The Continent Corner
· Have I Made a Big Mistake?
· The Continent Diversion Network
· Temporary Ostomies
· Continent Corner
· Concerns with the J-pouch
· Temporary Ostomy Troubles
· My J-Pouch Surgery
· I’ve Had My Pouch Surgery ... Now Can I Ever Have A Baby?
By Zachariah Walker, Continent Diversion Network, UOA
Skirting down Montana Highway 93, I find myself lost in the view of the glorious snow-flecked Mission Mountains. The spring sun shimmers off the mirrored image of Flathead Lake and I reflect...
It was close to three months ago, lucky St. Patty's Day in fact, that I found myself in Seattle undergoing the final step of my J-pouch surgery. As a healthy twenty-two year old, having this surgery was a much more difficult decision to make than it was eight years earlier as an eighth grader suffering from ulcerative colitis. Nevertheless, after much deliberation and encouragement, I decided to take a chance on improving my long-term lifestyle.
Therefore, here I am looking forward to summer and wondering when that big improvement is going to start. The assurance I receive from my J-pouched friend keeps me going, but I have faced frustrating times. Along with the problems of adjusting to the surgical changes are the difficulties in getting some sort of recovery schedule. When am I going to feel better?
Everyone I talk to seems to suffer from the same crazy phenomenon of not being able to remember the details of their recoveries. So for those interested, here is my attempt at remembering details and helpful hints of the post-surgery adjustment period—that lasts for a lifetime, I hear.
My stay in the hospital for the takedown was brief, in Tuesday and out Thursday. After having an ileostomy for eight years, my first BM (bowel movement) was exciting, but the novelty was short-lived. I stayed in a motel with my parents for the first week out. Luckily, I had college hoops on TV to entertain myself, though having to run to the bathroom ruined many exciting endings.
The BM rate was at least fifteen a day and greasy restaurant food did not help. I focused on eating mild, bulk-forming foods; such as, cheese, crackers, creamy peanut butter and rice. However, even if you do all the right things, I recommend staying in close proximity of a toilet for the first few weeks.
It was nice returning to the comfort and stability of home. The next three weeks were "movie time". I very rarely made it through a movie without at least one trip to the restroom. I slowly worked into experimenting with foods. Gas producing foods are not fun at this point and definitely, no Hawaiian Pizza or spicy foods trust me.
After one month, I was comfortably back at work. My boss has been very understanding about all my necessary breaks. It was very beneficial to again be productive and get into a routine. Progress was still very slow, and I tried using Fiber-con and Imodium to slow and solidify things. These attempts were short-lived for me, though, they do help many people. I continued to focus on diet and positive thinking ... an often-difficult task.
Finally, right at about two months, I stepped back and realized that I had reached a new peak. I was feeling energetic, eating more freely and my BM’s were down to around ten a day. It was still a lot, but they were much more comfortable than before. I was once again hiking, biking and simply feeling good. However, unfortunately, it has only been downhill since.
As of today, my urgency and number of BMs are similar to my first month out. I am very confused and discouraged by this. I have pouchitis, and I am hoping antibiotics can get things back under control, but if not, it will once again be a waiting game.
My experience up to this point has obviously been frustrating. In the back of my mind is always the lingering question of whether or not converting my ileostomy was the right thing to do. If you are considering J-pouch surgery, be prepared for it. I know I went into mine way too overconfident. Research, talk to J-pouchers, and most importantly, stay positive. I know this is going to work out. It has to . . . I have big plans ahead!
UOA's Continent Diversion Network is a national support group for people who have or plan to have an internal intestinal pouch, replace the bladder or any part of the colon. We do not wear ostomy systems or collection appliances.
Members of UOA's Continent Diversion Network come from a variety of backgrounds and medical conditions. Our surgeries include the Kock Urinary Pouch; Indiana Urinary Pouch; Neobladder; Kock Ileostomy; Barnett Continent Intestinal Reservoir; Ileo-Anal Reservoir; Pelvic Pouch; J-Pouch, colon-bladder substitutes as well as the new continent pouches connected to the urethra.
We promote public and professional awareness of Continent Procedures, and improve the quality of life for recipients and their families.
How Do We Do It?
· We provide literature on all the continent procedures, most of which is available at no cost.
· We act as a resource and provide support by phone, mail and e-mail.
· We train visitors and continent procedure patients.
· We establish and maintain good rapport with physicians, nurses and the medical community.
· We publish our award winning quarterly newsletter, The Continent Connection.
· We maintain a hotline, 1-800-456-7494. This is especially helpful to people who are contemplating continent surgery, having problems or sharing a solution.
· We offer a registry of continent people who may be contacted directly for information and support.
We send representatives to meetings, conventions and training sessions to provide discussions, demonstrations and problem solving.
We began as a local support group for patients of the Kansas University Medical Center. Our Group then became affiliated with the Kansas City Chapter as a satellite and in 1993 achieved full UOA chapter status. As the UOA's only continent chapter, our scope kept expanding to people in other cities. Now, as UOA's Continent Diversion Network, we serve the entire country and beyond.
Our Chapter Officers and Board of Directors manage all our activities and outreach. Renowned surgeons and ET Nurses serve as medical advisors, attend all our meetings and oversee technical issues. At the national level, UOA's massive worldwide membership provides access, support and political power available to help meet our mission goals.
Since we talk with so many people living with so many different procedures in so many cities, we are in a unique position to gather and share information. We offer valuable assistance to doctors, nurses, pharmacists and suppliers. We have designed an Internet site to give information, inspiration and assistance to those interested in these procedures. Visit us at www.ostomyalternative.org . You will meet the nicest people!
By Nancy Brede, RN/ET
Temporary ostomies are surgically created with the intent of reconnecting in the future. The anatomy of the gastrointestinal system or urinary system is left intact.
Permanent ostomies are created with the intent that the ostomy surgery will not be reversed; usually the surgery is performed when disease or injury prevents maintaining the anatomical structures needed for reversal.
A large number of temporary ostomies involving the colon are done on an emergency basis. The colon becomes obstructed or blocked, and stool cannot pass through. Because of the emergency nature of the surgery, the bowel cannot be cleaned and prepped ahead of time. Reversal, or re-anastomosis—hooking up the normal anatomy—can be done later, when infection is not as likely and proper healing can take place.
The most common situations and diseases requiring a temporary ostomy are:
· Cancer of the colon with obstruction or other abdominal cancers affecting the colon
· Hirschsprung’s disease, a disorder/malfunction in infants that prevents passage of stool Due to lack of nerve cells in certain areas of the large intestine, stool is not moved through, and an ostomy is necessary.
· Diverticulitis, small out-pouchings—diverticula—in the wall of the intestine becomes infected. The diverticula may rupture or cause obstruction.
· Inflammatory bowel disease or Crohn’s disease may necessitate a temporary ostomy to allow the diseased bowel to heal.
Persons with temporary ostomies face many of the same problems permanent ostomates have. It is just as important for them to have support, reassurance, and teaching as it is for persons with permanent ostomies. They must learn proper skin care, stoma care and pouching techniques.
Often, stomas are not ideally situated on the abdomen because of the urgency of the surgery. Thus, pouching and skin care can pose difficult problems. Following temporary surgery, measures need to be taken to improve the person’s health. He/she must be in the best condition physically to undergo the major surgery for reconnection.
This is also a time for the person to psychologically deal with past surgery, upcoming surgery and possibly a newly diagnosed disease. It may be a difficult time with all the changes and new challenges. Often, there are many fears and unanswered questions. Other people with ostomies and ET nurses may provide reassurance and the answers to many questions.
Questions and answers about j-pouch surgery—Internet
Will I always have control?
The surgeon checks every candidate for strong sphincter muscles. You should gain good control after surgery with a minimum sense of urgency. There is usually leakage at night when the anal muscles relax. A pad may be used for this time to remain sanitary.
What can I eat once I have my J-pouch?
Almost any foods . . . learn by trial and error. Try small amount of foods to see if you have any reaction. You may probably eat anything in moderation. If you had lactose intolerance before surgery, it may persist afterwards, but medications like Lactaid may help. There is no "j-pouch" diet.
Are complications with this surgery normal?
Unfortunately, there is a much higher rate of complications with this surgery than with a Brooke ileostomy using modern techniques. Yet, patients do report a better quality of life after surgery than with UC, and 95% of them say they are satisfied with the results.
Will I have to take medications?
Most usually do. If the surgery was for ulcerative colitis (UC), you will be tapering off steroids gradually. However, low dose maintenance may be needed for some time. Many also take some type of fiber therapy—either natural or medical—to decrease the number of stools per day.
Virtually all UC patients with a j-pouch will have pouchitis, a non-specific inflammation of the pouch sometimes resulting in fever, pain and diarrhea. This is currently treated using the antibiotic Flagyl.
Will I ever get UC again?
No. The surgery plus removal of the mucus membrane in the anal area eliminates this problem forever. Surgery is a cure for UC, and for those who had surgery for familiar polyposis, colon cancer is no longer an issue. If there is no colon, there cannot be UC. Removing the colon also takes away even the possibility of colon cancer.
However, if your surgeon left a small amount of rectal tissue, this can develop UC and/or cancer. It should be checked periodically by him/her.
Will I have a normal sex life?
Both men and women should be able to resume a normal sex life following surgery. There is a risk of permanent injury to males during surgery that would leave them impotent. Women have become pregnant and have delivered healthy babies both by C-section and through vaginal delivery.
Concerns with the J-pouch
By Dr. Tracy L. Hull, Cleveland Clinic
Patients with ulcerative colitis who were treated surgically previously underwent a total proctocolectomy with permanent ileostomy. However, in the late 1970's, when the pelvic pouch procedure was first introduced, the surgical approach to UC was revolutionized.
The pelvic pouch has now become the "gold standard" in surgical treatment. Although the operation avoids a permanent stoma and usually improves the patient's quality-of-life, it does not restore the bowel function to normal.
Patients can expect to have many stools per day—as few as two or three for the fortunate few and as many as 40 for the less fortunate with the average being around eight—and these stools are pasty to watery in consistency. As with any bowel operation, patients experience many changes, both short-and long-term. This article will discuss some of the potential long-term problems that patients with a pelvic pouch may experience.
Diarrhea: The function of the pelvic pouch will change over the first year; improve as the pouch stretches; and becomes larger after the ileostomy closure. However, there are still some people who have up to 20 bowel movements or more daily.
Dietary changes may help these people to decrease the number of bowel movements. Foods, which have been found to help decrease the water content of the stool, may help to reduce the number of trips to the toilet. These foods include applesauce, bananas, rice, creamy peanut butter, potatoes, cheese, marshmallows, pretzels, toast, yogurt and tapioca pudding.
Bulking agents, such as, Metamucil, Citrucel, Fibercon or Konsyl, also help thicken the stool. These products are ingested with little fluid to allow extra fluid in the gastrointestinal tract to be absorbed. Medications, such as, Lomotil or Imodium, are sometimes prescribed by a doctor to slow down stools. They should not be used without your doctor's approval.
Limiting the intake of fried and fatty foods and milk products may decrease diarrhea. Reaction to foods varies with each individual, and other foods may be found to increase the amount of stool produced or change the consistency.
Bowel obstruction and emptying concerns: To construct the pelvic pouch, the small bowel is stretched, along with the blood vessels, which provide blood to the pouch, in order to reach the anus. This stretching may predispose you to bowel obstructions from scar tissue, twisting or kinking—surgical intervention may be required to relieve the obstruction.
Another reason, which may lead to problems with pouch emptying, is a narrowing or stricture at the pouch-anal joint (anastomosis). This is diagnosed by an exam of the anal area and may cause symptoms of a progressive nature of a need to strain more and more to move ones' bowels. Usually dilation solves the problem and rarely is an operation needed to correct the problem.
Pouchitis? Pouchitis is a non-specific inflammatory condition of the pouch. The cause is unknown, but it occurs more frequently in patients who have a J-pouch for IBD versus those who have one for familial polyposis.
Patients are at a risk to develop pouchitis over their entire life, as long as they have a functioning pelvic pouch. For some patients, pouchitis is an isolated event, but others can experience multiple episodes or even continuous "chronic pouchitis”.
The symptoms are similar to a mini-attack of colitis. Patients report increased bowel motions, pelvic pain, abdominal cramps, malaise, fevers or blood in their stools. However, it is usual for patients with a pelvic pouch to notice blood on the toilet paper with normal function of the pouch and yet not have pouchitis. The most common treatment is Flagyl (metronidazole) 750 to 1500 mg daily for 7 to 14 days. This is effective about 85% of the time. Improvement is usually seen within 48 hours.
Temporary Ostomy Troubles
A patient with a temporary ostomy is in a unique and difficult situation. It is possible that doctors, hospital staff, and even the family tend to treat a temporary ostomate's surgery and resulting adjustment more lightly than the person with a permanent ostomy does.
Generally, the first eight weeks to six months after ostomy surgery is the most difficult time, and that time is all that the temporary ostomate has to wrestle with the burden of physical and mental adjustments, often with little preparation.
All of us who deal with temporary ostomates should remember to equip them with the same information, materials and support that we supply for those with permanent ostomies. Indeed, it must be very difficult for the temporary ostomates to cope with the problem without the boost of a long-term commitment.
By Dave Hirshhorn
The bottom line is, “When your health is at stake or your quality of life is nil, then it’s time to get surgery”.
It is a hard decision to make; especially when you can remain, what you think is somewhat active. I started having symptoms of ulcerative colitis in 1979. After getting this initial minor flare-up into remission, I had a few relatively trouble-free years with only an occasional “glitch”. I quit smoking in 1988 and started having increased flare-ups. In March 1992, I had a full-blown flare-up that waxed and waned until October 27, 2000, when I had the first of my two surgeries. Before surgery, it would sometimes take me eating almost a whole bottle of Imodium just to buy me 15 minutes so I could drive to my doctor’s office without a UC accident.
In 1993, my gastroenterologist put me on prednisone, and I took it for seven years despite my best efforts to taper off. Each time I tried, I met with another flare-up—a common condition of using prednisone to control UC. In June 1999, I started my final downhill slide. By October of that year, the continuous bleeding was seriously threatening my life—I was dying. I was admitted to the hospital and told that I would not be able to go back to work anytime soon. It took a two-week hospital stay to get my blood chemistry under control and pull me from death. I had tolerated the high dosages of prednisone fine until then. By this time, the long-term use of prednisone was wreaking havoc on my body.
When I relapsed again in May of 2000, my doctor doubled my dosage of prednisone and I continued to decline, so he doubled it again. Unable to control the UC with meds he determined that, “It’s time to see a surgeon”. At this point, I had no choice. My doctor had been talking to prepare me for surgery to remove my diseased colon for over two-years. He was initially concerned over the damage the prednisone was doing to my body, but now it hardly worked at all to slow my symptoms. I had 18 different side effects attributable to the prednisone. I made the final decision to choose surgery when I came to the J-pouch Internet site. I read about all the people who even with less-than desirable results would do it all over again. They discussed how they were off the meds and had control of their lives back.
I was so excited that I stayed up until 4:30 in the morning reading all the information on the site including questions and answers people had posted. When I woke up the next day, I called the surgeon’s office for a consultation. Creation of the internal pouch involved two surgeries the first of which gave me a temporary ileostomy. I did not have any trouble with that and so it was not a big deal to me. Because of the long-term prednisone use, I had to wait five months for the takedown of the ileostomy. My surgeon wanted to be sure the pouch was fully healed before reconnecting me.
I can now walk out of the house without fear of having an accident or knowing where every bathroom is located. I can now go and watch my two daughters at their soccer games, dance recitals and orchestra concerts—all things I could not do for the last several years. I was able to return to work full-time in July 2001. I have been highly productive, reliable and doing high-quality work—better than ever—since then.
Most days, I go to the toilet four to six times a day and have excellent control. Most nights, I sleep six to eight hours straight. I make sure to empty the pouch—go to the toilet—before I go to bed—just like regular people. I eat pretty much whatever I want, including hot, spicy foods. I know it is a hard decision to make and it is not an easy surgery, but it can be a liberating thing and a real boost to your entire health. It was for me. Editor’s note: To find out more about Ileoanal Reservoir (j-pouch) Surgery, and whether this type of ostomy surgery may be right for you, visit the j-pouch web site at www.j-pouch.org
I’ve Had My Pouch Surgery...Now Can I Ever Have A Baby?
Ulcerative colitis and familial adenomatous polyposis (FAP) are diseases that most commonly afflict young adults with 50,000 individuals requiring operative treatment of their disease annually. In recent years, the ileal pouch-anal anastomosis procedure (internal pouch) has emerged as the operation of choice for many of these individuals, even though some patients are understandably concerned whether the ileal pouch operation will affect intimacy with their partner or the ability to have a family.
The majority of men and women report an improved sexual life following restorative proctocolectomy because of better overall health. However, approximately 2% of men will have difficulties with sexual dysfunction while nearly 25% of women complain of painful intercourse, although this discomfort is usually improved over the pain experienced preoperatively.
We also understand that most women with an ileal pouch-anal anastomosis can successfully conceive, yet the infertility rate among these patients is nearly tripled. Women who do become pregnant will often complain of increased stool frequency and worsened control over bowel motions as the pregnancy progresses and the enlarging uterus compresses the ileal pouch. These symptoms are usually tolerable and bowel habits typically return to normal within three months after delivery.
Lately, many surgeons and obstetricians share the patients’ concern about which mode of delivery should be utilized. While vaginal delivery would possibly benefit the health of the infant or mother, cesarean section might avoid irreparable damage to the ileal pouch, the sphincter muscles, or the nerves that control these muscles.
Fortunately, studies from three large centers, including the Cleveland Clinic Foundation, report that bowel function is not significantly altered by the mode of delivery. We are unsure, however, if these short-term similarities will continue to be comparable decades later when delayed effort of vaginal delivery combines with other detrimental factors to cause worsened bowel function. Therefore, we generally suggest delivery by cesarean section unless this approach introduces excessive risk to the infant or mother.