On: 2006-11-02 10:18 Subject: Off the diet Security: Public Tags: personal, scd

I guess we're about due for an update over here.

I've been off the Specific Carbohydrate Diet now for more than a week, and haven't noticed a single consequence of eating all of these delicious carbohydrates. On the other hand, on Tuesday I missed my morning doses of Asacol and Prednisone, and by the end of the day I was feeling like it. The hip pain had started to creep back in, and my knees felt kind of sore.

On the bright side, my GI asked me to start stepping down on the Prednisone. All week I've been splitting pills and I'm down to 7.5mg a day. I also have an appointment to see him on the 7^th. (I think. I still need to call and confirm that!) No doubt he'll continue stepping me down on the Prednisone, as it's not a long term treatment, but I do worry that after I'm off of it completely, or maybe even before that, the pain will come back. But other than that, I've had nothing to complain about.

If nothing else, I've learned to incorporate some much needed nutrition into my diet in the form of fruits and vegetables. Even though my choices of tolerable F&V's is limited, some is much better than none.

I've been putting on all the weight I lost on the diet, too. I ended up losing a total of nearly 10 pounds, and I've gained about 7 or 8 of them back so far. Even after I get all 10 back, my goal is to put on another 10 or 15, just hopefully in a healthy manner. I'm fine in the mid-section, and I hope my body knows that and sends some upstairs to fill out in the chest & shoulders some, and some downstairs to add some insulation to my chicken legs.

On: 2006-10-11 17:28 Subject: Half way there! Security: Public Tags: personal, scd

It's been a little bit more than two weeks since I started the specific carbohydrate diet, and with another two weeks left in the experiment I suppose it's time for an update on that topic.

Most days I feel much better. Of the last five days, three registered at a 0.5 or a 0 as far as hip-pain is concerned. Other symptoms are secondary - and were proportionately scant. The problem is, I don't think it's because of the diet. The other two days of the last five - yesterday and today - are coming in at about a 2 and a 2.5 respectively. On Monday night I think I might have missed my evening dose of Asacol, and this morning I took my Prednisone about a half hour later than normal... I've been a little absent minded recently.

And because of the coinciding of the return of my symptoms and my medication flubs, I'm inclined to believe that it's the medication that's helping - not the diet.

That's not to say the diet doesn't have its merits. I'm already eating far healthier than I was before the diet - and I intend to continue that habit with or without the rest of the diet. I'll continue to try new foods and eat fruits & veggies.

But if the past two weeks are any indication of how much the diet will help me after two more, then it's only a matter of time until I remove it's restrictions. (And on that day I'm going to eat a sugar sandwich and wash it down with a tall glass of milk!)

My dad's mom sent me a book about (and called) The Makers Diet which somewhat resembles the SCD. I've read the first few chapters, and the chapter on the diet itself, and decided that if the SCD doesn't help me, then TMD probably won't either. It also doesn't help that while TMD allows certain foods that SCD doesn't, its restrictions seem much more difficult to comply with (ie: goats milk cheese from grass-fed goats). So while I appreciate the thought, it's probably something that's going to be shelved for now.

Physically, I feel great. The G&G walk was a breath of fresh air, and inspired me to try to exercise more often. Megan and I setup our treadmill in the basement, and I intend to use it a few nights a week. And until the last couple of days, I couldn't ask for a better condition to be in.

On: 2006-10-10 09:37 Subject: Pictures from the Guts & Glory 5k in Philly Security: Public Feeling: chipper

For anyone interested, here's a few pictures from the Guts & Glory 5k in Philly this last weekend. I have a small photo album up on my other site.

This first one is my mom, my wife Megan, and myself:



The participants gathering at the starting line:



And our finishing time:



I thought about taking a picture of the port-o-potty placed at about the half-mile point, because of the thought about how often some of us might need to stop to use it during the race, but decided against it in the end. ;o)

On: 2006-10-02 09:01 Subject: optimistic! Security: Public Tags: personal, scd

Probably partly thanks to having our housewarming party on Saturday, I ate like a pig this weekend. A dozen deviled eggs (with home made mayo), SCD legal peanut butter brownies, meatloaf (with home made ketchup), and probably a pound of cheese. I also discovered that (SCD legal) apple cider and vodka is pretty good - probably a lot better than the one mixer suggested in the book: club soda.

This morning and yesterday morning both I came in at 136 pounds even. If I'm going to fluctuate, I sure like the ups a whole lot more than the downs.

I'm still sucking at keeping on top of my spreadsheet, especially when it's inconvenient. During the week its something I do during the first hour or so of work, it's just part of my routine, and it works. Weekends and really busy days are another story. It's tough to remember how much you weighed Saturday morning on Monday morning. But I'm trying.

One of our house warming gifts was a two-pound bag of almond flour that my mom picked up at Whole Foods. Apparently they use the stuff in all of their baked goods (secret ingredient?) - and since they don't sell it in bulk packages in the store, the lady made up a price ($3-something a pound?) and sold it to her like sliced meat from the deli. What a find!

So probably this week some time we're going to experiment and try to use some of it to make pasta. I told Megan that if she does it before I get home she has to take pictures (otherwise I will) - and if it turns out well I'll be sure to post them here and on curecrohns and we_got_guts. At some point we're also going to be making some muffins... and I'm looking forward to the days when I don't have to eat a hard boiled egg and selected fruit for breakfast.

We also have our first batch of yogurt fermenting right now - ETA 6:30 or so tonight. If that turns out well, and we can continue to get cheap almond flour via my mom, then continuing the diet shouldn't be too hard at all.

On: 2006-09-29 10:53 Subject: Still losing weight Security: Public Tags: personal, scd

I forgot to weigh myself yesterday morning, so last night I checked before bed and with my estimated adjustment for clothes, I came in right at my average for the week, at 137.4. This morning, to my amazement, I'm down to 135.4 (no BM yet).

I don't know whether to hope the scale is wrong, or to worry that I'm not eating enough... whatever (fat?) to keep my weight up. Last night after picking at a cesar salad minus dressing and croutons (so, lettuce and parmesan cheese), I had a nice juicy steak and went out of my way to eat the fat attached to it, and some shrimp, and I also had Megan's leftovers - fat included. When we got home I topped it all off with a handfull of bacon.

I'm also on Prednisone which, by all accounts, is supposed to have you gaining weight - not in the most flattering places, albeit, but gaining none the less.

I guess I should re-read the introduction to the diet in the book. I'm kind of worried that you're not supposed to be on this diet without the yogurt portion; and unfortunately we've not yet found a way to make it. I doubt it's the fault of the scale, because Megan hasn't reported abnormal weight loss; so for now I'll just continue to eat every legal thing I can get my hands on. Luckily I have half a bulk box of raisins here, and my boss is planning on taking us out for lunch, so the lunch I brought will be a good afternoon snack, assuming I can find something legal while we're out.

On: 2006-09-28 11:12 Subject: yay insurance! Security: Public @ work Feeling: stressed Tags: personal

That's sarcasm, by the way.

My company used to have Aetna HMO health insurance. As of 9/15, we're on Keystone HMO - a subsidiary of IBX. Ready for the stress dump? Here we go.

We got our new insurance cards in the mail yesterday - after I got home from work and got the mail. I guess 12 days isn't so bad. They had given us some partial information about our plan on the 18th, and information on how to print out a temporary ID card from the IBX website on the 20th.

Hours prior to opening the letter from IBX with our new cards, I called my PCP's office to check on the status of a referral I requested to get an x-ray that my GI requested. (When I called for the referral on the 15th she said she would call me back once it was in the system and I could go get the x-ray -- I never heard from her.) She said there weren't any active referrals for the x-ray, so we started talking about getting a new one. She asked when my appointment was, and I replied, "I'm going to Paoli hospital - they don't make appointments, it's just walk-in's." To which she replied, "If you have Keystone you can't go to Paoli hospital." Wonderful!

So now in addition to trying to get everything straight with our new insurance provider (as well as the dental insurance company that for whatever reason thought I was born in 1952 and unmarried), I also have to figure out where I can go in the event of an Emergency, and whether or not I want to continue seeing my current PCP. I like him very much. He's a smart guy, and our personalities click in a way that makes me think that were he 20 years younger or I 20 older we would be close friends. But his office is about a 20 minute drive from our house without traffic, and now I can't go to the hospital across the street from there. Megan recently found an office that she seems to like and that's relatively close to our house, so I suppose I'll check them out. I don't want to have to break up with my current PCP though. And all of this makes me wonder if my GI is in-network. Sometimes I have my doubts about him, so I wouldn't be heartbroken to have to look around for a new one, but for the most part he's a smart dude and 8 times out of 10 he'll take whatever time I need to talk to me on the phone or in person about whatever I want.

I know switching insurance is bound to happen and is just "part of life," but add to that the stress of maintaining this diet (yay frustration!); and decorating our house to make it look like we've had it done for months - when really we're just getting as much done as possible before the house-warming party this weekend; and commuting long hours that, while they provide the great experience of working in the city and doing work that I absolutely love, limit the time I get to spend at home (with the wife) to three or four hours a night.

I'm not one to dwell or cry, but it feels good to at least get this off my chest. And now that I've done that, I can call my GI to (leave him a message letting him know that I want to) discuss the diet and the possibility along with the pros and cons of raising my dosage of prednisone.

And once I figure out what doctors I'm going to see, and where I can get an x-ray done, I've got to call back and get another referral, and then go (presumably, after work) one day and have it done.

Apparently one of the attorneys that my mom works for wants to put me in touch with someone he's connected to at NIH to talk about... I have no idea. I'm certainly open to it and all for some free advice.

On: 2006-09-26 10:45 Subject: We now return to our regularly scheduled blogging Security: Public Feeling: hungry Tags: personal, scd

It's been two weeks since I wrote here, and I wish I could report that "no news is good news" - but unfortunately it isn't. I've just been buried under a pile of life.

I've had marginal improvements. I've been on Prednisone now for what will be two weeks tomorrow. It's already pretty much a solid part of my routine so it feels like I've been taking it for months and I had to go check to see when I said I would be starting it. I suppose it's helping a good bit, but I think I'm going to call my doctor some time this week or next and talk about raising the dosage to see if it can get rid of more or all of the pain. I've still been relying pretty regularly on Tylenol - an average of 1.5 times a day, I guess. Sometimes twice a day, most days once in the morning with all of my other pills, and some days not at all. But one thing's for sure, I haven't taken more than the recommended dose!

I've also taken big steps to improve my diet. I'm still not "officially" on the Specific Carbohydrate Diet, mostly because we haven't come up with a good way to ferment the home made yogurt that the diet heavily depends on. But with one or two exceptions I've eliminated bread, pasta, starch, and refined sugar from my diet. I've been eating lots of meat, and, (this is the shock and awe part) been trying lots of new fruits and vegetables.

At this point I know that I can tolerate just about any type of apple enough to get some sustenance out of it - but golden delicious and macintosh are my favorites. I know that I like raisins, and that (green) grapes taste a lot like apples whose center is slimy instead of crispy. I don't think I'll be excitedly cheering next time I have grapes, but I'll eat them. I also plan to have one or two red ones at the grocery store to give those a shot. I had a small piece of an orange and will probably give it a more thorough test-drive this week, and my last run-in with a banana didn't end well.

I've known for a while that in a pinch I could eat peas (ironically the one vegetable my wife doesn't care for), carrots, lettuce, fresh spinach, and corn - which isn't allowed on the SCD. I now know that I vehemently dislike yellow squash, and didn't much care for the zucchini squash - but at least I managed to swallow that one.

The Chart. Yyyyyyyyyyeeeeeeeaaaaahhhhhhh. That thing. I filled it out for one day and then it kind of fell by the wayside. I know, I suck. I guess it does say a little something about my condition, though. If I felt like this disease was a tremendous weight on my shoulders I would certainly have more conviction about following through with the little things like the chart. I guess, as of today, I'm back on it. And I'm going to leave the gap there to remind me that I was a slacker and didn't touch the chart for 20 straight days.

I continue to lose a little bit of weight here and there. Today I came in at 137.4, which was surely due in part to my haircut last night. I sometimes feel like I'm constantly hungry, but in reality there are always at least two or three hours after a meal where I'm not hungry at all, assuming I ate enough. And that I found my bike-lock.

Lastly, I'll put it out there that I've finally gotten around to starting my team for the Guts & Glory 5K. If you're so inclined, you may make a donation (via credit card) here, or I guess if you're one of the few people I know in ARR ELL (RL: Real Life) and you want to come walk with me, you can join the team. It is kind of ironic that one of the side effects that my Crohn's causes me is difficulty walking and I'm attending a 5K run/walk. (Definitely walk!)

On: 2006-09-12 10:19 Subject: Confessions Security: Public Feeling: sick Tags: personal

It's time to confess...

For the last month, probably a bit longer, I've been taking a lot of Tylenol. As in, I'm approaching the 100,000mg mark (in the last 30 days). Sometimes, when the pain wasn't bad, I wouldn't take any. Other times, when the pain was really bad, I'd take as much as 2,500mg.

Thank goodness I talked to my GI yesterday. He told me that the lowest recorded lethal dose of Tylenol is just 3500mg, which, is only 7 of my 500mg pills... which sounds like a lot... but I was taking 4 or 5 sometimes.

No more of that!

After talking to the doc last night I decided to give the Tylenol a rest for as long as I could hold out to try and get it all out of my system before putting more back in. I do enjoy having a liver. I limped around all night last night, slept with a warming patch (like a glove warmer, only with a sticky side) stuck to my butt in the spot that I could most closely guess was the center of the pain, and after an agonizing, and probably amusing to watch walk from the train station to work this morning, I took the recommended dose: 1,000mg (2 pills).

Instead of risking my life for marginal relief, the doc wants to put me on 10mg of Prednisone daily - one of the medicine's he had originally offered me - for pain relief. I've read lots of good and lots of bad about Prednisone on we_got_guts and curecrohns, so I guess I'll give it a shot. As far as I'm concerned, things can only get better; and I really want to get this under control before having kids. I don't even want to imagine what life would be like if I couldn't run around and play with them.

Hopefully they'll call in the prescription today and I can start taking it tomorrow.

And as if that wasn't enough, I woke up with symptoms of what's probably a cold.

On: 2006-09-05 13:39 Subject: sick of being tired, and tired of being sick Security: Public Feeling: cold Tags: personal, scd

Yesterday we bought a scale. I don't know why, but for as long as we've lived together (almost a year and a half) we haven't had one. Neither of us were intentionally watching our weight, hoping for it to go down (or in my case, up).

This whole time I've been living a lie.

For the last year and a half I've solemnly believed that I was 6 feet tall, and 145 pounds on a light day, 150 on a heavy day. That's considered skinny, I guess. My collar bones poke out, my ribs are distinguishable from the front, and if you need something that's pinned behind a refrigerator and 2 feet away, its my scrawny arms you come looking for. I've also been told for as long as I can remember that I have "chicken legs", and that I should (quote, un-quote) "eat a hamburger."

One halloween in college I dressed up as a girl, and I wore a size 6 skirt.

When I buy underwear, I have to shop for "small". (32" waist) I guess I'm fortunate that I'm at least shopping in the adult section; though I do wish Spiderman were an option for folks my age.

It's official, I'm 141.4 pounds now.

Sunday afternoon I edged the yard and cut the grass, and ever since then my stomach has been uneasy. I can't tell if I have gas or if I'm hungry, and neither eating or... farting... relieves it. And I've done a fair bit of both. This morning I had difficulty eating my pop tarts on the train. They didn't technically make me nauseous, but they were close. Lunch was very appetizing, so I've got high hopes that the food thing is just a fluke and everything will be back to normal shortly.

And speaking of food, I left my copy of BTVC with the wifey today, and we've already decided that I'll start on the SCD diet on 9/18, so that I can enjoy whatever food and drink are available at the wedding we're going to this weekend, and so that we don't have to add in the stress of starting a new diet to our anniversary camping trip the following weekend.

I made up a chart to track the symptoms I deal with regularly, along with my weight, and whatever major events have been going on, so that I can make correlations to how those might affect my symptoms. I figure if it's helpful to track that stuff during the diet, I should track it for a little bit of time leading up to starting the diet, so that I have a good basis to notice change.

If you've got really, really good eyesight, you may be able to tell from that image that I'll be participating in the Guts & Glory 5K on October 7th. I'm still trying to come up with a team name, though.

On: 2006-08-29 15:58 Subject: Drugs! Security: Public Feeling: sore Tags: personal

On Friday, as my train home pulled into the station, my cell phone rang. It was my GI, and he wanted to talk about my symptoms and answer my questions. Great! Except that I was totally unprepared for the call and forgot all of my questions I wanted to ask him.

I did get to explain the pains I've been having, and that the Tylenol just wasn't doing enough; and he prescribed Asacol, which I started Friday night and have been using twice daily since. My first impressions of the drug are great. About 20 minutes after my first dose I stood up and noticed that I didn't have any discernable pain in my hip! Maybe it was psychosemmatic, or some sort of placebo effect, but whatever the reason, my hip didn't hurt and that makes me happy.

Since then I've noticed that my pains start to come back an hour or two before my next dose, and today I noticed one of the pills in a bowel movement. According to the paperwork that comes with the prescription, you're supposed to notify your doctor if that happens, so I called his secretary and left a message, just now.

Overall I guess I'm happy with Asacol so far, because it does seem to have a good effect. I just hope that we'll be able to fine tune my dosage so that the effects don't wear off between doses.

On: 2006-08-24 21:52 Subject: It's time to start taking this seriously Security: Public @ home Feeling: stressed Tags: personal

For the last week and a half I've been trying to get in touch with my GI doctor to schedule an appointment to see him again. The first day I called they were at lunch... Then I called the next day, and they were at lunch... at 2:00... still. Since then I've wanted to call, but I keep getting distracted by work.

I really need to start taking my pains and flare ups seriously, before they come back to bite me in the butt.

Tonight I found 2 communities right here on LiveJournal.com for people with Crohn's. They are we_got_guts and curecrohns. I introduced myself on both, and gave a breif history of my diagnosis, and my symptoms, and already I have a list of things to talk to my doctor about when I do get in touch with him:

- How much do the different medications increase my chances of developing lymphoma? With my (albeit, small) family history of cancer, should I worry?
- Will a heating pad help releive joint pain? Is there any reason not to try it? (Will it cause problems?)
- What about Aleeve for the joint pain? Kaprex?
- Should I see a rheumatologist to find out if my pain is arthritic?

If you're interested in what other people are posting on those communities, check my friends page, it lists all posts from both.

On: 2006-08-23 15:34 Subject: status Security: Public Tags: personal

I'm uneasy switching to this format of posts so soon, but my knees feel so good today I can't resist. This morning my knees officially registered a 0, and it hasn't changed all day! Unfortunately my hip is flaring up a bit today and I'm maintaining about a 3 with a steady regimen of Tylenol; and my back has been hovering at about 0.5, too.

It's silly, but I'm looking forward to going home tonight and sitting on my couch, and occasionally moving my legs from on top of the coffee table to the floor, and back again, without wincing in pain. Going up and down stairs and walking long distances are still a little hard on the hip today, though, and I feel awkward walking down the parkway limping.

As far as pain medications go, people living with Crohn's are mostly restricted to Tylenol. Any anti-inflammatory is off limits. Ibuprofen, Motrin, Aspirin, Advil, Excedrin... nope! Tylenol has never really eased a lot of pain for me, but when it's all you've got, you learn to love it.

On: 2006-08-22 13:12 Subject: An introduction Security: Public Feeling: pensive Tags: informational, personal

What is Crohn's Disease?

Well, the Crohn's & Colitis Foundation of America defines it this way:

Crohn's disease is a chronic (ongoing) disorder that causes inflammation of the digestive or gastrointestinal (GI) tract. Although it can involve any area of the GI tract from the mouth to the anus, it most commonly affects the small intestine and/or colon.

The disease is named after Dr. Burrill B. Crohn. In 1932, Dr. Crohn and two colleagues, Dr. Leon Ginzburg and Dr. Gordon D. Oppenheimer, published a landmark paper describing the features of what is known today as Crohn's disease. Crohn's and a related disease, ulcerative colitis, are the two main disease categories that belong to a larger group of illnesses called inflammatory bowel disease (IBD).

Because the symptoms of these two illnesses are so similar, it is sometimes difficult to establish the diagnosis definitively. In fact, approximately 10 percent of colitis cases are unable to be pinpointed as either ulcerative colitis or Crohn's disease and are called indeterminate colitis.

So what does that mean for you and me? Well, probably the most important thing to pick up on from the above passage is this phrase: "It is sometimes difficult to establish the diagnosis definitively." A bit loosely interpreted, this means that your doctors may not be able to give you a definitive answer to whether or not you have Crohn's disease. In my case, my doctors haven't said, "You have Crohn's Disease." Instead they've said, "You probably have Crohn's, because you have most of the indicating symptoms."

Currently, I'm not aware of any tests that they can do to directly check for Crohn's. On the other hand, there are numerous side effects, some of them very common between Crohn's patients.

Symptoms

There are lots of variations of Crohn's disease, and with each comes a slightly modified set of symptoms. Again from the CCFA:

Persistent diarrhea (loose, watery, or frequent bowel movements), cramp-like abdominal pain, fever, and, at times, rectal bleeding: These are the hallmark symptoms of Crohn's disease, but they vary from person to person and may change over time. Loss of appetite and subsequent weight loss also may occur. However, the disease is not always limited to the GI tract; it can also affect the joints, eyes, skin, and liver. Fatigue is another common complaint. Children who have Crohn's disease may suffer delayed growth and sexual development.

As I said earlier, I'm fortunate enough to not have advanced Crohn's.

I originally went to the hospital for suspected Appendicitis, and it wasn't until they completed a biopsy of my apparently healthy, though recently removed appendix, that they seriously suspected Crohn's. The biopsy showed some collections of white blood cells, in abnormally high counts, throughout my appendix - which was their first tip-off. After discussing other chronic problems I've been dealing with for longer than I can remember with my primary care physician and gastroenterologist, and a run-in with Iritis, the three of us were basically convinced that Crohn's is at the root of my problems.

I'll try to cover all of the symptoms - both those recently developed and those chronic, that I never realized were all related. I guess I should point out that I'll probably often refer to the pain on a scale of 1 to 10 - just like the doctor's always ask you when you're in the hospital. Of course, in your daily life, things like lifting your leg, bending your knee, or looking out a window should rate a 0 - they shouldn't cause you any pain.

My earliest memory of my reoccurring "hip pain" (as I've taken to calling it) is in early eleventh grade (16 years old), on a hiking trip. Almost without warning my hip started hurting when I would lift my leg. I fell to the back of the hiking group and had to rest for a good bit of time before I could even go on. On an ongoing basis, not constantly, but most of the time, putting weight on the leg doesn't cause much pain, and moving the leg with my hands, as opposed to the leg muscles, causes little to no pain - in the off chance that I'm actually able to relax the leg muscles enough to not use them in the process. But for example, when getting out of the shower, lifting my right leg to dry it off can sometimes cause about a level 3. Getting out of bed in the morning ranges from a 1 on a good day, to a 5 or 6, on the days that I know the first thing I'm going to do after turning off the alarm is take pain medication.

Some time before that first hip pain, but I'm not certain when, I started to notice that I would occasionally have a difficult time with bowel movements. My father is lactose intolerant and I assumed I had at least partially inherited it, and attributed it to that; but I never was able to correlate it directly with certain foods, so again I mostly just forgot about it, and dealt with it as it came up. It's been quite a while since I first started noticing it, but I'll estimate that maybe twice a month on average I might have two or three days in a row with difficult, sometimes painful (with small hints of blood on the stool or toilet paper), bowel movements. Never anything above a 2 or a 3; but again - going to the bathroom should be a zero. In the weeks leading up to my suspected appendicitis, the frequency of the problem increased to about two to three times a week. I also developed some somewhat severe (level 3 or 4) stomach cramps that I definitely correlated with my difficulty having bowel movements. During the two days before I went to the emergency room, I had to go to the bathroom every hour or two, including overnight, usually with soft or liquid stools, and the cramps rarely subsided between visits to the bathroom.

As I mentioned above, I also developed Iritis, an inflammation of the iris. I started to notice that my right eye was irritated (itchy, watery) probably a day or two before I went to the hospital for appendicitis. The morning of day that I went in I noticed a small red splotch in the white area of the same eye. During my two nights in the hospital, it worsened, and somewhat humorously, was never noticed or questioned by any of the numerous doctors, nurses, or technicians that saw me. The day that I was discharged and sent home I started noticing sensitivity to light and suspecting more than just something bothering my eye. My wife looked at it and we agreed that it was probably pink-eye.

Luckily, after 3 days of agonizing light sensitivity, I decided to see my Primary Care Physician about it. He referred me to an ophthalmologist, who diagnosed me with a form of Iritis, put me on a series of drops and creams, and eventually fixed me up. This symptom in particular was very scary to me, because after I started reading up on Iritis I found out that if not treated, or not treated early enough, it can cause you to go blind. I'm sure I'm now mentally scarred for life, and the first symptoms my children show of pink-eye will send us to the doctor in a heartbeat.

The light sensitivity was so bad that I ended up missing more than a few days of work because I couldn't drive. When I did finally return to work, I usually drove with my sunglasses on and one hand cupped over my eye, because it was still extremely sensitive.

Lastly, it seems like I need to be careful of causing small problems, because they tend to stick around. About three weeks ago I washed my car - spending a good bit of time on my knees scrubbing my wheels; something that normally wouldn't have bothered me except maybe an hour or two of soreness. Even today I can't unbend my right knee without it making a popping noise and causing some pain (1-2). Of course it was far worse (6, maybe 7) in the beginning and only now seems to be going away. I also deal with a sore lower back daily now - probably brought on by years of slouching, which resulted in my minor scoliosis. Between these two things, I'm basically forced to sleep either flat on my stomach or flat on my back - neither of which has been a comfortable position for me to sleep. As long as I can remember, I've always slept on my side.

Treatment

I've heard some of, what I can only hope are, the worst horror stories about how this disease is treated - probably mostly dealing with very advanced cases. I have a family member who had a good percentage of their intestines and colon removed, and when I combined hearing about that with what I was reading on the internet, I was terrified!

Of course, there's plenty to read about treatments and complications on the CCFA site:

Because there is no cure for Crohn's disease, the goal of medical treatment is to suppress the inflammatory response. This step accomplishes two important goals: It allows the intestinal tissue to heal and it also relieves the symptoms of fever, diarrhea, and abdominal pain. Once the symptoms are brought under control (this is known as inducing remission), medical therapy is used to decrease the frequency of disease flares (this is known as maintaining remission, or maintenance).

In my case, my gastroenterologist offered me four alternatives:

1. An immunosuppressant pill, which, as it sounds, suppresses your immune system; keeping it from overreacting to little things, and hopefully keeping it from mistaking good things for bad things.

2. Another pill that acts as sort of a Pepto-Bismol for your intestines, coating them and causing the lining to relax and heal. It has to be taken three or four times a day, sometimes more. He also said it's only been effective in about 10% of patients who try it.

3. An I.V. treatment, once every eight weeks, that takes about 2 hours; and according to my doctor, "has had pretty good results." The down side to this treatment is that stopping and then restarting treatment greatly increases your chances of allergic reaction - so it's generally only recommended for patients who are ready to commit to a permanent treatment (those who are older or have exhausted other options).

The other thing about all three of these options is that they increase your chances of developing lymphoma (a form of cancer). And in case you didn't already know, Crohn's itself increases your chances of developing lymphoma.

It is for that reason, combined with the relative infrequency and relatively low-pain of my side effects, and a family history of cancer, that I've chosen option four, at least for now:

4. Do nothing.

On: 2006-08-22 11:51 Subject: Howdy Security: Public Feeling: content Tags: informational

Hi, my name is Adam. I'm a 24 year old web programming consultant working in Philadelphia, PA. In April of 2006 I was unofficially diagnosed with Crohn's disease, and this LiveJournal is my attempt to chronicle what it's like to live with the disease in the modern day.

My main inspiration for starting this journal is admittedly selfish. I don't have the greatest memory, and this gives me a way to look back and recall which symptoms I deal with, when, and for how long. It gives me a cheat-sheet when my doctors ask me how I've been doing.

A fortunate side effect is that others who either suspect that they have Crohn's themselves, or whose doctors suspect they may have it, can find more information on what its like to live with Crohn's today. When my doctors originally started mentioning that they suspected my problems were ("potentially") caused by Crohn's and its effects, of course I started researching it on the internet, and unfortunately I think most of the information available is marginally outdated.

It's my understanding that my Crohn's isn't very advanced, so I'm fortunate in that respect. In my next post or two I'll try to explain what I understand Crohn's to be, it's side effects, and how it's affected me so far.