Where to from here?

From: Geri (gerih@ananzi.co.za)
Fri Mar 26 19:09:00 2010

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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