Tuesday, February 19, 2008

The purpose of this blog.....

I haven't shared this on my main blog as I just didn't find that was an appropriate arena to discuss this topic, and it isn't the purpose of my main blog.

The idea of creating a blog specific to IBD came to me just the other morning as I was still experiencing my very first flare up of Ulcerative Colitis.

I want this blog to be a journal as well as a forum for others to ask questions about IBD(Inflammatory Bowel Disease). I will attempt to provide as much information as possible and provide links to sites that I think will provide additional information.

My eldest sister has suffered from Crohn's disease for over 35 years. I was recently diagnosised with Ulcerative Colitis last August, I have a brother and another sister who suffer from Irritable bowel.

About the Disease:

Inflammatory blowel disease(IBD)is a term used to describe two similar, yet distinct conditions: Crohn's deisease and ulcerative colitis. IBD is also known by other names including: Crohn's disease and ulcerative colitis and pancolitis. These diseases affect the digestive system and cause the intestines to become inflamed, form sores(ulcers),bleed easily,scar and lose the normal smoothness of their innner lining. Symptoms of IBD include abdominal pain,cramping,fatigue,diarrhea,fever and joint pain.

No one know what causes IBD. It affects people regardless of race, gender or age. Although recent research is showing there might be a genetic link(hence so many in my family are affected),or they believe there may be an immunological response like an autoimmune disease.

IBD is unpredictable. Many people experience "flare-ups" (attacks)and then the disease seemingly goes away. The quiet periods are called "remission" and can vary in length from weeks to years. Most people will "relapse" and have multiple attacks. IBD symptoms may also vary in severity. Some people have mild symptoms and can be treated with a combination of drugs and nutritional therapy, while others experience debiliting symptoms and need to take potent drugs, visit hospital frequently, and/or have surgery.


My Story:

As I said at the beginning of this post I was diagnosised with Ulcerative Colitis in August 2007. I actually started getting symptoms last January 2007. After my colonoscopy in August, I was given a 6 week course treatment of Salofalk enemas. This meant self administering an enema every day for 6 weeks. This did eventually help ease my symptoms. But by the middle of October beginning of November my symptoms were coming back. The bloody mucosy stools, the constant cramping. Some days were more bearable than others. My magic bag became my best friend. The doctor had prescribed a drug called Apo Chlorax 5mg/2.5mg to be taken up to 4/day. There is a benzodiazipine in this drug which is to help relax you, and hence your bowel, it's great to for helping you sleep but it can be addicting and the less you have to use it the better. I tried to stay away from them. Two weeks ago the pain became the worst pain I have experienced since giving birth to my children. I mean at least with labour pain you know it will end eventually. Not so with IBD. You hope the pain will subside, in my case they pain got to a 9.5 out of a scale of 0-10. I was doubled over, all I wanted to do was rock and have my heating pad on me tummy. Hubby decided enough was enough. Off to emergency department we went. They took me in right away. The ER doctor saw me pretty quick. I had multiple view xrays of my abdomen to rule out a blockage. Upon my return I was given some narcotics. This in itself is a challenge for me as I am allergic to most narcotics. I was dehydrated. You see when you have flare ups the last thing you want to do is eat(Nutrition is something I want to cover in this blog)...you just want to rest your bowel and pray and hope that the pain goes away.

They started me on IV fluids, medications for the nausea,drugs to help decrease the acidity in my stomach and IV narcotics. I was then seen by a surgeon who started me on IV steroids(this helps decrease the inflammatory response), Asocal which is a medicaiton for colitis, and he started me back on the Salofalk enemas and admitted me to hospital. I spent two days in hospital. Once the steriods started to kick in the relief started to begin. I was discharged on oral steriods(prednisone)30mg once a day for 2 weeks, and was to continue with my enemas and to see him the following for another colonoscopy. At this point in time, I haven't eaten solid food for 4 days. The prep for the colonoscopy requires you to drink a medication that totally clears your bowel. There wasn't much in me, just clear fluids, but I did the prep. I was so dehydrated by the time it came to do the test, I also think my potassium was low due partially to the fact that my nutrional intact was poor and that prednisone depleats the body of much needed potassium(I will talk about signs and symptoms of decreased potassium in another post). I survived the colonoscopy and was told that I had ulcerative Proctitis(which is the lowest portion of the bowel)he took biopsies and I was told to stop the Asacol and to continue my prednisone and enemas and see him the following week.

So that is where I am at. I see the doctor on Friday hoping to get my results from my biopsies and a plan of attack.

I feel more confident this time that things will get taken care of. I felt like I got lost in the system. A lot about this disease is understanding the symptoms, and seeking medical attention as this won't go away by itself.

I will attempt to do post on Nutrional requirements, medications, current research and whatever anyone else would like to talk about or learn more about.

I dedicate this blog to all of you out there that suffer from IBD and that a cure may be found and that you know you are not alone and that with a few lifestyle changes one can lead a normal active life.

8 comments:

Skittles said...

I applaud your courage for being able to speak openly about this, Mary Anne!

Jeni said...

For about 18 months before I was diagnosed with colo-rectal cancer, I had symptoms very, very similar to some that you have described in your post. It can be quite excruciating to have cramps such as those - also really frightening too when there is blood in the stool as well. Fifteen months before the cancer diagnosis, I was diagnosed with diverticulitis after having an attack one Sunday morning that, as you said, had me absolutely doubled over. Great post; very, very informative.

Byrning Bunny said...

I agree that it's great you've begun this blog. My comment is about you not wanting to take the medication though. Sometimes you can have too much knowledge and get in your own way of healing. If those benzodiazipines calm you enough to ease your pain and also help you to sleep, what could be better for healing? Sleep is like magic for our bodies. I may be butting my nose in here, but I feel like I'm just passing on what was given to me. I used to (still) hate taking meds for the reasons you describe, but the doc (one of the good ones I finally found, who actually kept up on the literature) yelled at me (literally) that if I would just give them the chance to work in the beginning, I wouldn't need so much, and could prevent some of the horrible episodes of pain. My $.02 :)

Patricia said...

I popped over here to comment on your Photo Hunt post, but when I saw that you had this blog, too, I had to come here first. I have had crohn's disease for many years and had a hemicolectomy in 1983 from a perforated bowel. I'll have to come back and share more with you in the future....but know that I understand your pain. (((Hugs)))

Crystal said...

Destiny...

I came to check out your blog after you posted about being an Organ Donor on my Heads or Tails.

I have been having flare-ups of horrible sickness for such a long time. So many different symptoms. It has just been this past week that the symptoms were put together. It's now thought that I too have IBD. I go in for my first colonoscopy in a few weeks.

While I dread a positive result, at least it will mean I can work toward a treatment instead of JUST suffering.

Thank you for all the wonderful information!

vivi said...

Hi-

I hope you are feeling better.

I was wondering why your doc stopped the asacol? Was this because it would not help your proctitis (as it is at end if the GI tract) ??

In the UK docs prescribe PENTASA suppositories for proctitis- they are very successful as they can be absorbed at the source. Perhaps you could check with your doc about these.

All the best.

Smalltown RN said...

Vivi...I tried to contact you but have been unable to...

You are right the Asacol was stopped because it is not considered effective for Proctitis...I am on Salofak supps. which are very similar to Pentasa....my sister has been on Pentsa for many years for her Chron's and found it to be extremely helpful....Thanks for your comments

zubair said...

Up to 16 Student Research Fellowship Awards per year at $2,500 each will be available for full-time research with a mentor investigating a subject relevant to inflammatory bowel disease. The duration of the project is a minimum of ten weeks. Awards are made payable to the institution (not the individual) where the research will be conducted. No indirect costs are allowed. A complete financial statement and scientific progress report are due September 1, the completion date of the project. All publications arising from work funded by this project must acknowledge support of the Crohn's & Colitis Foundation of America Student Research Fellowship Award.

======================
JOSE
Find the latest news about Colon Cancer, Irritable Bowel Syndrome and Colitis. Discuss Colon related issues with members of the Colon Health Community.


Colon Cancer News & Discussion Forum