Emma stevenson 1304536 36 year old lady blood test 01/14/2026 full blood count normal hemoglobin a 135 normal platelets eosinase normal crp 2 mri head thirteenth undertaken on january 2 and reported on the january 13 normal intracranial appearances pcr negative zn stain negative fecal concentration not tested fecal calprotectin 12/05/2025 781 micrograms per gram released fecal calprotectins from 2022 were normal I'm rob from spectrum health hi how you how are you yeah yeah okay do like you you anyway you like yeah no obviously I'm just good I don't well I think it's best though I've a bunch of people good I I don't I think my I did eat tablet from that night but I didn't do eat tablet skin last night mhmm the next morning it did come out black rather than red okay but now there was brown there which before all I was practicing was mucus and blood so that is like every time I went it was just nothing but mucus and blood and then occasionally the odd hard pellet would come through so on that front I feel things are a lot better good I'm so dizzy afraid it does make me just want to cry because I'm just really struggling mhmm with the dizziness just don't know what to do I don't know if it's got worse I don't know if it's something else I I don't know if we have be at all tell me about the dizziness well can't say that you made it worse no it's been fine okay so I've been doing a lot of work I've been something off for month or so since kinda like march and it's very much a case of sometimes I was noticing that during because I'm a vet during surgery I would blink and 1 minute things would be in focus and then not in focus I wouldn't have classed as dizziness at that. I just thought oh I need to get my eyes tested so I went to get my eyes tested the optician said they were fine ignored it again for a few months and just realized I was kind of getting almost kind of like migraine kind of auras and things now and then but just really noticed that things like reading kind of science when driving I didn't see them until like the last kind of possible because it was quite blurred because it's quite blurred then other times it would be absolutely fine so I could look at it it would be in focus and then I'd look at it again and it would not be in focus and particularly at work when I'm looking at like a patient and back to the patient they're reminding that I was feeling unstable on my feet and dizzy and kinda just like a viral cold kind of thing I thought oh well maybe I'm just a little bit below par there's a few pucks going around and things or maybe it's just I'm not eating enough at work and drinking enough so kind of was ignoring it and kind of managing my guts because I was getting little flares kind of since june that I was managing to say do 4 weeks of meziban and suppositories okay and then occasionally I maybe we should have persisted a bit longer because I would stop for a few weeks and have another flare up and things I noticed like I don't know if it's related like I eat beef I like eating beef but it doesn't like me and I would be very much the next day I would have kind of blood and things so I've been staying away from that and and managing it like that but I then put myself back onto the oral tablets because it just I wasn't managing to go so it wasn't necessarily no blood it was just I wasn't managing to go to the toilet I'm feeling bloated and the lower back mhmm and at this time like very much I didn't realize kinda like on hindsight now I was waking up in the morning and stumbling to the bathroom while I'm walking and knocking myself on the bed and things and then when I go to bed in the evening I close my eyes and I feel bad and I was just like well I mean I was just trying to correct that start in the mornings by this. I was just feeling so rubbish was just it wasn't until I got the email from the I went back to doctors a few times about the decision on surgery right now so they referred me to an ophthalmologist you said it was my squints I had when I was a kid okay so then I went and got my squints looked at by a specialist I'm still waiting for that ophthalmologist to come back and in the meantime I got the email from the gp saying did you know that this dizziness and all that kind of stuff so I spoke to my gp and he was like well come off the meds and we'll book you and did a neurological exam and said we'll get you an mri and then obviously then over the christmas being crazy so I don't know if you can help me at all but that's where we're kind of at I the do have a new referral for next friday great that's really good but yeah I'm just have you seen the result of your mri scan normal they said yeah I just looked at it text me and said normal so that was good that came through yesterday so that's that's that's good but I just don't know what to do about this yeah of course it sounds like really debilitating symptoms it's just it's just got more like ringing in my ears and feeling really irritable mhmm and I feel really sorry for people around me because just even sometimes just chewing and things is just really getting to me a lot of just not me either mhmm so yeah and how's your life more generally at the moment you work at vets what are tottenhams are you living in darlington yeah live in darlington I'm a local vet I'm working up morgan vets and bobby tracy I'm working to be a partner there so working well that was the aim but I feel like I spoke to my partner work partner the other day and I've got the rest of the week off so since tuesday and things I wouldn't say things are particularly stressful or anything at home yeah fine yeah just these symptoms are making you stressed as opposed to vice versa yeah just wanting to try to not can't even be bothered to my cooking things but luckily manage it because my partner's doing a bit of the cooking and things and it's just but I feel like even silly things like a question like what color do you want the wall because my head's feeling so fuzzy I just just don't wanna make any decisions make any decision I just don't wanna do anything basically it feels a bit like a depression but it's but I'm not depressed I'm not a depressive person yeah so I kind of feel like it's making me feel depressed yeah rather than vice versa yeah understood but yeah that's it really so 8 months or so of these constellation of neurological symptoms where you're experiencing the blurring vision when you're driving and when you're turning your head quickly or to look from a patient's screen etc yeah getting up and down off the floor some days I wake up and I'm like oh I feel great lots of energy mhmm give me 3 or 4 hours and then all of a sudden I will be feeling really horrid again mhmm I would almost like to start with I would say it almost felt like a really bad sinus cold but it's not even that it's seen it as other than the visual disturbances mhmm I can see but I can't see yeah every time I go to think I feel like it's working I feel like I've got to like push my brain to do what I want it to do rather than it just happening naturally I just feel like everything is just so good mhmm and I just feel like it just like at the moment I've got like tingling down my back and like tingling on my head mhmm and it's gonna sound really weird but for up until like this last month I've had a full drink mhmm and I also got chitching like chitch and it's so irritating coming down my face it was at the. Where all I'd have to do is that and it set it off mhmm but over the like last month or 2 months it's gone completely again okay and I was putting that down to lack of sleep too much caffeine and just a stressor that I didn't know what the stressor was yeah and so I'm glad that it's gone but it's I thought yeah it's just it's really it's really strange I mean it's just like a kind of clamping over my head sometimes a sharp pain in my head I'm generally feeling yeah and you seem a bit on edge like you sort of I think as these symptoms irritate you in such a way that I should say yeah I feel really I feel yeah like at the moment I've got like a it feels like I've almost got a little bit of whiplash if I'm honest with my neck and my back but okay so what that's not uncommon for me to get the odd bit of back and neck pain because of what I do of course because of course work as well so I'm kinda just putting it to oh you've just tweaked yourself you just slept funny but yeah I know I'm just feeling I'm not then as well as the blurry vision you said you had a bit of aura which yeah can that's like a sort of bright light to the side of your tissue would you just call it it varies it mostly it's darkness if I'm honest mostly it's either a dark dark patching that doesn't stay in the same place the I was having lots and lots of floaters but they've kind of like mostly dissolved some days are there some days are not mhmm but it's more of like blind spots rather than brightness but I do get the brightness when I close my eyes at night so lots of times in the black but yeah just so if it would be a case of yeah just a dark spot appearing that you're like oh can I is there meant to be something there is there not meant to be something there and then other times it's absolutely fine and then you said when you get up in the morning you're kind of shuffling to the bathroom feeling unsteady on your feet yes if I get up too quickly I kind get to the bottom of the bed and then I feel like I'm just going to fall over again most of times I knock myself off the bed and knock myself off the wardrobe catch the door of the bathroom and then in the bathroom and I just thought I was being clumsy to be honest I just kind of thought what am just rushing around but if I think about it I never used to to do that and never used to hit my legs on the bed quite so much and just strange just generally yeah mhmm yeah I'm just feeling a little bit I think I think it's getting me down little bit now of course it sounds it's been going on for a long time yeah I mean it kind of sounds really stupid but it's that whole kind of weird kind of like oh I'm gonna start I'm gonna get fit everything's gonna get a bit yeah it'll be good and then it's just gonna kinda which is life a little bit yeah of course and then on top of the neurological symptoms you've had changes in bowel symptoms yeah you said over the last sort of around the same amount of time you've been flaring intermittently is that fair yeah I mean to be completely honest with you I've probably been been a bit fat because doctor johnson had said like start with the suppositories if that wasn't getting on to it then go on to the oral medicine again so I started with suppositories and if I'm honest I probably have not been the most compliant like I do it for say a week and a half and it'd be better positive in every day is tough yeah isn't it it's tough and so as soon as I like the symptoms can resolve a little bit and I would start pooping again I would probably we go 1 or 2 days without it and then I'd be like oh no I've got do it again yeah fine and you know you need to go use it again because you had blood yes mhmm yes I'd use it again because I had blood and and and it's fairly quick at resolving the blood it it is it is but do you get urgency along with the blood rushing to the toilet or just the blood it starts off with just the blood mhmm and then yeah in general it's I can feel it because I get pain on my lower left which I think is my: and so I generally get a kind of 20 minute warning that it's going to be fairly urgent because my lower left back almost feels like it's burning and hurting and then I'm like oh passing through there and then yeah 20 minutes later I've got to be near the near the toilet and certainly the last 5 months has been a case of I have had where am I supposed and to go kind of and certainly over like christmas? We're stopping the meds event completely bad of course but I feel like and I still at the moment now have very much when I've got to go I've got to go but since speaking to you it's a bit of red blood good and actually there had been some abnormal coming through so I think that's a long run you've been on the verge of flaring haven't you it sounds like for a while never really getting on top I don't really get on top of it on hindsight I think that's probably because of confirming it's meat compliance is 1 way to say it but it's another you know having oral tablets all the time instead of having trying to use the suppositories as and when is a better way to go about it because obviously they're much more tolerable and much easier to use every day than putting a suppository in every day which is obviously challenging it sounds like we've just got on top of the inflammation but then it's come back again and we haven't really delivered that mucosal healing that full depth mucosal healing that we're trying to achieve with these 5 asas and you've had some blood tests which is great so I didn't know your gp was able to do it they said they might not be able fit you in which is why I said to come in now and have some blood tests right fine and it's even better because you've had a history and I can look at them your crv is only 2 yes which is very reassuring yeah you're using it to find your full blood counts so you're lamineic or anything like that which is good so it doesn't look like you're having a severe flare of osteo colitis at the moment but I hear your stool frequency is about 8 to 9 times yes I will be getting in the middle of the night so if I eat so if I'm gonna be completely honest I think part of my business at the moment is is I haven't really been eating mhmm as properly for the last kind of 3 or 4 weeks I've been eating dinners mhmm because I can then be at home and walk to the toilet during the night but I will have like a cup of tea in the morning and then I might go all day with just having like your drink of water and things like that because if I do eat then it's just not easy to do that yeah of of my dog and you're in the loophole somewhere and then I just can't do that so and then that means you don't sleep well at night and then you feel worse in the morning and then get to at night so I don't so I don't know if that is adding to how I how I'm feeling at the moment so yeah I like last night had a proper meal the next 4 had a proper meal really mhmm and then yeah and then the second yeah yeah fine so getting better but still not not fully there yet and we're day 2 or day 3 day 2 of the day 2 of the post medicine yeah yeah so I from where I was when I spoke to you on the phone feel like I'm so I do feel I'm like in the right direction mhmm it's just I'm really hoping that this is all things that's a thing I think it could be loads of things couldn't it it could be iih as you say mhmm there's 6 reported cases in the literature I was reading on my way up 1,500,000 prescriptions issued for it in the uk for that time. It's incredibly uncommon but uncommon things happen you know and I think it's completely reasonable to see a neurologist about it the mri scan being normal is obviously also reassuring because you usually see some changes associated with iih on that but seeing neurologists is great and it's great you're seeing 1 soon so that's going to be a really good thing to tick off isn't it to make sure there's nothing neurological going on you've had the ophthalmological look which is also great to make sure there's nothing going on there as a course of the visual changes I wonder after all of this we may be left with you having sort of low grade flaring having inflammatory activity which runs you down over a long. Of time makes you feel crap even though you don't know you feel crap because it's your new normal it makes you feel drained and exhausted you don't sleep well because you're getting up all night going for a poo yeah and all of those things coalesce together and make you feel crap that can give you all kinds of symptoms yeah well I had to deal with myself to start with I thought that that might be the case but yeah and then obviously I think I just saw the email was just thinking maybe this is the quick answer maybe this is yeah what it of it could be it could be I'm not an expert at nih I'm a it's good senior not I'm really pleased because the mezavant is the only 1 that I think is that fob you see is viable with my job really because everything we go into too big a level of immunosuppression we have lots of other medicines that aren't mega immunosuppressive they target really specific small molecules that drive inflammation in colitis things like eculizumab which works just on those interleukins that we see are inflamed that cause inflammation in the: so we've got lots of options but however they are often infusions which would mean coming in to see us on a regular basis or medicines like tofenacitinib which are jak inhibition which do cause slightly higher immunosuppression so yeah 5 asa and salamy are great drugs when they work for people and if they're working for you then it's fantastic because we know that they're well tolerated usually can take them for a really long time with no problems and can be really good at decreasing inflammation and things like that so I think if you can stay on them they're amazing if the neurologists think that there's something in terms of ih going on and maybe you're interested in something that's fine for me to think of something else but in ideal world from our perspective selfishly about your gut would be great to keep you on those things but what we need to do what I think we need to do is try and get you on something that you feel you can take all the time that will decrease the inflammation all the time that's tolerable for you I completely I don't think I'd want to put suppository in every day it's miserable isn't it it is even though you've got left sided disease and a suppository would be great but putting in a suppository every day is not a very pleasant thing to and I completely understand why that decreases your tolerability so having something different is a reasonable thing to do isn't it so you've got left sided disease you're on the mesoderm side can you see that I'm confused so on the test that you had you had inflammation on that left side of your: but you didn't see significant inflammation on the right it's mostly left sided which is why the suppositories are working for you ah does that make sense that does make sense yeah yeah so they form like to tube it's just 1 1 side of the: as opposed to so exactly so you've got your your: comes you've got your bum and then your: comes up around the left you've got the transverse: on the right side of the: the majority of your inflammation is on the left hand side on the left hand side that last canal exactly and unfortunately that's the bit that causes all of the symptoms the rest of the: causes a big inflammatory surge and makes your blood tests go nasty and things like that yours doesn't doesn't but on the left side that's what causes the symptoms because you get blood coming out you've got hard poo there which irritates the mucosa makes you bleed more and it causes that urgency that you're experiencing because the: is inflamed it can't expand and distend to allow you to formalise stool to then pass it when you want to any small amount of poo it just goes need to get this out then you just rush to the toilet and so suppositories are great to target that area but we've also got oral preparations that are formulated to access that area so you could try a granule formation of mesalazine which is dispersed in the last part of the bowel so on the left side the idea is that it's poorly absorbed all the way through until it gets to get it wanted to be on the left hand side and then it just disperses you could try some salivary granules you could try switching to those if you find that better that would target the left sided inflammation and also be something you could take all the time as opposed to taking suppositories think that would be important would that be alongside the oral meds as well just switch the oral it's the same drug it's the same drug same drug it's still 5 asa it's still in salazy but it's formulated into a granule the drug inside the granule is the same but it's in a granule that maintains its stability throughout the small bowel and on the right side of the: and then only gets released on the left so it's a time brace if you try that then want will be a normal tablet that would work just on the left where the suppositories are meant to work if I guessed then there was a degree of low level intracranial pressure to be so it shouldn't really affect my possibly I don't think that we'd have enough data to say about the systemic absorption of the granules as opposed to the systemic absorption of less fat or whatever I don't think I can tell you that all these systemic absorption is less we don't know I get on fine meds the oral meds if it's easier just to stay on the oral meds if have a brand new prescription right through then I'm happy to stay on that too it's working for you isn't it it is it is working so I'm happy to do that and I'm okay to do the odd suppository now and then if it if it's really bad and bloody then I'm I'm I'd rather do that and get on top of it mhmm it's just as I say my my daily compliance is probably not the problem we just need to get you on something that you're taking every day and that gets your symptoms under control if the nezavax is working and you're happy to take it every day then great carry on do it if you find that it's not working or you're not able to tolerate it then let's try something different a different preparation for the same drug ideally to try and make it work better for you does that make sense yeah that makes sense it's perfect and it's worked well over the last few days it should keep working well if it's not better or you find your symptoms are just intolerable and you can't do anything you just take steroids that we gave you obviously steroid exposure is not good but for anyone the clipper is very poorly absorbed so that is something I can tell you is poorly absorbed and it just gets to where it wants to get to in the: and it decreases the inflammation so if you're not better with a couple more days of mezilan or you're just like I'm just over having these symptoms then having a flipper for a month is a really reliable way to make you feel better and try and induce remission so the mesolam can continue and maintaining the remission over longer term yeah that's fine I think to be honest made such a huge difference just going on a double dosing the last couple of days how long can I go with the other dosage I would recommend staying on the double dosing for at least 6 weeks 6 weeks would be the perfect amount of time really because I think the problem as you've experienced is your symptoms get better and then you come back onto a normal dose and then they get better then your symptoms come back because we haven't delivered that full thickness mucosal healing that we want we've got a little bit better but then it just comes straight back again so a high dose at 6 weeks is gonna be a good thing yeah so okay I'll do that so I'll do that and I'll do the high dose for the 6 weeks and then the neurologist says the neurologist says next friday and then go yeah if it's not better in a couple of days feel free to take a clip alongside the double dose of mezavant and then really reduce remission to make you feel better right and then continue with mezavant if the mezavant's not working for you or your symptoms aren't completely gone we're aiming to have complete normality for you to feel completely fine no bowel symptoms whatsoever that bother anyone selfishly because we know that that means there's no inflammation which decreases the colorectal cancer risk in the future and also for you because it's not having any symptoms to be had it's not that helpful it is normal pooping mhmm because it appears from species to species of course you eat and then like 2 times so it's variable everyone's different okay a normal bowel habit is anywhere between once to 3 times a day and up to once every 2 to 3 days people some people you don't have to poop every you don't have to poop every day you know and you don't have to poop in the night most people do okay yeah and most people I would say the average is probably 1 to 2 times a day for most people a common thing we see is that you've dealt with symptoms for such a long time don't know exactly think once we get you feeling better you'll realise what normal is and what flaring is yeah know it's really frustrating because I did have a couple of years there where I feel like at least for a year and a half I didn't realize how much energy you're meant to have and actually how a normal inflammation just drains and then I think I probably then didn't notice the inflammation fingers crossed this is all gut related and actually I just need to kind of get on top of that even if it's not making your bowel healthier will make you feel better make you feel less drained and crap yeah definitely thank you it's a pleasure nice to bring it back to you it's nice meeting you and thank you so I'll let doctor johnson know if he sees you normally and how that's the proper stuff yeah no I'm not saying all that it's just a little bit of problem know you've got a few questions fine yeah we should I don't know if you just see maybe you just see the ibd nurses is that what you did well no I haven't seen anyone I'm sorry sorry I'm I know you're having a lot I'm like I'm not what you're busy yeah I'm mostly yeah yeah I'll get you on a phone take me back cranial alright thank you meet you you're welcome hi yeah good how you I'm good I'm good I'm I'm so oh have you been in trouble since then or why so okay friday I'm just gonna a night so I was just gonna have to get