Question & Answer led by Oleksandr Shumeiko, MD.
A virtual course series created by Dr. Jean-Frederic Colombel and his team to provide medical education on IBD management to IBD physicians practicing in Ukraine, addressing the lack of educational opportunities available as a result of the war.
Chapters (Click to go to chapter start)
Major IBD centers in Ukraine How the War has Affected Outpatient and Inpatient Daily Operations for Providers in Ukraine
Yeah, thank you very much. There is a couple of questions I received about nutrition in particular and the first thing which like uh will strike any America and that there is impossible to find peanut butter in in Ukraine. So that might be very unusual. I have a question which I see from the from the General G. I. Clinic often that people who use the protein shakes, they have a significant amount of diarrhea and that's not in particular to IBD population. But in one of your slides you actually mentioned that that can be a good idea to add to the diet. And like I I can't say how many times I see like a bad, pretty bad diarrhea because of that. So that absolutely is a problem. And so we're very specific about the types of protein shakes we use so a couple of thoughts if they're causing diarrhea, protein shakes that we use in entering nutrition. We often uses protein shakes. We use these central formulas that are well tolerated and so you want to use a formula that has fewer calories per on ml essentially that's more dilute so that you're not giving a large osmotic load into the gut all at once. If patients are having diarrhea, we tell them to sit on the shake slowly. We often refrigerate them for flavor but that can sometimes contribute a little bit to a more rapid dumping syndrome. If you're seeing that in your general Gi population. Um I also would be very cautious. Some protein shakes contain a lot of artificial sweeteners in them and these can also contribute to diarrhea. So we're very careful about what we're recommending. Um I don't know what you have available there. We use something called kate farms here. We also use a shade called or gain. We actually use in shore and boost as well and our patients it's easy to access um and we just tell them to sip on them slowly if patients, even patients with IBD, if they're kind of chugging them or drinking them quickly, they're going to have diarrhea from them. Yeah. Yeah I just want to emphasize that that's like none of them are equal and we should pay attention and they're all these brand names are completely different in Ukraine but that's something we should pay attention to. Um Alex Alex. I have a question for Asher I would like to take the opportunity that is is back. Uh Asher, there was one topic that we didn't cover today because maybe during the next one which is a long term management of steroids, you know because unfortunately uh if I understand well Alex correct me if I'm wrong if I understand well unfortunately because of relatively difficult access to biologic these days many of their patients in Ukraine they have to stay on a relatively low dose of steroids right? If I understand it can be a different doses but at least a long term low dose steroids. So what do you have any advice about that? I mean in many places they hear even because of either accessibility because insurance companies don't pay for it. Or just the doctors are still comfortable. We've used six MP. And a south I print as steroids spare engagements for also the colitis is a lot less controlled trial data virtually none. Never use it for acute colitis because it could take several months to work. Uh If you have access to a baseline transmittal transfers. T. P. M. T. We would get that because uh we have about 1% of patients at very low to absent levels. And that patient you won't want to use six mp. If you do you have Alex do you have the T. P. M. T. S. A. Available the blood test? I don't think so. Yeah. So I mean. Yeah. Well I'm it was trained by the late dan present and his typical dogs were six. Do you typically use six more capital puri in Orissa thigpen? Which one Do you use? More often? I I will say that is probably more often. Yeah. So the teaching quote unquote was you push to 2.5 mg per kilogram. I generally start a little lower just to make sure the patient could tolerate it. Besides all of the important side effects. Uh Some people have just difficulty tolerating it and then I would move up to 2.5 milligrams per kilogram. I am on the uh and obviously it's it's the the situation might be different. Different. I check the blood count weekly for two weeks and then monthly for two or three months. What am I looking for? I'm looking for at the cbc leukemia. I don't push past the upper like the lower limit of normal. Uh We don't have a dose response curve really based on Wikipedia. I watched the LFTs. If the trans am ministers don't rise to say more than twice control, I leave it alone. If you have access to six style guanine levels, we shoot for levels at about 2 30 to 4 50. But if you don't have it, I push the dose based upon weight and labs. If they have pancreatitis to one then you stop it, you're gonna get pancreatitis with the other so you wouldn't restart it. And Alex if I met something else. Of course that this is an older studies that we don't. But if you can if you are on a relatively not such high dose of steroids you can try to switch for for the desert night. Of course, I don't know if it's available in uh but you know we did this switch study many, many years ago which was actually published in the new England showing that we're able to switch patients from regular steroids two days a night. Uh nine mg. You know in the original study was equivalent to 40 mg of predniSONE. I think it's too high. It's most more softy milligram of 20 equivalent to nine mg of goodies all night. And they are relatively good data showing that actually you can win the patient of um systemic steroids when you switch and this is associated with much less side effects. Especially bone bone loss. Yeah. Uh Yeah anecdotally. That's something we're trying to do like is something we usually go to. Um And I just uh I I think the um I'm sorry what I was cyclosporin. That's like another thing which is um under used I think and is available in Ukraine. So I I try to find your article about the user's guide. But I know it's a it's a lot of discussion and it can be an option in Ukrainian reality when a lot of people misplaced and they're not following the same doctor with the same hospital they used to be. So I just wanna like that's something I uh such an old article that it's it's hard to find even on Pub med. So I will get a copy send it by P. D. F. To john fred the key issues are you have to let the patient know increased risk of infection and what you need to follow basically is creatinine and blood pressure and if the creatinine starts to rise you lower the dose and remember creatinine of 1.5 is a lot worse than creatinine of one point oh it's not linear. So I take that very seriously. Especially in the way lower weight patients and the levels. Again, I shoot for uh in the chronic phase about 100 to 200. Uh and there's literature on using tackle, I miss orally. Even from the beginning, if the patients very sick in the hospitalized phase, I'm not a big fan of the oral tackle alignments, but that's more accessible. I would say that's okay too. And uh are you recommending a prophylaxis against Pneumocystis? Yeah, so it's the it's a great question. So quote in the old days when I had patients on triple immunotherapy cycles, born high dose predniSONE and thigpen, I would put everybody on Bactrim try method principle for meth ox is all of prophylaxis. I think it's it's reasonable to continue that even if they are, quote, just on high dose predniSONE and cycloSPORINE is using a single strength try meth meth oxes all once they're all predniSONE, just cyclosporin. I would discontinue it. Okay. Do you ever do prophylaxis for the long term steroids only. I know there is not much patients like this in us, but how long should be a steroid treatment to consider starting this prophylaxis. I mean frankly, I don't use it in if it's just a patient who's on high dose predniSONE. And. And another new expression I have is in 2022 predniSONE dependent patient should no longer exist because that patient needs to get an alternative agent if predniSONE is not working or if they're dependent again an alternative agent. Um but I don't use profile access in those patients and there was a question about the use of cyclone kids and uh lizzie was answering that it's possible and it's um it's possible as well during pregnancy lizzie. Right? I think we published that The studies are small in pediatrics but they go down to the age of two. and you can use cyclist foreign effectively, just like the adults, just like the data that was presented. Okay. Hi Alex, how well let me ask you this prior to this horrible war, How many patients would you typically have in the hospital being treated medically for severe colitis? I will say that the hospital I used to work is the like the largest IBD center. So there is at least uh every week 5 to 10 patients being there. And what would be the standard treatment inflicts a map. It can be. And I I will say that the surgical treatment, the approach to the surgical treatment is a little bit different. Uh And I feel like people trying to shift to the more early surgical intervention than than they used to be. But I my biggest concern and I think that's the like the leading line of the old the three webinars we have here. There is a lot of people who has been on steroids who's receiving steroids like to high doses of steroids and who's receiving there for extended period of times for for no apparent reason And there is like a good uh like unfortunate reasons like there is no available uh other treatments and that's that's the same situation right now, even worse. Uh but there is some some issues with like availability of education and uh the knowledge that the other options exist is the an illegal anal operation. The standard for an ulcer of colitis patient or not pouch usually. Yeah, that's that's one of the main options. Yes. Okay. I listen, we're on a public broadcast now so I can't say anything. That would be illegal. But I can imagine it's very difficult to get ivy infusions right now and having patients maybe even leaving their home to visit. And it is a pill patterson and it is a pill. And if somehow and I know it might not be legal. We can get these pills to you. And really, I think that Patterson and I'm interested to hear what everybody else has is probably as effective as any other drug we've ever had. Maybe including uh inflicts a map even for the sickest patients. So I think that would be a great option over the age of 50 with Cardiac Risk factors are the patients who ran into all the problem with thrombosis and cardiac issues including mortality. Most of our patients are not over the age of 50. And personally I find the medicine and it has been to use an American expression, a game changer for many patients. So that would be a wonderful option if we could introduce it. And and there's phase three data uh again oral once a day for patterson and effective in us not to visit in it. No efficacy in promos john fred. Would you like to? No, no. So we have, I mean we have public data you know, this is available. The paper is not yet published showing the efficacy of amazing efficacy of city living corn disease for induction. 45 and maintenance. 30 or 15. The there are some safety concerns, especially some risk of infections maybe. I mean there is question mark about risk of perforation. I think we need we need more time but I I agree, I agree with that. This could be a game changer. It could be a game changer for acute you see as well. There is no data yet but very likely we will have soon a control tire looking at the efficacy of ubar in the setting of acute several colitis. I agree it would be some more much so convenient for Ukraine, you know because if you can give a pill it's much easier than to to come to an infusion center especially right. And then in pediatrics we used them both to positive and positive for you pa we have only used it in the 12 and above. Um, but it is quite effective and these are in multi failures that we used it and um 90% of them Had clinical response after induction. So it's really quite effective in our cohort of 14 patients that we have a pediatric. Okay, how many major IBD centers do you have in the Ukraine? So there is no like there is only one formal IBD center but like in the every regional center and right now it's it's it's a mass there are a lot of hospitals are not functioning to the degree and uh if you remember the like uh in early october there was like the very famous in the in the media like the strike in the key of city center, it's right across the street from the from the IBD center. So the a lot of work is disrupted. But I will say that there is no like specialized IBD people in Ukraine in general. So that's mostly managed by gastroenterologist, by surgeons, General surgeon Correcto surgeons. So there is like no uh elegant like training and one for that. But uh I feel like that that in the maybe 10 major hospitals who's who's like at some degree dealing with the with the I. B. D. On the on the higher level of expertise and our patients generally able to get inflicts a mad long term as an outpatient or is it just induction or one year of maintenance or can they get infusions continuously? It's usually it's usually only induction and there is like some governmental problem programs to cover that. Uh It's it's hard right now because the budget of government is a completely different right now. So a lot of problem programs on hold unfortunately. So we'll let me go on record as saying I can't officially talk to you about this. One of my gastroenterology colleagues is Ukrainian and very devoted and has been involved in shipping medical supplies. So I think when we are not on this official call we could talk about frankly patterson and uh and the monitoring is not very complex. I would get we talk about checking the Cbc all the complications with leukemia is not common LFTs, not common lipids go up but not in an important way because HDL goes up with LDL. So not a very complicated drug to to monitor. I must start, I would like to add that the care of IBD in Ukraine has been excellent of course in some centers. Ukraine is a member of Echo and we should remember that Ukraine was the number one country recruiting in clinical trials. Right. So this is a big problem as well because I think it's a big problem for patient because then they could have access to the most recent drugs and it's a big problem for pharmaceutical companies uh as well, you know because Ukraine was very well known as one of the best countries for recruitment of very well characterized patients and very precise follow up. So this was this is a big loss as well for everybody. Yes. And I will add so for from the patient perspective, but I don't have any data like, but from my understanding and there is more patient who is receiving treatment and medication is the part of the studies then the people paid from the from the government or some other sources. Uh, there is no like insurance or something like that in Ukraine. So it's it's a really complicated situation. Okay, thank you so much guys. I think we are at the end of the week unless there is some burning question. Well, I have a burning question Alex and I need to go, you could go, I mean in a practical way, how has this affected what's going on, affected what you do on a day to day basis, both as an outpatient and inpatient. You might have been asked as many times. I apologize if this is repetitious. So, uh right now I'm in the States. So I'm receiving an extra training the state. So I'm not physically in Ukraine, but I can tell you what my colleagues experiencing right now. So, uh, that's been like since the first days of the world, nine months ago. You know, almost nine months ago, there have been a huge shift of the patients and the disruption in the in the health care system in general and there's a lot of refugees, a lot of patients moved from the to the other countries or other regions and uh a lot of patients who moved to the other european union countries, they started on some biologics treatments which are standard of care there. And then as the situation getting safer, they they like tend to move back. But like um like from from from the standpoint of IBD care there is not as good. So a lot of people who got started or had an induction of therapy from from some other country, they're like now kind of suffering from that too. Uh a lot of hospitals are short staffed and because a lot of people are not working and there is a lot of issues from that. I will say that the patient volume like in Kiev that's the place I used to work uh is almost back to normal life like people trying to get to more normal life and the hospitals tries to try to back to the normal functioning until recently, like a couple of months ago there is an issues within the electricity and the Russians attacking the power grid. So um and it's getting worse and worse in terms of like blackouts and the amount of time of the day when the electricity is not working, most of the hospital are having a diesel generators and most of the procedures, colonoscopies and things like that are still going on. Um but of course volume and something non urgent is postponed. And I I believe that in terms of um things like colorectal cancer, we will have our toll in the in the years and Alex if I may and we already discussed that I think you you should report your experience, you know I'm working on now because you know I think this is the world needs to know what the care of IBD in such a situation, we need to bring attention to that. I think it's not you know, people don't think about all those patients who are like and also how how we can help further, you know, and I'm pretty sure several journals would be very keen to publish this experience because of course it's it's unique but we can learn from that and from you as well now. Yes, I I just spoke yesterday with the representative of the patient IBD patient organization. They they've done an amazing job in terms of like gathering data how many displaced people, how many people receiving what kind of different treatment and how they like energy in that situation. So I definitely have more materials right now so I will reach to you shortly about this. Okay thank you. Okay Alex you want to conclude? Yes. Uh that's this is the third webinar we have and I'm so happy. I I uh I think that audience appreciate that much more in the offline stage. So we have this record since I will interpret this one too and uh I I think that's much requested material and I think that helps not only in terms of education, but also in terms of like kind of go to the different dimension and learn something new instead and like kind of abstracted from the everything what's happening. So I appreciate very much every single one who's have make this happen and I appreciate all our listeners in our audience. And uh, I will try to be more prompt with the interpretation to Ukrainian. So I think in the, in the next couple of weeks it will be ready, recording for this webinar will be ready. And uh, I'm looking forward for the next meetings. I think that's much requested.