Are we close to a cure?

Thanks to a very special friend I just came across the new "iPill", powered by Philip's, the pill targets development and treatment for Digestive Tract Diseases such as Crohn's Disease, which is what I've had since August of 1999 (diagnosed August 13th, 2 days before my sweet 16th). You can read another article on this $1000 pill, HERE.


I know I haven't been updating on my condition with this, alot of my readers I'm sure didn't or don't even know I have Crohn's Disease. Most of my issues are with my sigmoid colon...




I have been in what we call a "flare-up" for the past 4 months, its been a daily battle to do anything, and keep in mind I have 2 lil' ones living at home, Gabriel almost 2 years old and Helana 5 months old.

Why for the past 4 months? Well I got the run-around on getting a new "GI" Doctor, actually getting an actual appointment, and then once seen I was sent off to Radiology at our hospital for civilians with Navy insurance (Tri-Care). The soonest radiology appointment I could get was a month away, talk about urgent health care... Unfortunately one of the cons of having military insurance is that when your in an area such as I am (Hampton Roads, Virginia) and we have millions of active duty military and their dependants you kind of get put on the back burner for anything urgently needed medical wise.

The initial visit with my "civilian" GI was in December, right before Christmas, I was hopeful to be seen soo soon since I was having a lot of pain and rapid weight loss... I went from having Helana sitting at 115 to about 80 lbs within a week and I was praying I wouldn't drop below the measly 80 lbs.. I lost hips, butt, breasts, nothing was fitting correctly and I was slipping into a state of constant unhappiness and depression.

I finally had my SBFT (Small Bowel Follow Thru) on January 23rd with Radiology... Drank the nasty white chalky barium drink as quickly as I could, so it could run its course through my small bowel. In just a skimpy gown and a hard metal table, in a freezing room, I layed on my back, side, and stomach so these pictures could reveal what the real issue was, cause believe me there was definately something wrong.

After those few x-rays they did one new to me, a sort of ultrasound I could actually see what they saw, even though I had no idea really what I was looking at.. but when the Radiologist said yep... ummm... here's your problem I was praying it wasn't too serious, you know at least treatable.. no surgery.. already had a 6 inch small bowel resection in January 2000, you don't want to keep cutting small intestine...

He said it was a small portion (hope), about 5-6 cm... but it was definately thinning, there was a lot of mucousa, and it was inflammed highly.. nothing meds couldn't fix. I thanked GOD and almost cried but held that in...

Now remember the 1st initial visit with my GI.. well he had prescribed "3" medications... I started these right after Christmas for a few days and then abruptly stopped them without calling my Doctor.. bad idea... and I know thoughtless but I didn't know at the time if the meds were causing me to be worse or if it was diet/stress... I took the pills and couldn't even get out of bed.. I felt like the walking dead... I didn't want to eat, I was constantly fatigued, nauseated, smells were stronger, food tasted weird, and more constant trips to the restroom...

The "3" meds are :

Prednisone
Prednisone is a synthetic corticosteroid drug that is usually taken orally but can be delivered by intramuscular injection and can be used for a number of different conditions. It has a mainly glucocorticoid effect. Prednisone is a prodrug that is converted by the liver into prednisolone, which is the active drug and also a steroid.


Pentasa
Mesalazine (INN, BAN), also known as Mesalamine (USAN) or 5-aminosalicylic acid (5-ASA), is an anti-inflammatory drug used to treat inflammation of the digestive tract ulcerative colitis and mild to moderate Crohn's disease. Mesalazine is a bowel-specific aminosalicylate drug that is metabolized in the gut and has its predominant actions there, thereby having fewer systemic side effects.

As a derivative of salicylic acid, 5-ASA is also an antioxidant that traps free radicals, which are potentially damaging by-products of metabolism.

5-ASA is considered the active moiety of sulfasalazine, which is metabolized to it.

Mercaptopurine aka 6MP
It is used to treat leukemia. It is also used for pediatric non-Hodgkin's lymphoma,[citation needed] polycythemia vera,[citation needed] psoriatic arthritis,[citation needed] and inflammatory bowel disease (such as Crohn's Disease and ulcerative colitis).[2]

It has demonstrated some in vitro effectiveness against Mycobacterium paratuberculosis.[3]

I did take a trip to the ER since I had ongoing fevers , the highest was 105, I rushed myself to the ER... unfortunatly the ER was soo packed, the nurse gave me Tylenol and told me to keep waiting, alot of accidents that night and I know they can't just stop everything and check everyone.. believe me I waited 4 hrs.. my fever started to break in the waiting room and I just left...

Made a follow-up appointment with my Primary Doctor (family doctor), he was familiar with Crohn's Disease, thought the fevers were associated with a bacterial infection so he prescribed Flagyl an antiobiotic used for Crohn's among other things. I started taking this and started to feel a bit better, but the fevers lasted over a week, I kept them at bay with Tylenol...

I saw my GI for my 2nd and unfortunately last visit since I'll have a new GI in Rhode Island or Boston, MA if that is what it takes to have a good GI.

He asked me to please take the medications again, this time for a week to take just the Prednisone and the Mercaptopurine, then next week I add in Pentasa, since the Pentasa could have been causing me to feel a bit worse the first time I attempted to take all "3" medications at once. I also found out it takes 2-3 month for Pentasa to get the full effect in my intestines... So for now I'm on day 2 of taking the pills.. soo far I feel a bit better.. I still have bouts of pain where I want to just curl in a ball... and the runs to the bathroom aren't as frequent but they are nowhere "normal"... Hey it is a very, pardon my french "sh!tty" disease...

My biggest worries almost everywhere I go is if there is a restroom, its location, and its condition... because when you got to go.. there is no waiting you've got to go... I do have to maintain a good diet.. there are probably some foods I should avoid but I do try my best to eat healthy and safe. I try not to stress... but I just don't believe at times that is possible... especially with young children, they constantly need me, as any child would need their Mother and I want to be there for them as much as I can. I won't let anything get in the way of that.

My GI happily made me copies of what he had recorded, which I was amazed at.. most Doctor's don't ever want to give copies of anything.. he said he grew up in Rhode Island and that I shouldn't have a problem finding a good GI in Rhode Island or Mass.. I'm willing to drive, this is my health, this is my life and as he told me, we can treat the symptoms but I'll this "forever" until they find a cure!

Read more about Crohn's Disease by clicking HERE.

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Smiles,

~Kristinia/Loving Heart Mommy~