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Thread: Need advice after complicatiions from ACE surgery.

  1. #1

    Need advice after complicatiions from ACE surgery.

    Back in October (2006) I decided to have the ACE (MACE, Malone, Appendectomy) procedure done. My decision to have it done was to make things easier, especially when traveling. My BP before took at least an hour, but sometimes as long as two hours.

    I talked to my SCI doc first, he said it sounded like a good idea, looked into it and referred me to a surgeon. After talking to the surgeon, he also agreed that my reason for doing it was a good one. He explained how the procedure would be done and the risks involved, etc.

    I had the surgery the first week in October of 2006. When I was discharged, I had to wait 2 week before using it. There was a foley type thing in the stoma, it had a white disk sewn to my stomach with three tubes coming out. After the 2 weeks were up, I went back for them to show me how to use it. I had to keep that thing on my stomach for another 6 weeks. It worked fine for those 6 weeks.

    After 6 weeks, they removed the foley thing, and he wanted to put a button type device in the stoma, which was like a foley because it had a balloon to keep it in. The thing was called a Mikey-G tube or something like that. It basically was a cap on the stoma, and when I'd go to do the bowel flush, I'd uncap it, snap on a tube that hooked to the gravity bag instead of using a catheter. The tube that went into the stoma was only about an inch long though.

    When I got home and tried to do a bowel flush, the water just ran out from around the button, so I deflated the balloon, took it out and used a catheter. It worked fine with a catheter, and I was able to do the flush successfully. I called them the next day and told them what happened. They had me come in, ordered a longer tube thing. It wasn't much longer and still didn't work, but when I went back to get that one, they gave me the box that it came in which included the "instruction manual." On the first page of the manual, it said to measure the length of the stoma and order the correct length tube. They never measured the length of the stoma.

    I also found out that this device is a feeding tube that goes into the stomach, and the longest one they made was only about 2 inches long. When I used a catheter, I had to push it in about 5 inches before the water would go through. After another call and visit, they told me to just use a catheter.

    I also had to keep it covered with a gauze pad because it constantly oozed mucus. They told me that would eventually go away and I could just cover it with a band-aid.

    It was working fine just using a catheter. They gave me some 1500ml bags, and told me I could use plain tap water to flush. They said it would take some trial and error to find out how much water it would take, but not to exceed 3 liters in one day. What I found to work the best was to fill the 1500ml bag up and start letting it flow in. I would usually start to have things come out after about 200ml. After 1000ml went in I would clamp it off (approx. 10 minutes). I would wait for that to pass through, and then let the last 500ml go through. I was usually done in 20-30 minutes. If that last 500ml came out "clear," I knew I was done. If more "stuff" came out, I had a 2nd 1500ml bag ready, and I would run 500ml at a time until it came out "clear" on the other end. This was working fine, and I was not having accidents.

    Then the trouble began exactly one month after I had the original foley taken out. When I went to do my bowel flush, I could not get the catheter to go in. Before this day, the catheter went in without any resistance, and would go in all the way if I pushed it that far, but I would only put it in half way (~6 inches).

    This time however, the catheter would only go in about 4 inches and stop. The water would not flow when I hooked it to the bag either. They told me this might happen and to use a smaller catheter if it did. I had been using 14fr. catheters, the same kind I use for my bladder. They gave me some 12fr. and 10fr. catheters to take home. I got out a 12fr. catheter, and it did go in with a little force. I flushed some water in with a syringe and tried the 14fr. catheter again. It went in a little farther, but stopped like it was hitting something. This time the water did start to flow in.

    About 500ml had gone in and nothing was coming out. Then all of the sudden every muscle in my abdomen and chest tightened up and I got a sharp pain in my right shoulder. I clamped off the water bag, and thought maybe I was stopped up, so I put on a glove and started digital stim. I was getting stool, but no water. My muscles kept getting tighter, and it was hard and painful to breath with my chest tight. I was afraid I was going to get AD, so I called 911. Then I called my sister to come over and open the door and so I wouldn't have to go to the emergency room alone.

    I covered up with a towel and wheeled out of the bathroom. I dug out my blood pressure machine which I hadn't used in ages and took my blood pressure. My blood pressure was normal, for me at least. By the time the ambulance got there, my muscles had already began to relax. I had to explain to the paramedics about the surgery, what I was doing, what was supposed to happen and what did happen. They took my blood pressure and freaked out because it was so low, but I told them that was normal for me. They took me to the ER anyway.

    When I got to the ER, they took an X-ray of my chest and abdomen. The ER doc didn't see anything wrong, and just told me to go see the surgery doc as soon as possible. When I got home, I did my BP the old fashion way, with a Magic Bullet and a finger. No water ever came out.

    I'll try to summarize this without leaving out the important stuff, or this will end up being a novel. The doc that did the surgery took a job with a hospital out of state. He told me this before I had the surgery, and I decided to still have him do the surgery rather than start over with another doctor. He stayed in town to follow up with all of his patients before leaving, and the last I saw of him was when I went in for the post operation follow up.

    So after I had this problem, I was seeing two of the other doctors that were on his team. The first one kind of an ass and wasn't at all concerned about the reaction I had. His only concern was that I couldn't get the catheter in. He used some firmer catheters and started with a 10fr. and it went in just fine. Then a 12fr. went in eventually after he forced it. He then got a 14fr in, and taped it in place, told me to keep that in for a few days and if that didn't work to come back. He also gave me a couple of the firmer 12fr. coude catheters to use if I had problems later getting the catheter in again.

    I continued to have problems getting the catheter to go in, and had the reaction whenever the water went in. They finally got tired of me and pawned me off on a doctor at UAB after I kept showing up at their clinic without an appointment.

    My first appointment with the doc at UAB was the week before christmas. Until then, they told me to insert a catheter into it every day and flush it with 40ml of water. I did that for as long as I could, eventually the catheter would not go in far enough and I was unable to get water in. The mucus that was coming out stopped the same time that the catheter quit going in.

    I had to drive all the way to Birmingham, AL, tell this new doc the whole story. Then he wants to do some tests, but of course I have to wait until January after the holidays. I had to make two more trips to Birmingham for tests. They did an X-ray with contrast. They had to use a very small catheter to get the dye in, but it showed that the fluid going in was not leaking out anywhere. He couldn't tell me why I was having that reaction, or why the water didn't come out. Next he wants to go in with a scope, but first he has to fix the stricture. He'll do all of that at the same time though.

    Fast forward to February when I have the surgery for the stricture and the scope. I had to go and stay overnight in the hospital for the bowel prep. The stuff they gave me for this bowel prep was like no other stuff I had before. It was a small bottle of this nasty salty tasting liquid that almost made me throw up it tasted so bad. I had to drink one, wait an hour and drink another. It still makes me want to throw up thinking about it now. Anyway, he fixes the stricture and said he didn't see anything wrong with the scope. They put a 16fr. foley catheter in, and had a single stitch around it to hold it to my stomach. He told me to go back to doing the bowel flushes and come back in 2 weeks.

    I had the same reaction when I tried to do the bowel flush for the first time. I had to go lay down until my muscles relaxed, then I used a suppository to do my BP. No water ever came out. I called them and told them about it, and all they said to do was continue to flush it with 40ml of saline each day. I did that, and every day I did my BP (with a suppository), I would put in a couple of shots of saline with a 60ml syringe just to see if any water every came out, but it never did.

    When I went back 2 weeks after the surgery, he still had no explanation as to what was happening or where the water was going. He wanted to leave the foley in for another 4 weeks, and told me to keep trying.

    I continued to do my BP the old way, but flushing in two 60ml shots of saline first. Then one day, I injected the saline, and was getting out a suppository when all of the sudden water came out the other end. To make sure, I used the syringe to put more water in, and more water came out. So I filled up a bag and was able to do a bowel flush without the reaction. It continued to work for the next 2-3 weeks.

    I went back for my last visit with the UAB doc. I told him it was working again. He took the foley out and sent me home. The very next day, I went to do a bowel flush, and I couldn't get the 14fr. catheter in. I was able to get a 12fr. in, and after ~500ml of water went in, I had the same reaction as before. I called them the next day, and they're out of ideas and are are pawning me off to yet another doctor.

    None of the doctors I've been to so far have bothered to observe the reaction I'm having. It's not pleasant and I hurt for a couple of days afterward, but I think they should see what is happening.

    This new doctor is near Miami, Florida at the Cleveland Clinic. I was supposed to go last month, but I called and rescheduled it. My appointment is next week (June 26).

    I continued to insert a catheter and flush in some saline when I did my BP for as long as I could, but each time it got harder and harder to get the catheter in. When I inserted the catheter, very dark blood would come out, and when I flushed the water in, it would come right back out of the catheter when I removed the syringe. It eventually got to where I couldn't even get an 8fr. catheter in, so I just quit trying and now the stoma has grown closed. I'm wondering if it's even worth trying to fix now.

    I made 8 trips to UAB over 3 months, and they couldn't fix it. I don't want to go through the same deal, except having to drive about 4x as far. A little part of me is saying at least go ahead and see what this other doc has to say, stay a few extra days in Florida and make a mini vacation out of it. The rest of me is just ready to call it quits and give up.
    Learn from the mistakes of others. You won't live long enough to make all of them yourself.

  2. #2
    OMG! this sounds like a horrible experience! before you had the ACE surgery done, wre you having accidents during the day? if you're able to put the suppository and do the dig stim by yourself, i would forget about the ACE, even if the other way takes longr. how often were u doing the bp with the suppositories? every day? maybe u could do every other day which would lessen the burden. neway that's just my inexperienced opinion.

  3. #3
    jim, some post!

    Hope you get some info ASAP, before your appt.

    If you go, don't expect me to be your personal unpaid mapquester while your on the road!



    let's bumparoo this thing.

  4. #4
    OMG, sounds like a real mess. The only thing I thought of when you described your muscle tightening and shoulder pain, was that it sounds like what happens when anyone has a laparoscopic surgery and they inflate the abdomen with air. They do desufflate at the end of the surgery, but lots of times some air is left in the abdominal cavity, and can cause pretty bad abdominal and shoulder pain. So - maybe the water is going somewhere that's causing a reaction like this? I think I'd be camping on their doorstep til they fixed this!!!

    Fingers crossed that you get it all figured out.
    _____________

  5. #5
    Quote Originally Posted by chick
    If you go, don't expect me to be your personal unpaid mapquester while your on the road!
    Don't worry, I have a GPS in my car now.
    Learn from the mistakes of others. You won't live long enough to make all of them yourself.

  6. #6
    I don't have much experience with the ACE, but both the clients I know well who had them never were satisfied, and both went on to have a regular colostomy done instead. They are much happier with this.

    (KLD)

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