J-Pouch Surgery and Pouchitis Explained
What is a J-Pouch and Why is it Recommended?
Surgeons researching how to improve quality of life for people who have lost their colon (and sometimes also rectum) developed a reconstructed pouch made from a section of small bowel, called the ileum, in the UK during 1976. This revolutionary advancement in colorectal surgery is referred to in simple terms today as ‘the J-Pouch’. Sadly, this instances of bowel conditions on the rise worldwide especially in highly industrialized locations, the rate of reconstructive pouch surgery is also increasing.
A number of things could cause a person to end up in J-pouch surgery territory. A person might need to have their colon or colon and rectum removed for a number of reasons and after removal, reconstruction is regularly suggested for suitable patients. Conditions that trigger a pouch surgical process include but are no limited to;
* illness like ulcerative colitis, indeterminate colitis, toxic megacolon, familial adenomatous polyposis (FAP), or cancer,
* injury from an accident or traumatic childbirth,
* serious infections including Clostridium difficle infection (C. diff) or Cytomegalovirus (CMV),
* allergic reaction to medication,
* and in very specific rare circumstances, Crohn’s disease.
The term “J-Pouch” is really just a nickname. The surgical procedure is known by a number of different official names worldwide including ileal pouch–anal anastomosis (IPAA), restorative proctocolectomy (RPC), ileal-anal reservoir (IAR), an ileo-anal pouch, ileal-anal pullthrough, or a pelvic pouch. It is also commonly referenced by the shape a person gets being referred to as a J-pouch, S-pouch, W-pouch, H-Pouch. Today the most common type of pouch surgery preformed worldwide is the J-Pouch.
The first pouch was premiered in London (UK) by British surgeon Sir Alan Parks. After his first surgery, his colleague, Professor John Nicholls joined to assist with creating the rest of the first five pouches in the world. The duo’s groundbreaking journal article on their advancement in colorectal surgery is titled “Proctocolectomy without Ileostomy for Ulcerative Colitis” and it was published in a 1978 edition of the British Medical Journal.
Sir Alan Park’s viewed the procedure as largely an elective reconstruction option to offer people choice between life with a permanent stoma or a reconstructed pouch. His pouch was a ‘first’ in colorectal medicine because it allowed for the restoration of anal evacuation after a colon and rectum had been removed eliminating the need for a stoma with external appliance bag.
Previously, Finnish surgeon Nils Koch had developed a continent ileostomy, now known as the ‘Koch Pouch’, but that only held waste inside the abdomen — it did not enable traditional evacuation of stool. The entire aim of Sir Alan’s pouch procedure was to help provide additional quality of life over therapies that existed at the time, for those who felt it would offer them some more benefits.
It’s important to expressly state that pouch surgery does not cure any disease or infection. Removal of a dodgy colon is the cure. J-Pouch surgery, and even Koch Pouch surgery, is not a cure but a reconstruction only.
How to find a J-Pouch Surgeon or Hospital:
Intestinal pouches are a rare condition. It can be difficult to find doctors that are knowledgeable of the condition in your hometown and even harder when you’re away.
While most people expect family doctors to be have knowledge for pouch procedures, the fact is, it isn’t widely taught in medical school for internal medicine and most general practitioners will not have expertise with pouches. Some primary physicians may have specialized in gastroenterology during medical school or sub-specialized, and if you find one of these rare gems anywhere in the world, you are very lucky, but that is rare. Most family doctors will need to refer you to a gastroenterologist for more information. Even better if you are lucky enough to have a gastroenterologist specialized for ileum pouches in your city or region.
Why Pouch Centers are Important to J-Pouches:
In addition to specialized doctors for colorectal surgery and gastroenterology, hospitals with designated pouch centers often also have a specialized multi-disciplinary practice that supports holistic pouch care.
This means expert pathology, radiology, gynecology and urology, fertility, psychology, nutrition, and rehabilitation including physiotherapy — all experienced and skilled for the unique needs of a person going through ileum pouch surgery or living with an intestinal pouch.
Further, specialized pouch centers also often have a designated pouch nurse or pouch nursing team. The pouch nurse is usually an extension of the IBD nursing team or stoma nurse team.
However, don’t worry if you got your pouch due to a cause that isn’t IBD. Pouch nurses are also trained for pouches created from injury, infection, FAP, cancer and other reasons. Pouch nurses provide healthcare, advice, and support specific to the concerns of pouch patients before and after surgery.
The importance of experienced multidisciplinary pouch care has been recognized by several national gastroenterology associations including the British Society of Gastroenterology (BSG) and the European Crohn’s and Colitis Organisation (ECCO).
For example, both the BSG and ECCO recommend that pouches should ideally be created at facilities that have specialized pouch centers when possible due to the high level of technical skill required for multidisciplinary management of a pouch. Numerous studies also show that there is a direct relation between the success of a pouch and the experience a surgeon has with previous pouch creations.
Pouch Specialists Database:
There is a comprehensive database of doctors with knowledge of pouches, but for the moment, it is centered around one common trigger for pouch surgery: inflammatory bowel disease.
The majority of people living with an ileum pouch got it because of an underlying diagnosis of ulcerative colitis. UC is not the only reason for proctocolectomy with pouch reconstruction, but is the main cause. Remember the first ever journal study on pouches referenced at the start of this article was published in 1978 and titled Proctocolectomy without Ileostomy for Ulcerative Colitis.
Even if your pouch was prompted by a condition other than IBD, local chapters of Crohn’s and Colitis Foundations worldwide will hold the best regional information for ileum pouches because they have it ready for UC pouch patients. Don’t worry about not having IBD. There isn’t some ‘diagnosed disease only’ requirement nor is anyone judging you. The local chapters will be happy to help and share their specialized knowledge with any person who has an intestinal pouch, especially when a person with a pouch is experiencing a health emergency.
For travel around the USA, people can look into a database offered by the headquarters of the Crohn’s and Colitis Foundation in America: www.crohnscolitisfoundation.org/living-with-crohns-colitis/find-a-doctor.
How to Diagnose Pouchitis:
Most people who undergo elective reconstructive pouch surgery have either no issues or occasional minor discomfort. However, some pouches experience more serious complications that need medical management with a variety of therapies including medication and/or additional surgery.
The most common pouch complication is the umbrella term ‘pouchitis’. This is a general term that refers to a wide spectrum of diseases and conditions that cause inflammation of the pouch. This term means inflammation of the pouch, similar to how tonsillitis means inflammation of the tonsils or sinusitis means inflammation of the nasal sinuses. It is a common complication after ileal pouch-anal anastomosis (IPAA) or J-Pouch surgery.
People report many symptoms including abdominal pain or cramps, increased bowel frequency, urgency of movements, strong evacuation urges, daytime incontinence, nocturnal seepage, and/or rectal bleeding.
Pouchitis is diagnosed based on the presence of symptoms together with endoscopic and histological evidence of pouch inflammation.
For example, biopsies may be taken during a pouchoscopy, a camera exam like a colonoscopy but for the pouch, to rule out infection from Clostridium difficle infection (C. diff) or Cytomegalovirus (CMV). Other infections that can occur, especially when traveling, include campylobacter (known as food poisoning), salmonella (again also known as food poisoning), and nanovirus on cruise ships.
Biopsies can also be used to diagnose Crohn’s disease development in a pouch that was created in a patient who had an ulcerative colitis diagnosis some years before, celiac disease, and even other inflammatory conditions such as IgG and IgG4.
The standard treatment of pouchitis when first reported (acute pouchitis) without any other obvious cause identified such as infection or surgical suture/staple line leak (fistula) is oral antibiotics for two weeks. Remeber “pouchitis” is an umbrella term and there are many causes for it beyond dysbiosis.
In adult outpatients with pouchitis who have adequate response to antibiotics, but relapse shortly after stopping antibotics, their treatment might be escalated to mesalamine (called mesalazine in Europe), corticosteroids, or advanced immunosuppressive therapies such as anti-TNFs including infliximab, adalimumab, vedolizumab, or ustekinumab. A person who doesn’t respond to antibiotics initally, or who relapses when antibiotics end, may also require hospitalization to help manage their pouchitis.
Patients and Practitioners Managing Together:
It is important to understand how your digestive system works after reconstructive J-Pouch surgery, especially if a person is experiencing discomfort.
Remember, the aim of intestinal pouch surgery is to boost quality of life. This means that the aim of J-Pouch surgery is to enhance quality of life. But for a doctor to be able to deliver on that goal, they must understand what ‘quality of life’ means to you. No two people are the same. This isn’t a formula for all. Each patient must communicate their needs and wants to their medical team to guide the treatment plan so that it can hopefully enable what you as a unique individual value most.
There are a number of tools and trackers that can be used to document data and discover insights. These insights can inspire productive conversations between the patient and provider. They also assist healthcare practitioners to make a diagnosis. If you already have a diagnosis, then the insights enable you to sit with your practitioners and adjust any treatment plans if or as needed.
However, I couldn’t find one tool that delivered on not only following the physical aspects of pouchitis management, plus tracking dietary concerns, but also measured these against key quality of life indicators. Further, I couldn’t find anything that did a good job of also getting patient and practitioner speaking the same language and working towards a common shared plan. This is why I developed and wrote Wellness Diary for Pouchitis: Essential Manual and Daily Tracker to Better Manage Inflammation in Ileum Pouches: J-Pouch and S, W, H.
Trackers, logs, and analysis pages have been intentionally designed to aid anyone experiencing a bout of poor health due to pouch inflammation. A simple and clean design using graphics helps keep writing to a minimum so that during ‘brain fog days’ this Wellness Diary for Pouchitis is still possible to complete. It’s also easy to analyse and any doctor taking a look can quickly understand. The book can easily be brought to various practitioners’ visits so that your family doctor, gastroenterologist, pouch surgeon and more can understand your current status plus contribute to plans for your improved health and well-being.
Wellness Diary for Pouchitis — key areas of interest :
Food Tolerance: Track meals and symptoms to identify any triggers,
Sleep, Pain & Mood: Record key levels to measure progress and revise treatment,
Bowel Movements: Log number, quality, urgency for diagnosis and treatment,
Quality of Life Indicators: Analyze symptoms against activity levels with practitioners.
Tracking takes place for 60 days. Analysis is done weekly and monthly, allowing for any treatment plan to be revised sooner rather than later.
Finally, this Wellness Diary for Pouchitis supports ileo-anal pouches (IPAA) of any shape including J-Pouch, S-Pouch, W-Pouch or H-Pouch. IPAA surgery is also sometimes referred to as Reconstructive Proctocolectomy (RPC).
Wellness Diary for Pouchitis available on Amazon:
If you think the Wellness Diary for Pouchitis might be able to support you and your practitioners, please remember to leave a review on Amazon or Goodreads afterwards. This is because the book was designed to help people experiencing pouch inflammation get the most possible our of life while safely managing the condition and your opinion and thoughts are important. Any comment you share will help another poucheee find the book and decide if it is the right tool to help them.
Cambridge MBA | Patient Advocate| Healthcare Business Exec | Author
Author #1 New Release in Colon & Rectal Surgery on Amazon USA
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