Crohn's Disease

PissBottleMan · May 2006

I can only speak on my experience...I went in to my gastro doctor for a follow up after my first colonscopy.

He showed me pictures from the procedure and showed me the ulcers in my colon...it was pretty obvious that something was not right.

If the doctor you have isn't giving you the answers you need...change. It's as simple as that. I have changed gastro doctors over the past 6 years for a variety of reasons. Luckily, I've found one now that is great.

I don't know how you did that prep before a show....you are a better man than I.

Keep us updated....I hope you are well today.

PBM

Krohn · June 2006

I've been real busy at work since I took the week off for the PJ shows in May, I haven't had any time to post. I wanted to be sure I got this one in though.

My entire life I've had health problems. Since I was a baby until now. All through school I had to use lots of sick days, and was always playing catch up. At work, I've always had an issue with sick days, never having enough for the entire year. Always having to save my vacation time for sick days. My 26th birthday was on Friday. It's post worthy, because I wanted to share this. For the first ever, in my entire life, I've gone 6 months without needing to call in sick. I've never been healthy enough for a 6 month span. I used to be very proud when I could go a full month without needing to call in to work/school. I wanted to share some good news, and the hope that we can be healthy some day. I pray it lasts, and more so, that others get to this point as well. With the work thats being done with these fundraisers, the hope increases each day

Krohn

PissBottleMan · June 2006

Awesome Ryan...it does feel good to have a few sick days in November and December doesn't it?

PBM

BoltOfLightnin' · June 2006

Wow - I just spent about an hour and half reading all of these posts. I've always had bowel issues. My mom said when I was a baby she couldn't keep me on formula. When I was in grade school and had an 'accident' my step-father told me it was a 'inherited' problem from my father's side (not sure how he knew that or what exactly he meant). I've always described my situation as being one extreme or the other. I'm never 'regular'! So, when I finally talked to my good for nothing except writing scripts that don't help doctor about it, he chalked it off to either lactose intolerance or IBS, but I never followed through with any kind of treatment. I try to stay away from dairy cause I do know that that's a factor, ice cream kills me :( - and I notice it gets worse around 'that time of the month' also. Anyway, I'm seeing a new Dr. tonight, and one of the things I want to talk to him about is a mammogram (i'm 35 and have a family history of breast cancer) and I'm thinking of talking to him about this other problem.

I hate to take medicine - I can't ever remember to take vitamins and will sometimes wait until my head feels like it's being hit with a hammer before taking tylenol - so, I'm a little scared - esp since I know certain meds have made it worse too. Like, someone posted awhile back about maybe taking xanax to calm down to help the IBS - personally, I have taken xanax and find it makes my stomach ache more after a couple days taking it. Also, when I had surgery a couple months ago and they gave me percocet, I didn't shit for a week! I was so bloated I thought I'd float away like a balloon! And pot - I smoke pretty regularly, but have noticed that a lot of times, right after, I have to go to the bathroom! Oh, and someone else wrote about that herbal stuff, starts with an A - someone told me to take that while I was on antibiotics to prevent yeast infection - but it didn't work. I know I'm all over the map with this post but a lot is running through my head right now. Nervous about my Dr. appt tonight and having to make the necessary changes to stop feeling so badly.

Anyway, just wanted to show some support to the rest of you...good to see so many people supporting each other like this.

PissBottleMan · June 2006

BoltOfLightenin,

The main thing is that if you have bowel issues, talk to your doctor about them.

If he doesn't have the answers, see a specialist...gastroenterologist.

Taking pills can be frustrating, but if you have a sickness, it becomes part of a daily schedule.

I hope you get everything checked out and keep us updated to your status.

PBM

lovebuzz · June 2006

So after the colonoscopy I did a small bowel series (x-ray of your abdomen where they make you drink the liquid chalk - i.e. barium). Had my follow up with my GI doc Monday. He doesn't think I have Crohn's. That's good news and bad news. Good because, to be honest, I wouldn't wish Crohn's on my worst enemy. Bad because now my doc has no clue what's really going on with me.

In the end, he put me on Donnatal to deal with my abdominal pain and diarreah. Anyone have any experience with this stuff? So far it has seemed to be helping out, but I've only had it for a day and a half, and my most recent "episode" (i.e. extended hospital stay) had been calming down for nearly 2 weeks prior to starting the meds. The doc isn't sure what's wrong, so he at least wants to start trying to lessen the symptoms. (Side note, I find this odd. When I first saw him, he refused to renew scripts I had for Vicodin and Promethazine, which were given to my by the Hospital docs for my pain and nausea, because he said they just hide the symptoms and are no way to treat whatever is wrong with me. Now, he gives me the donnatal which essentially just hides my symptoms...! Sure, Vicodin is a narcotic, and docs seem hesitant to prescribe it, but it was very good about relieving my pain and keeping me out of the ER - why not prescribe it?)

Anyway, spending a week in Myrtle Beach SC for vacation next week... we'll see what happens while I'm down there. I'm terrified of getting ill while down there and having to go to the ER. My in-laws will be with us on vacation, and the last thing I want to do is have one of my bad days with them there... not because they aren't supportive, but it's just kinda a personal thing I need time to deal with and don't want to ruin other peoples vacation because if it.

Anyone else ever worry their Crohn's/IBD/IBS puts a damper on other peoples good time?

Krohn · June 2006

lovebuzz wrote:

So after the colonoscopy I did a small bowel series (x-ray of your abdomen where they make you drink the liquid chalk - i.e. barium). Had my follow up with my GI doc Monday. He doesn't think I have Crohn's. That's good news and bad news. Good because, to be honest, I wouldn't wish Crohn's on my worst enemy. Bad because now my doc has no clue what's really going on with me.

In the end, he put me on Donnatal to deal with my abdominal pain and diarreah. Anyone have any experience with this stuff? So far it has seemed to be helping out, but I've only had it for a day and a half, and my most recent "episode" (i.e. extended hospital stay) had been calming down for nearly 2 weeks prior to starting the meds. The doc isn't sure what's wrong, so he at least wants to start trying to lessen the symptoms. (Side note, I find this odd. When I first saw him, he refused to renew scripts I had for Vicodin and Promethazine, which were given to my by the Hospital docs for my pain and nausea, because he said they just hide the symptoms and are no way to treat whatever is wrong with me. Now, he gives me the donnatal which essentially just hides my symptoms...! Sure, Vicodin is a narcotic, and docs seem hesitant to prescribe it, but it was very good about relieving my pain and keeping me out of the ER - why not prescribe it?)

Anyway, spending a week in Myrtle Beach SC for vacation next week... we'll see what happens while I'm down there. I'm terrified of getting ill while down there and having to go to the ER. My in-laws will be with us on vacation, and the last thing I want to do is have one of my bad days with them there... not because they aren't supportive, but it's just kinda a personal thing I need time to deal with and don't want to ruin other peoples vacation because if it.

Anyone else ever worry their Crohn's/IBD/IBS puts a damper on other peoples good time?

Hey Lovebuzz,

I have not had any experience with that medication, sorry.

I can share the worry about Crohn's and other people's good time. So many times since I was diagnosed (12 years ago) that trips have been cancelled, plans changed, not-so-understanding people getting upset. All because I was to sick, or was having a really bad day. So many people did not understand the day to day changes with Crohn's. I remember a time my Dad, Brother and Myself went on our once upon a time annual fishing trip. We drove 4 1/2 hours to get to the spot. When we got there, I couldn't get myself out of the car, and we had to turn around and drive home. I felt horrible because I ruined the fishing trip. Lets just say thats the last time I went fishing...that was probably 9 years ago. My family has been very supportive and understanding, so they helped taking the guilt away somewhat. Try and find the triggers and what sets off your symptoms. Learning that goes a long way in helping avoid the attacks. Don't get to worried about the trips, the stress only makes things worse in there!

Krohn

PissBottleMan · June 2006

The last few weeks, I've had the energy of a 6 year old...now I've crashed and burned.

Really tired lately.

I'm not quite sure if the Remicade is helping or not.

PBM

PissBottleMan · June 2006

Saw this in my winter 2006 CCFA magazine. Didn't really notice it until now.

http://s14.photobucket.com/albums/a301/PissBottleMan/?action=view&current=Mike.jpg

Cool little news item about CCFA PSA's featuring Mike.

I thought it was pretty cool that they included a picture from the Edmonton show.

PBM

rarghrargh-brownstar · June 2006

PissBottleMan wrote:

Saw this in my winter 2006 CCFA magazine. Didn't really notice it until now.

http://s14.photobucket.com/albums/a301/PissBottleMan/?action=view&current=Mike.jpg

Cool little news item about CCFA PSA's featuring Mike.

I thought it was pretty cool that they included a picture from the Edmonton show.

PBM

thanks!

*bump*

PissBottleMan · June 2006

http://www.fdlreporter.com/apps/pbcs.dll/article?AID=/20060623/FON0101/606230429/1289/FONnews

Drake Diener had every reason to feel sorry for himself.

What started as stomach pains toward the end of his senior season at DePaul didn't end until October, terrifying his family, confusing his doctors and putting his dream of playing professional basketball on hold along the way.

The former Goodrich High School star had Crohn's disease — a chronic disorder that inflames the intestines and has no cure, no known cause and while not fatal, can drastically alter the lives of those it affects.

And so, Diener, who spent last summer trying to figure out what was wrong instead of trying to make an NBA roster, found himself back where he started last May, a jagged scar on his stomach a constant reminder of his several surgeries.

Not that he's complaining.

"People were saying that the timing was bad for me because I was trying to make it professionally," he said. "But I can't imagine what it's like going through this if I was 10 or 12 years old."

When he found out about Camp Oasis, a weeklong camp in Waupaca for kids ages 10-17 with Crohn's and ulcerative colitis, a related illness, he wanted to help.

There had already been plans in the works for a Fond du Lac alumni basketball tournament, and Drake Diener wanted to make it for charity and donate the proceeds to Camp Oasis.

Thus the Cagers for Crohn's event was born. The tournament, sponsored by News-Talk 1450 KFIZ and a slew of area businesses, begins at 9 a.m. Saturday at Riverside Elementary, the old Goodrich High gym.

More than 60 alumni will comprise eight teams divided by year for a day of basketball for a cause that was, for the most part, unrelated to the Fondy basketball family until it attacked one of its own.

A scary situation

Last May, Diener's life was a blur. He was in and out of workouts, talking to coaches and general managers. Second round of the NBA Draft? Europe? Summer leagues?

He was on the verge of realizing his dream — playing professional basketball.

Then, the stomachaches worsened. He visited St. Joseph's Hospital in Chicago, was given medication and told to come back if it didn't get better. It didn't, and it was assumed, after a CAT scan, Die-ner needed an appendectomy. It wasn't until surgery that doctors noticed he had a tumor the size of a woman's fist.

His prospects of being drafted vanished, but he still could latch on with an NBA summer league team.

But the medical condition never improved. It kept getting worse.

The blur increased. He was in and out of hospitals, talking to specialists and doctors — each speculating on what was wrong with him: More tumors? Cancer? Worse?

"There was never really a low point," Diener said, "because it just kept getting worse and worse."

Basketball became an afterthought. His father, Dick Diener, retired from teaching, meaning he'd have to reapply for his job as basketball coach, a post he held for 22 years.

"That put things in perspective in a real hurry," Dick Die-ner said. "When you're marching into cancer centers, basketball is the farthest thing from your mind. If you have your health, you have everything."

Drake Diener lost more weight. He dropped 50 pounds, Dick Diener said, in a few months. He went from couch to doctor to hospital to couch. Still, no answers.

"The scariest part was when you don't know what is wrong with him," Dick Diener said. "We had about two months where we could not figure out what was going on with him. It was devastating. There's nothing worse for parents than to see their kids when they are really sick like that."

It wasn't until October — four months from his first visit to the doctor — that Diener received the diagnosis. Crohn's disease.

"It was actually a pretty good feeling," Diener said. "Now, nobody wants to have Crohn's. But in the back of my mind, there were a lot of worse things I could have had."

What is Crohn's?

Crohn's disease is a chronic ailment that causes inflammation of the digestive or gastrointestinal tract. Along with a related disease, ulcerative colitis, it is one of the two most common types of inflammatory bowel disease.

There is no known cure. Because the disease affects people in different ways, the cause is also indeterminate but studies have shown that genetics may have something to do with it.

Diener said he's the only one in the family to have it, adding to the mystery of what can cause the disease.

Because of the nature of inflammatory bowel diseases, Crohn's doesn't receive much public discussion.

"Our mothers taught us to not talk about bathroom-related matters," said Jan Lenz, the executive director of the Wisconsin chapter of the Crohn's and Colitis Foundation of America. "People try to keep quiet about what it really entails."

There are some celebrities that have it. Pearl Jam lead guitarist Mike McCready, Jacksonville Jaguars quarterback David Garrard and pop recording artist Anastacia all have it.

"It's an equal opportunity disease," Lenz said. "It affects people from all walks of life."

Wisconsin, Lenz said, has the highest incidence of inflammatory bowel diseases in children in the world to date (seven out of 100,000).

Those affected by Crohn's take various medications, but since it affects different people in different ways, there's not one cure-all drug.

Diener said he only takes four pills a day, placing him on the lower end of the spectrum.

Diener said that from time to time, he has stomach pains, but he's avoided any major bouts with the illness. His biggest struggle, he admitted, is psychological.

"In the back of my mind, I know that something can happen at any time and I'll be back in the hospital," he said. "That's the biggest thing I have to deal with — the mental part."

Not giving up

At the same time, Diener is resolved to make it professionally, somewhere.

Since he already was exposed to the NBA Draft last year, Diener won't be selected next Wednesday when the NBA holds its 2006 draft. His plan is to latch on with a summer league team, then find his way into training camp and onto an NBA roster somewhere.

"I'm on the right trail and I'm doing pretty well," he said. "My agent says he's very confident I'll be on a summer league team somewhere. He's not sure where, exactly. He'll wait until after the draft and find somewhere where I can fit their needs."

He recently played at a camp in Orlando for players that aren't eligible for the draft but still have a shot at the NBA.

"He's generated a lot of interest," Dick Diener said. "We're pretty sure he'll be playing somewhere this summer."

In the meantime, Diener is focused on making the Cagers for Crohn's event as successful as it can be. The event, spearheaded by Brad Bestor, a standout Fondy player in the mid 1990s, will feature all of the Fondy greats, including Travis Diener — Drake's cousin and a member of the NBA's Orlando Magic.

The goal is to raise $10,000 through sponsorship, an online auction, a silent auction and other avenues.

Diener can't think of a better place to donate the money than Camp Oasis.

"These kids get a chance to see that they are not alone," he said.

PBM

PissBottleMan · July 2006

Nice write up about the fundraisers in the NW Chapter newsletter:

http://i50.photobucket.com/albums/f331/Lizardkings1/CCFAarticle.jpg

PBM

IamMine · July 2006

PissBottleMan wrote:

Nice write up about the fundraisers in the NW Chapter newsletter:

http://i50.photobucket.com/albums/f331/Lizardkings1/CCFAarticle.jpg

PBM

Nice!!!!

And you all did a TERRIFIC job, too!

It was very good seeing you and Mandy again in Cincy.

She's glooowwing!!!

PJfanFORlife · July 2006

Can anyone recommend a good multi vitamin? i take a b12 shot every month and i use to use Centrum, but centrum doesn't really do anything for me. what brands have you had success with? i have been sluggish latley

PissBottleMan · July 2006

PJfanFORlife wrote:

Can anyone recommend a good multi vitamin? i take a b12 shot every month and i use to use Centrum, but centrum doesn't really do anything for me. what brands have you had success with? i have been sluggish latley

Man...I know what you mean. I have those times as well.

Lately, I've just relied on my Remicade to give me an extra boost. I took a generic vitamin (got it at the grocery store) along with my B12 shot for a while.

For some reason, I stopped taking both...really haven't notice a difference (I'm not recommending you do that).

I've tried to exercise more too...not a whole lot...I just walk the dogs around the neighborhood a couple times a day...that seems to help.

It's hard to get out and exercise, especially if you have no energy, but if you can motivate yourself to take the first step and go outside, you might feel a little better.

It's tough...I know where you're coming from man.

PBM

Krohn · July 2006

It's been a few years since I was on any medications, but when I was seeing my Gastro regularly, he would always tell me to take Praterna (sp?). It's a pregnancy vitamin if my memory is correct. Might be worth reading a bit on if you haven't tried it yet.

Good luck.

PJfanFORlife · July 2006

Ever get nervous to go places due to the bathroom situtation? or cancel plans because of that? For instance i live in florida and my friends like to go to this secluded beach that doesn't have any restrooms, but i never go cause i feel uncomfortable bein there is no restroom.

Sucks cause i am single now and going to start dating and it is makin me nervous cause what if we are to stroll on the beach or somethin. sucks

MCG · July 2006

PJfanFORlife wrote:

Sucks cause i am single now and going to start dating and it is makin me nervous cause what if we are to stroll on the beach or somethin. sucks

Does it suck? You are damn right it does! I used to not go out or cancel plans due to similar situations too but at that point you are letting it control you instead of the other way around. Take a chance man, sometimes it will work out and sometimes it will be disasterous but it's just the risk you have to take sometimes. Best of luck!

PissBottleMan · July 2006

PJfanFORlife wrote:

Ever get nervous to go places due to the bathroom situtation? or cancel plans because of that? For instance i live in florida and my friends like to go to this secluded beach that doesn't have any restrooms, but i never go cause i feel uncomfortable bein there is no restroom.

Sucks cause i am single now and going to start dating and it is makin me nervous cause what if we are to stroll on the beach or somethin. sucks

Yeah...sometimes at work I have to be out on shoots all day away from bathrooms.

I had to rethink how I did things...if I know I'm going to be away from bathrooms for extended periods of time, I take Immodium or I cut back on large meals. Usually that does the trick.

PBM

PissBottleMan · July 2006

I was watching Erin Brockovich on Sunday and noticed a Crohn's Disease reference.

Never noticed that before...it was a small mention, but nevertheless.

PBM

Crohn's Disease

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