I have an inflammatory bowel disease called Crohn's disease. It affects nearly two million Americans. In layman's terms, Crohn's disease makes a small part of my intestine swollen and inflammed. This can make it very hard to eat certain foods. I have great difficulty passing food through my intestines because of this and it can result in terrible stomach cramps, fevers, weight loss, aches and pains, arthritis, and ulcers that can form on any part of my digestive system (from my mouth to my rectum).
I would love to hear from anyone with Crohn's disease and anyone who has had surgery for it. Please, feel free to email me.
I would just like to point out the fact that I think I could have things a lot worse. There are people out there who have terrible diseases which they can't control. I don't like to feel sorry for myself. I'll admit I did when I first got diagnosed. I went through a period of times where I would ask myself, "why me? what did I do?" Gradually, I came to realize that feeling sorry for myself wasn't making me feel any better and it wasn't going to give anyone a better impression of me. Over the years I have really learned to deal with my disability through the use of finding ways to control my attitude. I honestly believe that attitude is 50 percent of the battle. I am always looking for things that can make me laugh and enjoy life. It is not good to be a pessimist when you have Crohn's disease. I am an optimist eternal.
I believe it was in the movie "The Shawshank Redemption" where Tim Robbins addresses Morgan Freeman by saying: "Hope is a good thing. Perhaps the best of things."
Those are the words I live by.
FEVERS
The fevers, right about a year before my surgery, is what really made me feel sick. You see, when your stomach get all twisted and inflammed from the Crohn's flare your body tends to think there is some kind of germ inside. Hence, you get a fever. The past year my Crohn's was acting up so much that I would get fevers on a daily basis, some of them reaching up to 104.5! This is what landed me in the hospital in June of 1998. I had a relentless fever that kept rising a degree every day. Once the medical staff determined it was from my Crohn's they gave me a shot of cortisone and everything was fine. It was only later when my body wasn't responding to the steroids that I finally had to go in for surgey.
WEIGHT LOSS
Here's another sensitive subject. The weight loss. This can especially rough on someone, particularily men because being thin is associated with being a pansy. There are times when eating makes you sick and it can cause great pain. So, what do you do to relieve the pain? You don't eat. Plus, it doesn't help matters that people with Crohn's disease don't absorb nutrients the way a normal, functioning digestive system would. Someone with Crohn's may only take in fifty to seventy-five percent of the nutrients of some foods. My weight has fluctuated every year. Typically I weight 165 pounds. If I go into a flare I will usually lose 5-15 pounds within weeks. That's why I'm always looking to add more weight to my body. You never know when a flare might strike and that extra body fat is going to be needed.
ARTHRITIS
Because Crohn's disease can cause inflamation in any part of the body (including the eyes), arthritis is something else I tend to get a lot of. It genereally occurs in my hands, but I've had it in my spine, too. In fact, there is a specific type of spinal inflamation Crohn's disease patients can more readily develop and we always have to be on the watch for it. This factor is one of the more debilitating parts of the illness. It makes it extremely hard to walk, get out of bed, shower, and get dressed. I have had it in my spine during bad flare-ups where I wasn't even able to dry myself off once I got out of the shower. I had it so bad in my hands once I couldn't even open a fire door at the movie theater where I worked. I was just a young lad at the time, too.
The Crohn's Map is now up. Click here to check it out!
June 22, 2006 Wow. Still getting hits on the old website. Just thought I would stop by and drop y'all a line to let you know I'm still alive. The Crohn's front has been OK. I had a slight flare in 2004 that sent me to the E/R and I had to go on prednisone and a liquid diet for a while, but no major problems since then. Oh, if you want to email me, please send email to: mikep@gra.midco.net. I love to hear from everyone still!
03-20-03 Hi everybody. I see my website is still getting hits, so I thought I would drop by and give everyone an update. I also have to say that I do enjoy reading the responses in my guest book regarding your own stories of dealing with Crohn's. I'm glad I can give comfort to others even if it is only by sharing my own story. We are NOT alone!
Anyway, what is new from the front? The Crohn's has been good and I thank the Lord every morning. I think it has been over four years now since my bowel resection. I believe I have remained flare free. I'm still taking a regiment of Pentasa and other suppliments. I really can't complain. Oh, I am on Nexium for Acid Reflux. That's been a real joy to have, too! My doctor also tells me I need to start exercising, otherwise my cholesterol levels are going to be sky high in 10 years. Now I'm working out at a gym, lifting weights and running/walking on a treadmill.
08-03-02 Hello everyone. I must apologize for the lack of updates to the site. I have been busy pursuing my wonderful career and just bought a home. These are things I wasn't sure I would ever be able to do for many reasons, not just because of Crohn's disease. Even though I have gone through a lot of trauma and pain in my life (as I'm sure all of you have), I have managed to persevere and over come many difficult obstacles. It really is a testament to the human spirit and what one can accomplish through will power, determination, and ALWAYS KEEPING A SENSE OF HUMOR. I recently have stumbled upon a little setback, really my first one since my bowel resection. It appears that my body is unable to absorb Vitamin B, which in turn has made me develop dry, cracked sores in the corner of my mouth. Think how that feels when your trying to get certified in CPR! Not fun.
Anyway, it looks like I will have to get monthly B-12 injections, which shouldn't be too much of a hassle. As long as it can make me feel better, I don't mind doing it.
I would also say I don't know how often I will be updating this site from now on. It really has become a labor of love for me and I have enjoyed playing with it. However, I really must admit the great satisfaction I get when someone e-mails me with their own their own Crohn's story. I have a lot of people tell me this site was comforting to them, just because it meant that they were not alone when it comes to Crohn's.
I've corresponded with people from all over the world, from Australia, to Israel, to the UK, and all over the United States. I even managed to meet my "Barium Buddy" Amber, from California, on the internet. None the less, you all have been very special to me in your own way.
I now have to concentrate on living my life. Have you seen the new Crohn's disease commerical on TV? I've seen it a couple of times, and I would like to close this update with words from the ad. "People living with Crohn's should be doing just that...living."
Thank you all.
01-23-02 Happy New Year everyone! There has been a lot of change in my life since I last turned in an entry into my diary. I got married in September and I got a job transfer back to my hometown, my wife, and my dog! I'm back in Grand Forks and I couldn't be happier. I have a job I love and my new wife just got a job at our local clinic. With so much good in my life I really can't complain about my health. Things have been good regarding my tummy, though a few weeks ago I had some cramps. The stomach is okay at the moment.
Just a note of well wishing to go out to my dad (Pappy!). I love you, Dad. Take care and rest up. Kelly, you take care of Pappy! I know you will. I love you guys.
9-27-01 As the Tummy Turns...My Crohn's has been pretty good the past couple of days. There was a point a few weeks ago, right after starting my new job, that I think my tummy took a good shalacking to. I was a nervous wreck and my calm, cool, laid back self was NOT showing up. I'm better now and I'm ready to announce to the world that Heather and I are getting married on Friday, September 28 -- less than 24 hours than now. In light of all that has gone on in the world, we decided not to postpone our wedding any longer.
9-7-01 Cowboy up! I want to thank all of you who have written to me or dropped a not in the guestbook. I'm sorry if I haven't gotten back to all of you. I appreciate it very much.
Well, I'm all by my lonesome right now working at my job in the Badlands. It's keeping me busy. I must say it was quite a stressor picking up and leaving everyone and it probably affected my stomach somewhat. It's been a little tender the past couple of days, but I think it should end up okay and nothing serious.
8-5-01 This is to let all of you know that I may not be updating my site as often. You see, I managed to gradutate college and now I finally got the job I always wanted -- movie producer! Not really, but I did accept a position as a juvenile court officer in southwest North Dakota. This is the exact same thing I did during my internship, so I'm pretty lucky. I'm sure I'll be busy, but I'll also be lonely. So, maybe the updates here will actually happen more often. In all reality, concerning my new career, I find that it would be hard to come by another job in my field that will let me work 8-5, Monday through Friday and have all my weekends off for the rest of my life. Is is possible? I've never experienced "banker hours" before, but I'm looking forward to it. Most importantly though, my new job is one with the state, and I get full benefits from day one -- even if I have a pre-existing condition. I may have to pay a little more for my pills now, but it would be worth it just so I don't have to hear people yell at me because Target is out of stock on a camera.
7-12-01 Hello nurse! Just a little self indulgence for myeslf, but to the left you will find a picture of my sweetie all dressed up in her nurse uniform. Doesn't she look spiffy? I must admit, I am a tad bit lucky to be marrying a nurse. How many Crohn's disease patients can say they have a real live nurse to live with them?
Do you think I'll get a sponge bath whenever I want? Probably not, but it's still quite reassuring to know that I will have someone to take care of me if I get seriously ill in the future.
7-6-01 Hi everyone. Well, things are still looking good on the Crohn's disease side of things. I'm taking my meds, keeping the weight on, and trying my best to stay away from stressful situations. Now that my B.S. CJS diploma is sitting on my desk, things are a lot easier to deal with.
I'm still looking for another job. I did get a job with a local agency doing independent investigations for the court here in town, but it's mostly a free-lance type of job and the hours are really wacky. Still, it's good money and looks excellent on my ever-growing resume.
Heather, my fiacee as most of you know, has started her clinicals and has one more semester to go before she is done with school. It will be good to know that I will be marrying a nurse -- and it's not because she gets to wear a sexy white nurse uniform! Well, partly, I guess. Whoo hoo!
Well, I'm a college grad now. I got all my grades in and all I have to do is sit back and wait for the job offers to roll in. Yeah, right! I'm really trying hard to find some good work in my area and I have five applications out for various criminal justice type jobs. Wish me luck!
5-4-01 I don't know if it the stress of all that is going on right now, but I somehow managed to develop one of my famous tongue ulcers a few days ago. These ulcers were quite common and happened frequently before I had my surgery. They were usually an indication that I was about to go into a flare-up. So, I was a little worried the other day when I found my tongue to be slighly sore. When I went to look in the mirror, I confirmed my suspicions. It was a tongue ulcer. Fortunately for me, the ulcer was underneath my tongue and NOT on the side -- where they usually occur. It is almost impossible to eat anything without having terrible pain when I have an ulcer on the side of my tongue. With it located underneath my tongue it was quite bearable. Chewing food didn't rub against the sore. Today it has subsided (thanks to a few more Pentasa pills and a garlge of Pepto Bismol here and there).
4-16-01 Hello. Just another little note to let you know I'm still here. Today I'd like to talk a little bit about how important affordable healthcare is to all of us with chronic illnesses. My part-time employer, Target, has a fantastic healthcare plan, one that I'm lucky to be involved in. I get 80 percent coverage for all my medical bills with a 250 dollar deductible, all for under 30 bucks a month. Pretty decent, since they've probably paid over 30,000 dollars in medical bills for me in the past three years. I also am taking Pentasa. Most of you reading this should be familiar with the drug. I take eight pills a day and have to take them the rest of my life. Without health insurance, a month supply of Pentasa for me would cost $250. No kidding here, that comes down to $1 per pill. Crazy, huh? With health insurance I payed $45 per bottle for a month.
However, I recently signed up for an ongoing prescription plan through Target. Guess how much I pay now for the exact same medicine? Twenty dollars for a three month supply. That is LESS THAN $7 PER BOTTLE. Pretty good deal, huh?
Just a little note to let you know how important it is to keep your Congressman and Senators informed about healthcare and the problems our disabled patients face in our country.
3-8-01 Hey everyone. I hope all is well with those of you who have Crohn's -- yeah, right! Anyway, just a little note on the guest book. It has been working out well and I'm pleased with all the responses. I've been busy trying to graduate and work AND work at my internship, so I haven't been able to get back to a lot of you. Also, I'd like to mention that the guestbook is cutting off longer entries, and that's not cool. I'll try and shop around to find another one that will allow for more room, okay?
I've also been doing some very unscientific data collection on where I get my e-mails from with regards to others who have Crohn's. This info will be displayed on my CROHN'S DISEASE MAP, which you all will be able to access soon. Basically, I'm putting a red dot on the state or country I've gotten an e-mail from. So far the North East of the United States is over represented compared to the rest of the country. I'll post it soon and it will be modified often.
In the meantime, my health continues to be good. I hope the rest of you can feel good again someday.
2-20-01 The guestbook is a hit! Hey, it's been over two years since I had my bowel resection done. Things have gone very well for the most part. I finally went to see my GI doctor for a check up and told him that I quit taking 6-mp 18 months ago. He was a little upset that I didn't call him and tell him, which is totally understandable. During our visit I said that the Purinthol (6-mp) made me too tired and too weak and that I didn't want to take it again. He said that was fine and put me back on Pentasa -- of which I'm taking eight pills a day. Surprisingly, it has curbed my diarrhea dramatically.
12-26-00 Sorry I haven't been able to update the site in THREE MONTHS, but I have been a busy boy. I started to TA a class at college this year, and when the professor ended up in the hospital, me and the other TA had to take over! Crazy! I gave three lectures, one on community policing and two on the history of corrections in the United States. It was pretty cool and I had a whole lot of fun doing it. It's a good thing I've been in remission so long, because I could never have done something like teach if I was sick.
Next up is my internship with the local juvenile court. I can't give out too many details because of the type of job that it is, but it should be pretty cool. Plus, I get my own office in a brand new county building. Way cool.
As I said earlier, the tummy has been behaving good. I haven't had any real problems, aside from a minor cramp here and there. I also have kept the diahrrea under control by using Metamucil when I need to. I have also quit drinking milk because of the new research on it, pasturization, bacteria, and the connection it has to Crohn's disease. No milk has seemed to keep the loose bowels down to make them function more normal.
I'm also going to finish college in May -- something I thought I would NEVER be able to do because of my stomach and the complications I have had with it for the past 13 years. I just hope I can keep healthy for a long time.
9-4-00 Things appear to be going well on the Crohn's front. Everything in my stomach has seemed to stablized and even the diarrhea has subsided quite a bit. Other than that, I just got out of the hospital with an inner ear virus that made me feel like I was a spinning top. Not fun. I was vomiting so violently from the spinning that I felt I was Linda Blair from THE EXORCIST. I ended being hopsitalized for it and the doctor who was treating me thought I had a brain tumor. NOT COOL. So I had to have what I'm sure will turn out to be a super expensive MRI done on my brain. Luckily for me, NO BRAIN TUMOR.
7-04-00 Happy Fourth of July, America! It's a hot one here in Grand Forks. I just got done mowing the lawn and I was sweating like a stuck pig. All the extra weight I've put on really makes a difference when it comes to physical activities. I got really hot and I think I suffered a little heat stroke. I'm okay now.
The Crohn's disease condition has been good. No cramps or pain. I thank God everyday that I have been able to have such a pain-free life right now. Literally, from day to day, I'm happy that I don't have to worry about what to eat, if I'm going to get a cramp or a fever, or if I'm going to have to go to bed early because I don't feel well. This surgery was well worth it. It's been a year and five months and I'm still good.
4-30-00 Sorry for the delay in updates. Delays usually mean one of two things: either I'm feeling very good, or I'm feeling very sick. Fortunately for me, I'm feeling very good. It has been over a year since I've had my bowel resection and I can't tell you how wonderful I feel. Royd was right when he said I would feel great and that I would have wished that I would have had my surgery done a long time ago. It's been fantastic. My energy is back, I don't get any fevers, and I've been packing on the pounds like you would not believe. Life is good.
Hello, Hawaii! I got my first e-mail from Hawaii just the other day. Now all the states have been represented. Amazingly, I get a good share from the UK and Austrailia -- but I guess it helps that English is spoken in both countries prominantly. I'm soon going to put up a virtual map of all the e-mails I've gotten from around the globe. Keep on the lookout!
3-15-00 I would just like to say hello to N. ! He had his bowel resection yesterday for Crohn's disease. How's the tummy feeling N.? Good luck!
2-10-00 It's been a whole year since I had my bowel resection done and I'd like to give you all a little progress report. Things have genrerally been good. Aside from the fistula in my rectum that got infected and aside from the blood transfusion I had to have in August, things have come under control. My weight is holding steady at 175-180, but I'm always looking to add more, though it might look better if it was more displace over the rest of my body, instead of settling in on the belly area. The stomach cramps have been few and I can only recall three seperate incidents where I was doubled over with pain. That's pretty good because before the surgery that would happen to me several times a day. One probelm I do have is the diarrhea effect. But I've found a cure for it. Believe it or not, a glass of Metamucil will totally get rid of the diarrhea completely! I only used to think that stuff was for constipaton, but it is for regulating bowel movements either way! I suggest using Metamucil for all of you who have diarrhea problems. It's good stuff and it should work immediately. Seriously, it is a wonderful product that almost instantly cleared up my loose bowels! Spread the word, fellow Crohn's disease patients! I swear on my heart, Metamucil will totally help you out! I take it with me on EVERY trip, no matter where I go. You should too! They even make these great little individual packs that contain a single dose.
Again I would also like to thank all of you who take the time to e-mail me. Even if I don't get back to you right away, I really appreciate what you tell me. I promise to try and write back in some form or other. I've gotten e-mails from around the world, from Australia, to the UK, to Korea, to the Middle East, not too mention from every state in the US -- except Hawaii.
1-26-00 Looks like the apocalypse didn't come when the clock struck twleve in the year 2g. No one blew up, my computer rolled over to the new century with ease, and the dead didn't rise from the grave to attack the living.
As for the tummy, my stomach is doing quite well, too! No cramps for a long time, no urges to go to the bathroom. All is well. School is going good for me (so far) and I just got to pick three places I can serve my internship in. All three were juvenile courts. The next few days I'll be gathering up information for my resume. What does this have to do with Crohn's? Nothing, I guess. But it does show you that I'm starting to get a hold on a "normal" lifestyle.
Just an another thought, I would like to wish Amber the best of luck with all that she is going through now. My thoughts are with you, B.B.
11-30-99 The end of the century is soon upon. Wow. Ten years and I'm still going to college. This is mostly due to the fact that an active case of Crohn's disease can throw a wrench in my plans. I can finally see the light at the end of the tunnel. Just a little update on the Crohn's, last week I had two major cramping occurrances while at work. Both happened within 30 minutes of each other. I knew what they were when I felt them. They were the first cramps I've had since my surgery. Then, last week, my stomach started to make funny gurgling noises in the middle of the night. This is what upset me the most because those noises mean there are strictures probably forming in my gut again. Not cool.
10-28-99 Hola! And drop the Chalupa! Or in my case, Whopper and chicken sandwich. You know, I used to eat a lot before my surgery but I never took in very much nourishment. That's why I could eat six hamburgers and only get the calorie effects from one. Now that I am able to absorb more vitamins and nutrients the weight has really packed on. This is good. Before I could eat and eat and eat and eat and I would get past 150 pounds. Now I weigh a cool 175. I've gained three inches on my pants sizes and I've had to go out and get a whole new wardrobe. Ah, but am I getting fat? No, I hit the weights everyday and I do stomach crunches every night. I'm bulking up and getting big and that is something that makes me quite happy. Things right now really seem to be clicking for me. I've got a 4.0 average on my first half of the term in my classes, I feel healthy and strong, I was elected to an officer position in the Criminal Justice Association on campus (Public Relations Officer), and Jeff George is actually throwing the ball to Randy Moss.
10-10-99 I would like to say I'm sorry not updating my diary as often I would like. I know many of you do enjoy reading about the illness we share in common, but I have been SO busy with school and work that I really haven't had time to sit down let you know what's going on in the wonderful world of Crohn's disease. First, I'd like to say that my blood has made a complete recovery. I feel very energetic, more than I have of late anyway. It's nice to come home from school and not have to collapse on my bed due to exhaustion. It probably helped taking nearly 1000 mgs of iron a day. The problem with my legs and feet was solved with a few arch supports. Man, that was a wonderful invention. You would not believe the serious pain I had to deal with. My feet still get sore if I stand on them for too long, but the sheer pain is gone. I'm still not taking the 6-mp. I'm thinking I might wait a little longer before I think about getting back on. I don't know which problem is worse: dealing with the Crohn's complications or the 6-mp complications.
9-4-99 Greetings from the cold and flu capital of the world, my bedroom. Yes, because my immune system is suppressed I often am succeptible to different viruses and at this time I am having a hell of time with a head and chest cold. Anyway, on the brighter side, I have been off the purinthol (6-mp) for almost a month now and my blood has began to finally make a recovery. My hemoglobin was up to 12.4 and my white count was at 5910. This is excellent news. Plus, my thining hair is starting to come back! Now my doctor wants to wait until my cold is gone before I start the chemo again.
8-25-99 I'm still feeling very tired and have little energy. My energy isn't as bad as it was a few weeks ago, but I still get very sleepy in the late afternoon and my feet and legs are still in chronic pain. I get my CBC done again tomorrow. I am praying that my hemoglobin is on the rise. It better be on the rise because I'm taking damn near 1000 mgs a day.
I would also like to say I won't be updating as often because I'm going to be very busy with school.
8-19-99 Have you ever felt like Job? Do you ever feel that God is throwing all he can at you to see if you will eventually crack? Well, I'm almost at that point. I went and got my CBC (complete blood count) test done yesterday and I got back good news and bad news. The good news is my white count is slowly, slowly, slowly rising. On the other hand, my hemoglobin dropped another point and I believe it is currently at 8.3. My heart continues to work over time anytime I climbe stairs or walk a great distance. It seems like I'm relegated to sit in a chair or lay in bed all day. Basically what this low hemo count means is oxygen is not getting carried to many parts of my body. The fall semester is about to start and all I want is to feel healthy.
8-15-99 I'm starting to feel somewhat lightheaded again and my heart rate has started to race more often once more. I think I'm going to call the doctor tomorrow to see if I can get my blood checked once again. I can't help but feel a little bit scared. Sometimes when I'm all by myself I wonder how much time I have left on this planet. I just feel so sick so often and every year something comes up and makes me feel even worse. I've been hospitalized three times in the past 14 months and I'm getting a little depressed. I had such hopes and dreams of living a "normal" life after I had my bowel resection, but those dreams have failed to materialize. I find it increasingly hard to keep my chin up and keep my attitude and mind in high spirits. I don't think that I have any fight left in me. I'm begining to wonder if my old heart can take any more torture for any more duration. I feel weak and tired and unispired. Sometimes I wonder if I have anything to look forward to -- some kind of life that won't be filled with pain and fatigued. I look at people just walking around and I'm envious because they aren't walking with pain or difficulty. I can't even write a paragraph without my hand cramping up. I'm 27 years-old and I feel like I'm trapped in an 87 year-old body.
Well, I'm going to bed now. Tomorrow I will wake up with pain in my legs, I will hobble to the shower and start a new day.
Good night everyone.
8-11-99 From The Continuing Story of Radar Love...I just got out of the hospital yesterday. What's that, you say? You heard right. I have been having trouble over the summer with my energy levels and pain in my extememties. So I made an appointment to go see my docotor. I went in for some blood work and found out that my white count dropped to 1000 and my hemoglobin dropped to 5.4. YIKES! Two hours later I was in the hospital getting a blood transfusion. I got a totally of four units of blood, which I think equals four pints, but I'm not sure of the equalivance measurements. I left the hospital with a risings white count and a hemo level of 9.0.
What brought this on? Most likely my daily dosage of 6-mp. I begining to think that my being on 6-mercapotopurine has done more harm than good. I still have my fistula in my rectum. I've been growing more and more pissed off every day. I feel like I can't win. I'm weak and tired -- BUT I STILL HAVE MY SENSE OF HUMOR! Thank you Gidgit -- The Taco Bell Dog. Her commercial's make me laugh and that's a good thing.
So I know I have someone else's blood in me. I admit I feel a little better and have much more color in my skin, but not too much has changed. I go in Friday the 13th (that's a good sign, huh?) to get my new levels checked. I'll keep y'all posted.
8-5-99 I'm sorry for the delay in posting but I have recently had a lot of personal issues to contend with as of late. Anyway, I'm am finally off the Flagyl. I've been talking to my doctor about how my funny my legs feel and he thought it might be related to the Flagyl. This is how it feels. Imagine you've exercised your legs and feet ALL DAY. Then when you get out of bed the next morning your body feels totally sore. That's how my legs and feet feel. Very weird. My blood counts were low again so I'm going to have to get that checked out soon. Is there anything I can do to get my hemoglobin up???
