Eight Years of Rise Above Crohns

When I was a kid, I wanted to be a writer.

My problem then was that I didn’t have any life experience to draw from and write about.

Now my problem is that I have so much life experience that I never want to think about much less write about.

I started Rise Above Crohns on December 21, 2006. I had just gotten divorced after a 13 year marriage which was completely screwed up by many things — however, one biggie was my Crohn’s disease.

On our honeymoon (back when doctors were still telling me “I just had a bad case of nerves” and “I need to learn how to relax”) I was drinking about a bottle of Immodium per day just to barely survive.

Over the years, I spent several years bedridden, several weeks in the hospital, and got lots of practice going to the ER (which being divorced I now get to do all alone). The long-term consequences of an adult being bedridden for a long time are just plain stupid — the world is only set up for people to be bedridden for a long time and then die. (While all my friends were doing things like buying houses and having kids, I was bedridden and unable to concentrate enough to watch TV and understand what was going on.)

I’ve thrown up many times in the middle of upper GI series (which means I get to retake them and start drinking the contrast all over again) and I’ve had so many CT scans that you probably mistake the radiation for me having “a healthy glow”.

I’ve been swollen to twice my starting weight via IV prednisone and glucose in a matter of weeks. Which perpetually pisses me off at fitness folks who say platitudes like “It’ll take just as long for you to lose the weight as it took you to put it on.” IT TOOK ME THREE WEEKS of hospitalization without being allowed a single morsel of food to put on the weight.

I’ve avoided surgery by being so ill with such a bad infection that they didn’t think I would survive surgery.

I’ve had every possible type of mood swing and depression and mania from taking high doses of prednisone and even though I haven;t taken it in years I still deal with the osteoporosis issues and long-term pituitary damage.

I’ve overheard my ex-wife on the phone talking about my expected death and her plans for who she wants to have kids with after I’m gone. (That’s one of the reasons the “ex-” got added to her title.)

I’ve had all kinds of medical errors including a radiologist not noticing an obvious broken rib. (That’s how I found out about the osteoporosis.)

My life revolves around going to the hospital every 8 weeks for Remicade. And hoping that with my severely compromised immune system someone doesn’t give me the flu and kill me. (Or kill me with some other common thing. Apparently the immune sytem supression from Remicade makes one very susceptible to stuff like Tuberculosis.)

I can now look back on my life and notice how even long before I was diagnosed with Crohn’s, people would take advantages of my weaknesses from it and use them to try to control me.

I’ve discovered that I’m severely allergic to bananas. So why did my grandmother always try to force me to eat them? No wonder I’m such a picky eater. Who knows what foods bothered the Crohn’ when I was a little kid?

My life now goes in alternating forward and reverse cycles, I start making some headway and then have some medical setback that throws all progress out the window.

Typically I can make myself seem pretty normal and healthy for going out into the world for any 4 hours of the day. Sometimes I get lucky and can go a bit longer than that. Or I can find a way to disappear for an hour in the middle and recharge.

As a guy in his 40s who would like to date, marry, get a dog, have kids, etc., all the physical, emotional, and financial hardship brought on by the Crohn’s disease is very difficult to deal with. As can be seen by my sporadic writing here — I don’t even want to talk about this stuff to myself much less do it publicly. I certainly don’t want the Crohn’s disease to be ME.

I have done some things. I started LICCsupport.com to address the lack of support groups on Long Island. (The CCFA does have some groups, but they decided to disband their men’s support group which leaves half the population um… unsupported.)

Currently (as in while I type this) I’m having troubles with anemia. Which started as being tired all the time a few week ago, but has developed into blacking out a few times a day. Could be just poor nutrient absorption? Could be internal bleeding? Who knows? The blood work was from September, but my primary care doctor retired and my new doctor didn’t emphasize the bloodwork results until I went back and saw her again. Which doesn’t get into the cause — just that I ought to start supplementing iron and see what happens.

So that’s where this site sits after 8 years of not really writing anything for it.

I don’t want the Crohn’s disease to be my identity. Yet I do think that I have some good that I can contribute to myself and others here. I have some useful questions. I have some things that have worked for me. And I have all the things that haven’t worked or that I don’t know how to deal with.

Through all this, one thing I try to keep in mind is:

“Argue for your limitations, and sure enough they’re yours.” – Richard Bach

So… I’m a writer and I’ve got all this stuff to write about, and yet I don’t know what I want to say. 3 months ago (when the bloodwork showing I’m anemic was taken) I was still pretty ridiculously strong for a 48 year old guy (providing you caught me at a time of day that I was feeling good). Today I intended to go to the mall (because I like the colorful energy this time of year — I have no need to actually shop), but I was so exhausted that I wasn’t sure if I’d black out at the mall or if I’d have energy to drive myself home. Instead I’m lying in bed typing this.

I would like some new life experiences that I DO want to write about.

What To Remember To Bring To The Hospital


portable entertainment device

portable video game


extra clothing

extra undergarments

good portable food

electric razor

a supply of your prescription medications

It just hit me that it’s 2010 and where I was 10 years ago

I had an appointment with my current doctor for my yearly physical today (May 6, 2010) and had to fill out some paperwork. So I’m writing in the date and I realized that I had to put the year — 2010. And I thought back to how ill I was with Crohn’s disease 10 years ago. That I was able today to drive myself to the doctor, walk unassisted to the office, sit and wait without being in agony — all these things were unthinkable back in 2000.

Overly Optimistic Expectations

I was just sorting some old papers and found a To Do list from February 27, 2002. This would have been whatever I made up right after I got out of the hospital.

Knowing my history now — both before and after I made up this list, this item seems pretty crazily optimistic:

Tour JLL

By which I meant that I should go to the Jack La Lanne fitness center that was near where I lived and take a tour to see about joining and starting to exercise.

#2 Diet Tip – Go For A Walk

Another easy diet trick is to go for a walk after eating.

#1 Diet Tip – Don’t Have Bad Foods Accessible

I’m feeling a LOT better than I was yesterday, and I’d have to think that at least part of that was that I didn’t do my first impulse and sit down and eat a bunch of cookies because I was in pain and seeking comfort by eating something tasty.

Don’t get me wrong — I love sugar! Cookies are my friends! I like making them and I like eating them! And doughnuts, cake, ice cream, etc.

I just don’t eat those sugary things very often anymore. That doesn’t mean I’ve cut them out entirely — but I make sure that I only eat them if they are something really tasty and I’m going to enjoy a lot. And then I go back to my regularly scheduled plan of not eating them.

Dealing With Pain – Joe Vitale’s Vital Message

It’s later in the day and my guts still hurt. This pain came out of nowhere — I’ve been doing fairly well lately and not having this kind of distress. Certainly nothing on this level. This is the kind of day when it seems impossible to rise above Crohn’s. Reading my email I came across a timely message from Joe Vitale.

The Vital Message

I think I have a belief that I can’t really get my Crohn’s under control to the point that it doesn’t control me.

Joe breaks down a 4 step process that yielded some interesting results for me, so I’ll share them here:

Extreme Gut Pain Morning

I got up this morning and I’ve had extreme gut pain since. I’d describe it best as some kind of stomach cramps. No matter how many times I go to the bathroom I still hurt.

I used to have this kind of pain all the time. Every morning was a new dice roll to see if I felt well enough to do anything that day.

It’s one of the things that made me hate going to sleep — especially if I was feeling well at night. Because there’s no way to predict whether I will wake up fine in the morning or in pain. I hated the way it made me totally unable to rely on myself — I’d never know if the next morning I’d be functional or not.

Lately this has not been a problem for me. I tend to have to go to the bathroom a lot every morning, which then settles down by afternoon. But it isn’t ongoing intense pain like this.

The temptation is to eat lots of “comforting” foods like cookies and wait for it to go away. But that probably isn’t going to actually help — and cookies probably are counterproductive. I don’t normally eat such things anymore.

So what can I do that is productive?

Starting Your Walking Routine

This year has been exceptionally cold outside — especially now that it is already May. Today was one of the first real “the sun feels warm on your skin” kind of days.

I took advantage of this and went for a long walk to the mall.

Walking is one of my 3 components to fitness. I love the feel of walking — I find that the natural rhythm helps clear my thoughts and makes me feel better. It also seems to help keep the digestive system in better order — probably some aspect of the regular up-and-down motion keeps things moving properly through the guts.

I wasn’t always able to walk long distances. In 2000, before I was hospitalized I was bedridden most of the year with intense back pain. After my third hospitalization of 2002, I was too fat and weak to even be able to walk to the bathroom. So I now appreciate being able to accomplish a few miles of walking.

The first piece of exercise equipment – gloves?

I believe that exercise is one of the most powerful tools to fight Crohn’s.

Exercise puts the focus on physically improving your body and is something that you can do proactively.

I will be talking about exercise a lot as the site progresses. Up until last summer I was doing quite well in terms of exercise, so for me this is just restarting something that I had started several years ago.

My old lifting gloves are torn from lots of use. They were good, but they’ve had their run.

Today I bought a new pair of workout gloves. I consider these to be a first and necessary piece of equipment.