Because of those nasty, pesky, annoying and painful abscesses, my Remicade was switched to every 6 weeks from the 8 weeks I was originally on.
I wore my new T shirt, which is now my "infusion shirt", which states.. "F*#K Crohn's...it's the shits"
Not enjoying the painful muscles and joints, but hey! at least the Crohn's is at bey for now.......
Wednesday, March 20, 2013
Thursday, March 14, 2013
Crohn's and Food
I get asked alot about what can I eat?
It's a great question I wish I had an answer for. The easy answer is.....I can eat anything I want.
But.........
Then you have to ask yourself, "how much do I want to pay for it afterwards?"
After over 20 years of trial and error I can sum up what I need to avoid. Some of these items cause me discomfort, while others can end me up in the hospital.
My top 10....
10. Lettuce
9. Milk (but I have no problem with yogurt so I can't put 'dairy')
8. Fried foods
7. Alcohol
6. Any fruit that has a skin (I peel almost everything)
5. Raw vegetables
4. Chocolate (I know, sad really)
3. Coffee, Tea, Juices (but brewed coffee seems OK...weird)
2. Popcorn
1. Nuts and Seeds
1, 2 and 5 have ended me up in hospital with bowel obstructions. Raw carrots are a definite no no!
What it boils down to....there is no cure, no cause....you live with it and deal with the situations, no matter how bad it can get, the best you can.
There is no easy answer to the question about what a Crohn's patient can eat, it's highly individual
In the beginning, I kept a journal and kept track of what I ate and the reactions I had. BUT, even that is deceiving because it depends on whether or not you're having a flare at the time. Sometimes you can eat something one day, and then can't handle it the next.
Trial and error my friends......trial and error.
It's a great question I wish I had an answer for. The easy answer is.....I can eat anything I want.
But.........
Then you have to ask yourself, "how much do I want to pay for it afterwards?"
After over 20 years of trial and error I can sum up what I need to avoid. Some of these items cause me discomfort, while others can end me up in the hospital.
My top 10....
10. Lettuce
9. Milk (but I have no problem with yogurt so I can't put 'dairy')
8. Fried foods
7. Alcohol
6. Any fruit that has a skin (I peel almost everything)
5. Raw vegetables
4. Chocolate (I know, sad really)
3. Coffee, Tea, Juices (but brewed coffee seems OK...weird)
2. Popcorn
1. Nuts and Seeds
1, 2 and 5 have ended me up in hospital with bowel obstructions. Raw carrots are a definite no no!
What it boils down to....there is no cure, no cause....you live with it and deal with the situations, no matter how bad it can get, the best you can.
There is no easy answer to the question about what a Crohn's patient can eat, it's highly individual
In the beginning, I kept a journal and kept track of what I ate and the reactions I had. BUT, even that is deceiving because it depends on whether or not you're having a flare at the time. Sometimes you can eat something one day, and then can't handle it the next.
Trial and error my friends......trial and error.
Wednesday, March 6, 2013
Saturday, March 2, 2013
Crohn's History Spreadsheet
I've mentioned over the years that I have a spreadsheet I take with me to hospital when I go and recently I've had a few people ask me what I have on it.....so I'm going to tell you.
Basically, I've taken what the doctors and nurses ask me while in Emergency (several times) and some of the questions, I just can't remember the answers. Either from just not remembering or I'm in too much pain and/or discomfort to answer.
So, at the top I have the title of "Crohn's History" and below that I have the date of my diagnosis.
Then, below that (from left to right) I have each and every visit to hospital, starting with the date, why I was in, if I was admitted, and the hospital.
Here's an example......(it's much neater than this, just didnt convert nicely to the blog)
Then below that, I have two small charts listing my doctors and meds.
Now, obviously, you have to remember to update it as your meds change or if you go to hospital. I always update, print and put it by my front door and a copy in my hospital bag. It came in handy once when I was home alone and had to call an ambulance (bowel obstruction) as they always want to know what meds your on and as I was in so much pain (not to mention throwing up every couple of minutes), I had the spreadsheet ready by the front door.
The above chart is just an example. I've entered some of my information, but my sheet is too long to show here, but those first few years are my actual incidents and those are my meds currently.
I have found over the years that this sheet comes in handy. You might never use it and even I don't use it all the time, but its there if you do
You can never have too much information...
PS....I got the more detailed information directly from my medical records I get after every prolonged stay in hospital
Basically, I've taken what the doctors and nurses ask me while in Emergency (several times) and some of the questions, I just can't remember the answers. Either from just not remembering or I'm in too much pain and/or discomfort to answer.
So, at the top I have the title of "Crohn's History" and below that I have the date of my diagnosis.
Then, below that (from left to right) I have each and every visit to hospital, starting with the date, why I was in, if I was admitted, and the hospital.
Here's an example......(it's much neater than this, just didnt convert nicely to the blog)
| Crohn's History | |||||||||
| June 1, 1988 | Diagnosis | Hospital | |||||||
| June 2-9, 1989 | Right Hemicolectomy (bowel resection) | admission | Surrey | ||||||
| June 22-30, 1989 | Intra-Abdominal abscess (laparotomy, incision, drainage) | admission | Surrey | ||||||
| August 29, 1990 | Perianal abscess (incision, drainage) | emerg. | Surrey | ||||||
| Sept 26-29, 1991 | Fever & anemia | admission | Surrey | ||||||
| Sept 19-22,1992 | Abdominal abscess (laparotomy, incision, drainage) | admission | Surrey | ||||||
| Nov 12-22, 1992 | Resection of neo-terminal Ileum, transverse & descending colon | admission | Surrey | ||||||
| Oct 11-12, 1993 | Renal colic | emerg. | Surrey | ||||||
| December 6, 1993 | Perianal abscess (incision, drainage, insertion of seton) | admission | Surrey | ||||||
| Jan 16-19,1994 | Renal colic (cystoscopy, pyelogram & manipulation) | admission | Surrey | ||||||
| April 13, 1995 | Renal colic | emerg. | Surrey | ||||||
Then below that, I have two small charts listing my doctors and meds.
| Dr. #1 | General | phone number | |||||
| Dr. #2 | Gastroenterologist | phone number | |||||
| Dr. #3 | Surgeon | phone number | |||||
| Immuran | 150mg / day | since Nov. 2011 | |||||
| Remicade | 400mg infusion | since July 2012 | |||||
| Zopiclone | 7.5 mg half a pill as needed at bedtime | ||||||
| Tylenol #3 | as needed | ||||||
The above chart is just an example. I've entered some of my information, but my sheet is too long to show here, but those first few years are my actual incidents and those are my meds currently.
I have found over the years that this sheet comes in handy. You might never use it and even I don't use it all the time, but its there if you do
You can never have too much information...
PS....I got the more detailed information directly from my medical records I get after every prolonged stay in hospital
Thursday, February 28, 2013
What Is Crohn's Disease?
Currently, no one know what causes a person to have Crohn's, but.......
Crohn’s disease may affect as many as 700,000 Americans. Men and Women are equally likely to be affected, and while the disease can occur at any age, Crohn's is more prevalent among adolescents and young adults between the ages of 15 and 35.
The causes of Crohn’s Disease are not well understood. Diet and stress may aggravate Crohn’s Disease, but they do not cause the disease on their own. Recent research suggests hereditary, genetics, and/or environmental factors contribute to the development of Crohn’s Disease.
The GI tract normally contains harmless bacteria, many of which aid in digestion. The immune system usually attacks and kills foreign invaders, such as bacteria, viruses, fungi, and other microorganisms. Under normal circumstances, the harmless bacteria in the intestines are protected from such an attack. In people with IBD, these bacteria are mistaken for harmful invaders and the immune system mounts a response. Cells travel out of the blood to the intestines and produce inflammation (a normal immune system response). However, the inflammation does not subside, leading to chronic inflammation, ulceration, thickening of the intestinal wall, and eventually causing patient symptoms.
Crohn’s tends to run in families, so if you or a close relative have the disease, your family members have a significantly increased chance of developing Crohn’s. Studies have shown that 5% to 20% of affected individuals have a first – degree relative (parents, child, or sibling) with one of the diseases. The risk is greater with Crohn’s disease than ulcerative colitis. The risk is also substantially higher when both parents have IBD. The disease is most common among people of eastern European backgrounds, including Jews of European descent. In recent years, an increasing number of cases have been reported among African American populations.
The environment in which you live also appears to play a role. Crohn’s is more common in developed countries rather than undeveloped countries, in urban rather than rural areas, and in northern rather than southern climates.
-CCFA
Crohn’s disease may affect as many as 700,000 Americans. Men and Women are equally likely to be affected, and while the disease can occur at any age, Crohn's is more prevalent among adolescents and young adults between the ages of 15 and 35.
The causes of Crohn’s Disease are not well understood. Diet and stress may aggravate Crohn’s Disease, but they do not cause the disease on their own. Recent research suggests hereditary, genetics, and/or environmental factors contribute to the development of Crohn’s Disease.
The GI tract normally contains harmless bacteria, many of which aid in digestion. The immune system usually attacks and kills foreign invaders, such as bacteria, viruses, fungi, and other microorganisms. Under normal circumstances, the harmless bacteria in the intestines are protected from such an attack. In people with IBD, these bacteria are mistaken for harmful invaders and the immune system mounts a response. Cells travel out of the blood to the intestines and produce inflammation (a normal immune system response). However, the inflammation does not subside, leading to chronic inflammation, ulceration, thickening of the intestinal wall, and eventually causing patient symptoms.
Crohn’s tends to run in families, so if you or a close relative have the disease, your family members have a significantly increased chance of developing Crohn’s. Studies have shown that 5% to 20% of affected individuals have a first – degree relative (parents, child, or sibling) with one of the diseases. The risk is greater with Crohn’s disease than ulcerative colitis. The risk is also substantially higher when both parents have IBD. The disease is most common among people of eastern European backgrounds, including Jews of European descent. In recent years, an increasing number of cases have been reported among African American populations.
The environment in which you live also appears to play a role. Crohn’s is more common in developed countries rather than undeveloped countries, in urban rather than rural areas, and in northern rather than southern climates.
-CCFA
Monday, February 25, 2013
Great YouTube Video
Ten things not to say to someone with a chronic illness.....gotta see it
http://youtu.be/djCYvgSDbU0
Nicely done!
http://youtu.be/djCYvgSDbU0
Nicely done!
Saturday, February 23, 2013
52 Different Ways!?......Really??
Has anyone else seen this book?!
And here I thought there was only one way to do it.....
And here I thought there was only one way to do it.....
Thursday, February 21, 2013
Sunday, February 17, 2013
Crohn's Symptoms
Since CD can be located anywhere in the GI tract, symptoms can vary. On the whole however, they often include abdominal pain, cramping, diarrhea, nausea, vomiting and not surprisingly, weight loss and lack of energy.
Crohn’s disease is a chronic (lifelong) illness. People who have CD will experience periods of acute flare-ups, when their symptoms are active and other times when their symptoms go into remission. The average risk of a flare-up in any one year is approximately 30%.
In 25% of those with CD, perianal disease may also develop. “Peri” means “around” – therefore perianal disease is located “around the anus”.
Specifically this means that a person could develop:
-CCFC
Crohn’s disease is a chronic (lifelong) illness. People who have CD will experience periods of acute flare-ups, when their symptoms are active and other times when their symptoms go into remission. The average risk of a flare-up in any one year is approximately 30%.
In 25% of those with CD, perianal disease may also develop. “Peri” means “around” – therefore perianal disease is located “around the anus”.
Specifically this means that a person could develop:
- painful, swollen skin tags (that appear to be haemhorrhoids but are not)
- abscesses (bags of pus created inside the body as a result of infection)
- fistulas (infections that have tunneled from the abscess to a hollow organ such as the rectum or vagina)
-CCFC
Wednesday, February 13, 2013
Crohn's Facts
Did you know...
Crohn’s disease (CD) is named after the doctor who first described it in 1932. (Since he did not have the disease itself, it is sometimes more accurately called Crohn disease).
The inflammation from CD can strike anywhere in the gastrointestinal (GI) tract, from mouth to anus, but is usually located in the lower part of the small bowel and the upper end of the colon (like me!!)Patches of inflammation are interspersed between healthy portions of the gut, and can penetrate the intestinal layers from inner to outer lining.
CD can also affect the mesentery, which is the network of tissue that holds the small bowel to the abdomen and contains the main intestinal blood vessels and lymph glands.
-CCFC
Crohn’s disease (CD) is named after the doctor who first described it in 1932. (Since he did not have the disease itself, it is sometimes more accurately called Crohn disease).
The inflammation from CD can strike anywhere in the gastrointestinal (GI) tract, from mouth to anus, but is usually located in the lower part of the small bowel and the upper end of the colon (like me!!)Patches of inflammation are interspersed between healthy portions of the gut, and can penetrate the intestinal layers from inner to outer lining.
CD can also affect the mesentery, which is the network of tissue that holds the small bowel to the abdomen and contains the main intestinal blood vessels and lymph glands.
-CCFC
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