Posts filed under ‘ABC Series’
Talking About the Hard Stuff
Today’s post is going to be pretty heavy- I am exploring some of the hard stuff (no not alcohol) that we IBD patients and advocates don’t like to talk about.
Most days, I don’t think about how serious Crohn’s disease and ulcerative colitis can be. I see my husband who, after a few rough years, is living a relatively normal life with little pain. Yes, he still frequents the bathroom and yes he still has cramping but compared to previously, his life has changed for the better.
That’s not the case for many people. This past year has been a rough one for several of my IBD friends. In July, one had her temporary ileostomy made permanent after spending a month in the hospital with uncontrollable inflammation and being under the impression that it was going to be reversed. Another had the last several inches of her colon removed two days after doing a half-marathon and has been struggling with issues at her surgery site. A third has been in and out of the hospital over the past few months with partial blockages.
If you live with a mild to moderate form of IBD, you often aren’t faced with the severity of the disease – in some cases, it can be fatal. This morning, I woke up to find out that a member of one of the IBD Facebook groups I belong to passed away due to complications of her disease. I don’t know the full details of her death but I was told that she had a stricture and trouble breathing, called 9-1-1, and by the time the ambulance arrived, she had passed away. She leaves behind two small children and her husband.
Prior to her death, the only one I had heard of was Jennifer Jaff, who passed away in 2012 from Crohn’s disease complications.
More often than not, IBD patients experience complications from their disease. If not detected and treated early, some of these complications can be extremely harmful and in rare instances, cause death.
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Clearing the Air About Crohn’s & UC
There’s been a lot of confusion recently inside and outside of the IBD community on the differences between Crohn’s disease, ulcerative colitis and colitis and whether or not you can have both diseases or not. Because of all the confusion, I asked Dan’s gastroenterologist, the amazing Dr. Deborah Proctor, medical director for the Yale Inflammatory Bowel Disease Program, some basic questions to get some clarification.
What are the main differences between Crohn’s disease and ulcerative colitis?
Crohn’s disease is one of the major types of inflammatory bowel disease. Crohn’s can affect any part of the gastrointestinal tract from mouth to anus.
Ulcerative colitis is another major type of inflammatory bowel disease. Within the gastrointestinal tract, ulcerative colitis affects from the rectum up to the colon (the large intestine).
What is Crohn’s Colitis?
It is a type of Crohn’s disease that affects the colon only. Symptoms include diarrhea, rectal bleeding, and disease around the anus (abscess, fistulas, ulcers). Skin lesions and joint pains are more common in this form of Crohn’s than in others. Crohn’s Colitis does not mean you have both Crohn’s disease and ulcerative colitis.
Can you have both Crohn’s & UC?
No. You either have Crohn’s disease or ulcerative colitis, but not both.
Can your diagnosis change over time?
Yes. Some people are diagnosed with one disease and the diagnosis is changed later in life (my friends like to call this being upgraded). Ulcerative colitis can change to Crohn’s disease; however, Crohn’s disease CANNOT become ulcerative colitis.
Ulcerative colitis is a diagnosis of exclusion- there are no fistulas and it only involves the colon. Once a patient has a fistula, the diagnosis becomes Crohn’s disease.
What is colitis?
Colitis is a generic term for inflammation in the colon. It is often used to describe an inflammation of the large intestine- colon, cecum and rectum. Colitis may be acute and self-limited or chronic. It broadly fits into the category of digestive diseases.
Crohn’s disease and ulcerative colitis are considered types of colitis; however colitis alone is NOT an inflammatory bowel disease.
Are there any other types of inflammatory bowel disease?
Indeterminate colitis- this is a diagnosis given when a doctor cannot tell which type of inflammatory bowel disease the patient has. There is an overlap in some symptoms and sometimes only time will tell which disease the patient has.
How should you refer to inflammatory bowel diseases then?
You can say Crohn’s disease & ulcerative colitis or, alternatively, inflammatory bowel diseases. In theory, you can say Crohn’s disease and inflammatory bowel disease, but in my mind, since Crohn’s is a form of IBD, that seems exclusionary and also redundant. To say Crohn’s disease and colitis is inaccurate. The easiest thing to do is, when talking about both diseases, to say inflammatory bowel diseases and call it a day.
Final Installment of the ABC’s of Crohn’s & UC: “T,” “U,” “V,” “X,” & “Z”
It’s hard to believe that we’ve come to the end of the alphabet and thus the end of my ABC’s of Crohn’s & UC series. After this post, I will compiled all of the previous ones into a page on the blog so you can easily access this glossary I’ve compiled about IBD. Additionally, if I’ve missed anything important for any letter, please let me know!!! I would love to keep adding to this list and eventually turn it into something to help explain these diseases to those who are unfamiliar.
That being said, here is the final installment: T, U, V, X & Z.
The ABC’s of Crohn’s & UC: “R” & “S”
I can’t believe we are almost at the end of the alphabet! There will be one or two more posts after this one and then my glossary of Crohn’s & Ulcerative Colitis will be completed. But before we get to that point, we have a few more letters to get through.
Tonight, we tackle R & S.
The ABC’s of Crohn’s & UC: “O” & “P”
We are over halfway done with the ABC’s of Crohn’s and Colitis series! I hope it’s been informative thus far for those who have been following along.
Next up in the ABC’s of Crohn’s and Colitis series: O and P.
The ABC’s of Crohn’s & UC: “M” & “N”
I may be posting intermittently from now until the end of the year with the influx of relatives that will be visiting and staying with us. However, I wanted to get one more ABC post in while I still had the time. So without further ado, next up in the ABC’s of Crohn’s and UC- “M” and “N.”
The ABC’s of Crohn’s & UC: “L”
My heart is still heavy from the Newtown shooting in my home state but I wanted to go back to the real reason why I blog: to educate people and raise awareness about Crohn’s and Ulcerative Colitis.
Tonight’s post is the next installment in the ABC’s of Crohn’s and UC series- the letter L.
The ABC’s of Crohn’s & UC: “J” & “K”
It’s been a few weeks since I did an installation in my ABC’s of Crohn’s & UC series. With other topics arising and Crohn’s & Colitis Awareness Week occurring, it’s fallen off my radar. So here is the next installation, and it will be a short one: J and K.
Jejunoileitis: One of the types of Crohn’s Disease. Jejunoileitis affects the jejunum (see below). Symptoms include cramps after meals, fistulas, diarrhea, and abdominal pain. Kind of sounds like all the other types of Crohn’s.
Jejunum: The upper half of the small intestines.
J-Pouch: One name for an ileo-anal pouch. The J-Pouch is an internal reservoir where the rectum would be. A J-Pouch is traditionally done through a multi-part surgery. The first surgery involves the removal of the large intestines and rectum and the fashioning of the pouch. At the end of the first surgery, the patient is given a temporary ileostomy in order to give the pouch time to heal. After a period of time (typically 6-12 weeks), a second surgery is performed known as the “take down” in which the ileostomy is reversed.
Kidney Stones: One of the most common kidney complications in Crohn’s patients. According to CCFA, kidney stones are common in patients who has Crohn’s in the small intestines because of fat malabsorption. You are at a higher risk for kidney stones if you’ve had a number of bowel resections because you are more prone to dehydration. Symptoms of kidney stones include sharp pain (particularly in your lower back), nausea, vomiting, and blood in the urine. Treatment calls for an increased fluid intake and a diet that is rich in juices and vegetables. If you are unable to pass the kidney stones on your own, you may have to have them removed which is through a simple procedure.
Kock Pouch: A Kock Pouch is an internal pouch formed by the terminal ileum after a colectomy. The pouch has a large volume so that feces can be stored temporarily without the need for a stoma bag. A Kock Pouch may be created if the patient cannot have an ileo-anal pouch or who develop incontinence after an ileo-anal pouch.
The ABC’s of Crohn’s & UC: “I”
Next up in the alphabet series is the letter I. I never thought I’d be saying that when 20 years ago I would run out of the room when the letter I came on during Sesame Street. But I digress.
There are a lot of really important I’s, so read up!
The ABC’s of Crohn’s Disease & UC: “G” & “H”
In my next ABC’s of Crohn’s Disease and Ulcerative Colitis, I explore the G’s and H’s of the diseases. I found that there aren’t that many of either but enough to make it worthwhile to combine the two into one entry.
There are some obvious ones and some not so obvious ones but overall, a lot of important terms that start with G and H.
So without further ado, I present to you the G’s and H’s of Crohn’s and UC.
Caring for Crohn's & UC 