Join us for an eye-opening discussion on Inflammatory Bowel Disease (IBD) where we’ll explore the intricacies of diagnosis, treatment options, and coping with this persistent condition.

    I’m delighted to have Dr. Alaa El-Hussuna, a renowned expert in the field of IBD, join us for this insightful conversation. He will share his extensive knowledge and experiences, provide helpful guidance, and answer any questions you may have. Let’s come together and learn more about this condition that affects so many.

    What to expect:

    Demystifying IBD: We’ll explore the different types of IBD, common symptoms, and the latest diagnostic approaches.

    Treatment options: Learn about the various medical and surgical interventions available, their effectiveness, and potential side effects.

    Living with IBD: We’ll discuss managing the emotional and lifestyle challenges associated with IBD, including tips for coping and thriving.

    Open Q&A: Your questions are our priority! Submit your questions in advance or during the live event to gain personalized insights from our expert guest.

    Whether you’re living with IBD, a concerned loved one, or simply want to learn more about this prevalent condition, this live event is for you.

    Don’t miss this opportunity to:

    Gain valuable knowledge and practical tips from a leading IBD expert.

    Connect with a supportive community of individuals impacted by IBD.

    Empower yourself and others with understanding and resources.

    Together, we can illuminate the path towards a brighter future for everyone affected by IBD.

    For personalized support as a Holistic Health Coach, book a free discovery call at https://www.awakentothenow.com/schedule-call

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    in the now it’s uh 4:00 let’s see how people are going to start joining the meeting e so that’s Sue one of my clients is here hello Sue hello Leona how are you doing today I’m great thank you I haven’t put my headphones in yeah I’ve just come back from church very good to see everybody here nice to see you too I’ll put my headphones in sure we’re going to be waiting a few minutes to see who’s going to um join the meeting that’s great yes well these things are um you know a bit um they’re always a bit hit and miss with time zones and you know other commitments for people I’m lucky at the moment I I don’t have too many but the church is obviously a main stay and I’ve just come back from there and they’re very supportive so that’s you know that’s good yeah you look very smart Leona thank you thank you sir and I like I like the background Prince Solomon designed it for you didn’t he yeah he is yeah I saw that on your feed um but yeah I mean and it’s very nice to meet Al husana yeah Dr Al Al alasa yeah ala right right so if you want to ask any questions for the moment until everyone joins well I think my main my main question is um is it possible to go into remission because I’m finding um um I can um I can tolerate a bit of gluten can’t I leoner it’s not like you know so I mean so long as I’m careful about my soy and I eat small portions and I eat healthily like you told me to do and I take my medication because of course I’m taking the pentacam salesin so I’m on an anti-inflammatory um medication and I have my diagnosis when I was 38 and I’m 54 now so I guess um um you’re going to say to me that um I don’t know if I’m okay I’m okay I mean I’ve still got to have my colonoscopy to make sure everything is as it appears to be but I don’t know what do you think Leona well um like to said you’re not uh strictly sensitive to gluten so sometimes you have gluten and it’s it’s okay um Sue Dr was suffering from a lot of bloating flatulence and right gas and I have yeah and in the past I have had blood in my motions and I’ve had um colonoscopies and they diagnosed ulcerative kitis so they put me on the pentas saline but I had my diagnosis when I was 38 years old and I’m 53 I’m 4 on May 1st now so but yeah I mean I was having a lot of issues when I came here but my diet was very poor indeed and Leona has improved at no end with her dietry advice and um she’s put me on to all the appropriate um websites where I can get the right recipes and what I should be eating and indeed this morning when she was whatsapping me I was eating porridge with natural yogurt and fresh blueberries which you know is nice and because it was like a sachet that I it made sure it could controlled my portion size it was a nice small portion rather than a massive Bowl so you know I think Leon has been amazing yeah yeah absolutely amazing thank you do you have specific questions for Dr Al regarding any of uh the symptoms the treatment um well I think um if you haven’t got any blood is it fair to say you’re not in too much trouble or you don’t know you’ve still got to have a look at what’s going on in there just to be sure well blood in in this tool is just one of the symptoms so maybe you don’t have blood but you have other symptoms uh so uh so symptom symptomatic free what we call it symptomatic free if you are free from symptoms so you are in remission but if I was getting the bloating and the um and the diarrhea and the flatulence then um probably not but I mean even though I’ve Reser but I mean Leona has already advised me anyway I mean although would seem I am in remission because in England for some reason they they they’ve only been giving me colonoscopies every five years and I think I missed last year because of unforeseen circumstances so um hopefully I’ll be having a a colonoscopy this year in the next couple of months just as a checkup yes good idea to have the colonoscopy to to check up because if you have sto the symptoms despite the dietary modifications so check cup in the hospital needs to be done maybe there there is to modify the treatment so that it can give you better uh freedom from symptoms yeah well I think that but or if anything the opposite because I think I’ve I’ve adhered to so little of the diet leoner has given me primarily changing to soy milk ra soy drink rather than um normal milk and and cutting down my portion sizes and eating fresh healthy food um potentially even maybe um reducing down the pentac if there aren’t any other symptoms in there because obviously I mean I’ve been on that pentas salazy now since I was 38 about 38 years old so you know I mean all these drugs they can have long-term effects I presume if you’re on them forever yes of course um the the less drugs the better so we we always tell our Junior doctors that drugs are useful poisons so they are they are just poison but they are useful poison so we use them with ction yes so we use them with ction uh and only if needed if we can avoid them by using diet or any other things so it is even better um yeah I think um um I think that’s a very good point that’s um well and I and I think it’s an or and I think the one that I’m on is a um IMU what do they call it an immune suppressant so I don’t know but it’s not actually steroid I don’t think is pentas saline a steroid no right well that’s one thing because steroids can be dangerous in the longer term can’t they yes yes exactly exactly they have many side effects they are effective and they can induce rabid remission but on the long run uh if the patient use them for chronically so they have many many bad effects side effects I experienced that you know from using prazone for a long time they were not giving me biological treatment and then they suggested that I stay on a maintenance dosage of prazone which was not truly a wise decision but they because they couldn’t offer anything else um and it caused a lot of side effects you know not to talk about the mental effect it has over me you know on a long term have eye problems osteoporosis um mental confusion you know a lot of side effects that I decided to stop it you know the lowest dosage that I could use which is 25 milligrams or five milligrams I it it has a potential to damage a lot of body parts on the long term yeah I’ve heard of prosur they’ve never put me on that luckily I’ve only ever been on the um the uh Pentasa and um yeah I think at one point I was getting blood so they said I could increase the dosage to two two tablets in the morning and two tablets in the evening rather than what I’m on now the maintenance dosage of one in the morning and one in the evening and I think there may have run a colonoscopy round about that time but no I mean I I think the holistic approach that Leona takes is very valuable because I think diet plays a lot as well not for everybody but for me I think um diet has played a large part in helping to get me better um even if I I have to remain on the Pentasa but I think where before I didn’t really before I met fil Leona I didn’t really want the colonoscopy because of various reasons like I struggle with FL fasting and there’s all the issues you’ve got to get to the hospital and you’ve got to have you know the um the the sedative and I’ve I’ve got hem roads down there as well things aren’t too good down there some bit worried about having something put up my um my anus but I do think now that it’s necessary but I don’t know whether they’re going to give it to me I um I that the the review will have been done into my referral to the QE gastroenterology Department by the middle of March so um but but if I’m asked for my opinion again and they call me in which I presume they’ll have to I will say that if they you know if they don’t mind or do think a colonoscopy would be a good idea uh Sue is in UK Dr Al okay yeah is in Denmark oh Birmingham I know I know many people many many IBD working Birmingham Queen Elizabeth Hospital yeah I’m I’m about 10 minutes by Uber away from the QI it’s the most amazing hospital my mom was in there 10 years ago who who’s your doctor I haven’t got one at the moment all I’ve got at the moment is a referral to the gastroenterology Department I think okay there’ve been issues because I’ve had issues in the house I’m living in its temporary accommodation and it’s a house share so but it’s good it’s a good hospital and they they are really really competent and they are very good and they they are doing good research good clinicians I I have visited the hospital it’s it’s really amazing yeah I have every Fai in them it was not them that I doubted it was me from this perspective of would I be able to starve myself effectively because on one occasion I was called for this colonoscopy in kidderminster and I and it was complicated my brother was supposed to be taking me and he didn’t want to take me and he was downstairs having a r with my mom and I was upstairs trying to fast and flush my system out and then and then I got a migraine so of course you know I didn’t finish the flushing out and when I showed up the next morning they said well we’re sorry you can’t do we can’t do it because you’re not ready for us and you know so it was all a bit of a disaster and and at a place like the qwi I wouldn’t want to mess them around like that and now I’m on my own but then that brings other issues because I’ve got to cope with fasting and get myself there on my own in Uber and get myself back but having said that I’m very close to Christ Church an Evangelical Church over the road so provided I remain here I have been indicated that somebody there would be prepared to support me someone who’s had colonoscopies herself so she knows what it’s like okay are are you a member of the cron colitis Organization no I I I looked at the American version and I gave them a um I gave them a uh a donation to say thank you but no that’s a good idea I wasn’t even aware I think my consultant many decades ago when I was 38 shoved a load of paperwork at me about um Crohn’s and kitis and I didn’t do well cron colitis organization UK is also an active organization yeah I told about so it’s a good idea to to just to contact them to the and there are some activities they you can participate and you can have also some support groups because they they they have some support groups to things like this when you are going to coloscopy or something well that’s well worth know then yes and I don’t know why I don’t have their their um I don’t know why I don’t have their their um you can you can look them up online uh soon just write down colitis UK and you’ll see the the organization there well that thank you for focusing me because unfortunately what’s happened you see Dr Al is that um gona has been trying to work with me intensively and things have been going well with the diet but because I’ve had issues in this house specifically with one of the other inhabitant it’s rather way laid me emotionally and we have spent quite a lot of time talking but um I class her as a holistic IBD coach so not just dealing with my um my my diet or my colitis issues but also with um with um with everything else but I hadn’t thought to be quite honest because I was thinking well if I haven’t got a kitchen and I can’t get myself organized no point looking at these websites because it’ll all be recipes but you’ve pointed out something that’s patently obvious which is that it’s not just about food it’s about support groups and additional information yeah even talking and uh talking with people who have the Suffering The the same symptoms like it will give also some support because psychology is very important you know it is really it is really neglected but it is very important yes you’re right Leona can I say before we go any further with me when I tried to log on to this meeting because it’s only me here it wasn’t bringing up the event on on the we on the LinkedIn page I don’t know how you you’ve been inviting people I don’t but I don’t want to monopolize the conversation while other people are trying how you did you get in then um I think I went on um hold on let me have a look um I I went on the um I think I went on my it put it in my calendar when I first went in but let me have a look and I’ll just go back yeah good you you want to make sure we want to make sure that everyone could uh okay let’s have a um okay yeah yeah um let’s go back me I if I share my screen with you um can you see now how my LinkedIn looks no it’s not sharing okay um well maybe it doesn’t matter but you need to know because if people can’t get in that’s more important than talking about me and my yeah I’m wondering how did you get get into the meeting didn’t you use that same link that I have on uh in the I can’t find anything on LinkedIn I can only find the um um I can only find now the the share button on it but you you have a look on your LinkedIn that’s the answer Leona if you can if you’ve got two if it’s possible to open two screens and I guess I guess you can’t yeah yeah I’m opening the LinkedIn screen all that people have to do is just click on that um you know on the event link that’s all okay well so long as it’s showing on yours it must yeah let let me just make sure that it’s completely showing there you just make sure because you know never so kind to me but um it’s only 217 and um you know um yeah people who want to join would have joined by now I see what you mean but that’s but that’s but it’s just strange because it didn’t come up as a LinkedIn audio room unless you were specifically running it through yeah it it won’t come as a LinkedIn no all that you have to do is just click on the link the Google link and it brings you to this me so it’s not a LinkedIn event yeah let me have a look and go back and see how I got in I think I went to let me let me share the screen you yeah you’re quite right leoner event link is what I needed I was looking for join the word join because normally when I join audio room join for the audio not for the for this event this is like a third party uh you know connection okay yeah so you you clicked on the link for Google meet and it brought you to the meeting which is very good that you’re here so let’s not uh you know let’s use the opportunity for everyone who is not here who has not joined the meeting let’s start by you introducing yourself and then go along with the meeting agenda that we have prepared for the meeting and it could be recorded and we could post it later on for those who great marvelous okay I’ll get my notepad out the owner okay so so I’m a coral surgeon based in the North Denmark and my focus in the last uh uh 10 15 years was inflammatory P disease and uh specifically also how to make the uh Treatment available and the management easy for those patients who suffering from inflammatory B disease I’m really looking forward to this talk that Dr Lona has arranged because uh we would like to interact with our patients and everybody is taking care of patients with inflammatory B disease answering their questions and helping them great thank you Dr Allah so let’s start by differentiating the two types of IBD or maybe there’s more than two types but the most common ones are the ulcerative colitis and Crohn’s diseases well as you said there might be many types uh and the the division or ification to ulcerative colitis and cron disease is is being challenged now with genetic studies showing that the cron in the colon is more similar to elative colitis and can be same as the elative colitis but anyhow let us follow what we have in our hands now so Crone disease assertive colitis and indetermined Colitis but there are other also types of colitis like collagene colitis and other types but the most common are these two and the the the difference between the two is uh genetic the immunological profile is different between these two the parts that affected from the from the gastointestinal tract are different in Crone disease any part between the mouth and the anos can be affected inative colitis it is mostly the colon is affected so this is one of the main difference the the morphological changes occurring in the gastrointestinal tract can be different in Chone and otive Colitis and that’s why we do the colonoscopy because this colonoscopy can help us to identify the morphological changes in the in the small and large bowel and then we can uh POS the diagnosis Crone or C colitis however sometimes it is not like as easy as this and there are many of the conditions are in the gray Zone and usually the examining doctor take biopsies from the affected areas and they are analyzed to to see if there are these changes are similar to Crone or similar to alera of colitis we will get to that Dr Al once we talk about diagnosis so let’s talk a little bit about the common symptoms for these two diseases most of the symptoms they are concentrated on diarrhea bloody diarrhea um malnutrition in the form that weight loss because of the uh Mal absorption this means that the patients will eat but the absorption is bad and that’s why they they lose weight because they don’t get the they don’t get the uh nutrition needed by by their body uh sometimes there are extraintestinal manifestations affecting the eyes or joints or uh or even other organs um skin for example the most important thing is that we uh need to say that the inflammatory bowel disease is a disease of immune system what does this mean it means that it is a systematic disease affecting all the body because the immune system is there all the body although we can identify specific areas where the uh the disease is attacking or usually is affecting them but it is a systematic disease this is one point the other point inflammatory bow disease they are they have the pattern of autoimmune disease and this pattern is remission and relapse so so even if the patient don’t get the treatment some of them they will get to remission uh phase and but this remission phase is not is not always known how long it will be sometimes it is few months sometimes a few years sometimes is long remission Cas so these are mainly the general symptoms of those two diseases thank you Dr Al how about talking now about the diagnos is of each of them Crohn’s and alcera of col yeah the Cornerstone in the diagnosis is the endoscopy usually the endoscopy is colonoscopy and uh in some cases in rare cases we need to do small bowel endoscopy but mostly it is colonoscopy that it is diagnosis uh diagnostic um another option is the capsule endoscopy and in capsule oscopy it’s a small camera that the patient will swallow and it will go through the gastrointestinal tract taking photos and then these photos are analyzed there is a huge advances now in using artificial intelligence to analyze these these images because there are hundreds of images usually there’s someone is trying to to scroll down those images and see them but with using algorithms artificial intelligence algorithm this is promising technology to make this easy and thus the patient they don’t need to to go through the colonoscopy however I would use this uh opportunity to tell the patients and the caretaker of the patients that colonoscopy is not a dangerous procedure and colonoscopy in the hands of trained physician or surgeon is a simple procedure and usually it doesn’t uh take long time and usually it is not painful some discomfort it can happen uh but it is it not supposed to be a painful procedure the colonoscopy itself has been uh has been changed and developed and evolved so the new uh endoscopes that we have they are really very flexible and the the uh the investigation is becoming easy so if you have the chance to have the Cor copy don’t say no to it it is it is a good procedure yeah that’s great I will um well I will ask the question absolutely now and say that you know I haven’t had a colonoscopy or endos for um six years and if they’re going to keep giving me this medication they’ve got to know what’s going on in there don’t they and also in any case I’m with Leona now I’m one of her patients so I mean her opinion is I should have the colonoscopy so she has to have her say as well and really I suppose they ought to send her a copy of you know of what um of of of whatever the of whatever the outcome is whatever they find because I’ll tell you what else was also negligent was last time I did have a colonoscopy I think he didn’t keep a video it was run by it was done by somebody from another country who was a locom who who did um who didn’t provide photographic evidence he just drew a diagram or something you know it wasn’t satisfactory at all and they did offer me the chance to have it redone but I found it so traumatic having that one done I said no no thank you and I think that was the right decision at the time because I was still living with my two brothers and um but I think now I’m with the QE and I’ve got Dr Leona on side and it’s been six years I think it’s time and hopefully it will be good news but in the meantime I need to continue um you know continue working on my diet because you know now the fat flatulence and diarrhea does seem to have gone but having said that it doesn’t take a lot to get it back on board if my diet slips you know yeah um so we will get to all of these tips that you know talking about the diet and the holistic approach um later on during the session I’m gonna I’m gonna have uh Dr Al tell us a little bit um Are there specific diagnostic tools for uh Crohn’s and others for assertive colius or is it the same techniques used to diagnose both you’ve said before about taking biopsies that could differentiate between the two diseases so yeah um there are so much uh uh so many groups working trying to find some biomarkers for inflammatory bowel disease at the time being uh we have the colonoscopy the biopsy we have the protine which is usually measured in this tool and it gives us an idea about the the disease so these are the diagnostic tools that we are uh we have in our hands now but there are a lot of work to get some um biomarkers using the blood for example blood investigation I know there’s a there are few groups working on impedence which is kind of making a kind of um eletrical analysis of the blood sample to see the proteins and the changes in the proteins this is a field in itself the field of uh biomarkers in IBD and the diagnosis in dibd but uh generally speaking these are the main tools that we have in our hands now uh I’ve seen lately um you know some with the Cron’s kitis foundation of the United States um a machine that detects biomarkers from the sweat of a person have you uh heard about such a technology or is it something I’ve heard about this technology in in Parkinson um and um there might be also some other groups trying to to investigate this for other diseases so it is a it is a possibility because all the body fluids are affected by the inflammatory B disease as I said it is in it is a kind of systematic disease and therefore some people who have inflamat B disease they have other autoimmune diseases you can see patients with Crone and having romatoid arthritis or patients colitis having for example aasis or or other autoimmune diseases so all those diseases they are under this empirilla autoimmune diseases this means that we have a good chance to identify the changes in the immune system and and try to to figure out which one is the Crone and which one is the alterative colitis and which one is not affected by the other autoimmune disease I um I have ulcerative colitis actually and I have a vitamin D deficiency they’ established on my last blood test and they also um I also have a fungal nail infection they’ve put me on turbine for that so I’m taking that they’re running a blood test in a couple of weeks time I think so um so yeah I discussed that as well with Dr Leona there’s various you know um other things going on because of the autoimmune deficiency you know in my system yeah that autoimmune deficiency can affect other parts of the body other than the colon as Dr Al is trying to say yeah okay so um in terms of treatment options Dr Al what are the uh most common treatment options for both diseases and availability accessibility so after having the diagnosis confirmed uh so there are different treatment options to to start I will talk about the treatment options generally very generally because the details is uh can be found elsewhere uh so generally speaking steroids are the the the first drug to be used in cron disease um um 5 a it’s also being used inative colitis also Pentasa is also another drug to to start in elative colitis then there are two approaches for the treatment the first approach starting with these medications uh um they are systematic medications uh of course paza is Works locally also uh but steroid is systematic and when the the patient is not responding so there is another step going to the immunal uh suppression like as aprene or other drugs and when this is not giving a response then going to the biological treatment and there are many biological drugs that has been developed with different criteria and different mechanism of actions there is another approach to the treatment is to identify the patient who has severe disease and then starting from the most potent drugs giving them the biologics and then go down and give them maybe immune suppression and then maybe give them steroid and then stop the medications this we call it the top down approach and the other is the uh scaling approach or bottom up approach well when the the patient is not responding to treatment and the patient has symptoms then surgery should be considered and surgery should be considered early the problem is that many patients are afraid of surgery and they think that this is a crippling and they will get staa and they will get many complications and all these things and they try to stick to medications as long as they can this is wrong surgery has developed now we are we are using them minimal invasive surgery they using the uh the laparoscopic surgery so three four small holes 5 millimeter and then there’s a camera and the instrument and then we can make the surgery the more the longer the patient Waits the more difficult will be the surgery and the higher the risk for getting a stom because then the bowel will be destroyed and it cannot heal and that’s why we give a stoma because we cannot not make a kind of uh suturing the two bowel segments because the bowel has has been destroyed or it’s very uh very weak the power wall so the longer the waiting time the the the more difficult surgery so if the patient gets the to get the offer of surgery so they should consider this offer as soon as possible great um so what are some of the uh maybe you’re saying that patients are afraid to do these kind of surgeries are there side effects to uh the surgical intervention you know doing an ostomy having to live with a bag are they reversible or are they permanent well there is no surgery without risk so even even if you do any surgery that we consider is uh may be a simple procedure but it has the risk and even simple procedure we got um we have an example of Ernie operation has done by expert teams the the king Morocco King and many years ago and he died after the procedure so it’s is it’s just an it’s just an example that any procedure even done by the best hands has a kind of risk for complications so what type of complication can can occur it can be if we are uh making anastomosis that’s say two B signments they can be um a leak in this anastomosis they can be infection because as we said the inflammatory B disease is a disease which is systematic disease affecting the healing power of the patients so uh wound infection is also another complication other complication is infection the lungs or infections elsewhere in the in the body um the risk to having sto is when there is no possibility to make the anastomosis and this as I said because of the bowel destroyed the because of disease is very aggressive and that’s why we think that it is a good idea to have the surgeon in the IBD management team so that the um the pass ability of surgery can be discussed at early stages when the patient is not responding and not waiting until the patient is cribl by the disease so to answer your question about if it is permanent or it is temporary most of the time there are temporary stoas that we we do for those patient with who are young and can tolerate to have Anis does that affect their quality of life um you know living on a daily basis with a bag um attach Cod yeah um it does it does it is not uh and in many countries it is there is a Stigmata that the toy is is very bad and the patient will try everything to avoid this trauma but as I said it is not something that we do always it’s not it doesn’t mean that every time there is an operation so there is a sto uh configuration this is only when there is no possibility to make the the enosis and again I would say the the cause that we don’t cannot make enosis because the disease is aggressive or the waiting time has been very long so avoiding this of course for the corn disease also avoiding the smoking because it’s also affect the Integrity of such enosis so I is that with ulcerative colitis it’s okay it’s better to smoke but with Crohns you’re not supposed to be smoking yeah that yes right that it is in it’s affecting the in cron disease it is uh giving more aggressive disease if you smoke inertive colitis it might it might not have the same effect as a cronic disease but doesn’t mean that it is a good idea to smoke because smoking affecting also the healing power so even if if it has some other effects which is not like the crone it continue to affect the healing power and other systems in the body so smoking is not good for the IBD patients I agree uh now in terms of treatment options let’s talk about availability and accessibility to to these treatment options is it are these medications available and the surgical option is is it available to majority of people who are living with IBD or are there certain restrictions from getting access to these uh especially the strong biological treatments well it depends where are you living in the world um unfortunately so in some countries it is available and is supported by the by the tax uh uh payments in other countries it is in private sector like in USA for example and in some countries it is not available the medication is not available and the care for the IBD is not available in some countries it’s not available at all uh not for IBD only but also for other conditions so it depends where are you in the world but in this um in this regard I would recommend the patients to to gather together in some kind of patients Association and try to increase awareness and then try to lobby for for better treatment of IBD patients because this is the only way forward you know now in in Europe there is so much um focus on cancer and cancer and uh the the the patients cancer organization they are very strong and they are lobbying for for their patients so we can do this also for uh inflammatory bow disease Maybe we can join forces or patient can join forces with the autoimmune uh disease and have it in one organization the organization for autoimmune disease patients because then you have all the patients with with type one diabetes with romatoid arthritis with psoriasis so it will be a good organization big and strong and can Lobby to have a treatment and access to treatment exactly um you know you’ve talked about cancer and we know that people who are living with IBD have a high risk of developing cancer on the long term colon cancer um you know liver cancer the different types of cancers um so uh as you mentioned you know having to work with these associations uh as an initial step can prevent you know the development of cancer on the long term uh thank you Dr Al for that um so we’ll get to all of your questions after we finish this discussion we’ll uh allow some time for for all of the questions that you have at the end question so um Dr Al um I know from experience I’ve been living with crones for over 15 years and I’ve uh you know had a difficult Journey with a lot of adversity and challenges it wasn’t an easy one so I learned that uh medication by itself cannot keep a person or a patient in remission medication is very necessary to put a patient into remission but to stay and you know keep the remission uh there are other aspects of life that need to be considered and that’s where I came up with the you know idea of the program of the holistic IBD support for patients who are living with Crohns or alterative colitis knowing that it can touch every single aspect of life you know so can you tell us more about um other than the the physical stress that you know the the disease can put on a patient what are the other you know mental emotional social uh you know difficulties that a patient Can U face and get challenged with um to maintain balance yes uh so we know that stress is one of the major causes of uh of diseases it affects the immune system and it can trigger many diseases um one of them is the inflammatory bowel disease we don’t know how this is exactly is uh is happening but there are many studies uh trying to identify how stress affecting the cells in the mucosa of the bowel and starting a reaction that trigger immune reaction and then triggering the disease General um general advice to avoid stress and it is especially for the patients who have autoimmune disease and inflammatory vow disease because you know you know the the the saying that I I my my stomach say that this is not correct because you feel that something is happening there is something which we call it the brain bowel AIS or the the the the the this brain uh gastrointestinal access is is is real and it is identified and there is a strong evidence that our psychology affecting our B so avoiding stress and in those who are having a stress they need to to have consultation with some people who can help uh whether uh professional or people having the the same disease it it helps but they shouldn’t neglect this because it is important and it’s part of the treatment I totally agree with you regarding the Stress Management stress can can cause flour up uh at some point and you go into a vicious cycle of getting the physical symptoms and then getting again stressed about that uh about having the The Continuous diarrhea and bow movements and the other you know symptoms so it’s like a vicious cycle where you uh your physical uh Health can affect your physical health and psychological Health can affect your you know your other uh yes healths like the mental and the uh emotional uh Health what about the lifestyle and changing habits are there you know certain um guidelines for a certain lifestyle that will uh put a patient into remission or keep them in remission yeah yes we already talked about smoking which we agree that it is not good it’s not a good idea uh alcohol consumption it’s also it’s something that can be modified the exercise because we are living in sedentary uh sedentary environment we are sitting in front of our computers for hours and don’t we don’t move a lot so this affect also all our body because you know if we move the the bowel also is moving not literally but the bowel the uh that’s why when we got to sleep so the power would get the signals that we are sleeping so I think that the movement will be keep to will be kept to minimum when we wake up right yeah when wake up then there is the movement start in the bowel and that’s why many people will go to the tolet in the in the morning because now they are they are they are wake up and there is movement so motion and exercise very very important uh fast food is fast killing so don’t kill yourself with this food um food with conservatives like canned food and other types of of food which with chemicals they are really very bad for the bow also for the healthy people not only for the people with IBD don’t give it to your children don’t eat it this these are full with chemicals and we don’t know exactly what is happening when we eat them because it’s difficult to get some studies about this but we know definitely that many of those chemicals they can trigger disease they can trigger inflammatory bowel disease they can trigger cancerous genes these chemicals are not made for human and uh and maybe some some people will argue yeah but many people they are thinking that without how nothing happening to them you cannot say this because you are not following them all the rest of their lives you just seen them once so even if they have been eating the chips for example for 50 years how do you know that the next 50 years will be free so so avoid this food and eat naturally try to make exercise and avoid stress this is the general how about sleeping habits you know very important because sleeping there there are many studies affect um showing that sleeping and sleeping patterns affect the microbiota the microbiota is a kind of bacteria that we have it in our uh our body and most of the bacteria is in our gut this bacteria is very important for the digestion it’s very important for uh hormonal balance in the body this bacteria is affected by changing uh lifestyle like sleep also sleep times for example some people I’ve seen some people uh sleeping in the uh the day and they are awake in the in the in the night and this is really very bad for the for the body because the body is built and the hormone are are built to to us for to to work in the day and sleep in the night so but sleep in the night will affect the the microbiota like useful bacteria and it will it will affect the gut also great that’s very valuable information um now talking about uh sleeping habits we we talked about how many hours you think there should be how many hours of sleep a person with IBD or generally have to sleep in order to rest different because it everybody they have their own Rhythm about how much sleep they need I have seen people who say that they are satisfiable for hours generally speaking is most of the people they sleep 7 to eight hours some might need more especially for the inflammatory B disease patients with IBD they have IBD fatigue and this fatigue is is really difficult to describe it is not like the the fatigue that you get after a long exercise because fatigue after long exercise if you get kind of rest few hours then it will disappear but this IBD fatigue it’s in the bones it’s in the the whole body even if you get many hours because of the malnutrition maybe Dr because of one of the causes nutrition and the the the nature of the disease vitamins and Minal so the nature of the disease also affecting this so the the the time to sleep it’s or the how much how many hours different different people okay now regarding managing stress what relaxation techniques you would suggest for patients who live with IBD um you know on the long term do you have specific relaxation well I’m I’m not the expert in in relaxation so there are many uh many people or specialist uh psychologist and those who are trained to to make the relaxation exercises they can be consult of course what I can advise is that if you have stressful life then you need to have a break from from your stress because otherwise it will it will affect the the disease leave to flare up and maybe it will be difficult to to manage it excellent now regarding a diet Are there specific food that you would recommend for those who are living with IBD you would suggest that they increase the intake of certain food now we know they uh have have to keep themselves hydrated drinking plenty of fluids and two liters of water what about certain specific food that can work with the immunity boosting immunity and you know um enhancing the coping well again it’s a area in itself in management of IBD and that’s why uh in the in in the good centers IBD centers where they they have they have dieticians always that’s part of the IBD team this is not always there even in in Denmark in many hospitals they don’t have the dietician the IBD team but we we in the Echo the we are in the European Crone colitis organization we uh we published a paper about the road map for optimizing patients with inflammatory bowel disease and in this paper we wrote about nutrition and we stated that it is very important to have dieticians there so I cannot recommend just something which is general that one size fits all I don’t think that there is something one food fits all it I think I will leave Jans keeping a journal for each patient specific yes exactly each patient what they react and the the the dietitians they they they have different menus and they go like the treatment so when we give the treatment which is not effective we change another treatment they have different menus therapeutic diets that’s what they call something like this something like this managing through diets yeah okay um Are there specific uh tips you want to give to patients we who don’t want to just live with IBD they want to thrive and reach their full potential living with this chronic un treatable disease or un incurable disease yes it is uncurable now but maybe it will be curable in the future I hope in the near future what I want to tell those patients that’s um taking life as it is and be living it um happily it will have a good effect on their disease the this is one thing the other thing is that it’s very important to have a IBD specialist and not because in some countries patients they go from one doctor to another doctor this is very bad for for such a disease because you need somebody who knows the disease very well and somebody who can also follow up what is happening in the for the patient because things will change from day to day and you need somebody who has been there and don’t tell the the story from the beginning because then they will start the investigation from the beginning and the management from the beginning so two advices live your life as you can and have a specialist to support you or or kind of specialist center there where there is H there is knowledge about IB great thank you so much for your advice and thank you so much for this valuable information that you have um you know given us during this session thank you thank you for arranging this meeting sure uh we’re gonna allow Sue to ask some questions but before that I want to say that people who are interested in joining my program which is the uh holistic IBD Support Program um to balance the physical mental social emotional healths um they can uh visit my website they can um Book for a 30 minute Discovery call or 1 hour session um and then they can join my uh LinkedIn group um I have also two newsletters to subscribe to one through Linkedin another one through substack and um it’s there for support um educating uh raising aware and um advocating definitely for patients who are living with IBD now um sue you have uh specific questions for the last five minutes to Dr Al well I think most been answered and you’ve both been amazing and I will absolutely be pushing for that endos that endoscop that colonoscopy at the earliest opportunity and um just and you know to keep my hands on a gastroenterology consult at the QE on an ongoing basis and um um and just to mention as well one of the questions I was going to ask is can it lead to bowel cancer because funnily enough my dad did actually have bowel cancer and um they fitted a partial ostomy on him which they were going to reverse at a later stage unfortunately he was nearly 80 and he was in such poor health he actually had a heart attack suddenly after the operation so we lost him suddenly and that I was 40 then and I’m 54 now so um I want to um I don’t want to go the same way and um certainly I I’m I’m if there are any problems I want them nipped in the bud so you know if if I have to have an ostomy it can be done as you was saying before things get so bad it either can’t be done or it’s you know it’s a more it’s all together more serious than you know but but also to say that Leon the lifestyle changes that Leona has recommended already to my diet of work Miracle so hopefully you know that won’t be the case um but we won’t know until they do it and also of course I do have the car map which I got not because Leona told me to get but because Google recommended it and I have been I have been doing mindful movement and um meditation and mindfulness and you know I have found that very helpful but um I do enjoy normal physical exercise so I’d like to um Branch off into swimming at a later stage but you know um um and my only final question is is Dr L all on um on LinkedIn yes he is okay so I can follow him I suppose on LinkedIn to see you are welcome you are welcome everybody is welcome and uh great we will be happy to arrange such a event again with Dr Leona to to answer the questions wonderful yes well it’s a just a shame I was the only person who showed up but it’s there don’t worry don’t worry we we we we say that we work our best it is the intention that we will be judged by not the success well anyway you’ve got this recorded now Leona so you know it’ll be useful for you to have as a marker in the Sun for yeah definitely yeah for those who want to benefit from the session and as you see you were sitting there and taking notes so if you didn’t find Value in that you would have not yes no no and I will and of course valuable advice is to go to the Crohn’s and kius um UK website so that good idea yeah so when it comes time for me to have this colonoscopy hopefully I’ll be part of a group of people who’ve been through it and they can provide me with the emotional support and you can also and you can also provide others with the knowledge that you have there is nothing there is nothing better than helping other people yes this is the best and and indeed I can recommend them to I can REM I can recommend them to to um Dr Leona you know because she’s there as well so yeah thank you thank you good well my best to you know help people as much as I could with the experience that I have with crones very good thank you very much and thank you for this opportunity thank you sure looking forward for future collabor thank you bye bye all mine thank you byebye thank you thank you bye bye byebye for

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