Well, here's a place where you can search anywhere in your travel to check on restrooms, and get a coupon off!
How fab is that? http://www.imodium.com/page.jhtml?id...nclude/3_5.inc
Wednesday, July 23, 2008
Thursday, July 10, 2008
Pouchitis, Diarrhea and healing
It can be frustrating to find methods to control chronic pouchitis and diarrhea. There is alot of information in the forums (i.e. http://j-pouch.org/eve/forums; http://www.ostomates.org/forum/forumdisplay.php?f=7 and http://www.uoaa.org/forum/index.php) that has terrific "real life" help and information.
I have always used probiotics and L Glutamine (info: http://www.vitalnutrients.net/hq_handouts2.asp?VitaminName=Glutamine) and it has helped.
Your doctor may only recommend prescription medication, but there are natural remedies that have been tried and true for alot of sufferers.
I have always used probiotics and L Glutamine (info: http://www.vitalnutrients.net/hq_handouts2.asp?VitaminName=Glutamine) and it has helped.
Your doctor may only recommend prescription medication, but there are natural remedies that have been tried and true for alot of sufferers.
Tuesday, July 1, 2008
Beach, parks, bathrooms, bathing suits, swimming, oh my!
Well, it's officially summer. Fun it is at the beach and parks. While this generally brings a gleam of happiness and smiles, for ostomates, it's all about "where are the bathrooms". It's a major distraction. Are there any? Will they have doors? Can I get to them?
And, not to mention the bathing suit delimna and swimming. It's not a surprise that most of us feel self-concious in a bathing suit. Add an ostomy to that and it's a source of anxiety. Who will see it? Will they stare? Will it leak?
You'll soon learn that you can still go and have fun, you may just need to adjust your diet on those days. Everyone feels uncomfortable in a bathing suit unless you look like a fashion model so get over it and have fun!
Bring a suit cover up and change of clothes if you stay into the evening so you have a back up. And, it's okay to use zip lock bags and rough it in the bathrooms until you get home.
Try to relax and enjoy!
And, not to mention the bathing suit delimna and swimming. It's not a surprise that most of us feel self-concious in a bathing suit. Add an ostomy to that and it's a source of anxiety. Who will see it? Will they stare? Will it leak?
You'll soon learn that you can still go and have fun, you may just need to adjust your diet on those days. Everyone feels uncomfortable in a bathing suit unless you look like a fashion model so get over it and have fun!
Bring a suit cover up and change of clothes if you stay into the evening so you have a back up. And, it's okay to use zip lock bags and rough it in the bathrooms until you get home.
Try to relax and enjoy!
Friday, June 20, 2008
What I Know For Sure
I know for sure that there is still not alot of information on UC and what works best for the majority. It's all over the map.
I know for sure is that just because you may look good on the outside doesn't mean you are not disabled on the inside.
I know for sure that changing your diet doesn't always work.
I know for sure that the drugs do not always provide a remission and generally give you side effects that may be worse then the UC.
I know for sure that you are not alone and you can reach out to the over 1.5 million US sufferers of IBD are among us.
I know for sure is that just because you may look good on the outside doesn't mean you are not disabled on the inside.
I know for sure that changing your diet doesn't always work.
I know for sure that the drugs do not always provide a remission and generally give you side effects that may be worse then the UC.
I know for sure that you are not alone and you can reach out to the over 1.5 million US sufferers of IBD are among us.
Monday, June 9, 2008
Sodium and Potassium loss
It's important to replinish your sodium and potassium levels daily. The new G2 (gatorade) now has less sugar and is delicious. Too much sugar will aggravate you if you are experiencing diarrhea. Baby electrolyte formulas work very well and they even come as popsicles! Water is terrific, but can actually dehydrate you unless you add some minerals.
You can also use a bit of natural Sea Salt - sold almost everywhere now as a natural mineral replacement (although there isn't enough potassium per serving). Sprinkle on food, or on your tongue directly. Even if you have high blood pressure, your sodium and potassium balance is crucial - be sure to work closely with your doctor to not aggravate either conditions.
You can also use a bit of natural Sea Salt - sold almost everywhere now as a natural mineral replacement (although there isn't enough potassium per serving). Sprinkle on food, or on your tongue directly. Even if you have high blood pressure, your sodium and potassium balance is crucial - be sure to work closely with your doctor to not aggravate either conditions.
Friday, June 6, 2008
Treatment Options
It is important to research and communicate with your doctor, what treatment(s) - both short and long term is best suited for you, your lifestyle and personal beliefs.
Drug Therapy
Anti-inflammatory drugs are usually the first step in the treatment of ulcerative colitis (i.e. such as mesalamine) to control inflammation and induce remission. Corticosteroids (i.e. prednisone)are very effective but have significant side effects, such as increased susceptibility to infection, mood swings, anxiety, depression, elevated blood pressure, glaucoma, cataracts and osteoporosis.
Immune system suppressors
Drugs that suppress the immune system treat ulcerative colitis by blocking inflammation (i.e. Purinethol and Imuran). Side effects may include nausea, vomiting, liver problems or pancreatitis.
Other drugs (i.e. such as Remicade) was approved for use in ulcerative colitis by the FDA.
Surgery
Surgery is often the last resort if medication, dietary and other treatments are not reducing symptoms or if the patient has had UC for a long time, there is a higher risk of developing cancer.
Both conventional open surgery and minimally invasive (laparoscopic) surgeries are performed. Ileal-anal pouch surgery is most common: this procedure removes the entire colon and rectum The surgeon constructs a pouch from the end of the small intestine and attaches it to the anus which does not require an external bag to collect waste. Older procedures such as the Kock Pouch are still performed when the rectum/anus have been removed. This involves using a catheter to empty the internal pouch inserted from a small stoma (opening on lower part of the stomach). There have been complications with the nipple valve from slippage requiring additional revisions.
Proctocolectomy
This surgery also involves removing the colon and rectum. An opening (end-ileostomy) is created on the outside of the patient's body in the lower abdomen and requires a small bag over the opening to collect waste. Many patients have this surgery performed 1st, then a later surgery revision to a continent ileostomy (i.e.Kock pouch.)
Drug Therapy
Anti-inflammatory drugs are usually the first step in the treatment of ulcerative colitis (i.e. such as mesalamine) to control inflammation and induce remission. Corticosteroids (i.e. prednisone)are very effective but have significant side effects, such as increased susceptibility to infection, mood swings, anxiety, depression, elevated blood pressure, glaucoma, cataracts and osteoporosis.
Immune system suppressors
Drugs that suppress the immune system treat ulcerative colitis by blocking inflammation (i.e. Purinethol and Imuran). Side effects may include nausea, vomiting, liver problems or pancreatitis.
Other drugs (i.e. such as Remicade) was approved for use in ulcerative colitis by the FDA.
Surgery
Surgery is often the last resort if medication, dietary and other treatments are not reducing symptoms or if the patient has had UC for a long time, there is a higher risk of developing cancer.
Both conventional open surgery and minimally invasive (laparoscopic) surgeries are performed. Ileal-anal pouch surgery is most common: this procedure removes the entire colon and rectum The surgeon constructs a pouch from the end of the small intestine and attaches it to the anus which does not require an external bag to collect waste. Older procedures such as the Kock Pouch are still performed when the rectum/anus have been removed. This involves using a catheter to empty the internal pouch inserted from a small stoma (opening on lower part of the stomach). There have been complications with the nipple valve from slippage requiring additional revisions.
Proctocolectomy
This surgery also involves removing the colon and rectum. An opening (end-ileostomy) is created on the outside of the patient's body in the lower abdomen and requires a small bag over the opening to collect waste. Many patients have this surgery performed 1st, then a later surgery revision to a continent ileostomy (i.e.Kock pouch.)
Welcome!
I suffered from UC from the age of 13 until I had my colon and rectum surgically removed at age 21. I am now 50 years young and not much has really changed regarding treating this disease. Some consider it autoimmune, which I wholeheartedly agree with since I have other related conditions. I had a traditional Ileostomy then converted to a continent Kock Pouch requiring several valve revisions.
Those that suffer from UC and IBD's are extremely embarrassed and feel alone. No one likes to discuss "poop" problems - or be a "pain in the butt". And, this disease has exaberations and sometimes remissions and it really can effect you minute by minute, day to day. I encourage all of you with someone suffering from this to understand it takes an act of bravery to decide what course of action they choose to cope with it -whether or not to say "when" to surgery - if they even have a choice.
We all understand loss - in any form. I wish all IBD's and ostomates peace of mind.
Those that suffer from UC and IBD's are extremely embarrassed and feel alone. No one likes to discuss "poop" problems - or be a "pain in the butt". And, this disease has exaberations and sometimes remissions and it really can effect you minute by minute, day to day. I encourage all of you with someone suffering from this to understand it takes an act of bravery to decide what course of action they choose to cope with it -whether or not to say "when" to surgery - if they even have a choice.
We all understand loss - in any form. I wish all IBD's and ostomates peace of mind.
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