UOA Jacksonville Chapter #211 TheMailbag Meetings are held at the Baptist Medical Center 8th Floor - Meeting Room C - 3rd Sunday of each month 3PM A MESSAGE FROM THE PRESIDENT & VISITATION COORDINATOR
Vice President 774-4082 Patti Langenbach --
I would first like to thank everyone that attended our meeting on April 28,
2004. We had 14 people attend and out of that 14, 3 were new people and
Treasurer 786-2359 (800) 741-0110 (904) 396-7827
we enjoy having new faces and hope that they will return in the future. We
had Van from Convatec as our speaker and he introduced the new product
that they now. Van is always very informative on all the Convatec products
and answers all questions. We hope that next time he comes to speak we
have a bigger turn out. We also had a report from Eugene on Ron Perry. He is doing better but
Inside this issue
still need to gain some weight before he can have his next surgery. He is
Chapter Minutes…….…….….2 very alert and would love to have visitors if you can just stop by. He is in
Inflammatory Bowel Diseases.….3-4 the Shands pavilion in room 344.
Weekly Meetings…….……….….….5 Also we need everyone to check and see if they have renewed their na-
tional and local membership. If you become/renew your national & local membership, you will receive this newsletter and the Ostomy Quarterly
magazine. I just received my Spring 2004 issue and read it from cover to
Please plan to join us
cover then I pass mine on to a new member. Please contact Brenda (282-8181) and I will check and see if you are still current on your membership.
Sunday May 16 starting at 3 p.m.
We also want to remind you that if you have extra supplies and want to
donate them to our closet that we have at Medical Care Products, please contact Brenda (282-8181) and I will arrange to either pick them up or you can drop them off at Medical Care Products. You never know your extra supplies could help someone get thru one month. Our next meeting is May 16, 2004 and we will be playing UOA jeopardy with Patti from Medical Care Products as the host. They played this game back in June 03 and everyone loved it so please plan on attending. I had at least 5 people call me with regard to our meetings and our organi-zation and out of the five, three attended our April meeting. Again I thank you for attending.
Toll Free 800 741-0110
I hope to see each and every one of you on May 16, 2004 at 3:00 p.m. at
Baptist Medical Ctr, 8th Floor, Function Room C.
Sincerely, Brenda L. Holloway, President and Visitation Coordinator
Minutes of the April, 2004 meeting of the United Ostomy Association Jacksonville Chapter #211 The meeting was brought to order by President Brenda Holloway at 3:07pm Vice President made the announcement that Ron Perry was doing much better and is in room #344 of the Pavilion at Shands Medical Center. Brenda announced that she had several calls with new ostomates interested in our pro- grams. Several new folks were in attendance at this meeting. Brenda introduced Van Russell, Territory Manager for Convatec. Van talked about several new products available from Convatec. He showed us the Invisiclose pouch. This drainable pouch does not have a separate tail closure. The tail rolls up on itself and securely closes without the hard plastic closure we are all used to. He also re-introduced the Esteem Syn- ergy line of two-piece products. This system is a very low profile two-piece that does not have a hard plastic ring flange. It is very discreet. It includes drainable pouches with and without filters. The line also includes a moldable convex wafer along with the flat stomahesive flexible style. The urostomy pouch should be available this year. As always, Van’s presentation was appreciated and interesting. The door prizes were distributed and the 50/50 drawing put $5 into the treasury. The meeting was adjourned for refreshments at 4:28pm. Respectfully submitted, Patti Langenbach, Secretary UOA Annual Youth Rally
The UOA's Annual Youth Rally provides the opportunity for 11 to 17 year-olds to be with others their age who have had ostomy or alternate-procedure surgery. Sessions on hygiene, self-care, sexuality and other suitable subjects are offered. The volunteer staff includes WOC(ET) nurses and UOA members. The rally usually is held in a university setting and teaches young people that the only thing limiting them is their attitude, not their ostomy. For additional information, view the UOA Youth Rally Brochure http:// www.uoa.org/new/files/youthrally.pdf ( 278K PDF) For more information, call 800-826-0826, ext. 104 or e-mail jsmith[at]uoa.org. Inflammatory Bowel Diseases—Misery Needn’t Be the Norm A bout of diarrhea is unpleasant enough. Imagine chronic diarrhea. It’s a very real problem for the more than 1 million Americans who have inflammatory bowel disease (IBD). The most common forms of IBD are Crohn’s disease and ulcerative colitis. Although a cure for these diseases remains elusive, the goal is to make it possible for people with IBD to have normal or near-normal lifestyles. Damaging Inflammation Chohn’s disease and ulcerative colitis are two separate inflammatory diseases that damage the digestive tract lining. The course of either disease can be variable and difficult to predict. Signs and symptoms may subside, only to be followed by periods of long-term flare-ups. disease can occur anywhere in the digestive tract. It may occur simultaneously in different loca-tions. However, when it’s limited to the colon, it’s referred to as Crohn’s or granulomatous (gran-u-LOM-uh-tus) colitis. Crohn’s disease generally penetrates every layer of tissue in the affected area. Ulcerative colitis is typically found in the colon and rectum. The inflammation often begins in the rectum and spreads into the colon. It usually affects only the innermost lining of the colon and rectum, not the deep tis-sues. Over time, it may increase the risk of colon cancer. IBD can occur at any age, although the peak for it to appear is between the ages of 15 and 35. What causes Crohn’s disease and ulcerative colitis is unknown. It’s thought that genetic predisposition plays a role; along with some sort of environmental trigger that sets the diseases in motion. Diagnosing the Problem Generally, several tests are needed to confirm whether you have Crohn’s or ulcerative colitis. Blood tests may detect inflammation. Two newer tests check for the presence of antibodies that may differentiate Crohn’s disease from ulcerative colitis. The new tests are called perinuclear anti-neutrophil cytoplasmic autoantibody (pANCA) and anti-Saccharomyces cerevisiae antibody (ASCA). However, the results are only 70 percent to 80 percent accurate. Diagnostic imaging of your intestines can provide helpful information. Colonscopy – viewing the entire colon using a thin, flexible tube with an attached camera – is generally the most informative imaging technique. Biopsies taken during colonoscopy can help in diagnosing IBD. Drug Treatment Options Drug therapy is a key component to treating IBD. Although it’s not a cure, it often helps control the condi-tion. Once the right drug or combination of drugs is determined, symptoms can often be reduced. But is may take some time. Medications that may be considered include: Anti-inflammatory drugs – These often are prescribed first in the treatment of IBD. They act like a salve by working on the lining of the intestine. These drugs include balsalazide (Colazal), mesalamine (Asacol, Pentasa, Rowasa), olsalazine (Dipentum) and sulfasalazine (Azulfidine). Another type of anti-inflammatory drug – corticosteroids (such as prednisone, methylprednisolone, and hydrocortisone) may be used for mod- erate to severe IBD that doesn’t respond to other treatment. Immune modulators –These medications are used to bring an overactive immune system back to normal. The most widely used are azathioprine (Imuran) and 6-mercaptopurine (60MP, Purinethol). Infliximab (Remicade) was approved by the Food and Drug Administration for short-term treatment of moderate to severe Crohn’s disease, but newer studies indicate that it’s effective over the long term as well. Meth- otrexate is another option when other drugs fail to provide relief. The drug cyclosporine also may be used by people who don’t respond to other medications. Antibiotics – Metronidazole (Flagyl) and ciprofloxacin (Cipro) may be helpful in treating abscesses and fis- tulas associated with Crohn’s disease. In some instances, metronidazole and ciprofloxacin may provide benefit for Crohn’s disease even in the absence of fistulas and abscesses. However, side effects may prevent their long-term use. Continued on page 4 In some situations, nicotine skin patches may be used for short-term relief of ulcerative colitis flare-ups. It’s not clear why the nicotine patch has this effect. Depending on your symptoms, your doctor may recom-mend the use of other medications. These may include anti-diarrheals, acetaminophen (Tylenol), iron supplements, and vitamin B-12 injections. In addition, a number of other experimental drugs are being tested for IBD. LLifestyle Treatments Lifestyle changes that may help control your symptoms and even lengthen the time without symptoms in- clude: Manage your diet– Although there’s no firm evidence, some foods – such as dairy products and fatty foods – appear to aggravate IBD in some people. You may want to try eliminating certain foods for a period of time to see if that brings relief. To make up for lost nutrient, ask your doctor whether you should take a multivitamin. Supplements of any sort should be taken only under your doctor’s supervision. Some can in- terfere with other medications. Drink plenty of fluids – Drink at least eight 8-ounce glasses of fluid (water is preferable) a day to offset fluid loss from diarrhea. Reduce and manage stress – Although stress isn’t a cause of IBD, it can worsen signs and symptoms. Counter stress with daily exercise, rest and relaxation techniques. Connect with those who can help – Consider joining a support group. The Crohn’s and Colitis Foundation of America (CFFA) has chapters around the country. CCFA’s toll-free number is 800-932-2423. The Web site address is www.ccfa.org.
Avoid non-steroidal anti-inflammatory drugs(NSAIDs) – NSAIDs, including ibuprofen and naproxen, Surgical Treatment Options If you have ulcerative colitis, there’s 20 percent to 39 percent chance you may need surgery at some point. Removal of the colon and rectum – proctocolectomy – can be a cure for the disease and reduces the risk of colon cancer. One method involves attaching the last portion of the small intestine to a small opening (stoma) created in the lower abdomen. An ileostomy pouch worn over the stoma collects waste and is emp-tied as needed. An alternative surgical procedure eliminates the need to wear a pouch. In this procedure, the colon and in-ner lining of the rectum are removed and a portion of the small intestine is redirected, reshaped, and at-tached to the anus so that near-normal stool passage is possible. This is called ileoanal anastamosis. Other names are “J” pouch or ileoanal pouch. The chances you’ll need surgery are much higher with Crohn’s. At least 70 percent of those with the dis-ease need at least one or more surgeries. These surgeries generally involve removing a portion of the small or large intestine affected by the disease. This sometimes results in years of improvement or even no symptoms. However, the disease often shows up at another point in the digestive tract. (Mayo Clinic Health Letter, Mayo Foundation for Medical Education and Research, Rochester MN, 55905) UOA Jacksonville Chapter is now on the Web
Ostomy Chat Room Weekly Meetings Yahoo Peoples with Ostomy2* - Mondays, 8:00 pm US Central time http://clubs.yahoo.com/clubs/peopleswithostomy2 StuartOnline Ostomy Chat* - Tuesdays, 8:00 pm US Central time http://www.stuartonline.com/chatroom.htm Community Zero (Ostomy) Support* - Wednesdays, 9:00 pm US Eastern time http://groups.yahoo.com/group/ostomatessupport/ Shaz & Jason's Chat* - Saturdays, 8:00 pm UK time / 3:00pm US Eastern Time http://www.ostomy.fsnet.co.uk/chat.html Yahoo UK Ostomy Support* - 1st & 3rd Sundays, 8:00 pm UK time / 3:00 pm US Eastern Time http://clubs.yahoo.com/clubs/ukostomysupport
Use this form to join our chapter! Annual dues are US$25.00. If you cannot afford to pay dues at this time, you may still be accepted as a "local-only" member.* You do not have to be an ostomate to be a mem- ber and/or support the work of UOA.All information on this form will be kept confidential.
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Type of intestinal or urinary diversion: Colostomy __ , Ileostomy __, Urostomy __, Ileoanal Pull-thru __ Continent Ileostomy __, Continent Urostomy __, None __, Other __
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UOA Jacksonville Chapter PO Box 10239 Jacksonville, FL 32247-0239
Phone: (904) 396-7827 Fax: (904) 396-7829 Email: email@example.com
Sunday May 16 starting at 3 PM Baptist Medical Center 8th Meeting Room C For information Medical Care Products, Inc Family owned an operated for over 38 years Call For Free Catalog 800 741-0110 We accept Medicare Insurance Assignments Visit Our Web: www.ostomymcp.com
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