Red Lion (J Pouch Support)  Group
Red Lion (J Pouch Support)  Group
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Pharmacy & Dietary advice for J Pouch patients
Pharmacy & Dietary advice for J Pouch patients, Q& A featuring Uchu Meade, Consultant pharmacist, and Gabriela Poufou, Advanced Specialist Inflammatory Bowel Disease Dietitian - both at St. Mark’s Hospital, London (the UK National Bowel Hospital).
Both have previously presented at Red Lion Group Information days and zoom webcasts and you can find recordings on this UA-cam channel For the first time, this session featured the two of them together and the format of the whole session was in the form of an interactive Question & Answer, on two of the most interesting subjects for people with an internal pouch (J Pouch or similar) and that is on the topics of DIETARY and MEDICATION advice for J pouch patients.
TIMESTAMPS
00:00:00 Introduction
00:03:23 Vitamin B12 Deficiency
00:33:24 Passing undigested food
00:36:33 Psyllium Husk
00:45:52 Gas/bloating
00:56:46 Hydration/St. Mask’s eMix
01:13:34 Monitoring sodium levels
01:15:10 Taking vitamin Supplements
01:22:49 Strictures/Blockages (to be continued)
01:28:20 Give Feedback
After watching this recording, it would be much appreciated if you could submit your feedback at forms.office.com/e/a4A1nVT44V. Survey results will support Uchu and Gabriela's personal professional development and interaction with patient groups such as pouchees is a very important part of their professional evaluation. If this URL doesn't open, please copy and paste to your browser.
Переглядів: 380

Відео

Janindra Warusavitarne - Surgeon/Patient - a Special Relationship
Переглядів 1392 місяці тому
This webcast was recorded on Wednesday 10th July at 7:30 pm (BST) and features Janindra Warusavitarne, the renowned St. Mark’s colorectal surgeon. Janindra is one of our most popular speakers and many of you will know him personally, or may have seen him on a previous webcast - speaking about advances in pouch surgery. On this occasion, the focus was on the importance of the surgeon/patient rel...
Preparation for Surgery at St. Mark's Hospital
Переглядів 3852 місяці тому
Psychological preparation for Surgery at St. Mark's Hospital featuring Dr Sonia Frearson, Consultant Clinical Psychologist and head of the St Mark’s Psychological Medicine Unit (PMU). Recorded on behalf of the Red Lion Group (pouchsupport.org) on 21 June 2024.
Ellie Bradshaw - Biofeedback management for J pouch
Переглядів 5313 місяці тому
Biofeedback management for J pouch Presented by Ellie Bradshaw - Pouch and Stoma Care Nurse at St Mark’s Hospital London. Recorded on 29 May 2024 on behalf of the Red Lion Group. The latest webinar in the RLG 2024 series took place on 29 May with Ellie Bradshaw talking about Biofeedback, a unique method of pouch emptying. Over fifty pouchees attended the event from the comfort of their own home...
Prof John Nicholls - "40 years of colorectal surgery"
Переглядів 2215 місяців тому
We are delighted to announce that we will be kicking off our webcast season for 2024 with a talk from Professor John Nicholls, considered to be the the father of the ileo anal pouch (J Pouch). The Red Lion Group will be repeating its popular webcast series in 2024, providing an opportunity for J Pouch patients to see and hear from the foremost experts in the field of J-pouch surgery and the cha...
Uchu Meade - Pharmacy advice for J Pouch patients
Переглядів 603Рік тому
Uchu Meade, Lead Pharmacist at St. Mark's Hospital, London, speaking on behalf of the Red Lion Pouch Support Group, recorded on 10th August 2023. In this talk, Uchu Meade explains how the altered physiology in pouch patients affects the absorption of different medications and looks at the different medications that are most frequently prescribed to pouch patients in regard to the common challen...
Advances in Robotic Colorectal Surgery - featuring Kapil Sahnan and Jason Bacon.
Переглядів 412Рік тому
St. Mark’s Hospital has been pioneering a research programme into the use of robot technology in colorectal surgery, financially backed by St Mark’s Hospital Foundation. In this talk, Jason Bacon (CEO of St. Mark’s Hospital Foundation) and Kapil Sahnan (Consultant Colorectal surgeon at St. Mark's) will give an update on this fascinating project. Compares traditional open surgery with laparoscop...
St. Mark's Hospital Pouch Nurse Q&A featuring Petya and Rali Marinova
Переглядів 316Рік тому
St. Mark’s hospitals award winning pouch nurse team featuring pouch nurse specialists Petya Marinova and Rali Marinova who were talking about "New trends and Innovation in Pouch Care and Ongoing support' followed by a Question & Answer interaction with an audience of people with a ileoanal pouch (j pouch) or considering pouch surgery. Some of the subjects discussed in the Q&A included :- - Deal...
Janindra Warusavitarne - Advances in laparoscopic approach to J pouch surgery
Переглядів 476Рік тому
Janindra Warusavitarne, a consultant colorectal surgeon at St Mark’s Hospital in London, is a pioneer in laparoscopic pouch surgery (sometimes known as keyhole surgery). Janindra, who is a patron of Red Lion Group, will compare the laparoscopic approach with the more traditional open J pouch surgery techniques. This video was recorded on 16th May 2023 on behalf of the Red Lion Group. About Mr J...
Ellie Bradshaw - Biofeedback
Переглядів 977Рік тому
Biofeedback and the importance of the pelvic floor in pouch care. Ellie Bradshaw, formerly gastrointestinal specialist nurse and biofeedback specialist at St Mark’s Hospital, now at Princess Grace. Ellie is also CNS (Clinical Nurse Specialist) Biofeedback, The Biofeedback Service at The London Digestive Centre.
Fistulas by Toby Hammond
Переглядів 599Рік тому
Toby Hammond is Consultant General & Colorectal Surgeon,, specialising in colorectal cancer, inflammatory bowel disease, diverticular disease and hernias. In the recording on behalf of the Red Lion Group, he talks about Fistalas.
Ileoanal pouch formation and revisional surgery for pouch problems with Valerio Celentano
Переглядів 863Рік тому
Valerio Celentano is Consultant Colorectal Surgeon at Chelsea & Westminster Hospital NHS Foundation Trust, and Head of J-Pouch One Stop Clinic at Chelsea & Westminster Hospital. Ileal pouch-anal anastomosis (IPAA) after total proctocolectomy (removal of entire large bowel and rectum) is a surgical procedure for ulcerative colitis refractory to medical treatment and majority of patients with fam...
Search Content on Red Lion Group website.
Переглядів 872 роки тому
This is a quick demo of the SearchWP plugin on the Red Lion Group website (pouchsupport.org).
J-Pouch Dysfunction - Professor Sue Clark
Переглядів 2,4 тис.2 роки тому
Professor Sue Clark (Consultant Colorectal Surgeon, St Mark’s Hospital and Professor of Practice (Colorectal Surgery) Department of Surgery and Cancer Imperial College, London) talking on the subject of J-Pouch dysfunction followed by Q&A. This webcast was recorded on 23 February 2022 on behalf of the Red Lion Pouch Support Group. See pouchsupport.org for further videos and resources relating t...
Treatment of Fistulae associated with J Pouches - Phil Tozer & Lillian Reza
Переглядів 1,3 тис.2 роки тому
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" on behalf of the Red Lion Group. Followed by Q&A. This webcast was recorded on behalf of the Red Lion Pouch Support Group. See pouchsupport.org for further videos and resources relating to J-Pouch (also known as il...
"Crouch for your pouch", featuring Ellie Bradshaw, Colorectal/Biofeedback Nurse.
Переглядів 2 тис.2 роки тому
"Crouch for your pouch", featuring Ellie Bradshaw, Colorectal/Biofeedback Nurse.
Petya Marinova - Pouch nurse specialist at St. Mark's hospital, London.
Переглядів 3143 роки тому
Petya Marinova - Pouch nurse specialist at St. Mark's hospital, London.
Healthy eating for Patients with a J Pouch - Gabriela Poufou, Dietician St. Mark’s Hospital,
Переглядів 3,5 тис.3 роки тому
Healthy eating for Patients with a J Pouch - Gabriela Poufou, Dietician St. Mark’s Hospital,
St. Mark's hospital clinical services at Northwick Park, Central Middlesex and beyond -Jason Bacon
Переглядів 2733 роки тому
St. Mark's hospital clinical services at Northwick Park, Central Middlesex and beyond -Jason Bacon
Managing a J pouch behaving badly - Professor Ailsa Hart
Переглядів 1,8 тис.3 роки тому
Managing a J pouch behaving badly - Professor Ailsa Hart
Medication advise for j Pouch patients. Uchu Meade, Head of pharmacy at St. Mark's hospital.
Переглядів 5223 роки тому
Medication advise for j Pouch patients. Uchu Meade, Head of pharmacy at St. Mark's hospital.
Evolution of modern surgery - Professor John Nicholls
Переглядів 6843 роки тому
Evolution of modern surgery - Professor John Nicholls
Through the keyhole - latest developments in J pouch surgery - Janindra Warasavitarne -
Переглядів 4843 роки тому
Through the keyhole - latest developments in J pouch surgery - Janindra Warasavitarne -
J-Pouch Surgery - Recovery Time, Risks and Benefits
Переглядів 24 тис.4 роки тому
J-Pouch Surgery - Recovery Time, Risks and Benefits
History and evolution of the internal j pouch procedure, Professor John Nicholls.
Переглядів 6284 роки тому
History and evolution of the internal j pouch procedure, Professor John Nicholls.
Life with a J-Pouch, Zarah Perry-Woodford, Consultant Nurse Pouch & Stoma Care St. Mark's Hospital.
Переглядів 1,2 тис.4 роки тому
Life with a J-Pouch, Zarah Perry-Woodford, Consultant Nurse Pouch & Stoma Care St. Mark's Hospital.
Clinical Services at St. Mark's Hospital with Jason Bacon, CEO of St. Mark's Hospital Foundation
Переглядів 954 роки тому
Clinical Services at St. Mark's Hospital with Jason Bacon, CEO of St. Mark's Hospital Foundation
The link between the brain and the gut - Dr. Yoram Inspector, Consultant Psychiatrist
Переглядів 9124 роки тому
The link between the brain and the gut - Dr. Yoram Inspector, Consultant Psychiatrist
Latest innovations in J-Pouch Surgery - Janindra Warusavitarne
Переглядів 5964 роки тому
Latest innovations in J-Pouch Surgery - Janindra Warusavitarne
Fertility, fecundity and pregnancy with a J-pouch - Sam Evans, St. Mark's Hospital
Переглядів 4056 років тому
Fertility, fecundity and pregnancy with a J-pouch - Sam Evans, St. Mark's Hospital

КОМЕНТАРІ

  • @anneclayton7274
    @anneclayton7274 Місяць тому

    Brilliant what these robots can do, just wish my operation could be done in my hospital robotically, thank you for sharing this podcast

  • @RogueJester1313
    @RogueJester1313 2 місяці тому

    After 2 minute just fast forward to the end, what load of b---ks🤦‍♀️

  • @PeterJBatza
    @PeterJBatza 3 місяці тому

    I had my pouch surgery in 1991/92 after having UC beginning at 25 years old for 12 years. Anyway, I wish there was information like this out. When I had my surgery. Surgery. Was provided very little information. I want to congratulate you because so much of what you said is right on even simple things like not eating for 3, 4, or 5 hours before going to bed so that you can empty out and get a good night's sleep. Seem simple. Anyway, thank you for the video. Excellent!!

  • @zsvlog7899
    @zsvlog7899 3 місяці тому

    Sir. I have end illiostomy. Have a possible reverse . I need u contract number

  • @AnnaG-i4e
    @AnnaG-i4e 4 місяці тому

    I am so excited to have finally found any information on diets for a J Pouch. I have subscribed to this channel and will be back with more comments.

  • @YAHREIGNS7
    @YAHREIGNS7 5 місяців тому

    WOW!!!!! Prof Nicholls u look so well .❤🫶🏼

  • @thecapedgremlin0001
    @thecapedgremlin0001 7 місяців тому

    I were misdiagnosed for about 4 years (by a local GP who ignored my complaints, I were 19 years old then) before I was told (by specialists), that "the only cure for ulcerated-colitis was surgery otherwise I would bleed-out and die!" After two years of getting my body ready for the surgery (year 1994) via karate training made me super-fit (I would not let them touch me till then). After surgery it was when I learnt they removed my large bowel and rectum as they said it was all bleeding rore without a mucus-lining. Its all-about pain management and physiotherapy/exercise, then for me being-stuck in hospital for nearly 3 months because of surgery complications of an abscess from the main surgery and the second one a air-bubble after closing the colonoscopy or where the poo-bag was. The first surgery complication meant I were with a ileostomy-bag for nearly 2-years, instead 3 or 4 months and organising the logistics of having enough poo-bags to last till the infection had completely gone was travel-time complicated! I have a frequent toilet use now still but not as bad as it were over ten years ago its now 2024, I couldn't even get my drivers license till 2015 and were ever I were on my travels I have knew where public toilets are. The surgery: They create a pouch from the small intestines area called the ileum that eventually stretches-out, but I still have constant diarrhoea hasn't stopped though its much better now because I have adapted on knowing what foods trigger a bowel-attack or even too much food of little amounts can cause issues. I also still exercise and recently last year got covid-19 that killed my fitness so I had start that over again. If you do have similar issues than I recommend you reduce your overal red-meat instake and sugar instake aswell (white meat is not too bad), raw veggies and fruits can even block the bowel at the pouch entrance of which causes me nearly 4 hours of massaging awhile going to the toilet to unblock it. One matter doctors in Aussie do not recognise is scar-tissue nerve-endings and the pain they cause, the only way to get rid of that is through painful massaging and exercise that effects that area! Now if I get inflamation of my bowel its called pouchritis that only I can get.(synopsis).

  • @dimplz007
    @dimplz007 8 місяців тому

    How to increase appetite after surgery?

  • @michaelsix9684
    @michaelsix9684 Рік тому

    I had one put in a yr. after my colon was removed, it lasted over 4 yrs. and I had pouchitis constantly, and so it was removed and I returned to the ostomy bag, doing better, still don't like this but j pouch was always causing issues , blockages, diarrhea, and dehydration, I had UC for 36 yrs. then colon cancer hit at 56, j pouches have a high failure rate if you are older, be careful

  • @sawyermaitland
    @sawyermaitland Рік тому

    How could I get referred to St Mark's Hospital? Getting pouchitis about 4 times a year, taking 50,000u vitamin d weekly for 6 weeks and 35mg of folic acid weekly for 3 months, I'm quite active, 30 mins of cardio daily, 31" waist

  • @nightshadehelis9821
    @nightshadehelis9821 Рік тому

    I lived five years with a stoma. Life for me is so much better with a J pouch. It's not perfect, but it gave me my life back. Nothing was worse than having a bag leak while sleeping or constantly getting flagged by TSA when flying. Being said, recovering from the first surgery was brutal, but absolutely worth it. 😊

    • @JPzizou
      @JPzizou 4 місяці тому

      Any tips on recovery and how you over came them

  • @mornahassan4732
    @mornahassan4732 Рік тому

    Fascinating!

  • @Randy-life
    @Randy-life Рік тому

    I have a fistula in the annas - the pouch works ok until the fistula acts up.

  • @katrinawest487
    @katrinawest487 Рік тому

    I’m due to have this operation after my ileostomy this is good to know, thank you

  • @OBANAIZ
    @OBANAIZ Рік тому

    Thank you Peter...you're very kind !

  • @peterflitcroft9756
    @peterflitcroft9756 Рік тому

    Ellie is always easy to listen to and a nice sense of humour as well.

  • @frittiesnz8669
    @frittiesnz8669 Рік тому

    Thank you for such clear and comprehensive information! Absolutely priceless.

  • @MelissaBeadle-io4hu
    @MelissaBeadle-io4hu Рік тому

    Dr yoram inspector was my therapist, he was great but he disappeared without a goodbye. That’s not ok x

  • @sarahturnbull7610
    @sarahturnbull7610 Рік тому

    As far as I can tell from asking around surgeons and fello j-pouchers, surgeons in Australia who do j-pouches only do about four a year. I don’t know of any figures being published here like the ones you showed.

  • @sarahturnbull7610
    @sarahturnbull7610 Рік тому

    I have a rare complication called megapouch (in the US). Not sure whether the same term is used in the UK, or it is just called distended. Only 23 cases ever at the Cleveland Clinic, plus me over here in Australia. It is a late onset failure. It was quite a shock after 14 years of no major problems, especially as it happened overnight.

    • @giovannitonini492
      @giovannitonini492 9 місяців тому

      I advise you to have the operation either by Wexner or by Feza Remzi. You can't find better surgeons in the world than these

  • @yvonnericcini9855
    @yvonnericcini9855 Рік тому

    Good Evening. I had my ileo anal pouch operation in 1997.i have bene very lucky.. . Would having my gallbladder removed affect my pouch (J)......... digestione.... Thankyou.

  • @Kru5hit
    @Kru5hit Рік тому

    Hi - thank you for this presentation. question - I had done colonoscopy in two countries and every time report said I got UC. I ended up having a jpouch surgery in 2019 and 3 years later I developed a complex fistula. Currently all the reports indicate (but not confirmed yet) that I got crohns. And you said in your video it changed over time or you always had crohns diseases. I find this very hard to believe that multiple different pathology doctors repots can be wrong with diagnosis over the years. Just bit shocking to me. Anyways, all I am trying to know is what is the best solution here? I am sure you probably seen many people with similar case like mine and I wonder what treatment works the best? Was it control the inflammation using biological and surgery for fistula or go for stoma for life? I really don't mind following medical treatment and go for fistula surgery but I wonder if end result down the road after 3-5-10 years be - going back to stoma forever. Mine as well just do it now and control crohns using biological. Just overall trying to understand how many patient with similar situation ended up having stoma? Hope this make sense. Also, if possible I would love to get in touch with you to discuss this further. Really appreciate your time.

    • @famvdeb774
      @famvdeb774 12 днів тому

      Hi there! I am currently experiencing the exact same situation as yours and I was wondering about how things are going for you now. I hope you read this! Kind regards, Anne

    • @Kru5hit
      @Kru5hit 11 днів тому

      @@famvdeb774 hello there, I am sorry you going through this. It hasn’t been easy for me but my new GI from Penn medicin put me on biological “stelera” and I am on every 6 weeks. Going for scope tomorrow to see how it looks inside. My fistula is still there but it’s not leaking or giving me pain right now. It’s more like a tunnel fistula with no another opening or they can’t find it or don’t want to go too deep to find where another opening is. Biological is helping me for sure but not 100% yet. I still have symptoms but I been able to eat good and gain weight. Able to work out, ran half marathon and have done a lot more challanges that I never thought I would be able to do it few years ago. There is a hope. Don’t give up. Happy to talk if you have any other questions.

    • @famvdeb774
      @famvdeb774 10 днів тому

      @@Kru5hit Thank you so much for your answer and kind words. And I am so happy for you, that actually sounds pretty hopeful. A marathon- wow! 💪🏻 I will have an MRI at the end of October to see what’s going on inside. But I saw this presentation and it made me pretty sad, also the fact that this is called ‘pouch failure’. I had my pouch 15 yrs ago, never any big problems, but I was convinced that this was it after all the misery and operations all these years ago. After seeing this a stoma seems a real scenario again :( I now have babies and reaaally don’t want to be away from them etc. So your positive words are very welcome! I will screenshot your message and take it with me to the doctor.. who knows (I am from the Netherlands, maybe your doctors work more advanced) Thank you, all the best for you.

    • @Kru5hit
      @Kru5hit 10 днів тому

      @@famvdeb774 yes, I just had scope today and I am told that I am doing clinically good but endoscopically not so good. They believe the biological "stelera" that I am on isn't working well enough to keep me in remission. So my pouch is full of inflammation currently and some part of small intestine. My doctor is planning to switch me to new biological call "skyrizi". Hopefully that can put me in remission endoscopically. It's a dream of mine to be on remission once in this life. Hopefully your doctor help you find something that can work on you and you don't have lose pouch. I am in USA and seeing a doctor at penn medicine. Feel free to reach out if you have any questions.

  • @daniellechaffey338
    @daniellechaffey338 Рік тому

    I wish I waited for my second surgery now because I didn't know that if waited it might have been easier now because of the infection but might be over soon give me hope

  • @daniellechaffey338
    @daniellechaffey338 Рік тому

    Thank you for making this video. I agree on being mentally ready for surgery is very important, I got misdiagnosed 😞 . I had emergency surgery 5 days after being diagnosed with Ulcerative colitis. I didn't know at the time what was signing up for because I didn't want surgery 😕. Worst nightmare came to life having to put a sleep and being in more pain from surgery, no break for that. But I wanted to live and they gave me the option to save me and appreciate the surgeon that was wanted to save me, and stoma aren't that scary as they say, they are inconvenience at times but sometimes i think it was easier but mentally hard. I love my belly sleeps 💤

  • @chinlesswonderkid
    @chinlesswonderkid Рік тому

    Even though I wouldn't be based in the North of Ireland / UK, I wish I could be seen by this Dr.

  • @jawadkenzane
    @jawadkenzane Рік тому

    Thank you very much for the video. Excuse me. I have a question. My child, one year and two months old, had previously had an abdominal fasciotomy. The doctor told me that she suffers from paralysis of the entire colon. Can this operation be performed at any age? Because in my country they told me that I have to travel with it outside the country in order to tie the intestines to the anus. Please answer me.

  • @jawadkenzane
    @jawadkenzane Рік тому

    Thank you very much for the video. Excuse me. I have a question. My child, one year and two months old, had previously had an abdominal fasciotomy. The doctor told me that she suffers from paralysis of the entire colon. Can this operation be performed at any age? Because in my country they told me that I have to travel with it outside the country in order to tie the intestines to the anus. Please answer me.

  • @markgardiner1767
    @markgardiner1767 Рік тому

    THANK YOU👍👍

  • @pradeepkumar-sx1ty
    @pradeepkumar-sx1ty 2 роки тому

    Sir my father underwent a surgery yesterday where they joined the ileum to rectum head to head. Earlier they were discussing of doing j pouch. My question is shall we still expect the same results?? Like 5-6 bowel movements per day or it will be more. Also suggest how much poop will be holded there as the rectum inside diameter must have been equal to that of ileum in order to join head to head. His rectum was all good. Also we could have opted a j pouch and sewd that to rectum in order to hold more poop and better quality of life??

  • @aumbhai
    @aumbhai 2 роки тому

    Sue Clark Has done my surgery and form my j pouch , she repair or redone my pouch in 2011 , And last few years it is a failure now , I have tried Medena catheter, But its no now , But now using aquaflush, but just buy time now then will be stoma ,

    • @evelynlazo1957
      @evelynlazo1957 2 роки тому

      hey i hope you see this but i also have a j pouch and feel like it failing can you explain your symptoms?

  • @mitseraffej5812
    @mitseraffej5812 2 роки тому

    I have had a pouch for almost 35 years, way longer than I had a normal colon. I have had many problems but still going and still working as an airline pilot. Interestingly enough there is another pilot in the company that I have flown with that also has a pouch, but only for a few years. I suggested that this could be a media photo opportunity for the company as they sometimes do when two female pilots fly together. I’m sure our crew pairing was far more unique than two female pilots. On a serious note there is much new age mumbo jumbo about the importance of gut flora to well being including mental health, yet I have found little information on the gut flora present in those with a pouch and if there is any significant difference.

  • @metokamo3699
    @metokamo3699 2 роки тому

    so should i get a jpouch or not, i think for me (m 21) who does lots of sports, football, cycling, boxing. Its like impossible to life with this bag, Im desperate.

    • @mitseraffej5812
      @mitseraffej5812 Рік тому

      I had a bag for a couple of years as a young man and I continued to surf. Overall the decision to have a pouch was good for me but after 35 years of living with the pouch problems are increasing. Like most things in life it’s pay your money and take your chances.

  • @kehindeimam7244
    @kehindeimam7244 2 роки тому

    I proudly appreciate Dr osaye for bringing his herbal medication for hemorrhoids, I didn’t believe in herbs,but for the fact that it cured my Hemorrhoids,I do believe in it now, and I also thought herpes couldn’t be cured,just get the right source for anything you need and you’ll get it..

  • @melindamae7969
    @melindamae7969 2 роки тому

    Clear & honest, thank you Professor Clark.

  • @christinelawton6322
    @christinelawton6322 2 роки тому

    I am 75 and my pouch was 20 years old last year! I had my first surgery in 1978 when I had all my colon removed but not the rectum. Having developed dysplasia in 2000, I had the rectum removed and a Jpouch formed. I had an ileostomy as described, while everything was healing, and then it was taken down. I have had a couple of episodes of obstruction caused by adhesions but apart from that, I have had absolutely no trouble whatsoever with my pouch. I can eat virtually anything. I never have night leaks and everything functions fantastically. I worked at the time of my op on disciplinary hearings and in criminal courts, as the official shorthand writer (record keeper), and thus wasn't free to just pop to the loo without asking. But I managed all right, never had to ask for a break and everything worked like clockwork. When I had UC, I didn't know what it was like to spend a day without severe pain and it was pure heaven not to have any more pain and to feel well. I had my operation performed by Mr Al Windsor at St Mark's Hospital, assisted by Mr Ed Westcott. The whole team were amazing. Of course keyhole surgery wasn't around then for these ops and it's incredible that they can do it now. So thumbs up for pouch surgery and I hope everyone who's contemplating it will get on as well as I have - and I still work in my capacity as a Fellow of the British Institute of Verbatim Reporters!

    • @jonathanmiller5232
      @jonathanmiller5232 Рік тому

      ​@@user-ky6yu9xl4zHow long have you had yours? And, if you don't mind me asking, why did you need it done and what is it like now?

    • @jonathanmiller5232
      @jonathanmiller5232 Рік тому

      I am very glad it worked out for you. I may need this surgery and I am quite worried about it and the potential for having excess bowel movements in a day, etc. Did it take practice to get used to it? How does it work for you, if you don't mind me asking?

    • @firefeethok_tui2355
      @firefeethok_tui2355 5 місяців тому

      @@jonathanmiller5232i also hve one. My pouch is 25 yrs old. This lady’s comment describes essentially my course. The first year and a half were brutal for me. I actually had to have a revision. I had several ball obstructions, was completely liquid/water all of the time, I had to learn how to be continent again, but it was possible with Keagle exercises and light exercise. I would say it’s definitely worth it but you’re gonna need a good amount of time for recovery. The incontinence that you experience improves overtime, but it doesn’t happen quickly. I eat pretty much, exercise and occasional bathroom pronto but I still do pretty good. it’s a brutal recovery and extended of time getting used to it so you can learn and adapt, but definitely worth not having chronic discomfort

  • @jorgeespinosa3179
    @jorgeespinosa3179 2 роки тому

    Truly recommend J-Pouch surgery! Do away with all the UC episodes, symptoms and medicine! I had my J-Pouch surgery in 2007 by Dr. Dennis Meyer. Excellent surgeon! My life completely turned around after the surgery. I may use the restroom a few more times than your normal person, but besides that, I am the same man before I was diagnosed with UC. Get the surgery. You will not regret it!

  • @mustafam956
    @mustafam956 2 роки тому

    Hi Red Charity Group, can you please post the documents in this lecture like the Medena catheter instruction manual? Also, I am a Canadian who has had pouch failure caused by paradoxical contraction. Unfortunately pouch care is primitive and biofeedback or catheter is not available here. Can a non UK citizen come to St. Mark’s and do biofeedback etc. paying out of pocket?

    • @PouchSupport
      @PouchSupport 2 роки тому

      Hi Mustafa. Sorry for the delay in replying. Can I recommend you submit questions directly to the Red Lion Group at info@pouchsupport.org and/or, if you use Facebook, join our FaceBook Group - search for J-Pouch Support (UK Specific). Don't worry we have a number of overseas members. As far as your question is concerned, I am aware that St. Mark's in the past has treated private patients from overseas. Unfortunately, these are not normal times due to COVID. My advice would be to make direct contact with one of the St. Mark's consultants. Many of them see private patients, either at St. Mark's or other private facilities in London, such as the London Clinic.

  • @philippafrench9213
    @philippafrench9213 2 роки тому

    A very valuable presentation. Really appreciate Sue’s honesty - but it’s really frightening to know I will probably head into old age with pouch problems. Knowing what I know now, the Fiesta beats the Ferrari!!

    • @PouchSupport
      @PouchSupport 2 роки тому

      To put things into perspective, Sue will have been seeing predominantly people with Pouch problems. There are many people with Pouches out there that are doing nicely and never come into contact with St. Mark's or Sue Clark And remember as a specialist Pouch centre, the worst Pouch problems end up being referred to St. Mark's where Sue is located. My own pouch is 35+ years old, and we are aware of people with Pouches over 40 years old still doing well. Gary Bronziet.

  • @edwardkennedy9919
    @edwardkennedy9919 2 роки тому

    People Try the carnivore diet

  • @maryhemmings3539
    @maryhemmings3539 2 роки тому

    I wish I had seen this early on when suffering from UC because it really sums up all the fears and potential problems as well as the benefits of surgery. My pouch surgery was done in Bristol in 2003 by Mr Tony Dixon who was brilliant. Two stages and the second was to close the ileostomy. It took about a year for me to recover from some pain and frequency and now I feel very well and very grateful.

    • @jayasree2033
      @jayasree2033 2 роки тому

      How are you?Do you have pouchitis?My husband has been suffering with chronic pouchitis since 4 years and recently had fistula also.Can you help me in suggesting anything about maintenance of pouch?

    • @rulotex
      @rulotex 2 роки тому

      @@jayasree2033 Hi, I had mine created in 2004. I´ve had pouchitis sometimes and this depends on many factors, mainly on certain kind of food, so avoiding those kind of food (your husband will know what kind of food to avoid, if pouchitis is coused by them) would prevent pouchitis suffering. Although, once pouchitis appears my doctor prescribes me antibiotics (ciprofloxacin) for a week or so, and then disappears. Hope this can help.

    • @jayasree2033
      @jayasree2033 2 роки тому

      @@rulotex Thankyou for replying.He is now under strict diet..eating only pouch friendly foods.He has ulcers in pouch which are not going.I just hope he recovers

    • @karnipraveen2521
      @karnipraveen2521 Рік тому

      ​@@jayasree2033Now how he is?

    • @average312
      @average312 8 місяців тому

      ​@@jayasree2033Is he OK now.

  • @mahiravel7733
    @mahiravel7733 2 роки тому

    the sound is not good I am quite disappointed

  • @captaindbheadcase1303
    @captaindbheadcase1303 3 роки тому

    As the pouch gets older the small intestine gets better at absorbing water. This invariably means that the output is thicker and thus more difficult to empty. Irrigation should be seen as a go to and part of everyday pouch life when this happens. My personal experience is it will prevent pouchitis .

  • @RogueJester1313
    @RogueJester1313 3 роки тому

    Hello Petya Marinova…..you was my stoma nurse at Northwick Park Hospital when I was their 18.8.2020 to 13.11.2020… thank you so much my angel for looking after me… I don’t know if it was you or your twin… I am doing well and have learnt so much more about my stoma… I can do everything now and Brocken my 150mph record on one of my motorbike, remember when I was in hospital I could could barely move but now I run, walk, go to work and even play a bit of rugby lol. Thank you so so much for looking after me their because I nearly did give up on life their🤷‍♀️. I think of you guys every day and say a prayer for you all…. Bless you Barry Leary ❤️

  • @RogueJester1313
    @RogueJester1313 3 роки тому

    Hi, I’m nearly a 1 year stoma bag wearer and found today’s intake and functions around the matter very interesting, I was given a booklet in hospital about what foods to eat but found out on my own what to eat and not too as we are all different, thank you for this video, it all helps in my stoma life. Barry.

  • @hughodonnell8839
    @hughodonnell8839 3 роки тому

    Good video

  • @linmi2246
    @linmi2246 3 роки тому

    I've had the J-pouch surgery in one stage. That was back in 1997!

    • @jayasree2033
      @jayasree2033 2 роки тому

      How are you now?Is J-pouch well managed?Do you have pouchitis or any other complicatiins with pouch?Can you suggest me anything about pouch management?

  • @TapeShapes
    @TapeShapes 3 роки тому

    Thank you. Very informative. Got the pouch now the wait to take my stoma down, f&$x can’t wait. Yaaaaaay. Oh anybody reading this, at my stage, should watch out for dehydration. It’s a real problem without a colon. Drink isotonic liquids avoid caffeine. See you you on the flip side.

    • @DavidMorseMusic
      @DavidMorseMusic 2 роки тому

      Could not agree more about the dehydration. I spent 7 months in and out of the hospital because no matter what I did I could not stay hydrated after having the j pouch created (but left closed with a temp stoma). Dehydration is really scary. Mine was so extreme I lost nearly 100lbs in 4 months due to it. Fortunately, my small intestine finally slowed down and adapted. Literally withering away like that is absolutely terrifying. Approaching 1.5 years since the j pouch was opened and my stoma reversed. Been doing fantastic since them.

  • @englishrose2055
    @englishrose2055 3 роки тому

    I'm watching as I'm having jpouch surgery I've had the total colectomy a few years back. I'm excited and scared. I've been researching and I have the book. 💜

    • @DavidMorseMusic
      @DavidMorseMusic 2 роки тому

      Had mine created in July 2020. While the adjustment to life with it took some time (and is still developing), it is absolutely better for me than a stoma.

    • @narayanpatel972
      @narayanpatel972 10 місяців тому

      Hey my mother undergoes this surgery before 15 days..I want some important details .kindly share me your Instagram I'd aur WhatsApp so that I can know

    • @englishrose2055
      @englishrose2055 10 місяців тому

      @@narayanpatel972 what would you like to know?

  • @lisasamuels8389
    @lisasamuels8389 3 роки тому

    I’m on a plant based diet , with a internal pouch as also have Chrohns disease, so have to avoid sugar, wheat, processed, caffeine & dairy, as they all aggravate me , and then I’m well , I do eat potato, rice ,Quinoa, beans & pulses,as well , but I just know I don’t get a great deal of minerals , as toilet frequently, any advise ??

  • @noelhudson3247
    @noelhudson3247 3 роки тому

    Do anybody know about Erectodom Secrets? Does it really work? I hear lots of people achieve total control over their erectile dysfunction with this popular erectile dysfunction natural treatment.