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

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

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.

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

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

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

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

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"

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:

1. The customer requesting the use of the employee toilet facility suffers from an eligible medical condition or utilizes an ostomy device.
2. Three or more employees of the retail establishment are working at the time the customer requests use of the employee toilet facility.
3. The retail establishment does not normally make a restroom available to the public.
4. 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.
5. 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.

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

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.