Ginette's Story

Shaz, my story is like yours, sicker than can be with UC, end result being an ileo. Mine didn't start quite as early as yours though, but if I think back now I always had problems with my bowels one way or another and always had stomach aches.

Back in around 92', my doctor diagnosed me with irritable bowel. Just kept jumping from constipation to diarhea and the tummy aches were awful. Then a few years later I was working at Tim Horton's and just kept getting worse and started with the bleeding and more cramps. Saw a specialist, said I now had UC after scoping me. Boy did I not like that test. That has to be one of the most degrading tests I have ever had and to think he says I have to have this done every year didn't do anything for me either!!

Well on asacol I went and prednisone when I had flare ups, when I think back this was not a good time in my life boy. I remember I used to walk to work for exercise and after a while I just couldn't anymore because I got so sick that I became incontinent. Talk about upsetting. Messed myself couple of times on the way home from work, I just cried so hard cause I couldn't hold it anymore. We then decided this was not a good idea anymore, to be working there that is.

Finally went into remission and got offered another job as a waitress at Culpepper's. Great restaurant, great job, awsome boss. I loved it, but again very stressful job, and guess what it came back again!! More prednisone, and you know what too something I haven't heard anybody mention since I've been on line is this doctor used to give me Tylenol 3's by the 100's. And that was what kept me out of the bathroom so much. Never constipated me, just went 15 or 20 times a day instead of 30 or 40!! So for three years from 95 to 98' I was high on Tylenol to function. Pretty scary eh?

Meanwhile my family doctor I don't think was aware of this tylenol fact cause one time the specialist was out of town and I needed a refill so I called my family doctor and all he gave me was 30. Started wondering then about this specialist.

In June of 98' I got real sick again. The specialist put me back on prednisone again. A lot of time went by and I wasn't getting better and he just wasn't doing anything more for me so I went for a second opinion to another specialist . He informed us that after being on the prednisone for one month if it hadn't worked it never would so he recommended this other drug but said that I would not know if it would work for three months and had to do these steroid enemas as well. That was no picnic!!

By August I was getting pretty bad and still trying to work to boot, we weren't in a position for me to be off work for too long. I spent most of my time in bed and my husband made me a bathroom in the basement off our bedroom cause half the time I was staying upstairs cause I was in the bathroom so much in the night I was sleeping upstairs on the couch. Too tired of running up and down the stairs and also became incontinent again. So I became a prisoner in my basement, he put a tv in our room and I would just lay there, high on tylenol, shoving enemas in there when I had to, waiting for this medicine to work.

Sept 2, I won't forget it my husband went in to our family doctor's office and told him he needed to see him right away. He said he would when he could and my husband said he'd wait all day if he had to. I think then he realized my husband was frantic and agreed to talk to him. He told him all that had been happening, and that he felt that he was watching me slip away day by day and that we needed help. They admitted me right away and started me on some steroids by intervenous for ten days then sent me home again, so from Sept. to end of November I was home in bed again and not improving at all. It got pretty scary, my poor kids, I have three of them thought I was dying, they would hear me screaming and crying in the bathroom every day and I thought I was dying too.

My mother got me on some kind of herb stuff. At one point between drugs and herbs I was taking 25 to 30 pills a day, but I don't think anything could work at that point, I was too bad, point of no return. Finally my husband carried me back to the hospital and after 10 hours in the hospital they finally admitted me back in again. It was coming out both ends now, I was vomitting blood and diarhea every 15 minutes or so. Even then the admitting doctor was humming and hawing!! My husband went ballistic!! He told him if he thought he was sending me back home in this condition he was crazy! They finally got the specialist in and up I went .

For two weeks they pumped me with some more drugs, stronger steroids and the doctor said one week on this one steroid was all you were allowed to stay on and if this didn't work I would need surgery. Meanwhile my family doctor was optimistic that the drugs would work but you must remember that I don't think the other specialist had been getting the whole picture here cause he kept saying that only a small piece was infected!! A surgeon was brought in and ET nurse and they said if I just had the surgery I would feel so much better. I was scared to death, there's a lot of stuff that's still blurry even now, I get confused, probably from all the drugs.

The first specialist for some reason I don't remember ended up doing a scope rectally and down my throat, that I remember, I was really upset cause this doctor never wanted to give me sedatives during the scopes and he finally gave me a little bit and numbed my throat. They found my stomach was ulcerated and my husband was with me when they did this cause I wouldn't agree otherwise, and then they did it the other way and I think that's when he realized that just maybe I was a little sicker than he thought!!

The surgeon came into my room that night it was a Friday night and she said that I didn't have a choice anymore cause I was pretty bad she thought after looking at the results and that if we waited any longer I would never survive the surgery cause I was depleting fast. It happened at the time that my pastor and the elders of my church and husband were all there when this happened and she said she would check to see if she could get an operating room that weekend. She came back a few minutes later and said she would do me that night at 10:30p.m. Talk about scary!! I looked at my husband and remember saying are we sure about this and he said he couldn't watch me go through this anymore. I remember they called my parents, they were at their Xmas party, in and them along with the rest of the crew, prayed for me and in I went . They said I was back in recovery at about 2:30 I think, I just remember being in so much pain I passed out, pretty blurry episodes there. My mom said I woke up and said I want to die it hurts so bad, but one thing I do remember as the days went by is that I've never had those UC pains ever again from that moment on.

The next two weeks were tough too, recovering was painful, my mom said I had my finger permanently holding the morphine drip even though it would only give me the extra dose every 10 minutes I still wouldn't let go of it . I remember one nurse used to come in my room and I would start to cry cause the rooms were so small and this lady was wonderful but she was a little on the heavy side and when she would come in and check me or all the equipment, she would hit my bed which would send me into vibrating pain. It was so weird. The minute a nurse would go near my stomach or touch my bed, my stomach would start to spasm up and down, I'll never forget that, that was so incredibly painful. And this nurse was amazing, I felt so bad cause she was great but she just kept hitting my bed.!!

I remember too all the equipment they had on me, pretty scary, they took the feeding tube out of my arm before surgery and put it in my neck while I was awake, not quite sure why they didn't just put me to sleep, then put it in but anyway I had that plus the IVs and three pumps, two on one side for feeding and meds and one on the other side with the lovely morphine that kept me real happy!! Things finally were getting better and they started taking things off me,oh and I had two bags too after a while cause the surgeon had left a piece of colon in there to reattach inside if it became an option , but she had a hole on my left side to which the colon was sewn to, to allow the infection to drain out of me, she didn't want this draining inside me. Talk about stink, the stuff that was coming out of me smelled so bad and it would soak my bed right through the bandage so they put a bag on that side too, boy did I look a mess.

Finally started feeling stronger , talking about starting to feed me, that wonderful jello and broth that to this day gives me the shakes when I see it . Can't stand that stuff anymore, anyway step by step I got better and they gave me full fluids!! Well I thought I was in heaven, they brought me icecream, and milk and pudding and milkshakes, but they told me go easy or you'll feel really sick. It made me feel a little funny but not too bad.

Couple of days later had breakfast, now that didn't make me feel too great, first real solid food in months and when it got down there I felt green.I remember saying to the nurse I don't think the food knows where to go , everything's screwed up in there, but I go through it and got better.

Three days before Xmas they let me go home, remember being so excited and scare at the same time. I cried on the way home ,I just felt so strange, not the same person anymore. Boy remembering all this is harder than I realized!! I remember walking in the door of my house and sitting on the couch and crying again, it was really a weird feeling I was having , I think very overwhelming too. People had come and cleaned the house for my husband and I , the fridge and freezer were full of food, ready to eat, it was amazing. We went to my mom's Xmas eve and stayed there and my mom was so great, she did all the baking and cooking and shopping for my family. What a Xmas!! There was so much food, that night I ate a lot and I ended up in my mom's bed, it did not feel too good after that, so I learned real quick to control myself.

The next day we went back home and the VON's would come every day to care for me and my new little stomy, that's what I call him and to teach me to take care of it myself, they also taught my husband how to do this too. He was so wonderful, he stood by me every day through this whole adventure he even cleaned the bags for me when I first got home. I think that's when he realized how tough this was going to be on me. He then built me this system to help me clean the bags and it has made my life so much easier. All I have to do is take the soiled bag off myself and put it on the machine and put a new one on and the machine does all the work for me. No mess no fuss. We have had this system patented and are in the process of trying to market it now, actually we've hire someone to do this so now all we do is wait and see who wants to take it on.

It amazes me when I look back at things how God can take something so awful and turn it to good. I have a lot of faith in God and know that this along with the wonderful husband He's given me are what got me through this. My prayer now is that everybody who could benefit from this machine could have the opportunity to obtain it someday. I use the two piece system with a closed end minipouch from Convatec and it works great with the machine and is more comfortable than that awful huge bag with the clip on the bottom, I just couldn't get used to having that thing hanging down my leg. Very annoying.

By the way I did go back to work in Feb. 99' as I said we were not in a position for me to stay off for very long, but by March we decided to make stomy permanent and I had the second surgery to remove the rest of the colon and rectum. Sometimes wonder if I should have waited a little longer and put it inside but I really don't think this was an option for me as the draining never stopped, so it was still infected and I was too scared to have it all return and have to have it reversed in the end anyway. I did some reading and searching and not all people were satisfied with it inside and still had major bathroom trips. Had enough of that to last a lifetime!!

Well after the second surgery things were not all that rosy for a while, I started having blockages and was back and forth in the hospital. Not pleasant!! The surgeon said she thought it might be due to scar tissue which wasn't allowing the food to pass properly.

My job wasn't the greatest for a person like me either, I was eating on the run, on my feet for hours and pretty stressed out most times, busy restaurant, so the last blockage was at Thanksgiving '99. I never went back to work and really its been much better. I have more time to take care of myself, I can pay more attention to what I eat and my family loves it too. I still get some blockages but I've learned how to handle them on my own and have not been back to the hospital since.

Couple of things I've noticed lately though and maybe you can help me with this is that my energy level is not what it used to be, I find I get tired easily. I'll start off my day raring to go and by 2 or 3 I'm beat and have to some times drag myself through the rest of the day..I also have a lot of cramping, I'm thinking gas but sometimes it doesn't come out right away and you can feel it building so I lay down, drink tea, and eventually it comes out but sometimes it can really hurt. Its hard to pinpoint what causes this as everything I eat seems to give me cramps, I hope nothing major again, been avoiding doctors had enough. Also pretty emotional lately too, I would have my cries before but I seem to get sad more lately. I find summer a little tougher than other times..I get through it through prayers and reading my bible daily. Since I 've been going on line I find this is very therapeutic, its great to talk to people who can really relate to how you feel. I 'm amazed at how many people have this!!

Well that's my story and I'm sticking to it!! I have to go now and get on with my day, but I have enjoyed talking to you, hope I didn't bore you to death, I think I've rambled on a bit, sorry,

God Bless and take care of you!!

Ginette

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