Boots’ UC Journey
I was diagnosed with a severe case of Ulcerative Colitis in February 2008. In December 2007 I started going to the bathroom about twice day (more than my normal), was having bloating after every meal and throughout the day, and was bleeding a little bit in my stool. No pain yet. I visited my doctor and he told me I had IBS and hemorroids from going to the bathroom more frequently and gave me some probiotics to take. Then in the beginning of January, the bleeding increased. Since my grandfather had colon cancer, my uncle has Crohn’s, and my aunt has colitis, I decided it was time to rush to the doctor again. He said the same thing and said that maybe I should get a colonoscopy if it got worse. I didn’t want a colonoscopy, so I didn’t schedule one right away. Big mistake.
In the beginning of February, I remember it was a Friday, I just woke up one morning and had bad cramps and was going to the bathroom like 3 times just in the morning. I went to the doctor that day and told him my symptoms and he gave me medicine to calm my intestines. He said that we should get me into a GI. We made an appointment, but I couldn’t get in until March 3rd (almost a month from that point!). I called him after two more days of severe cramps and said that I didn’t think waiting that long was going to work out. I was also talking with my mom about this and she called my family’s GI, who knowing my family history, got me an appointment right away.
During this time, I was hardly eating anything because it was causing such pain and bathroom issues. I remember visiting an IBS website and trying to get information there. I would cook egg whites and eat only those and white rice all day. I would also get a psychological nausea from the worry of food being in my stomach and it would cause me to vomit. I got to the point that I stopped eating right before I went back home for the appointment. Even putting my toothbrush in my mouth made me vomit, because I just didn’t want anything to enter my mouth. Needless to say, I lost 30 lbs (I was originally 190 lbs at 6 feet) and so I looked emaciated. I lost all color and was as pale as a ghost, and could hardly walk around because I was so fatigued. I knew it wasn’t good.
I got home in the middle of February and had an upper GI barium scope done and talked with the doctor. My colonoscopy was scheduled for 4 days later. I did the bowel prep (not good for my condition, because it made me totally dehydrated) and we went to the appointment the next day. They said that my heart rate too high (it was 130) and took some blood levels. They gave me something to calm me down (I didn’t notice any change) and put me in the procedure room and got me prepped. I was turned on my side and the scope was gotten ready (my heartrate at this point was about 143), but then a nurse came in and said they couldn’t do the procedure today, because I was too sick and needed to be admitted.
I was admitted to the Intensive Care Unit immediately, where I was visited by a series of doctors and told that my blood levels were 14 (where they should be about 42 for my age and body) and that I was severely dehydrated. I was given two blood transfusions right away and pumped with liquids. I was scheduled for another colonoscopy and endoscopy the next day. In the new procedure room, with my heartrate a little better, they got me ready. I was given a shot of a liquid to drink and it was to numb my throat for the endoscopy. It was scary, because right away after you drink it, your throat goes numb and you feel like you can’t swallow or breathe (which you can, you just can’t feel it), but then I was just put under right after. I woke up after the procedure and the doctor came in and shook his head and looked flushed. He said it was a severe case of UC, one of the worst he’s ever seen. I was to be kept in the hospital in case I ruptured and needed emergency surgery. Needless to say, this did not make for a pleasant stay.
But the ICU is a very nice area, you get a private room and bathroom and the nurses are crazy about making sure you’re all set. My mother was a wreck and stayed in the hospital with me from about 7am to about 10pm. She was a blessing to me through all this and never let me be alone. I was right away put on Flagyl (in case I got an infection), Prednisone (grrrr), and 12 Asacol a day (for the inflammation). Five days later, I was given one more blood transfusion and then released from the hospital. I was getting significantly better and there was no more risk for rupture. I stayed home for another month, as I was bedridden the whole day and was in serious need of recuperation.
The next three months were all about healing and getting back to a normal life. I got to feeling pretty good and for a period of about 3 weeks, I was going to the bathroom just 2 times a day. But I had a very limited diet and wasn’t doing anything too exhausting. Then in May, I started to get a little sicker. I was continually getting worse and we called the doctor and he said that we should get me on 6MP. I was on them for about 3 weeks and still not getting better and so we scheduled my first IV Remicade treatment for June. This was all at the same time that I was at about 10mg on the Prednisone. I went back up to 30mg for awhile and when I tried to taper again in July, I got even sicker and had to go home again for a month to recuperate. I did a total of 4 Remicade treatments, and could not get myself below 10mg on my Prednisone. I was told that I was steroid-dependent and that the medications were giving no results, so I should consider the surgery.
In August, I was scheduled for a flex-sigmoidoscopy. I had to do an enema bowel prep and the upsetting thing about this procedure is that your given no medication at all. You are completely awake and aware of everything. It’s really only about 5 minutes long, but it’s just uncomfortable, because of the tube up your colon and the air they push up there. My doctor said that the colitis was still very active and that he found a lump just above my rectum. A week later we found out it was stage 2 dysplasia. Stage 4 is cancer, so I was halfway there. Not good and this was only after 6 months with UC. He said I needed to see a surgeon immediately to either have my colon or the lump removed. So I had a choice: Do I have my colon out? (which at that time was the worst option possible) or do I have the lump removed? (with a large chance I would just get more lumps in the future and most likely get cancer within 5 years). I honestly couldn’t decided, but we made an appointment to see a surgeon at the Cleveland Clinic in Ohio. We drove from Syracuse, NY and talked with a doctor who said there was a new procedure where you could remove the lump and even dysplasia that couldn’t be detected yet. It was called High-Definition Microscopy. This was scheduled for the last weeked in September. Luckily, I have family that live in Akron, OH, so we stayed there for recovery. The surgery was very simple, it was an outpatient procedure and I didn’t feel pain, but I was just a little uncomfortable. But then again, I was living with anal pain for months, so how could I accurately detect how I felt?
We then went about a month without doing much, while doctors were talking with each other and figuring out what to do. I stayed at 20mg on Prednisone and it was nice to not have to worry about my future for a little while. Finally in November, we talked with the doctor at the Cleveland Clinic and he said that I needed the surgery. There was no question. He said the medication was going to do more damage to my body than the disease and that already pieces of my large intestine were decaying off and coming out in my bowel movements. The surgery was scheduled for December 10th, 2008.
It was going to be a 3-part surgery, done laporascopically. First, I needed to have my entire colon removed and be given a temporary ileostomy. There also needed to be time for my rectum to heal from the UC. Second, they were going to create the J-pouch and connect it to my healed rectum, but keep the ileostomy and give the J-pouch time to heal. Third, they reverse the ileostomy and make sure everything flows through the J-pouch nicely.
I was in a state of confusion and terror for about 3 days and then I just got back to my normal life. I decided that if I didn’t think about it, I didn’t have to think it was going to happen. Or I would pretend that it was going to happen to someone else. I didn’t really tell my friends, because I didn’t want to talk about it. But it still affected me. I couldn’t really tell, but I was making mistakes at work that I would normally never do, and I suddenly lost all care for the troubles of others. I had that “can it be worse than what I’m going through?” type of attitude. But at the same time, I would see the news and look at how many people had it worse than me and I would just be thankful for that. It was a very confusing time. I had been seeing a homeopathologist since July and I was telling him about my feelings and he helped me work on that aspect and gave me remedies to try and get my mind on the right track. That definitely helped me out.
A lot of my issues in dealing with UC and dealing with the surgery was because I’m gay. Having frequent bowel movements and bleeding made me feel extremely unattractive and I lost almost all of my sex drive. I have been with my partner for over 2 years and he’s been with me through all of this, but it still put a strain on our relationship, because I don’t think he understood for a while how it made me feel. He may have been confused why I didn’t want to be intimate. And if I had to get my large intestine removed, that meant that a part of my sex life would be gone forever and I would never be able to experience it again. That was a huge thing for me to have to deal with, because that meant that I would be healthy, but I had a huge loss as well. I thought about this for quite a while and realized that I wasn’t sexually active with the UC anyways, so what would really change? I never talked to a gay male with UC, I always talked with straight people who had the surgery and they would keep telling me get it done, because it would be the best thing for me, but it was hard for me to tell them why I didn’t want it. I wasn’t scared of surgery or pain or having a bag or anything. I was scared of losing my gay identity. Until you use your colon for sexual purposes, you wouldn’t know the dilemma of having to lose it. And then there’s the part of having to tell every sexual partner in the future and having to go through all that and making them wary of being sexually active with me. I always thought that I would feel unwanted and just decide to be single for the rest of my life. But I had many talks with my partner and I felt that if he didn’t mind, then I could deal with it, because I’d already planned on being with him for the rest of my life. So I wouldn’t have to deal with telling anybody in the future. I had the right amount of support.
One week before the surgery, I had a party at my apartment with all my friends. It was a “Goodbye Large Intestine” party. It was a blast and it was great to see my friends and we all made a good time from a bad situation.
So came the time for me to leave for Cleveland for the surgery. The day before my surgery, I had 7 appointments to get me admitted and assess my condition, etc. I had an EKG, bloodwork, a physical by an internist, and therapy with a stoma nurse. They were all very easy appointments and were very fast. The stoma nurse showed me an ostomy bag and how to use it and then make a mark on my stomach for where the stoma would be.
When we got back to my aunt’s, I started the bowel prep, which was much easier than the colonoscopy prep. You could use gatorade this time and the bathroom habits weren’t any different than what I had to deal with the past year. I had totally accepted the surgery at this point, and so when I went to bed, it was easy for me to fall asleep, knowing that the next day I would no longer have to deal with pain everyday.
I woke up on Wednesday, December 10th and showered and looked at myself in the mirror, observing what my stomach looked like for the last time without a stoma and scars. My uncle drove us to the hospital and we got ourselves checked in. They called us back and got me in the prep room and got the IV started and gave a heparin shot to slow blood clotting. The shot burned going in and kind of felt like someone punched me in the back of the arm.
I was then wheeled outside the OR room, where an anesthesiologist talked to me about the usual questions they ask you 100 times in a hospital (allergies, anything to eat/drink, any pain, any problem with anesthesia, etc, etc…). i was then brought into the OR. There were a bunch of people getting things ready. They were all very concerned about my comfort and were very nice. The main nurse said that she had this surgery done 12 years ago. That made me feel better knowing I had someone there with me who had been through all this. They gave me medicine that made me very tired and loopy and put an oxygen mask over my face, then I slipped into unconsciousness.
It seemed like two seconds later that I woke up and became aware of my surroundings. I hadn’t opened my eyes, but I could still feel the breathing tube down my throat. I was still medicated so I didn’t mind it much, but I remember them asking if I wanted them to remove the tube. I nodded my head and they took it out. It didn’t hurt, and it only felt like it was 3 inches coming out, but like I said, I was still medicated. I was constantly taking deep breaths and trying to move my feet, because I know they say that’s the best thing you can do after surgery. I was there for about another 45 minutes and they brought me to my room. My mother was waiting outside the door with my sister, who flew in from NC. My mom started crying when she saw me and started squeezing my hand, and it made me start to cry, which hurt my stomach, so I tried to stop. I think we cried because we’ve been through this from the start and this was the end. They were tears of joy.
I got set up in my room after that. It was a little hard getting to the bed, because you have to slide over and that uses a lot of stomach muscles, but the nurses were very helpful and did most of the work of pulling me over. I stayed awake the rest of the day and didn’t really feel that tired. I figured it was because I was finally healthy, and so why would I want to sleep through it? Plus a lot of my family had driven to Cleveland to be with me and I wanted to stay awake to see them all. The nurses were constantly coming in and checking on me, which was nice. I had the morphine drip, and it was set at 6 minutes. I pressed it about every 10 minutes though, just to make sure I stayed ahead of the pain. I said my pain level was about 3 or 4, because it wasn’t really pain, it was just like an ache.
I remember sleeping great in the hospital too, because I had a great bed and I didn’t have to get up to go to the bathroom anymore! It was very strange not having to do either bathroom visits (because I had a catheter too). I had bloodwork done every morning, and two heparin shots a day. These were a lot less painful than the first one because I was on morphine. I had three band-aids over the wholes in my stomach and a gauze pad over the one on my pelvis. It was all very minimal. I didn’t have a drainage tube, which I didn’t notice until two days later. When I asked the nurse, she said that some people don’t drain as much and I probably didn’t need one. I saw the doctor each day and he was happy with my progress and gave me pictures of my large intestine (I asked if I could keep a part of it, but they wouldn’t let me).
I was released from the hospital on Saturday, December 13th, so I was only there 4 days. They said I was doing very good and that there was no reason to keep me there. I had bread and pasta for dinner that night, which may not have been a good idea, because I had a blockage later. It wasn’t bad at all, but I felt pressure in the area of my stoma and I was having no discharge. I tried the positions your supposed to be in, but it was hard since I had just had the surgery. I stopped drinking just in case, and went back to bed at around 2am. I woke up at 6am, because I felt some gas and saw that my blockage had passed. I was very relieved and fell back asleep. I have not had a blockage since. I just layed around for a couple more days and we finally started heading back to Syracuse on Tuesday, December 16th. I kept it easy for while and was watching movies and playing Wii, which my family gave to me as a goodbye large intestine present!
Each day from then on got better and better and I took my bandages off and was now proud of my little scars. I showed it to everyone that wanted to see and kept a positive attitude about everything. Compared to the pain I had to live with everyday, healing was easy. It was some great rest time and family members were always visiting me and keeping me busy. I got used to changing my bag very easily and never had any other problems with my stoma. I’m now almost 3 weeks post-surgery and my scars are healing great. I just went to the mall yesterday, which was my first time driving and my first time out. It felt great and I felt like i had more energy than I’ve had in years.