The Ulcerative Colitis Surgery from a patient's point of view

A personal experience of going through a ileoanal anastomosis surgery, or pull-through operation

Surgery is one way of dealing with Ulcerative Colitis, and in my case it was the only way to survive, so I did not have much of a choice. After having been falsely diagnosed and (mis) treated for haemorrhoids for nearly 9 months, the situation had gotten so bad that my back then girlfriend, now wife drove me to the hospital, into emergency. Little did I know that day that my life would never be the same, both physically as well as emotionally and intellectually. I grew from teenager to adult in three weeks.

The technical term for what I ended up with is an ileoanal anastomosis, or pull-through operation. The nice part about this is that, externally, I look the same as everybody else, with the advantage of having a nice waistline, because I am missing a few things that others have in their abdomen. This was not always the case. In order to get there, I had to have three surgeries, and I had to have an ileostomy or coleostomy for six months. That means I had my intestine come out on my belly, and a bag that would catch anything that dripped out of it sealing it off. Sounds awful, but you get used to it. Some people were not as lucky as me (yes, I actually call myself lucky) and are stuck with such a contraption for their entire lives, which is unfortunate.

When I got this surgery done, I was the 10th person in Victoria, B.C., Canada to get it. This was back in 1987, so I have now been living with the ileoanal anastomosis for 15 years or so, and it's worked out quite well. There are problems from time to time, but in general, it is a workable solution.

So here is what happened in my case: June of 1987, first blood in stool. July, first doctor visit with an M.D., diagnosed as haemorrhoids. August, visit with another doctor, still same diagnosis. September. Next visit with original M.D., still insistence on haemorrhoids, more useless stuff-up-your-bum medicine. November: Final visit with M.D., indicated that things were getting really bad. Still the same. End of January, very low in energy, drained, my girlfriend drives me to the hospital, I am checked into emergency and end up staying there. Two weeks of enemas and other such treats, antibiotics, steroids, countless bloodtests, a sigmoidostomy or colonoscopy, TPN (total parental nutrition, i.e. getting fed via an IV), and 11 transfusions of blood later, my surgeon walks into my room one evening and says that we need to operate. I asked when. He said tonight. He feared that I could actually have a rupture, and I think he was right. Two hours later I was on the operating table, the surgery was to remove my large intestine to basically save my life. They would leave the bottom 15 cm of it inside of me in order to do the pull-through operation later. So when I woke up, I was no longer in mortal danger, but I did have an ileostomy on the right side of my belly.

Two notes I would like to make at this point. The first one is on Steroids. They can change your personality to a very large extend, turn you into a totally different person. My girlfriend who had known me for two years so far did not even know who I was anymore, that is how much I changed. As soon as I went off the steroids, things went back to normal, so be aware of this.
The second thing is about hospitals and your rights. It's simple: You have none. Once you are a patient, people tell you when you wake, when you sleep, when you eat, what you take, what you don't take, everything, so be aware of this as well, and be prepared. I was once threatened by a nurse that if I did not take my medicine, she would report me as being uncooperative and I would be expelled from the hospital, i.e. you either do everything we tell you or we are going to vote you off the island. I was seventeen at the time and very weakened from all the medicines, I simply did what they told me to do. It might have been a mistake, but it's too late now. So, be prepared, and make sure you know ahead of time what you want and what you don't want because once you are in there, it's too late.

Following that, the most important thing was to recover and strengthen myself for the next surgery which was booked in July. It takes that long for everything to settle and it was also important to give the remaining large intestine (rectum) a chance to heal. This is the tricky part of the whole operation, whether the rectum has sufficiently healed, and whether it can be sufficiently controlled, otherwise this will result in a big mess, literally, and will have to be undone later. I visited my surgeon several times and it was decided to proceed with the second surgery, to create the ileoanal anastomosis. This is a very long surgery, it usually takes about six hours but mine ended up taking seven and a half. I saw the surgeon the next day, and he looked much more tired than me, I was rather chipper that day. In any case, what happens is that they take what is left of your colon, remove the lining, then take your small intestine, make a loop at the bottom, cut open the sides and sow it all together to form a pouch. The pouch can be either in the shape of an S or in the shape of a J. I personally ended up with the J variety which has less side-effects, but does not have as much capacity. Then the whole things is inserted into the Rectum Muscle, opened at the bottom and sown in. To allow the whole thing to heal without food getting into it and potentially infecting it, the ileostomy was still used, and on top of that it was switched to the other side because it worked out better, so now I have matching scars, two on either side and a huge one down the middle. They have faded by now and most people don't even notice.

Then on the third surgery, which was in November, the final ileostomy was removed and the whole thing was hooked up to see how it works. It worked well. It is something you need to get used to, and you learn to stay close to a bathroom in the beginning, and even after 15 years, knowing that there is one close-by is not a bad idea, just in case. But all in all, it worked for me, but I have heard of other people that were unable to control their movements, and had to have the whole thing removed, and going back to an ileostomy, which is too bad, especially after all the pain that goes into getting a pull-through in the first place.

The important thing to remember is that this allows me to lead an active live without dependencies. I travel around the world, so long as I can have a hotel room with a bathroom, as I use it several times in the night. I go biking, hiking, sailing, scuba diving, skiing, I manage a company, I have a family, and short of having to go to the bathroom more frequently than others, I am very much a normal person. And you learn how to work around your limitations: You plan long excursions in the morning because bathroom trips are less frequent, and you make sure you know where the bathrooms are, just in case. You learn, adapt, and life goes on. When I was a teenager, I thought this would be the end of my life, a reason to kill myself if I ever got something like this. But I have learned that the human being is incredibly resilient, and we can adapt to just about anything. This applies to just about anything in life, and there is a lesson to be learned from this. In the end, it was all worth it, because the powerful play of life went on and I did contribute a verse.

On the lighter side of things, there is one more advantage to having this: Being down to about 15 feet or 5 meters of functional intestine instead of the regular 21 feet or 7 meters, my ability to absorb nutrients is cut down significantly, which is not necessarily a good thing, but it does allow me to eat more than the average individual without gaining weight. People frequently comment on my ability to eat large amounts yet not gain weight, and they want to know my secret to weight loss, whether I am on some new diet. I always tell them that if they want to, I could always introduce them to a good surgeon that I know, that can do the same thing for them. They think I am joking ...

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Pouchitis - ten non-medical ways of avoiding and fighting it

For more interaction check out ... My Colitis / IBD / Pouchitis Blog


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Disclaimer: These as well as all the other documents on this website are based on my own personal experiences, and are not a replacement of a professional opinion by a qualified physician, for all that this was worth in my case. The purpose of sharing my experiences with you is to help you get through this, and to learn of other ways of dealing with your condition. I am not a medical doctor, I don't have any sort of formal training in this or any other medical field. The only thing I can offer you is what it was like for the past 20+ years and what it is like now, and in the future. Any advice I give is to be taken into consideration, and you are welcome to act upon it at your own risk. I am not saying it will help you, or that it will not hurt you, all I am saying is that this is what I learned, and I am wanting to share it with you. After that, you have my best wishes for success and happiness. And if you find something that works for you, please, share it with the world, because we need to know more than what modern medicine is telling us, which is not enough. Be well.
Copyright@2000-2011, Juergen Amft, All rights reserved