J Pouch – Frequently Asked Questions
There are many common questions that are asked by patients with a pouch or considering pouch surgery. Many of these questions are answered by articles published on the Red Lion Group website or videos published on the Red Lion Group Youtube channel.
In this section, we list the frequently asked questions, with answers and cross reference to previously published articles or recordings where applicable, or information sheets published by the pouch nurse team at St. Mark’s Hospital.
The ileal pouch-anal anastomosis (IPAA), also known as an ileo-anal pouch, restorative proctocolectomy or an internal pouch is an anastomosis of the ileum to the anus bypassing the former site of the colon in cases where the colon has been removed. It retains or restores functionality of the anus, with stools passed under voluntary control of the patient and serving as an alternative to an ileostomy. This is usually a two- or three-step procedure in which the first step is the removal of the large bowel, except for the rectal cuff and anus, and a temporary ileostomy is made.
The next part of the surgery can be done in one or two steps and is usually done at between 3- to 12-months following the initial surgery. This allows for the patient’s general health to improve and allow gradual withdrawal from steroid treatment (in cases where the large bowel was inflamed), for example due to ulcerative colitis (UC).
In the next step of the surgery, an internal pouch is made from the distal end of the patient’s own small bowel, and this pouch is then connected to the rectal cuff so that the patient can once again have a functioning, internal bowel system. This may be a “j-pouch”, “s-pouch” or “w-pouch’ configuration, depending on how many ileal folds are used. W-pouches have greater capacity and can lead to a reduced frequency of bowel movement compared with the J-pouch configuration. The J-pouch configuration is associated with fewer complications as it is easier to create. The J-pouch is also the most common configuration in recent times.
The pouch and rectal cuff anastomosis can be left inside the patient to heal for some time while the patient still uses the temporary ileostomy for collection of bowel motions. The final surgical stage involves closure of the temporary ileostomy to restore internal bowel function.
In experienced centres of excellence such as St Mark’s Hospital in London, the three stages can be undertaken in two operations (sub-total colectomy first and then pouch creation and connection) using laparoscopic techniques to reduce recovery times and minimise risk to the patient.
The Red Lion Group "Can't Wait / Medic Alert card" is sent to all Red Lion Group members. This is the only "Can't Wait" card that is designed specifically for pouch patients. One side has an multi-language urgent toilet access message, and the reverse side has the internationally recognised medic alert symbol, and a QR Code / Link to a page on the Red Lion Group website containing important medical information about the ileoanal pouch procedure and medical considerations which could be shown to a GP or other medic in an emergency situation. You can find out more about the card here
St. Mark's Hospital was founded in 1835 by Frederick Salmon (pictured) as the ‘Benevolent Dispensary for the Relief of the Poor Afflicted with Fistula, Piles and other Diseases of the Rectum and Lower Intestines’. That's quite a tongue twister! You can read about the journey from it's initial foundation to it's current incarnation as St. Mark's - The National Bowel Hospital and Academic Institute on the following link https://www.stmarkshospitalfoundation.org.uk/about/history/
For anyone that has been a patient at the old St. Mark's building on City Road, London, you will find the video tour of the building following its conversion to an upscale apartment block quite fascinating.
Patients with an Ileo anal pouch are susceptible to dehydration, and St. Mark's has a recommended drink that can be made from readily available over-the-counter ingredients. This is known as the St. Mark's Oral Rehydration Solution (ORS) or e-mix. There is an article on the RLG website that discusses hydration issues for pouchees and the ORS recipe, which you can read here.
It is the case that there are many pouch patients that have no follow up support from the hospitals where they had their surgery or have lost contact.
Fortunately, the "award winning" pouch nurse team at St. Mark's hospital is open to take enquiries from anyone with a pouch - not just patients of St. Mark's.
The recommended contact method is by email and you can find information about how to contact them here.
As they will not have access to your medical records, they do ask that you complete the "Pouch passport / medical questionnaire" that you will find at that link and that you should complete and send with the email.
Depending on your medical situation, they can usually recommend a course of action. They also have information sheets to cover the most common issues experienced by pouch patients which they may send out based upon individual circumstances/symptoms.
"Butt burn" or "Bum burn" is the bane of many people with an ileoanal pouch. This can be due to increased bowel frequency and the constituency of the fecal output, which differs from people with a normal bowel. There is excellent advice on dealing with the problem including recommended barrier creams in the leaflet available from the St. Mark's Hospital pouch nurses, which you can download here.
What is normal frequency from an ileoanal pouch? There is no definitive answer, but it's often quoted that people with a pouch experience BMs (Bowel Movements) in the range 4-12 per day. If you have a new pouch, it may take some time for it to settle down into a routine. Whatever is "normal" for you, there may be times when you experience increased frequency.
For advice on managing/improving frequency, refer to the information sheet from the St. Mark's Hospital pouch team below. Click anywhere on image to enlage and download.
Vitamin B12 is absorbed by the terminal ileum, which is absent in the case of patients that have undergone pouch surgery. This means that pouch patients may be susceptible to Vitamin B12 deficiency. There is an article on the RLG website that covers the subject in detail including a letter that you can download to show to your GP. You can see that article here.
Note that, in practise, according to the Pouch nurses at St. Mark's, the incidence of B12 deficiency in pouch patients is actually quite rare!
In the early days of pouch surgery this question was hard to answer as there was not any long term history to base an answer on.
I recall being told that it was expected as a "ball park" that 5% of pouches may "fail" after 5 years, 10% after 10 years, 15% after 15 years etc. The earliest pouches were created in the late 1970's, and some of those are still alive and kicking!
Of course, there is debate about what constitutes a pouch "failure", but we would take it to mean that for whatever reason, the pouch patient has reverted to having a stoma. There is an exellent article on the subject of pouch life-span with some case studies on the website that you can read here.
A fistula is an abnormal tunnel between the pouch and another organ, most common are pouch anal and vaginal fistula, although they can sometimes reach the abdominal wall.
The incidence of pouch fistula is quite rare (about 5%) however they are usually treatable.
A great discussion on this subject is the webcast featuring Phil Tozer (consultant colorectal surgeon – St. Mark’s Hospital) & Lillian Reza (St. Mark’s Academic Institute) talking on the subject "Treatment of Fistulas associated with Pouches". You can view that on the Red Lion Group Youtube channel here.
Most pouch patients will be able evacuate "normally" without any assistance from a catheter (most commonly the medena catheter) but a small percentage may at some time in their pouch journey find the use of a catheter helpful or even essential.
I personally had my pouch over 25 years without needing a catheter but now use one on a regular basis. The problem usually presents as difficulty with emptying, or emptying fully. Usually, you would start to use a catheter based upon medical advice from your consultant or pouch nurses.
I initially was a reluctant user despite being recommended by my consultant but took inspiration from the excellent article "My Medena Catheter conversion" that initially appeared in the ROAR! magazine, written by ROAR! editor Christopher Browne. You can read it here.
What is clearly the "life-changing decision", is the decision to get rid of the ropey colon! Particularly if you have been suffering with chronic ulcerative colitis over a period of several years, you will find the release from the colitis symptoms truly wonderful, and if you are like me, you will be wishing you had taken that step sooner.
So the decision "J Pouch or Stoma" has to be seen in that context. You can't compare either with normal bowel function as that is not an option. Compared to suffering UC, either is preferable. But each has its pros and cons. Having a J pouch is most similar to how you were before, in that you evacuate through your back side, and have no external reminder that your internal plumbing is not as it once was!
What must be borne in mind is that there is no medical reason for a pouch compared to a stoma. The "cure" was freeing yourself from the ropey colon. Having a pouch is more of a life style choice or dare I say, purely for cosmetic reasons. Some people will find the thought of a stoma unbearable for different reasons - for example, age, life style or relationship status. For some, the light at the end of the tunnel - a pouch, gives them the needed bravery to go ahead with the initial surgery (even though that usually entails a temporary stoma).
They may then find after the initial surgery (the removal of the colon) , in the light of their new found good health - that life with the stoma is not as bad as they had imagined. In the end, it is a personal choice and there is no wrong or right decision. In my opinion, if you could be guaranteed a well behaved pouch - that would be the way to go. Typical problems that arise occasionally, are pouchitis and/or emptying issues. Even if these problems do occur, they can be managed.
The area of most concern to potential pouchees is the question of continence. For those that have suffered chronic colitis, the thought of going back to a situation where you have to worry about the location of the nearest loo is their worst nightmare. In my experience, although the frequency of loo visits for a pouchee does vary (in the range 4 - 12 times a day), urgency is not usually an issue.
What is important, if you opt for a pouch, is that it is undertaken by an "experienced" colorectal surgeon and at a accredited centre. (The recommendation of the ACPGBI (Association of Coloproctology of Great Britain and Ireland) is that pouch surgery should only be performed in high-volume specialist centres.
There is further reading on this subject on our website which you can read here.
The above is a personal perspective from RLG membership secretary Gary Bronziet, and is not to be construed as medical advice.
A small percentage of people with a j pouch will at some stage experience pouchitis. Symptoms are not dissimilar to those experienced by patients whose original diagnosis was ulcerative colitis (UC). For example, abdominal pain, cramping, increased frequency, urgency, bleeding.
Initial diagnosis is based on advanced history taking and assessment of symptoms. This is why it is important that patients speak to someone experienced in pouches, as otherwise they risk being misdiagnosed. Blood tests and pouchoscopy may be considered subject to the history taking and assessment findings.
In most cases pouchitis responds well to antibiotics - typically, two weeks ciprofloxacin and metronidazole often generating a rapid dramatic response.
For further details of the St. Mark's Hospital recommended diagnosis and treatment protocol, see the article pouchsupport.org/diagnosis-and-treatment-of-pouchitis/
Not ALL, but it is quite common. It may be taken to slow down transit time, thicken the constituency of "output", and reduce frequency.
If taken, it is recommended that it is taken at least 20 minutes before eating otherwise it is ineffective. Some people may also take before bed-time, to reduce night time visits, or before going on a journey.
Dosage varies. Some might take just 1 x 2mg before meals. It is not unheard of people taking far higher dosages up to 16 mg per day. The advice on the presciption advice does not apply to us, however it is recommended that you take advice from your GP, consultant or pouch nurse before taking higher dosages.
A stricture is a narrowing of the bowel that can be caused by various reasons including inflammation of the bowel, formation of scar tissue (fibrosis) following previous inflammation or cancer or radiation treatment. An adhesion is a band of scar tissue that may cause tissues or organs inside your body to stick together. Adhesions may form after surgery or as a result of inflammation.
Severe strictures or adhesions can lead to obstruction of the bowel causing symptoms such as bloating, abdominal pain, constipation, nausea and vomiting.
If you are susceptible to obstruction symptoms, you are recommended to follow the dietary advice issued by the St. Mark's hospital dietary department which you can download below.
If you experience symptoms of obstruction, refer to the chart below. (click anywhere on the picture to enlarge in a new window).
If the symptoms do not stop after 48 hours, or you begin vommiting, you are strongly advised to go to your nearest A&E department.
There is no hard and fast rule, and policy may change between different centres and sometimes the protocol changes over time.
The current advice from St. Mark's is that evident history of cancer/dysplasia in several family generations would be an indication for routine monitoring. This would be assesed by the family cancer/polyposis team. This may take the form of annual or bi-annual pouchoscopies with biopsies taken.
Otherwise, unless you are experiencing pouch problems, there is probably no need for routine pouch surveilance. However, all individual situations are different and you are recommended to get advice from a medical professional.
St. Marks Hospital Pouch Surveillance pathway can be seen below. Click on the image to download.
Biofeedback is a type of behavioural therapy which in the context of pouch care involves bowel and muscle retraining (specifically pelvic floor muscles). It is widely advocated as a first line non-invasive treatment for constipation, evacuation disorders and fecal incontinence. Red Lion Group had the pleasure of hosting Ellie Bradshaw, formerly gastrointestinal specialist nurse and biofeedback specialist at St Mark’s Hospital, now at Princess Grace, who spoke on the subject "“Using Biofeedback to help with Pouch emptying problems”.
You can view the recording on the Red Lion Group YouTube channel here.
Picture - Ellie Bradshaw
The first IPAA (ileal pouch–anal anastomosis) was performed by Sir Alan Parks with his then senior RCO John Nicholls, in the late 1970's and was dubbed the "Parks Pouch". In fact, that pouch configuration was later known as the "W" pouch which related to the number of folds of the ileum to create the pouch. The "W" pouch was typically "hand-sown".
Over time, different configurations arose, notably the "S" pouch and most recently the "J" Pouch. The graphic image illustrates the difference between these pouch configurations.
There are pro's and con's of these different configurations. The "W" pouch had greater capacity and would typically result in reduced frequency. However, it was more difficult to create, used more of the ileum and required hand-stitching. It also may be associated with difficulty emptying. Many of the early pouches were "W" pouches, but it is rarely done these days if at all. The most common/popular form of pouch now is the "J Pouch" which is simpler to create and can be stapled.
All of these pouches may also be referred to as "internal pouch" or "ileo-anal pouch".
Another type of pouch you may have heard of, which pre-dates all of the above is the "Kock Pouch" (or K-Pouch). This was an earlier surgical procedure which was an improvement over a straight-forward stoma with external bag. The end-ileum was folded and used to create an internal resevoir but it was not connected to the rectum. Instead, it was attached to the inside of the abdomen forming a "continent stoma". Instead of an external bag, the Kock pouch is emptied through the stoma using a catheter. This procedure was superseded by the IPAA, but word has it that this procedure is coming back into fashion in some centres.
You can read the historic paper that first described the IPAA here.
This is a familiar situation. We should not be surprised as we are a quite a rare breed in the grand scheme of things. This is why the Red Lion Group created its "Can't Wait / Medic Alert" card. The "Medic Alert" side of the card contains a QR code and link to an article on our website with detailed information about the surgical procedure and lots of relevant information useful to a medic supporting a patient with a pouch. The article also contains a downloadable version of the information that you could print off and give to your GP to put with your records.
If you don't have the card, you can find the information at pouchsupport.org/medic
Patients with an internal pouch do not have a colon and this has implications in regard to how certain medications are absorbed by the body. There are also particular medications that are recommended for the management of the various challenges experienced by pouchees, for example bowel frequency and "pouchitis". All of these issues are addressed in the webcast "Pharmacy advice for pouch patients" presented by Uchu Meade, head pharmacist at St. Mark's Hospital.
You can view a recording of that webcast here.
We are very fortunate at St. Mark's Hospital to have Gabriella Poufou as lead dietician and there is no better source of information on dietary considerations for pouch patients than the article that appeared in our ROAR! magazine and which also contains a link to the excellent webcast by Gabriella Poufou on the subject "Healthy Eating for Patients with a J-Pouch". You can find a link to the article here.
You will also find a downloadable version of her slides.
It depends on the operation you choose to have. If you have laparoscopic or keyhole surgery, your stay may only be a few days. If you have the more traditional three-stage surgical procedure, it usually means 7-10 days for stage-1 (colectomy and ileostomy), 7-10 days for stage-2 (pouch formation and loop ileostomy) and typically just a few days for the final stage-3 (take-down).
About one-in-four - or 25%. Although medication can help to control ulcerative colitis, it doesn’t always and those who need surgery have found it radically improves their quality of life.
This statistics as quoted above may need refining as newer medications are proving more effective in the control of UC and therefore the number of patients suffering with UC and ultimately needing pouch surgery is decreasing.
The NHS in England invites people over 60 to take part in a bowel screening programme and you may have received an invitation to participate. The test requires you to send a poo sample and the test is called a faecal immunochemical test, or ‘FIT kit’ for short. The test detects blood in your poo (blood you would not notice by eye).
However, people with an internal ileoanal pouch (j pouch, w pouch etc) do not have a colon. So, is bowel screening necessary or relevant?
I have raised this question and been advised by respected St. Marks’s colorectal surgeon and the St. Mark’s pouch nurse team that the test is NOT relevant for someone with a pouch and you may safely decline. Of course, taking the test itself will do you no harm, but the results will be meaningless and misleading.
If you are in doubt, discuss with your own colorectal team.
See https://www.gov.uk/government/publications/bowel-cancer-screening-benefits-and-risks/nhs-bowel-cancer-screening-helping-you-decide for details of the test, but this article makes no reference to the significance of having a j pouch.
There are the blood tests that St. Mark's patients usually have done as part of their annual checkup at the hospital.
If you no longer have follow ups at St. Mark's or are not a patient there, then you can request that your G.P. does these as part of your Annual Long Term Condition review.
These tests may be carried out during your routine physical examination or may be used as part of a more comprehensive set of tests. For further information, see https://pouchsupport.org/portfolio/recommended-annual-blood-tests-for-pouch-patients/
I am not sure if there is an official policy, but I can confirm that I purchased one on the disability rights website at https://shop.disabilityrightsuk.org/products/radar-key
It appears that RADAR keys can also be purchased freely on AMAZON, but according to their website, the one on the disability rights website is the only official one!
NOTE: This advice relates to England only. At the time of writing, if you live in Scotland, Northern Ireland or Wales - all prescriptions are free!
Many people transition to a J Pouch following a period when they had a stoma, at which time they would have been exempt from the NHS prescription charge. In most cases, this no longer applies once you have a J Pouch.
You can find full details on the NHS website at https://www.nhs.uk/nhs-services/prescriptions-and-pharmacies/who-can-get-free-prescriptions/.
The main reasons for exemption are :-
- Age (over 60)
- Income dependent (eg. on income support)
- Certain medical conditions which are listed on the NHS website
Of course many people with a J pouch may qualify because of other criteria. For example, if you also have a fistula that requires permanent dressing.
This has been a bone of contention for people with a J pouch for many years. See the article in ROAR! issue number 23 (Easter 2002) which you can download here. You will read how one member successfully claimed exemption, by arguing that his pouch should qualify as it is effectively a fistula which happens to be located within his body rather than on the outside! However, this success is an exception rather than the rule.
The NHS website has details of how to apply for exemption depending on the specific exemption you are claiming under.
If you do not qualify for exemption, then it is very likely that it will be cost effective to apply for a NHS pre-payment certificate (PPC) . See https://www.nhsbsa.nhs.uk/help-nhs-prescription-costs/nhs-prescription-prepayment-certificate-ppc
At the time of writing the charges are:
- £31.25 for 3 months
- £111.60 for 12 months
That equates to roughly £10 (ten pounds) per month. If you are regularly prescribed multiple items, then the saving can be considerable. Alternatively, look forward to your 60th birthday when you will no longer have to pay at all (at the time of writing!)
A common concern for people living with or considering a J Pouch is how this may affect their ability to have children. There was an excellent presentation on this subject given by Sam Evans, of St. Mark's Hospital at the Red Lion Group Information Day in 2019. You can see the recording here.