Well dag nabbit I have Crohn’s disease. The first thing was to figure out how the hell to spell the damn thing.
Anyway it started about 2 months ago (04/06). I started to get some mild stomach cramps, soon to be accompanied by some gas (that did not smell right (does gas ever smell right?)).
Finally I went in for a physical in early May and asked the doctor to check me out. He basically gave me some Zantac and told him to tell him if it got worse. Well it did. A lot.
I weighed 165 coming into this thing (and have weighed about that for about 10 years).
We went to Florida in Mid May, and thinking it was stress related or something I thought I would improve. Things went downhill there. Started getting more cramps. Weight dropped to about 160. Then I finally threw up in Florida. Then again. About 3 times total there. I was dreading the flight home (it went ok).
Got back home and booked another appointment with my general practitioner. He couldn’t find anything so he scheduled an upper GI series on me where I had to swallow barium and they x-ray it as it goes through my system. Tasty! They found nothing wrong with my small bowell series unfortunately which slowed the process of finding the answer even more.
Finally I booked an appointment with a specialist here at Virginia Mason Medical. The Dr.’s name is Dr. Brandabur, however he was booked till mid July. They recommended that I see a nurse there – Lacey. I went in to see her and she gave me Protonix which is supposed to work on some sort of GI issues. At this point things were going from bad to worse. I was throwing up on average once or twice a day. I was losing more weight (probably about 150lbs by first week in June). The Protonix did nothing for me. I was developing canker sores (8-12) now, I thought due to all the vomiting. Elsa had been doing a ton of research by this point and with Lacey’s opinion that I had IBS (since there was no blood in the stool) we were going down that path. That path included just going to very soluable foods such as rice, avacados, etc. Very bland meals ensued. Poor Elsa had so much on her plate to help me with. By this point I had no energy and couldn’t help out at all. The only thing I would do is work in the day (I felt decent mid-day) and then lay down at night and await the inevitable vomit. I also had diharrea at this point (and for the prior 4 weeks). Art gave me some things for my canker sores which helped out immensely, as well as some power flouride for my teeth enamel which was probably taking a beating.
Then it went downhill further. I started developing painful issues ‘down there’. Initially I could handle it (pain of about a 3/10) when I would go #2 (I was going 3-4 times a day now). But as later June came about the pain went up every day. Finally the week before I went in to the hospital I was hitting a 9/10 of pain (seeing red spots). I would have to crawl to the tub to tolerate the pain. I was taking 6-8 baths a day at this point since the warm water was the only thing that would make me feel better.
I had had the colonoscopy and endoscopy scheduled by this point for June 23rd, and it was about 6/19 when I was really in pain. I scheduled a quick appointment with my GP just to have him check me out down there. He found a few problematic things : Hemmoriods (no big deal), fistulas and fissures. It was a fissure that was killing me. I mean it was bad. He said he could do nothing for me except give me Vicodin, which really didn’t do anything. I then finally got Lacey’s attention with this one. She scheduled me the next day and did a ‘thorough’ check. I was crawling up the wall it was so painful. She was concerned at this point and I think shifted her thought from Irritable Bowel Syndrome to Inflammatory Bowel Disease. I however was most concerned about the colonscopy prep work. This is where you drink something called Halflytely or Go-Lytely to clear you out the night before. The thought of sitting on the toilet going #2 all night was completely freaky scary to me at this point. I was eating like a mouse by now. She immediately put me on Metronidazole which is an antibiotic. It immediately helped. My sores started to go away and I was actually starting to feel decent. I threw up twice more the night before the colonoscopy/endoscopy, but once was just due to the nastiness of the taste and how you should just chug it.
Maggie flew in at that point and then my parents flew in this night – they could not take it anymore. It was very sweet of everyone to come and help out. Little did we know what was next.
Friday came and I was feeling better and better, mostly because I was done with the Halflytely thing. Got ready to go to the doctor, thinking this will be a quick in/out procedure. As I stepped out of the shower that day (glad I had the foresight to shave that day) I weighed 143 lbs. During the procedure they give you a ‘forget’ drug so you don’t remember anything but that you’re sort of awake so they can tell you to move and stuff. I DO indeed remember a few things, at one point just jumping around the table and Dr. Brandabur going BREATHE DEEP JOE… BREATHE. That is like telling a mom in labor to breathe I’m sure. Well after the procedure I was VERY groggy and the doctor is telling me “well it looks like you have Crohn’s disease”. When you are that groggy you can’t really get your mind around your own name let alone that you have some affliction. I was mostly concerned that they recommended that I STAY in the hospital. This was something I’d never done (overnight at least). However I couldn’t focus for more than two seconds before falling asleep again. I could see worry and pain on my parent’s faces and Elsa’s. I didn’t know what to do with it all so I just kept trying to go back to bed. I told them all to leave so I could sleep. You really just want to sleep after these kinds of deep procedures. It got very annoying. After getting whisked to some room in the hospital and saying goodbye to my family, three doctors came in to visit me at different times (floor doctors). They would ask me the complete history of what I have, why I was there, blah blah. I could do nothing more than wish they would all die and leave me alone so I could sleep. One of them said “can I check you out there?” I said sure. At this point I would probably have signed over power of attorney to them if they would just have let me sleep. I didn’t realize he was going to REALLY check me out there. It still hurt to be spread like that.
About 10pm that night everything wore off and it hit me. I have some sort of disease. Something I can’t even spell correctly. No one is here. I felt alone for the first time in a while and realized I had to deal with the whole scene. I was sitting in a hospital, when I had for sure thought I would be headed home and hearing about how to treat IBS in the future. Nurses came constantly to put new drugs in me. The first one being the Prednisone – a steroid – with is supposed to fix the ulcers very quickly. The first night in the hospital was a real nightmare. I had nothing to read, nothing to really do but to watch tv. They wouldn’t give me anything to eat except water. Around the time I was waking up they brought in my roommate. BOY that puts things in perspective. This guy (Mark) had throat and neck cancer. He had tubes coming out EVERYWHERE. I felt really really bad for him. He had all these trays for blood and spit and things. I had this IV in and it was plugged in. I didn’t realize I could unplug it and use the toilet so I used one of those urine things for the first time. Strangeness. I was bed #1 so the nurses would have to walk by me to do everything for him. It was a terrible night of sleep. Beeps, lights, nurses. It was crazy. I couldn’t believe what was going on. But it always came back to me that I could have it worse like Mark next to me. He was hacking and just generally miserable.
After about 2 hrs of sleep and many hours of bad television I finally made it into the next day and immediately requested a new room or roommate. Thankfully they were very open on the floor and got me a new room the next day. I sat most of Saturday in the lounge waiting for my new room and people to come visit. I had actually a lot of energy. The doc says that that was due to the Prednisone. They put me on an all liquid diet – popsicles, broth and tea. That’s what I ate for the next 11 meals or so. Well that sort of sums up the experience – I won’t bore you with more hospital details at this point, but suffice it to say I really never want to stay in the hospital again if possible. It’s very hard to sleep. Elsa and the family were just great at accomodating me, and Maggie was a huge help with the kids. I don’t know how we would have made it through this time without them here.
Back at home now and it’s the beginning of July (7/1). I am on the following drugs:
Metronidazole (Flagyl) – have to finish this off (antibiotic)
Singulair – for Asthma. Not a big deal
Prilosec – as needed for acid in the stomach
They had me on Potassium Chloride but that was just for the first night
Prednisone – this makes me nuts. I am constantly hungry and aggressive. I cannot believe how much energy I have and yet I have no muscles right now. I feel like I could move the world if you gave me the task. It’s almost like some sort of high cocaine feeling (not that I’d know but I’ve heard you feel invincible on it). I have not been able to sleep more than 2 hour blocks since literally last Thursday 6/29. I’m trying different sleeping pills but very little results. Anyway, time to wrap this up. I’m back up to about 153 lbs and eating like a horse so it shouldn’t be long before I’m back to somewhat normal, then we figure out what normal really means now.
Thanks for reading. Maybe I’ll keep updating this…
One reply on “Joe Gots Da Crohn’s”
I can’t believe I forgot to mention that I am currently getting the “magic” drug Remicade