Update on my life

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emmaaaargh

emmaaaargh

Joined
Apr 14, 2012
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276
Hi, everyone! I hope you're all okay at the moment. I realised that I've not been posting very much as of late so I wanted to give you an update as to where I've been over the last few months. A lot has happened so I'm also hoping that typing it out will let me sort it out in my head!

So I finished my A-level exams in the summer and got my results in August - I missed my offer for both my firm and insurance universities by one grade (although I got AAC and they wanted ABB, they were both adamant that I had to get a B in the subject I got a C in!) so I enrolled in another university's foundation year through Clearing and moved in in the second week of September. I'm very happy here, and I don't feel all that bitter any more about not getting into my first choice because I genuinely love it. It was so stressful getting here, though. Because I entered the student body through Clearing, I wasn't guaranteed a room on-campus. I applied on grounds of disability (and asked for an en-suite while I was at it because there are 4 different en-suite halls, so I didn't think it was unreasonable!!) and got an accommodation offer only a week before the move-in date, which I decided to accept, because finding a place to live in the city on such short notice would have been either impossible or so incredibly stressful that it didn't bear thinking about. The only thing is... it's a shared bathroom flat. Admittedly, I don't do TOO badly - it's an 'accessible' built flat, so I'm only living with three other girls, we share 3 toilets (and one shower and one bath) and a rather large kitchen. So I get enough fridge/freezer space, even if I do wake up super early so that I'm not disrupting anybody by spending ages in the bathroom.

So now that that's out of the way, onto my Crohn's! I had an appointment with the GI scheduled for the last week in October, only to be told once I'd arrived - trekked all the way up from university - that he'd retired, and I would be under the care of another consultant. Except I didn't meet that consultant that day, since I only spoke to one of the doctors underneath him. Still, he was very pleasant to deal with! He was diligent in reviewing my case and suggested I think about whether or not I wanted to come off of Pentasa, because of all the evidence suggesting it doesn't do much good for Crohn's. I think I'll take him up on it, since I don't think it's been doing any of the heavy lifting in keeping me healthy since 2009. He then ordered some more bloodwork and decided that since my last colonoscopy was in 2012, I need another one pretty soon. Whether or not it's booked as routine or urgent depends on the results of the bloodwork - the results of which are sitting at my parent's house right now, waiting for me to open when I go home this weekend. So that's on my mind quite a lot lately.

Rationally, I'm fine with the idea of another colonoscopy. It needs to happen, they need to get in there and see whatever they can see. If I can get some Picolax again, the prep won't be TOO bad, and I should be able to ask them to sedate me. But another part of me is going over it constantly. It was so horrible last time for reasons I can't even explain. I dread the prep, because it's so hard for me to force down liquids when I don't want to drink them (probably a psychological thing brought on by prep/barium/all the other great stuff they have us ingest!). I'm terrified of not being sedated, but I'm also terrified of being sedated. So with all this whirling around, I got in the car with my dad when he came to pick me up and promptly burst into tears.

Between quite ugly fits of sobbing, I explained how mixed-up I was feeling about the colonoscopy. How I thought that it maybe came from being just 9 and 13 when my last colonoscopies were performed, how I was just a kid that nobody listened to, how I was terrified both times and none of the doctors cared to make it any easier. My dad, bless him, took it all in his stride, told me it was okay to cry because of the way I'd been treated the last two times. He told me this time would be different - I'm an adult now, and there's no way they can make me do anything I don't want to do. How I still look (and feel) like a kid, but I'm 18, and have been out of paediatric care since I was 15, so by all rights I should be treated the same as any other adult they see. And how the team at this hospital are so much friendlier than either of the hospitals I was at before, so I ought not to be too worried, because they've taken good care of me so far.

I was so touched! I went from freaked-out sobbing to grateful sobbing and then crying because I couldn't seem to stop crying. It was a weird car journey home. Still, I'm feeling a little more calm about it now. It's got to happen either way, and I've always been more of the 'grit your teeth and get through it' persuasion. The only question is: when? It probably (I'm very much hoping) won't be before Christmas, thankfully, but I have exams in January and then uni starts back up again and I don't want to miss anything even though the disability office at the university are really great (despite not being able to get me my own toilet :p). It's all very uncertain at the moment!

But despite all of that anxiety, I'm grateful in a way. I've been having looser stool than normal for a good few months now - not watery, and there's usually no urgency (unless, of course, I've waited too long!) but it's concerning that formed stools are so few and far between. It's a bit of a mystery, since I haven't had stomachache in months and I'm maintaining my weight, but that's why it needs investigating I suppose!!

And here's where I look back and explain 'wow, I've written a book!'. Sorry about that, I'm not great at being concise, so thank you if you got through it all. But that's where I am at the moment, and although I've been very absent on the forum lately, I promise I'll be around more now that I've gotten into the swing of things. I hope you're all doing well!!
 
Hi Emma , regarding the colonoscopy , picolax is the only way to go , its only 2 glasses compared to 2 gallons , as regarding the sedation , you are in charge , my last colonoscopy I got the sedation and I felt it was not enough so I asked for more and got it ,
you just have to discuss this with the surgeon beforehand and make sure he understands your concerns ,
As you said you are an adult now and HAVE to be listened to ,
Crying can be quite good and sometimes its like a release valve and takes the pressure off a bit
and it was great that your dad was there to listen and support you but thats was dads and mothers are for
Hope uni and exams go well and your health improves ,

Tony
 
In the same boat as you Emma, I have to schedule another colonoscopy soon but here in the States we have Thanksgiving in a few weeks, then I have a 2-week international work trip (its own set of problems) and Christmas right after that. My first two colonoscopy experiences were so bad that I'm dreading them and thinking of ways to put it off even though I know how important it is.

My advice is of course first to not try and stress out (we all know how that messes with us), and schedule for the time and place you feel most comfortable. Sure, doing it during the holidays would be annoying, but taking off a few days early from school and being able to recuperate at home seems like a better idea than having to do the cleanse and recovery at school. No matter what, best of luck!
 
Thanks everyone for your advice - I don't know how I missed replying to it, but I read both posts and took them to heart. I also decided that I'd resurrect this thread instead of starting a new one, since it'd be better to have everything in order.

So I think I've mostly reconciled myself to the colonoscopy. It helps that everything is going ever so slightly wrong at the moment - softer stool, not liquid, but mushy and a little bit acidic. I'm going more frequently (2x/day, which doesn't sound like much, but I used to only go once a day or once every two days), sometimes there's urgency, I've had two small accidents of the 'trusted-a-fart-and-I-shouldn't-have' variety over the last month, thankfully I was in my room for both of those. What's weird is that I've had no abdominal pain and no appetite loss, apart from the time I ate three types of vegetable in one meal and they held a riot in my gut the next day. That was my fault though :p I've got a vegetarian housemate and all of her meals seem so healthy, I was jealous.

University has been an experience, to be sure - I had six assignments due today and pulled an all-nighter last night to finish them, finishing up at around 6.40am. Submitted them and felt great, came home and slept. Then I got a voicemail from my new GI's office asking me to call back, so I did. The secretary told me that my new GI wanted to push up my next appointment (because the standard letter for my next appointment would have put it in April)... to Tuesday. This Tuesday. At 6.45pm.

On the one hand, I'm a little bit freaked, because meeting your new GI for the first time at his request at almost 7pm at night... well, something has to be up for him to make that kind of time in his schedule. I almost want to tell him to go and have some dinner, I'll still be here on Wednesday :p But on the other hand I'm immensely relieved. I want to talk to him about maybe going on Humira. I don't think the azathioprine is working any more. I don't think it's been working at 100% for months now, and it's taken a lot of courage for me to admit that. I just plan to go in there and be completely open with him - about how I don't have the energy to "just put up with" my symptoms any more now that I'm in University, I've got too much to do to let that happen.

I'm a little less nervous about the colonoscopy, especially since my new GI has all kinds of endoscopic certifications and the endoscopy unit at my hospital has won awards. And I think the main reason for my fear before stemmed completely from a lack of control - when I was a child with Crohn's, I didn't have a choice. I was told I did, but I didn't, not really. If I'd said "I don't want this colonoscopy and I don't consent to it," I'd be given a huge talk about how it was necessary, and how I would just suffer more if I didn't have it, and then my parents would have given their consent in my stead probably, instead of discussing WHY I didn't want to have it - why I felt like an animal that was just being strapped down and experimented on, and how degrading and humiliating it was. But that's a little dark, and I'm an adult now, so time to strap on my big girl pants and deal with the professionals myself. I know the need for a baseline image of what we're working with. It's time for me to be strong.

So that's where I am right now. I have two more assignments to submit before I can go home for Christmas (one of them needs handing in to the school office, which means going in person - otherwise I'd be long gone already!). I told my parents I'd hand it in at 9am sharp on Monday so they could come and get me that day and start our Christmas holidays proper. At least now I have an added incentive to stop procrastinating - because I've got to be in town to see my new GI on Tuesday!
 
This thread is a little dead, but my update isn't that huge, so I think it's probably best to resurrect it where everything is in one place.

So today is my colonoscopy! But I'm getting ahead of myself. I met my new GI in December and he was SO nice - I was really impressed. The reason for the urgent appointment was that my 6-TGN levels were way too high, so my azathioprine was dropped down to 75mg again. I explained my colonoscopy fears to him and he said he'd make sure that he be the one to do the procedure, which is really reassuring.

I'm almost entirely cleaned out now, just waiting for the last tiny residues to disappear, and I'm to go and be admitted at 2.30pm. Now that I've made it this far I have to say I'm a little bit excited as well as afraid - but my main fear is just that somehow I won't be clear enough and I'll have to endure prep again :p so I'll be back with more this evening or tomorrow, hopefully!!
 
Wow! Okay, well, once I was admitted to the day care unit at the hospital and hustled into the endoscopy suite the anxiety set in. But the nurses that went through my consent forms and pre-admission checks were absolutely wonderful, and took note of that anxiety, and made sure to let the endoscopy team know.

As it turns out, my GI ended up not doing the scope. My mum was more than slightly miffed at this (even though at this point I really couldn't have cared less) but the lady that did it was wonderful and told us that he'd trained her, but if we wanted him at any point - or if she did - then they'd ring him up and get him to come in. Again, at this point, I just wanted it over with! So I got changed into the gown and those fabulous modesty shorts, signed the forms, and went in. I had to hold the shorts up under my gown, because they were way too big. :tongue:

So in the endoscopy room were my endoscopist and 3 other nurses, who were all so beautifully kind. They had trouble cannulating me - only managed it on the third try! - but they were so nice about it and one of them held my hand as I cried. I was just so afraid that they wouldn't be able to cannulate me and wouldn't do the procedure as a result.

But they did - and the sedation was pretty nice too! I got fentanyl and midazolam, which made things pleasantly spinny. Oddly, the digital recal examination hurt worse than the actual scope did, but I guess I'm just strange :)

So I was awake and aware for the whole thing. There was a bad part somewhere in my transverse colon where she was trying to navigate the scope through and putting air in and it felt like I couldn't breathe because the tightness was so high up - so they increased my sedation a little bit and we got through it. Apparently, I have a very twisty colon.

We got all the way through to the terminal ileum - and it was weird to watch my ileocaecal valve working as we did! There was inflammation there, and a couple of small ulcers, so I was glad at least that the scope showed something, since the rest of my colon (as it always has been) was fine. Photos were taken, and some biopsies, and the scope was brought back, with more biopsies taken on the way out.

Near the end, my endoscopist said "we're going to try and turn the scope around in your rectum, which we might not be able to do since you're quite small, but we'll give it a go anyway!" to which I agreed, since it was almost over anyway. She tried thrice, and it was pretty much impossible, which surprised neither of us, since I'm a mere 5'0. Maybe a paediatric scope would have been easier to turn round? Either way, since the rest of my colon was quite clean, the issues only arising further up, we agreed that there probably wasn't anything we'd missed there. And that was it! It was over! I was cleaned up a little and wheeled out to recover from the sedation, which made me feel more than a little queasy.

The procedure itself felt really quick, even though it took about 40 minutes, maybe? I'm guessing that was another effect of the sedation, because while I was lying in recovery, I stared at the clock for about half an hour and it seemed to pass really quickly.

But all in all, I'm just so relieved. Not with the results of the scope, although I'm glad it seemed to confirm what I've been feeling for a while - but just that it was overall a really positive experience. I came home and ate a good dinner before heading to bed. Except I ate a little bit too much, and ended up vomiting it up first thing yesterday morning, and spent most of the day in bed. Lesson learned: don't overdo it on an empty stomach!

Still, I'm doing fine now, and am very relieved that I managed it :)
 
emmaaaargh said:
This thread is a little dead, but my update isn't that huge, so I think it's probably best to resurrect it where everything is in one place.

So today is my colonoscopy! But I'm getting ahead of myself. I met my new GI in December and he was SO nice - I was really impressed. The reason for the urgent appointment was that my 6-TGN levels were way too high, so my azathioprine was dropped down to 75mg again. I explained my colonoscopy fears to him and he said he'd make sure that he be the one to do the procedure, which is really reassuring.

I'm almost entirely cleaned out now, just waiting for the last tiny residues to disappear, and I'm to go and be admitted at 2.30pm. Now that I've made it this far I have to say I'm a little bit excited as well as afraid - but my main fear is just that somehow I won't be clear enough and I'll have to endure prep again [emoji14] so I'll be back with more this evening or tomorrow, hopefully!!
Click to expand...
Just
started reading your story. So sorry to hear you are doing so much, at a young age, and in college! I was the very same, but diagnosed in college. It was very annoying to have everyone TELL me what was to be done. I had no say either. But as I've gotten older it has gotten better. What came of your medicines after your colonoscopy? I used Humira for 3 years, until it was doing the job. Good luck with school. What year are you?
 
Thank you for the support, rockinRT! I'm a first-year, so I've only been at uni since September. I actually came back yesterday, to start the new term.

Nothing's been changed yet meds-wise, mostly because they're probably waiting on what the biopsies reveal and my GI will probably want to schedule a full appointment in clinic to talk about the results. I'm mostly okay with this, since we were going to have an appointment soon anyway to see whether my 6-TGN had gone down enough on 75mg of azathioprine. But that seems like a little bit of a moot point now, since it's clear the azathioprine isn't doing much any more.

So I'm supposed to be seeing him in maybe a month's time anyway... in theory. Since my old GI retired, the remaining GIs at the hospital have absorbed his patients, and are now pretty much full to bursting with patients. He told me that if I hadn't gotten an appointment in roughly 8 weeks (so... that's about next week, I think) then I should call his secretary and chase it up.

Until then, I've just got to keep moving! I think now that I've got some confirmation that I'm actually flaring, I can be a little easier on myself. I'm definitely noticing more fatigue, even after my iron infusion - most days I come home from my classes and take a 2 hour (or more) nap. So for now it's just a waiting game!! I'll update when I know more :)
 
Hi everyone! It's been a while, but I have an update at last. It's a long one, too!!

So I did not get a single letter from the hospital for my next appointment. All that saved me from missing it entirely was my being signed up to the NHS's text reminders - on the 20th of April, while I was home for the Easter break, I got a text telling me that I had an appointment the next week. I was highly annoyed, but glad at least that I hadn't been forgotten about. Although that appointment sat straight in the first week back at uni after the break, which was extra annoying, at least I had one.

I go in, and get weighed as usual - and yay! I gained 4lbs! (although I've probably lost it by now) and the nurse tells me that I'm going to be seeing one of the other doctors on the team, not my consultant. Inwardly I groan at this because the last time I saw someone else, he spent half the time asking me my history before deciding that "we'll wait and see," which I am almost certain is medicalese for "I don't feel I have the knowledge or authority to make any decisions on this but I don't want to tell you so," and sent me on my way with no answers.

So it's with more than some trepidation that I sit and wait for my appointment. The guy who is supposed to go in before me (it's a ticket-number system, which I think is both efficient and also highly reminiscent of Argos) comes out, and I wait. And I wait. And I wait. I think I'm waiting about half an hour before I get called in, and I can tell it's because this guy is reading my file.

After the preliminary introductions, he gets down to business. He mentions that my consultant wanted me to have another colonoscopy... to which I reply yes, I'd had it. He asked when it was. I told him: January 25th. He looks bemused. "Here or at [other hospital nearby]?" No, I said, it was definitely here. Long story short: no colonoscopy or biopsy results on the system. By this time the irritation is truly starting to mount and I think if they make me undergo another one because of their own administrative screwup I am honestly going to let loose and start screaming but no, he just asks me whether my doctor mentioned anything. I reply (somewhat tersely, because I am annoyed) that an endoscopist performed the procedure, not my consultant, but I give him the results anyway, which he notes down. What if I'd been more sedated? What if I'd not understood what was going on? Honestly! I am still fuming about this. It's not his fault, per se, but the fact that I had to give him the most important information he ought to have had really rankled.

He was good in one respect, though. He agreed that my possibly (HA!) being in a flare merited more investigation, and booked me in for a small bowel MRI, which is on the 1st of June. I am really not looking forward to it because I cannot drink large volumes of disgusting liquid (the only colonoscopy prep I can tolerate is Picolax, and only by mixing that with 1l+ of strong apple juice) and I will be dehydrated by not being allowed to drink for 6 hours beforehand which will make cannulating me an ordeal. Still, needs must.

He also gave me a prescription for some prednisolone, which I got filled because it's only three months until I turn 19 and start paying (I'm just kidding! But only a little). I don't want to take them until AFTER the MRI, though, because I want NO possibility that they obscure the results at all. Hell, I don't even know if I want to take them at all. The last time I was on them was the happiest 8 weeks of my life, but who knows how it'll affect me this time?

Thankfully, the hospital decided to remember that my house exists a couple of weeks later, and I got a bunch of letters from the hospital at once. The first was two (???) copies of a letter about the time I had an iron infusion in DECEMBER, because I was technically on the ward - if only for three hours - I guess they needed an official document to say "nothing happened". Nothing happened except the pharmacy not sending up the actual iron for two hours, which was hilarious considering the infusion itself took 20 minutes. 🙄

The next were letters for my next GI appointment (the 3rd of August) and my MRI. So if I decide to take the prednisolone, it'll be after the MRI to tide me over until the appointment. I'm really not doing well these days. Increased frequency of BMs, while still only maybe 4x per day tops, I spend at least 45 minutes on the toilet every time so it eats into a big chunk of my day and drains all my energy. The fatigue is the one constant: I never ever feel rested, I could nap at any time. And, last week, during the stress of getting my final assignments in for submission, I had an awful time with what was probably an adhesion-related obstruction: the awful pain that sends you into a kind of trance-like state because it's so bad you can't sleep it off, the awful nausea, and then the wrongness crests and you can vomit and it goes away. Except that happened thrice in the space of two days, despite me eating very little in that period. That was a pretty dark few days. I lay in bed and cried a lot.

Still! It's over with, I got the assignments in on time, my last exam at uni for the year is on Tuesday and then I can go home and relax without the weight of academics on me for a couple of months. I really want to get a job over the summer, but I'm honestly not sure it's feasible. That will disappoint my parents - and me, because I'm sick of being a freeloader - but that's just how it is, I guess. I'm going to find it weird going home, as I have during every vacation this year. It's difficult for me to reconcile the timid, ill invalid I used to be with the me that I am now: who actually walks with her head up and not staring at the pavement all the time, who ventures into the city regularly, who goes to stand-up shows on her own. Whenever I go home I feel like I'm regressing into childhood and I hate it, but at the same time, I don't want my parents to feel like I'm just a lodger in their home. There's a balance to be struck, and we still haven't really found it yet, but we're trying, and that's all we can do 💙
 
Hi, everyone. Resurrecting this thread (almost a year later, wow!) for another update.

So I had my MRI on the 1st of June as planned - amazingly easy. The mannitol solution was mixed in with some juice and I couldn't taste it at all, but it did get a bit cloyingly sweet into the second litre as I tried to finish it. The MRI machines themselves must have been pretty new because the scan itself took only 10 or 15 minutes, whereas the one I had a few years ago at a different hospital took maybe 45 minutes! I didn't even need to have contrast injected, only some Buscopan to slow the bowel. It was kind of amazing.

I saw my GI again in August and he agreed that things were bad enough to warrant my moving onto a biologic. I chose Humira for convenience (I'm at university, about an hour away from my hometown and hospital - not too far, but far enough, and I didn't want to switch hospitals in the middle of all this turmoil) and after my TB and hepatitis tests came back clear, we were good to go.

I started Humira in September and initially I had really high hopes. I could not BELIEVE how easy the injections were (and I am so sad every time I read about the new formulation not being available in the US yet, because it is honestly staggering - I can't feel a thing, not even the needle!) and have done them every two weeks since, up to now. I was optimistic at first, since the day after my first injection I had a solid bowel movement for the first time in ages, and my energy seemed higher after each injection.

But things have deteriorated swiftly. Now the injections aren't having an effect at all, and where before I was gritting my teeth and enduring my increasing symptoms, now I'm finding it difficult to do that. I am going to the bathroom upwards of 4 times a day, which doesn't sound like much, but when healthy/in remission, I go maybe once a day or once every two days. The movements range from mushy to completely liquid, and are often acidic. I suffer greatly from haemorrhoids, which are causing bleeding, as well as leakage of mucus and faecal matter - previously, this would only be after a bowel movement, but now it is constant, so I have to wear sanitary pads constantly. Pain is more frequent, but unpredictable. I am feeling trapped in terms of food choices - nothing is safe any more, and my appetite is vanishing. I am getting no sleep, both from anxiety and because I am waking up in the middle of the night because of urgency and accidents. I can no longer leave my room to attend lectures out of fear of accidents, and walking 5 minutes across campus to buy bread leaves me exhausted.

On top of this, my mental health is deteriorating too. I asked for help with it last month and got tentative diagnoses of depression, GAD and OCD, and put on an SSRI - which is helping the depression, but not so much the GAD and OCD symptoms. Those are spiraling out of control due to my increased powerlessness over my health and I am really suffering for it. I'm on the waiting list for counselling, and was supposed to begin this week, but due to unforeseen circumstances it had to be cancelled.

I'm supposed to have a gastroenterology appointment later this month. I'm not sure exactly when, because my parents can't find the letter with the appointment date on it, so I'll call my consultant's secretary tomorrow. I think I'll also emphasise just how bad things are getting, and maybe ask to see my GI in person as far as possible. I don't enjoy having to see any of the other doctors under him: they're dismissive, and I don't feel like there's a dialogue between us, and they spend most of the appointment getting me to tell them my medical history so there's no time for me to discuss my current problems. I want to see my GI, and confess just how bad things are, and beg for some progress to be made. I can confidently say that this is the worst I have ever felt in my 10 years of Crohn's. It's not bad enough for A&E - I am still moving around, staying relatively hydrated, and there is nothing acute about my symptoms - but inside I feel like I am disintegrating. I actually daydreamed about being admitted and put on IV steroids yesterday.

So that's where I'm at. A year on and no progress with my Crohn's. I'm pretty much at my wit's end, but I'm trying to keep as busy as I can with university work when my health allows. I'm keeping up with my coursework assignments this term and my exams aren't until June, so with any luck, I'll be able to demand at least a short-term fix before they start.
 
I am sorry for what you are going through. How often do you take Humira now? Maybe the doctor needs to prescribe it more frequently. Just speculating.
 
Thank you, Ron! I take it fortnightly, like I have since the beginning. I'll probably trial it once-weekly, but I'm not optimistic, because it hasn't really done that much for me even at the beginning. It's something to explore, though! I just wish there wasn't so much waiting involved.
 
Maybe you need to talk with your doctor about switching biologics. Have you been on others besides Humira?
 
Maybe you need to talk with your doctor about switching biologics. Have you been on others besides Humira?
 
I haven't, no. Infliximab might be next - depending on whether they think I ever responded to the Humira or not! - but I don't mind which biologic it will be, as long as we try something. I can't stand waiting any more.
 
You might be surprised if you trial it weekly. It sounds like it had worked for awhile. My daughter has lost response over the years and gets at least awhile of improvement with each dose adjustment. She also takes a lower dose of methotrexate to help avoid antibodies building up.
I hope something helps you soon.
 
Well, a lot certainly has happened. Over a year and a half since I've updated - but really, things have only actually started to happen in the last month or so.

Humira was a no-go. We measured my Humira levels in November 2018 (yes, they made me wait that long, 14 months after initiating Humira) and: perfect plasma concentration, no antibodies. I was just totally not responding. So my (then-) new GI (my previous GI went on paternity leave, so his patients all got shuffled around) switched me to infliximab, which I had the first infusion of in December. So I waited.

And I waited.

And I waited...

And I struggled all the time to finish my second year of university. Things weren't necessarily getting worse, apart from my losing weight and my depression getting worse, but I pulled through to finish with great grades anyway (really excellent considering the Crohn's interfering!). So that brings us to this June. Infliximab, like Humira, might as well have been saline for all the good it was doing me, but hey, not much else I could do but wait for my next appointment.

So I go to my local hospital for the GI clinic, and I see the locum consultant, who is freaked out by how low my weight dropped (down to 33kg) and immediately starts talking TPN. I am pretty freaked about this, and at first I'm like "hold on, nobody was at all concerned before, now you're springing all of this on me?". I go away with a dietitian review, and the dietitian is surprised at how much food I'm eating, but tells me to keep on doing it. So I do. I start a summer internship and it is grueling but I love it.

But all of a sudden, things changed. Food started tasting weird, off. Nothing I liked tasted good any more. I was nauseous 24/7, and the pain was a lot more frequent, only amplifying the nausea. I contact my GI and he thinks I need to be admitted, so off to my local hospital I go. On the second day of my admission, I get a surprise phone call from a doctor at another hospital, a research hospital in London. My GI contacted them for a second opinion on my case. He thinks I need admitting and (I quote) "frankly, we think we can manage you better here - medication, nutrition, follow-up, the lot." I wholeheartedly agree... and so I'm transferred from one hospital to another.

I stayed in hospital for just under a month. In that time, I had my prior MRIs reviewed by the entire gastroenterology team in their multi-disciplinary meeting, had a flexible sigmoidoscopy (there was a shadow on my most recent MRI that suggested a colonic stricture, but the doctor explained to me that the colon is not always easy to see on a bowel MRI, so they wanted to double-check - luckily, my colon looked perfect, no stricture to be found), and I had a PICC line inserted and started TPN. This was replaced with a Hickman line later - the day after my birthday, what a belated birthday present! - and I started to learn to administer the TPN myself. This was honestly a total whirlwind. I had a couple of days of straight sobbing because I was so afraid of TPN at first. I have obsessive-compulsive disorder and in my case it largely manifests as phobia of contamination/germs, so I was terrified. But as I started to get nutrients in again, I felt so much better. I felt like myself again. The stress and depression and anxiety of the last few months seemed to melt off of me.

I met with one of the surgical consultants and, since about 50-60cm of my ileum is riddled with multiple strictures, he explained that he wasn't keen on doing a resection. "If we did, it would be a small enough resection that you wouldn't have short bowel syndrome," he admitted, "but you're only 21 now and this will be your second surgery. What about when you're 31? 41?" I agreed. We decided a plan: a Michelassi strictureplasty to widen the area with all the strictures, with a temporary ileostomy just upstream of it to divert the faecal stream so I can heal more easily. That will be followed by a smaller, second surgery after the internal stitches from the strictureplasty have healed (could be as little as 6 weeks, although I doubt it'll be that short!) to reverse the stoma and reconnect me. The only problem is that, at my current weight, I'm nowhere near fit enough for surgery - hence the TPN. So I'm now on home TPN until I've put on about 10kg more, and then we'll go from there.

The last month has been so wild, so busy, but I'm so grateful to my new hospital. I think I got transferred there in the nick of time. My old hospital looked after me okay for a while, but they just slipped so much over the last few years, and I stayed because I didn't want to go to the back of the queue somewhere else. But I was stuck in the sunk-cost fallacy all that time. I shudder to think how much worse things might've gotten if I hadn't contacted my GI last month. I don't think I ever even realised how dangerously malnourished I was.

And that's a super-quick update. I wanted to come and post this in here because most of the stuff I've read on the forum about TPN has been pretty negative. I've only been on it for a month, but I wanted to provide a more positive outlook. It has quite literally saved my life... and now, for the first time in over four years, I've got some hope for my treatment plan and the future. I'd say it's worth it.
 
Hang in there little lady... you've been through a lot! I hope things will get better for you on a daily basis. It sounds like you have an excellent medical team as well a positive outlook on life. That's a great start. I also appreciate you sharing with us. Best wishes.
 
Thank you all. I'm pretty lucky with my team, yeah. I've another update but this one isn't quite so positive... I'm nearly two months on TPN, and honestly? It's going fine, objectively. I'm gaining, and things are okay. Mentally, though, I'm an absolute wreck.

One thing you need to know about me before we carry on - I have obsessive-compulsive disorder. My main category of obsessive thoughts centers around contamination. I think you can see where we're going here. Like, for example, I can't even handle raw meat for cooking without having gloves on AND deep-cleaning everything in a metre radius around afterwards. Anything that has the potential to make me ill gets obsessed over. It's irrational. I hate it. But one of the key defining features of OCD is just that - knowing it's irrational. It doesn't make the thoughts go away or get easier to deal with.

So, you can imagine how much having a line straight into my heart is wearing on me. It is no exaggeration to say that I think of it every minute of every day. I am constantly low-key panicking: is this okay? Have I been scrupulous enough with my cleaning? Is the line safe? Am I safe? Does the skin around the insertion site look okay? Is my temperature fine?

And tonight things came to a head. I kind of had a breakdown this afternoon. See, because of a manufacturing crisis here in the UK (a TPN compounding company was inspected and found to have practices which weren't quite up to scratch - no products were contaminated, but they could have been, and the company had to change its ways sharpish, creating a huge slump in production) nobody is receiving compounded bags. Only standard, off-the-shelf mixtures. Nothing customised. Any vitamins or additives necessary need to be infused separately.

I am having a hard time with this, overall. First of all I didn't want to run vitamins + TPN at the same time, because it was too much equipment to keep sterile at once and also I was getting tangled up in having two wires come out of me (plus, the dual-chamber pump didn't fit in my supplied backpack, so I had no chance of going out once I was hooked up and had to carry around my IV stand at home). Ok, my nutrition team said, that's fine, you can do them separately. So now I'm spending 14 hours a day attached to something, and maybe an extra 3 hours on top connecting/disconnecting both infusions. It is putting a huge crimp in my living. I am, like I said, constantly anxious. I've put up with this as long as I can, but honestly? It's getting untenable.

So my plan is, at my next GI appointment (the 25th of October) to go in and ask calmly for an NG tube instead. There's no real reason why they should refuse - I've got all my counter-arguments mapped out already! I have gained enough weight that, while I'm still underweight, I'm not at immediate risk of organ failure. EN is cheaper and safer than TPN. I don't have obstructions high up enough that a feeding tube would get in the way. I don't have an intolerance to amino acid-based formulas, only an oral intolerance because I can't drink enough of it thanks to the rank taste. Nobody has even tried to use tube feeds to help my malnutrition (despite inadequate oral intake for years). Okay, yes, it might take me longer to put on weight, as I won't have 100% absorption like TPN does. But it is time I stopped ignoring my mental health. I would rather have it take six months rather than three (for example) if I can live my life, and be free from the fear and dread that is snapping at my heels constantly.

Part of me hates this. Part of me wants to just suck it up and live with it. TPN is probably going to be the fastest route to a healthy body mass, which means faster surgery, and I'll be pain-free sooner. But the mental cost is too high. I've bitten my tongue on all my reservations and blithely gone along with whatever the doctors thought best for 12 years now. It's time I made the decision that's right for me, not just the decision that's right for the numbers in my file. TPN isn't inherently bad. But I was already fragile mentally when this started - I only just came out of a suicidal spell in March/April. And I can feel myself sliding back towards it, with all the strain my OCD is putting on me right now. This is not acceptable to me. I don't want to come anywhere near that cliff edge again. So I'm doing what I think is best for me.

And that's that, really. I'll update you when I have an outcome!
 
Thank you so much for sharing. Sorry you are having such a hard time with all of this. Sounds like you have thought it through and have a plan in place. Hopefully your GI is on board. It sounds like the decision has been made and definitely your mental health is very importantt and if this is what you need to do, then go for it. Big hug.(y)
 
Hey Emma,

You can always talk to me on a pm. I have been a first responder, and I live in Canada. I always maintain strict confidentiality, and your secrets are safe with me.

I think you have things figured out for the most part. Be sure to hit me up if you need a vent or an opinion... Even just a talk! It's pretty hard to shock me and I'm not trying to flirt with you either. Thanks for sharing. Please be good to yourself, it's ok to have OCD. I know it sucks, but some people get it and it doesn't have to define them. I'm a little obsessive myself regarding food safety. I'm getting better with my anxiety and I'm sure you can get better too. I believe in you. :)
 
Hello from the hospital, once more (and thank you both for your support!) I’ve been here since yesterday morning and... hoo boy. Insertion of an NJ tube was booked for 8.30am (got up at 5 so we could drive to the hospital in time) and wow, that was not a fun way to start the day. I still don’t know what the actual rationale for choosing an NJ over an NG tube was, because I don’t have any gastric motility issues, but maaaan do i wish it was an NG. The NG portion of the insertion was over in seconds – I gagged a few times, but didn’t throw up (yay me!) and then the tube was in the stomach. And then came the hard part.

First it took a little bit of manoeuvring to get the tube pointing towards the pylorus, but soon enough we were through it and into the duodenum (aided by my thinking VERY vigorously about food - I saw this tip on the internet and asked the radiologists if it was effective and it turns out it is) where the real problems began. The tube kept coiling up and twisting back on itself at the duodenojejunal flexure, so it wouldn’t fully round the bend and into the jejunum. Cue lots of pushing and pulling as I have a panic attack on the table but have to lie stock-still on my back like a corpse because x-rays of my abdomen are going on at the same time. Not the easiest position to be in. All the time I was thinking oh no what if this doesn’t work? What if I’ve been through all of this and they just give up? Eventually my radiologist called his superior in to check the positioning and cue an anxious ten minutes while they flushed barium through the tube and discussed where it ended up (“but isn’t it pointing backwards towards the duodenum?” “No, it can’t be, because the contrast is going downwards, and if it were pointing the wrong way it’d be going backwards into the duodenum.”). Finally the tube was stuck to my nose and I was able to head upstairs to wait while the ward prepared my bed. This took a good few hours and I used the rest of the time to cry and shake and process the event. It feels odd because, written down like this, it doesn’t seem like a big deal. But I was so fearful and panicky the entire time and that would make my throat constrict around the tube and the constant pulling and reinsertion – it was overwhelming.

But it’s in now and we’re using it for feeds. We started really slow - 10ml/hour - and that ran overnight, and we’ve only just pushed it up to 20. The hope is to switch me to a higher-energy 1.5kcal/ml feed and increase the rate over the weekend. Our goal is to hit 70ml/hour by Sunday, and hopefully even further than that so we can reduce the time I spend connected (with the current plan, it’d be 17 hours at 70ml/hour to hit 1785 calories). If I’m tolerating the enteral nutrition, I should hopefully have my Hickman line removed and go home next week. I’m equal parts hopeful and yet nervous (because what if it doesn’t work?).

IBD-wise, I’m holding steady, but with less pain than before, which is nice. Appetite is also nice and constant! But I’m developing antibodies to Infliximab with still no real response to it. So if that remains the same they might decide to stop it. I don’t think they’ll initiate another new therapy until my surgery is completed.

In terms of the rest of my life... I finished my summer internship and have been offered a temporary job at the same company, because they know I’m taking the year off of university to have surgery and offered some flexible work so I have something to do instead of sit at home all day. I’m really excited about this, I think it’s just the distraction I need to keep depression at bay. But I’m also using the time to craft more, read more, and live a bit of a slower life than I used to. It’s nice, and whenever I feel guilty with my sedate lifestyle I look at the number on the scales go up and know it’s only temporary.

So that’s where I’m at. I’ll be back in the next few days to update how things are going with the EN – and I’m really wishing for a good outcome. PN was excellent at giving me the nutrients I needed, but ultimately the psychological price was too high and it wasn’t the right option for me at the time. When I was admitted in summer I needed to gain 10kg at a minimum to be fit for surgery and I’ve gained 5kg so far. I’m hoping that EN will (even if it’s slower) help me gain the rest.
 
Emma, this is quite a lot. You'll get there. It seems the hardest part is over for now and you will gain that weight needed for surgery.

That's so great about the job opportunity that offers flexibility. I hope you have some visitors while you are there. We appreciate you sharing your story.
 
Hi Emma,

I too am happy about your new position and the flexibility it offers. The hospital sure isn't any fun though... It sounds like you did as well or better than I could have done. I think I would have anesthesia for something like that because I would likely have a severe panic attack. :( I'm very proud of you for being such a trooper! I wish you the best outcome, and will be thinking of you. Thanks for the update. :) Be sure to keep in touch. Big gentle hugs.XX
 
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Well, I had an MRI a week ago today (last Thursday) and by a Friday night my surgeon had come to see me. “How about we try and do it tomorrow morning” he asked. I clearly wasn’t in a position to say no.

So on Saturday morning I underwent an emergency strictureplasty with resection and stoma formation. More of my bowel was damaged than we anticipated so my diverting ostomy is very short. It’s a jejunostomy with 40-50 cm of bowel preceding it... so basically none. I am not anticipated to be able to retrieve any nutritional value from food or drink until the ostomy is reversed. Until then, I’m totally reliant on parenteral nutrition and fluids.

i don’t know how I feel about this. The surgery itself went well and was much shorter than my first surgery (10 years ago yesterday!) and I needed minimal pain relief. I’m healing okay. I knew it would happen, and in a way I’m fortunate it’s so soon, because I have more time to heal before I restart university again next year. But I’m stuck in the hospital for an indefinite length of time for the second time in three months. The gastroenterologists are taking their time debating treatment options for me, and despite my surgeon saying that it’d still be possible to eat for pleasure every now and then as long as I can manage increased stoma output, I’m ready to scream the next time a healthcare assistant hasn’t read that I’m NBM and offers me breakfast. I’m struggling with the dependency: having to have someone measure my output of urine and stoma and drain and being trapped in a bay with five other sick people who come and go far more quickly than I do. Nobody can tell me what I need to do or display to get out of here quicker and I’m really frustrated about that. I am struggling a lot, not with the stoma much, nor even maybe with being unable to eat (which has utterly destroyed me so close to Christmas) but with losing my freedom. I just want to leave.
 
Hi Emma, it is difficult to have to be dependant right now, but you are in a hospital healing, and this won't be forever. You will be out of the little room, although I'm sure it feels forever for you. I just want to send you a big hug and send warm healing thoughts your way.
 
Hospital is so boring and miserable but try and hold onto how well you are doing and you are getting through the plan agreed in September- get weight up for surgery, tick, surgery, tick. Now you’ve got to get healed up for your reversal. So lots of rest, gentle exercise when you can manage it. Distraction might help, books or audiobooks maybe? Podcasts? Magazines and puzzles? My advice would be not to push to get out before you are really ready - don’t put your body under any stress. Be kind to yourself, you’ve been through so much and you’re doing so well.
 
I have had a similar roommate situation in the emergency surgery section. I was allowed to just pee in a jug and write down how much volume though. I have a feeling you wont be there much longer. You are pretty responsible in my opinion and you sound legit frustrated. I always felt like it was too long of a stay in the hospital after my surgeries. It turns out I probably was in there for my own good. At least if something else were to happen you could be dealt with swiftly. I know it sucks... feel free to vent. Big hugs.
 
I forgot it had been so long since I posted! Sorry about that.

Doing a lot better now. Finally released from hospital on the 4th of December on personalised TPN bags (there's a supply crisis going on in the UK at the moment so I am extremely lucky to be on these. Pre-mixed bags wouldn't cut it because I need so many more fluids because of my SBS, so if we didn't manage to get compounded TPN for me, I would have had to stay in hospital where the hospital pharmacy could mix it for me!). My TPN is just under 3000ml, and my fluid balance was positive for a good few weeks in hospital on that combo, so they let me come home.

I'm eating and drinking for the taste only, and also to keep reacting to hunger signals so I don't lose them completely, but it doesn't do anything for me at all - in fact, it's kind of harmful, since it dehydrates me more, but everyone agrees it's better to adjust my TPN volume and let me eat, because it's just too difficult otherwise. Especially at Christmas! I wasn't eating very much before surgery anyway, and I'm still not now. Just a couple of sandwiches a day, and a couple snacks. I had a tiny Christmas dinner and it was the best thing ever! I'm so grateful to be able to have even that, because when I made my last post, I didn't think they'd ever let me stop being NBM.

I'm getting used to my stoma. I don't mind emptying it five/six times a day because it is just so quick! I'm in the bathroom like a minute max. Takes me longer to wash my hands than it does to empty my bag! And changing it is fine too. It's nice and quiet first thing in the morning so I just do it then. My only gripe is that the high-output bags are really big (since they need to accommodate a lot of liquid) so the spout reaches halfway down my thigh. I used to live in leggings and skinny jeans but those are out now!

I started back at work on the 9th, at the same place I did my summer internship. They offered me a temp job there because they knew I'd be taking the year off of university for surgery and would be bored with nothing to do! Plus they really liked how well I took to the work so they invited me back. I was actually really glad that I got that first surgery out of the way before going back! It's been great. I feel like I'm being productive AND I'm getting mild exercise in every day by walking to the train station, then from the station to work etc. I probably wouldn't be exercising as much if I just stayed at home.

Before I left hospital, I had a loopogram (kind of like a stoma contrast scan) to assess whether the rest of my small intestine is structurally sound, because we didn't only do a strictureplasty but a couple of areas needed resecting, too. So there were a bunch of potential areas for anastomotic leakage. I have a loop jejunostomy, so the top part is where stool (although it's not really stool yet!) comes out and the bottom part just secretes mucus because it's not in use. They put a tube into the bottom part and put some contrast dye down it so they could see on x-ray whether anything was leaking. Luckily, it wasn't! There aren't any massive areas of stricturing left, just a tiny tiny one that can be dealt with when I have my reversal.

So now I'm just waiting, really. I have an appointment with the nutrition team and the GI psychologist on the 7th (woohoo for fitting two appointments on the same day!), and with my GI on the 17th. The current thinking from the gastroenterology team (they hold meetings about patients on biologics) is to try Humira again, because, unlike Remicade, I didn't have antibodies when I came off, and they're thinking its lack of efficacy was due to the fact that my disease was so bad it needed surgical management. Now the strictures are gone, they're hoping it might do its thing to put me in true remission. That said, after surgery, my CRP was 3, which seems astonishingly low given that there hasn't been any change in treatment yet! But I'll find out more in January.

The only negative is that, relying so heavily on TPN and without my intestines in real use, my liver enzymes are starting to rise. It's not happy. This isn't uncommon - it's known as intestinal failure-associated liver disease (IFALD) and it can range from just abnormal blood tests to actual liver failure. But since I'm not to be on TPN for too much longer, I don't know whether they'll want to alter my TPN composition or just watch and wait. More questions for next month, I guess!
 
Oh Emma you have really been through hell and back :( I am grateful for your updates as I think it is interesting to follow people's progress over a long period of time, particularly as so many of us are diagnosed so young. Hopefully regardless of treatment, this surgery should put you in good remission for a few years. It does scare me what your GI said about repeated bowel surgeries. I had my first 8 years ago and, perhaps naively, really want to believe I won't need another. But things can change quickly and all we can do is keep putting one foot in front of the other. I think having a good GI team is key, which I think you have found too. We shouldn't be afraid to speak out when things aren't going well, instead of suffering in silence. Being moved back was the best thing to happen to you. I hope your recovery continues to go smoothly.
 

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