My Fight against Crohns.

My Week - Less Pain, Less Prednisone, Add in Dicyclomine, and Maybe 6MP

2007-12-01T21:00:00.000-08:00

Its been over a week since I wrote an entry. Nothing has really change with me. After checking in with the doctor's office, my Prednisone was cut again. They now want me to take only two and a half pills per day. I guess that is good news. They did add a medicine called Dicyclomine. I think they said for the cramps that I still have. I'm also starting to feel less pain after a bowel movement. I am happy about that.

I was told by the doctor's nurse that to see what course of action we are going to take next that I have to have a test done. Looking at the test requisition, it's called Prometheus. On the sheet it looks like I am supposed to have a TPMT Genetics, TMPT Enzyme, IBD Serology 7, and Celiac Serology test done. Yeah, I have no idea what these are. But, I went to the lab the nurse referred me to, and the technitions there told that they were not sure they could do the tests. After waiting while they checked, they told me that they could, but I could not stay. They techs told me to just come back. Around a week later, I did return, and was told that they did not do this specific test. This left me a little angry because in that time I could have found somewhere else to go. Now that's what I'm doing. I should have had these labs around two weeks ago.

The doctor has talked about starting me on 6MP. I don't much about this treatment, but if it helps.

Happy Thanksgiving

2007-11-22T21:38:00.000-08:00

I hope everyone enjoyed their holiday and didn't indulge too much. I know I certainly felt like I overate, even though I tried to watch how much I stuffed into my mouth. I had the most painful cramps, and I thought I was going to vomit.

The good news it that I didn't have to go to the restroom today. I made sure I did it yesterday. Which was horribly painful btw. I think I spent almost an hour on the toilet. I thought I was done, but within another 30 minutes I was back for another round.

So when I was finally done I took a percocet, and around a two hours later I felt GOOD! :)

Changes with medicine. Good and Bad.

2007-11-19T17:01:00.000-08:00

For the last few days I have been talking back and forth with my doctor's nurse. We have have talking about how I feel, what new symptoms I have experiencing and any questions I have. I have mentioned to the nurse for like the 20th time that I am unable to sleep and also the pain I feeling after having a bowel movement. They tell me that there is nothing that they can do about not being able to sleep. She advised that I picked up Tylenol PM, because the doctor will not write a prescription because they feel it may interact with everything else I'm on. As far as the pain, they would like for me to continue to take my Darvocet if I need to.

We also talked about that fact that I am having bowel movement every other day. To me, this wasn't really a problem because it's better than going everyday, multiple times per day. I guess that wasn't good for them. She told me to pick up this laxative called Mirolax. It's a powder that you mix into any drink. The instuctions on the bottle say to take it only once per day, but they want me to take it twice. This sucks. I am not looking foward to starting this.

She also advised me that the doctor wants to lower the amount of Prednisone I take. Currently, I am taking 4 pills at 10mg each. They now want to cut it down to three pills. I don't know how much of a difference this may make, but we will see.

Viagra May Help Crohn's Disease

2007-11-18T02:48:00.000-08:00

I recently ran across an article that’s over a year old but I though it was interesting. It mentioned how researchers in the U.K. have a new theory to explain the cause of Crohn's disease, and they say medications like the erectile dysfunction drug Viagra may prove useful for treating the bowel disorder if they are right.

We all know that with Crohn's disease, chronic inflammation causes ulcers within the digestive tract that can lead to severe gastrointestinal symptoms, including abdominal pain, persistent diarrhea, and rectal bleeding.

Right now, the researchers from the University College London say the most widely accepted theory is that an overactive immune system causes the damaging inflammation.

They believe however, a weaker-than-normal immune response triggers the bowel inflammation that leads to Crohn's disease.

Researchers say "The wall of the bowel is normally an effective barrier against the bowel contents, but sometimes the barrier is broken by an infection or injury and the bowel contents, which include large numbers of bacteria, penetrate into the bowel wall.”

Also, stated was "Normally, an acute inflammatory response would kick in to remove the bacteria and return the condition of the bowel to normal. But in Crohn's disease, we think that the acute inflammation fails to kick-start, leaving bacteria to fester in the bowel wall which, in turn, triggers chronic, secondary inflammations."

The scientists conducted a series of experiments that measured white blood cell production in both Crohn's patients and healthy patients. With inflammation, white blood cell numbers are expected to rise. They found that the Crohn's patients produced unexpectedly lower levels of white blood cells and proteins involved in inflammation, compared with people without the disorder.

That is why they believe drugs like Viagra, which open the blood vessels and increase blood flow, may help. The researchers tested this theory by treating 10 Crohn's patients with 50 milligrams of Viagra after injecting them with the killed gut bacteria. They found that blood flow to the infected area improved. They say, "Increasing blood flow is an important part of the inflammatory response, and that is why this drug may work."

So, I guess I will try to look a little more into this and see what I can find. If anyone else has any info, please share. Thanks.

I love Wal-Mart

2007-11-18T01:44:00.000-08:00

Since the middle of August when I first went to the doctor's office, I have been racking up tons of medical bills and spending untold amounts on drugs. It's crazy. One thing I am happing about is Wal-Mart. All my prescriptions for my gastrointestinal needs can be picked up there, and they are all on their $4 list. I think its cool. I can get my Prednisone, Flagyl, and my newest pill Bentyl for 4 bucks each. I don't know how much they would be anywhere else, but I don't think it would be that cheap. If anyone out there takes a lot of pills I would check with to see if the medicine is listed. Here's a link to their pharmacy page where you can check out the list. I hope it save you all some money.

Attack of the Crohns

2007-11-15T21:12:00.000-08:00

So I woke up this morning ready to go to work and right before I get into the shower I feel like I have to go. I though I would try since I hadn't gone in around four days. Well I went. And went, and went. Afterwards I felt fine. Then around twenty minutes later, my stomach starts hurting again. So I went again. This time took forever. I think I was in the bathroom at least 30 minutes. And it hurt! Alot! After I left the bathroom, I felt so sick. I though I was going to vomit, and I was freezing. I took a darvocet and crawled into bed. Before I feel asleep, I called into work to tell them once again that I would not be able to make it. Which really sucks because I have missed at least 50 hours of the last 80 hour pay period.

My Birthday

2007-11-14T23:34:00.000-08:00

Today was my birthday and I am happy because I did not have to go to the restroom and I felt no pain. My girlfriend and I went to Cheesecake Factory and had a lot of delicious food. I feel good.

Restroom Access Act aka "Ally’s Law"

2007-11-08T23:08:00.000-08:00

While checking out the site crohnsandme.com, I ran across a story about a young girl thats doing huge things named Ally Bain. Ally's story goes like this.

While at a national retail clothing chain store with her mother, she suddenly had to use the restroom. This is something a lot of us have to deal with. While most of us have time to get home, she did not. They quickly ran to a manager to ask to use the employees-only restroom. But Ally was denied access and had an accident in the store. This is something that would simply destroy a lot of us, but not her. As she and her mother drove away, they vowed to never let that happen to anyone again.

With her family, friends, and Illinois State Rep. Kathleen Ryg, Ally worked to get a new law passed in her home state. The law requires businesses to make employee only restrooms available to people with inflammatory bowel disease and other medical conditions such as pregnancy and incontinence.

The law states:
A retail establishment that has a toilet facility for its employees shall allow a customer to use that facility during normal business hours if the toilet facility is reasonably safe and all of the following conditions are met:

The customer requesting the use of the employee toilet facility suffers from an eligible medical condition or utilizes an ostomy device.
Three or more employees of the retail establishment are working at the time the customer requests use of the employee toilet facility.
The retail establishment does not normally make a restroom available to the public.
The employee toilet facility is not located in an area where providing access would create an obvious health or safety risk to the customer or an obvious security risk to the retail establishment.
A public restroom is not immediately accessible to the customer.

The Restroom Access Act has been introduced as a bill in 12 states. Those are Delaware, Kentucky, Minnesota, Pennsylvania, Florida, Massachusetts, New York, Tennessee, Illinois, Michigan, Ohio, and Texas. The bill has passed in both Illinois and Texas. I think this is something that should be introduced nationwide. The site has a download link to an advocate toolkit. The toolkit has tons of info on how one can get this passed in their own state. Click here to get this toolkit.

Can't sleep again.

2007-11-08T02:11:00.000-08:00

I am up another night again. This really sucks when there is no way to fall asleep. I want to turn on the tv, but I can't because there is someone sleeping next to me. I think it really starts to drive you crazy when it is completely silent for hours and you have no one to talk to. So far tonight I have played with the cats, stared at the wall, and surf the internet like crazy. I don't know if I should see the doctor about sleeping pills. Those scare me. But if I continue to take the prednisone, and it continues to keep me up, I may have to.

I don't know how many people are reading this, but does anyone have any thoughts on what I should do? I would really like to know. Thanks.

Gross.......Pain

2007-11-05T19:30:00.000-08:00

I don't know if it is the predisone, but I was not able to go to the restroom for like 5 days straight. It sucked. For five days my stomach was rock hard, and I felt really bloated. It was really weird because I didn't have a feeling that I had to go at any time. I finally had to resort to drastic measures! I used the thing that always works for me. I ate taco bell. It's like the only food that looks the same going in as it does going out. Gross I know. But sure enough. After I ate, I went. And went, and went, and went, and went. I couldn't believe that I was stuck on the toilet for almost an hour. I read stories online about people who have to go and go multiple times a day, so I guess I'm lucky. After that, I felt horrible, but I was relieved. I really hope I don't have to go through this all the time.

Prednisone and Insomnia

2007-11-01T22:24:00.000-07:00

Here I am. Still sitting up. I need to get up to go to work in around 4 hours. Because of the prednisone, I am not able to sleep. I know I need to, and I really want to, but I can't. Maybe if I sit here a longer and stare at the lcd I will start to fall asleep. We will see.

Crohns Community. Its like myspace!

2007-11-01T20:56:00.000-07:00

I am working on a myspace like community for all those who are suffering from Crohns, and Colitis, or no someone who is. I want to build it up. I would really like a place where tons can come to relate or talk about anything. Check it out. Go to http://crohns.me.com

Another Great Crohn's Resource

2007-10-31T21:39:00.000-07:00

I ran across another great site. It is the Crohn's Disease section of Healthtalk.com.
This site has crap loads of info related to crohns.

Happy Halloween.

2007-10-31T18:43:00.000-07:00

I hope everyone is enjoying their holiday. Be safe and don't eat too much!

Halloween Glitter Graphics @ HerEeos.com

Cool Crohn's Sites.

2007-10-31T18:25:00.000-07:00

Over the past couple of weeks I have been scouring the internet for info on Crohn's. Along the way I have come across some very informative sites. The best ones to me are the forums. There you are not only able to find tons of useful info, but you are able to talk and relate to people that are going through or that have gone through the same things. I have a list of some of my favorite site so far. I will try to add more as I continue the blog. When I do find more I will add on the side under "Really Good Crohn's Sites" If you all have any that I should check out, let me know. Thanks.

I really like the Crohns Disease Forums at www.crohnsforum.com.
That site has plenty of stories from people who have going through this for a long time.

Another good forum is Crohnshelp.com.

Can't go.

2007-10-30T21:37:00.000-07:00

I have been taking the Prednisone and Flagyl since friday. Since that time I have not been able to go to the bathroom. Of course I can urinate, I just haven't had to have a bowel movement. I'm not having any cramps, and I am not feeling any pain. I do feel that I should have gone to the restroom at least once in that time. I think that it may be constipation. Who knows. I have tried eating foods that normally make me have to go but no luck. I think I may give it a day or two more before I drink something like magnesium citrate. My biggest fear is that when I do go, I will have a lot of excruciating pain. Wow, how I hate crohns!

My not so quick Crohns story.

2007-10-30T00:30:00.000-07:00

Hey Everyone. I'm Rodney. I'm 23. I thought I might just write my whole story to share. Like said in the previous post, I was diagnosed with Crohns around the Middle of Sept 2007. I had been experiencing abdominal pain and pain when having bowel movements for around five months. At first the pain was barely noticeable, and I though the blood I was seeing was from me wiping too hard. I just kept telling myself forget it about, the pain will go away. It didn't. The pain when going to the restroom just kept getting worse and started to affect my job and life.

I finally went to the doctor at the end of July 07, and was told after an x-ray, and urine sample that I should have a colonoscopy. The doctor also prescribed belladonna for the cramps I was having. By now, I was in a huge amount of pain. I didn't want to eat because I didn't want to have to use the bathroom. I had dropped around 15 pounds because of this.

Around the middle of August, I was finally able to get in with the doctor to have the colonoscopy. Even though I was put under, I remember waking up and screaming to the doctor, "I can feel that, it hurts!" After the the procedure, the doctor told me he took a biopsy and that from what he could see it was not Crohns. I was freaked out because I had no clue what was going on.

After a week, the doctor's office called and let me know that they did not get the results, but that I should setup an appointment with a colorectal surgeon.

The day I went to the surgeon was very scary. My girlfriend and I go into the exam room and on the side waiting were gloves, lube and some sort of spreader tool! We were both like wtf are they going to do. I thought we were coming here to talk about options. When that doctor came we did talk for around three minutes, before had me lay on my side. He told me to grab my knee and pull them to my chest. Him examining me was the most painful thing I had ever felt. This actually made me tear up. After he was done, he told me that there was infection as well an abscess, and fissure. He was like, we can do surgery in two days! This caught me off guard, because I didn't expect this process to go so fast.

Two days later on Aug 31, I had the surgery to remove the infection, abscess, and fissure. They made incisions to let them drain, as well as took some samples from my colon. He told me that from what he could see, it was crohns and that I start treatment.

After going back to the other doctor to see about treatment, I was given Flagyl to help with any infection, but was told that we should wait before we start any treatment. I was still in a ton of pain, and had run out of the pain pills given to me after the surgery.

After a few more post op check ups, I went back to the treatment doctor to let him know that I am still hurting and having diarrhea. He scheduled a flex sig and I had done last Thursday. After that procedure, he prescribed me prednisone and is waiting for enzyme test to come back before seeing about 6MP.

That's my story. After reading the other stories, I feel what i'm going through is mild. I really don't suffer from the cramps anymore. I have diarrhea only around once every two days and have dropped around 40 pounds. I contribute a lot of the weight lost completely changing my diet. I also don't know if the pain I feel when having a bowel movement is from the surgical incisions or if there is pain when crohns patients going to bathroom. Thanks for reading.

Crohns, WTF!

2007-10-13T21:38:00.000-07:00

Its been about one month since the doctors told me I have Crohns. My first reaction was crohns, wtf is that. It's a disease that not too many people know much about. Through this blog, I want share some of my experiences and shed some light on this painful disease.