries. I went in that morning at 06:00.
>Bright eyed and bushy tailed. Had to take my "meds" the night before
>and spend a bit of time in the bathroom, but not too much as I had very
>little to eat for two days before. Was put into the surgery ward at the
>bottom of the corridor of the maternity section.
>
>Got checked in, measured, etc and was then told the doc had an
>emergency, his schedule is running late. My op being so big I was last
>on his list. Went in at 17:00, woke up at 19:00 screaming. I must be
>honest, the pain was horrible. I felt like my back was on fire, my
>bladder was full and I wanted to vomit. Because I was so stressed the
>catheter was not doing its job and I had to relax first to empty my
>bladder. My back hurt so bad cause the muscles holding your uterus in
>place is attached to you back and they severe those muscles when taking
>out the uterus. It was severe.
>
>I eventually got moved to my room where the lovely nurse told my family
>to go home as she will give me something to sleep and pain meds. I
>couldn't speak to them, say anything, I just made crying noises, the
>pain was too bad. She hooked me up to my pump and told me to press it a
>couple of times before she sets the timer. Such relieve. I got a
>sleeping tablet and eventually drifted off to sleep. The next morning I
>felt a lot better, got up and walked about. Started on fluids, had my
>cath removed and walked a lot. The third day I had solid foods, passed
>gas and had a very proud doctor. I almost did not need pain meds
>anymore. I went home on the 4th day. It was a Thursday.
>
>I went shopping on the Saturday for a new tv. I felt great. That night
>(It was a Saturday) I had been feeling full for half of the day, almost
>like a solid pressure around my stomach, like a bloated feeling with
>stomach cramps. I was hungry tho and had some dinner. After dinner I
>felt ready to explode. I started vomiting, and was running a fever, I
>could barely walk. I was rushed to hospital.
>
>The X-ray showed a bowel obstruction. I was admitted that night and was
>willing to go thru three hysterectomies by then, if somebody could just
>take away the pain. The next morning I met the most wonderful surgeon
>in the world. She's this tiny little thing that I fell in love with
>immediately. I had the most severe nausea, vomiting and stomach cramps.
>She tried a conventional treatment first, meaning no food and very
>little water, constant medication thru the IV and eventually a gastric
>nasal tube. I was wide awake when they put in the tube, I've never
>screamed as much in my life as when they put that pipe down my nose. At
>least I did not have the vomiting anymore as the septic liquid in my
>stomach was removed. What a relieve. I must say, thru this all my
>ob/gyn came to visit me every single day. I will never consider another
>ob/gyn again ever.
>
>After a week I felt better. They removed the tube and I begged to go
>home. They discharged me on Friday the 06th of March and I was happy to
>go home. This time I felt a bit drained and tired, but ok. For a
>weekend. Monday afternoon I had a fever, nausea and stomach cramps
>again. I was rushed back to ER. This time I had a complete bowel
>obstruction and they had to operate. She found a mess. Due to the
>botched appendix surgery years ago and the endo my bowels were all
>attached. She found a tumor in that mess as well. She stood patiently
>for 7+ hours and separated my bowel cm by cm. After the operation I was
>admitted to ICU, critically ill. This was after 3 am in the morning. My
>friends were frantic! I went in at 7 pm the night before!! I was in ICU
>fighting death for almost two weeks.
>
>Eventually I fought back and started noticing the things around me
>again. It was hard, but I started to recover. Eventually I was moved
>to the surgical ward and had my own room to start the recovery process
>without all the ICU attachments. I then started with severe stomach
>cramps again. By this stage I've not eaten for 5 weeks yet and have
>lost a considerable amount of weight as well. We ran some more tests,
>and they found another obstruction. They tried conservative treatment
>again, but it did not work and on the 25th she opened me again. This
>operation was even more complex as she had to remove diseased pieces of
>small and large intestines. But, because I was so ill at this stage
>already, it would have caused my death trying to reconnect the pieces of
>bowel. So she created an ileostomy. There's a hole in my stomach where
>my small intestine is connected to in order to give my colon a rest. I
>have to wear a bag. And she said she will reverse this in a couple of
>weeks, as soon as I'm strong enough. Ended up in ICU again after the
>op, pneumonia, blood loss and severely ill once again. Got two units of
>blood and started to feel better. Eventually again moved to my own room
>in surgical ward. Then, just before Easter my doc went on leave for
>just over a week. She left the Thursday; I got myself released on the
>Friday and went home. That was April. I've spent only four days at
>home between Feb and April.
>
>I got the reversal done on the 3rd of June 2009. Once again I was cut
>open to get everything sorted. By now they've had to cut me in a line
>from next to my bellybutton sideways up to my ribs.
>
>After the reversal I ended up in ICU AGAIN. I hated it this time
>around. Too many people in my private space; I needed to get this
>sorted and was hoping this would be it. I was released but within two
>weeks had to go back to hospital due to abscesses. I went back into
>surgery and a pipe was placed sideways underneath my ribs and came out
>underneath my bellybutton for drainage.
>
>It's now March 2010, the wound has still not closed under my bellybutton
>and I have severe pelvic pain on a daily basis. I went to see my ob/gyn
>again in November 2009 due to the pain and he told me nobody will touch
>me again with a scalpel unless I'm on death's door. He said I would
>have to learn to live with it... but things are just getting worse. I
>have similar experiences to the blockage symptoms almost on a daily
>basis.
>
>After the Ileostomy reversal I was told by the surgeon I will have
>diarrhea for just about the rest of my life due to the fact that my
>bowel is so much shorter. All I can say is that it's seems to be a
>saving grace at the moment. I can feel how my bowels sucks all the
>water out of my body after I've had food, moaning a groaning to get the
>food thru a spot in my bowel that hurts like hell.
>
>I'm so scared that one day soon I will have such an episode that I will
>get seriously ill again. They just told me there is nothing to be done,
>and frankly I'm very scared to even go and get my insides checked out.
>What else is there to do? I live each day as a young person with a belly
>the size of a 6 month pregnant woman. Every day I say maybe tomorrow...
>maybe tomorrow I will do something about it, find someone that will tell
>me I'm not crazy... It's a real pain and disease... I do not want to
>die, but I also want a life... where do I go from here?


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