Gastroenterologist

October 25, 2006

Wednesday was my appointment with my gastroenterologist who’s been treating me for Crohn’s since the beginning of this year (after my previous doctor stopped accepting our insurance carrier, United Healthcare), and who recently referred me for surgery (which was the best decision we ever made!). The biggest shock was that he said his interpretation of the pathology report is that I’ve never had Crohn’s disease, and that my symptoms may have been caused by Hodgkin’s all along. The prednisone I take for Crohn’s is also used to treat cancer, so it might have been keeping the Hodgkin’s at bay.

This makes no sense to Kathie or me, so my GI doctor is having some additional tests (pANCA/ASCA serum tests) run to determine the likelihood of me having Crohn’s or not. It’ll probably take two weeks to get those results. In any case, he’s terminated all my Crohn’s drugs (Pentasa and 6MP currently), since he doesn’t think I have Crohn’s and there’s no point in treating me for Crohn’s. That’s fine by me, since I feel the drugs haven’t really helped at all during the 5 years I’ve been taking them, and one of them (6MP) shouldn’t be taken during chemotherapy.

Very confused…

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Oncologist

October 24, 2006

Tuesday was my first meeting with the oncologist about my new diagnosis of Hodgkin Lymphoma. Overall the appointment went quite well, and Kathie and I left feeling better about the whole situation, now that we had more information and an initial treatment plan. I’ll be going for a PET scan on Friday which will tell us the extent of the disease, and will start ABVD chemotherapy in two to three weeks. The oncologist said that I’ve probably had the Hodgkin’s for over a year, but that since I seem to be in very good health otherwise and have no obvious lymph node problems, it’s probably not too advanced.

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History

October 23, 2006

Hard to fit 19 years of health issues into a single journal entry, but here goes:

1987, went away to college in Pittsburgh, PA and almost immediately became sick. In the summer of 1988 I was diagnosed with Crohn’s disease, a type of Inflammatory Bowel Disease for which there is no cure. However, treatment with Prednisone steroids during a flare-up would put the disease into remission for a year or two.

Starting in the late 1990s, symptoms started getting worse and more frequent, and didn’t respond as well to treatment. I was started on long-term immune suppressants called 6-MP. Health continued to decline, and in 2005 I began receiving IV infusions of Remicade, a powerful immune suppresant which has tremendous success at treating Crohn’s. Treatments didn’t help me at all, however, and were stopped at the end of 2005. I also went through a variety of antibiotics, such as Cipro, Levaquin, Doxycycline, Flagyl, and Xifaxan, to try to control the Crohn’s, as well as one of the secondary symptoms of Crohn’s, which is bacterial overgrowth in the small intestine.

During the fall of 2006, symptoms became so bad that I was in constant pain, and could barely eat because sections of my intestines had become so narrowed due to scarring from repeated cycles of inflammation. I had surgery on October 10, 2006 where 4 1/2 inches of my small intestine was removed where a fistula was discovered, and other sections were cut open and widened in a procedure called strictureplasty.

On October 16, 2006 the pathology results for the removed portion of intestine were complete, and indicated two things: first, the presence of a type of cancer called Hodgkin Lymphoma; and second, no indications of the presence of Crohn’s disease. This diagnosis is very unexpected, so further tests are being conducted to confirm both of these results.

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Surgery

October 15, 2006

Well, I’m home now. Was discharged from the hospital yesterday (Saturday) afternoon. My surgery was Tuesday morning.

Here’s what happened:

I was scheduled to have 8-10 inches of terminal ileum (including ileocecal valve) removed due to an 8 inch long stricture causing partial obstruction. The doctor said there was a chance he’d be able to do a strictureplasty instead (where they cut the intestine open and sew it shut in a different way in order to make it wider, thus relieving the stricture) but it was iffy because of the length of the stricture.

When I met with my surgeon after the operation, he said things were pretty messed up inside me, and I actually had two strictures, and a fistula in between (the fistula hadn’t showed up on any of the x-rays or scans). He cut out 4 1/2 inches of terminal ileum where the fistula was, and reconnected the two ends. He then did two strictureplasties on the two strictures (which was a bit easier since they were smaller than the 8 inches we originally thought). The good news is that this way, I got to keep the ileocecal valve and he didn’t need to touch my colon. The bad news is that he said a lot of the small intestine leading up to the strictured area has been stretched out due to the obstruction, and is about 3 inches in diameter, whereas a normal intestine would be 1 inch in diameter. He thinks this will gradually shrink now that the pressure is releived, but it may not return to normal. Oh, and he removed my appendix of course.

Hospitalization and recovery details below:

I had my bowel prep on Monday — boy was that no fun. Phosphosoda and 4 cups of water in the morning and evening, and a bunch of antibiotics in the evening. I obviously spent a lot of the day in the bathroom, and was feeling really weak and having abdominal pains. Also ended up vomiting some of the evening phosphosoda/water. Had a killer headache all day and night, and wasn’t able to sleep at all during the night (due to headache and bathroom trips and abdominal pain).

I checked in at the hospital at 6am and taken into the pre-op area around 7am. Met with lots of people (anesthesiologist, nurse, techs, doctor, etc.) and got an IV put in, and got a muscle relaxant injection. Once I got that, I was feeling much better. They wheeled me into the operating room, and that’s the last thing I remember.

I woke up and remember being in a fair amount of pain. I don’t actually remember the pain, I just remember that I was in pain. Apparently I was in the recovery room longer than expected (something like 3 hours) due to the pain. I think I was drifting in and out of sleep most of the time. I don’t remember being wheeled to my room, but I remember waking up there and my family coming in.

I had a tube down my nose into my stomach, hooked up to a pump to keep my stomach empty, a catheter for urinating, a weird tennis-ball sized sphere full of a pain killer taped to my side with a tube going into my incision, and an IV with patient-controlled morphine button. Looking down at my stomach, I have a tiny incision in the lower-left (about 1/2 inch long), another tiny one about two inches above my belly button, and a larger one vertically from my belly button down, about two to three inches long. Overall, not bad! The nose tube was definitely the most uncomfortable thing about the whole post-op.

The first day I didn’t get out of bed at all, and just slept or watched TV, clicking the morphine every 10 minutes, and getting a shot of toradol (strong pain killer) every 6 hours. Day #2 I was allowed some clear liquids and got the catheter out, and started walking the halls. I got the nose tube disconnected from the pump, but left in my nose in case they needed to re-enable it. Day #3 was more clear liquids, and got my nose tube out. That was extremely painful. Day #4 I started on soft foods, and was walking around a lot on my own. I got my IV out and started getting percocet for pain. Saturday I went home!

Going to try to keep walking around at home as much as possible, and am hoping the pain will get better each day. Don’t yet know how the surgery will affect my Crohn’s symptoms… need to get past this post-op period first!

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Winston

April 5, 2003

Winston ended up being quite a unique foster dog for us. Not only did we get him twice, but he almost ended up becoming part of our pack.

Winston was part of a military family who also owned an older Dalmatian mix and when they had to pack up and move, they had no room in the car for the dogs, so they were taken to the shelter and the shelter called us to pick him up. When Winston first came into LRR, he was so overweight that the director said he looked like a walking coffee table: “large, brown, and square”. Due to his extra weight, lack of activity, and probability that he spent a lot of time laying on very hard surfaces; he had calluses on his elbows and any other part of the body that would regularly rest on the ground. Unfortunately they became infected, so he was on antibiotics for a while.

We received Winston just after his time at the “fat farm” (one of the foster homes specializes in weight loss for new chubby fosters) and had lost almost 40 lbs. While Winston loved to play fetch, he still didn’t have much energy and was clumsy on his feet because of the lack of exercise at his previous home. Winston has a rather endearing/disgusting habit of spitting tennis balls at you. What made it disgusting was that he would chew, chew, chew on that ball until it became slippery enough to spit straight at you, often with bulls-eye accuracy! So we started taking a small towel out with us when we would play with him. During his first stay, he was still building up his energy, so when he chased balls, he would sometimes overshoot the ball, or else slip and fall when trying to turn, but that wouldn’t stop him from playing until he was panting as loud as a train. Then we’d go inside, and he’d flop down on the couch right on top of us. He loved to be on couches, beds, pillows, anything soft and he loved cuddling right next to us. Unfortunately Winston loved being on the bed with us, and while three dogs and two humans on a bed is a tight fit, we squeezed him in - until he started to snore. Not dog snores, but real, live, shake-the-wall snores! It was so bad the first night for me (since I’m a light sleeper), that I picked up my pillow and went into the guest room to catch some sleep. After that, we tried to make Winston sleep on the dog bed next to the floor. Unfortunately Winston knew I was such a weak-willed dog lover, that he started whining at 3am regularly to be let up on the bed. Since I didn’t want Winston to wake up Mike, I would often let him right up on the bed and the snoring would start.

We found Winston to be so endearing that we asked the director to move him to a different home since we had become so attached to him. The day before the move, we noticed his hind leg had swollen up, and there was a large red area. So he was taken to the vet where they found he had bruised himself (probably slipping in the snow fetching) and the blood had begun pooling into his leg. The vet went in surgically and cleaned the area out, and also found a mass of cellulitis which she removed (apparently happens to overweight dogs sometimes). He spent the time recovering and worming his way into the affections of another foster home during this time.

After a month, Mike and I seriously discussed adopting Winston since he was such an amazing dog, so we got to get Winston back for a two week “try and buy” period. When we got Winston back, he gained more energy and would play outside without stopping. When inside, he continued to play as long as he could find anything that could be thrown (kongs, stuffed animals, balls) until we would put everything into the dog bin; then he learned how to open the bin, so we would have to start putting the bin into the closet. Winston’s favorite toy inside ended up being a huge novelty tennis ball we had received as a housewarming gift. Winston would get his jaws into the ball and would bring it to us to throw. Sometimes he would have to open his jaws so wide to carry the toy that it would get stuck and we’d have to pull it out for him! He was just as cute as we remembered from before, but he wouldn’t cuddle quite as much as he used to, because he always wanted to play; up until bedtime where he would get on the bed and sleep right next to us (often snoring right into our ears). After our two weeks were up, Mike and I discussed the pros and cons of getting a third dog and decided that although Winston is a great dog, he wasn’t the perfect dog for the family (didn’t interact with Sheba and Quinn at all), and we’d miss fostering other great dogs that would come through LRR. So Winston then became available for adoption to the public, but the good thing was that we were allowed to keep fostering him until the perfect home was found for him. It was tough to give him up when Winston found his perfect family, but we knew he was going to a great home, so it made it easier.

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