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11-08-2016, 05:07 PM   #1
emmaaaargh
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Update on my life

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!!
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Hi, I'm Emma!
19 years old.
Diagnosed: Crohn's disease, August 2007
Currently on: waiting to start Humira!

11-09-2016, 08:21 AM   #2
Tony H
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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
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11-09-2016, 06:02 PM   #3
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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!
12-08-2016, 12:50 PM   #4
emmaaaargh
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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 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 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!
12-14-2016, 08:06 AM   #5
littlemissh
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I hope your appointment went ok last night.
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Diagnosed Crohns small bowel 2010,Gastroduodenal crohn's Jan 2012. Gastroparesis june 2014.
Duodenal perforation/peritonitis nov 2011. Portacath placed Nov 2013. Gastric pacemaker 2015.
Perforated jejenum/peritonitis oct 2015, PEJ for enteral feeding nov 2015

On Humira every 7 days, intermittent iv iron, regular blood transfusions :faint:
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12-14-2016, 09:38 PM   #6
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Glad to see you back emmaaaarg! Been wondering how you've been doing!
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01-25-2017, 05:57 AM   #7
emmaaaargh
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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!!
01-25-2017, 06:19 AM   #8
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Good luck!
01-25-2017, 09:17 AM   #9
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Best to you
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01-26-2017, 08:36 AM   #10
eleanor_rigby
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Hey Emma how did you get on?
01-27-2017, 09:28 AM   #11
emmaaaargh
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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.

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
01-27-2017, 10:23 AM   #12
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Fear of the unknown can be worse than the actual event.
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01-31-2017, 06:30 AM   #13
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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 so I'll be back with more this evening or tomorrow, hopefully!!
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?

01-31-2017, 07:50 AM   #14
emmaaaargh
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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
02-16-2017, 11:36 AM   #15
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wish you all the best :*
05-12-2017, 05:32 PM   #16
emmaaaargh
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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 💙
05-12-2017, 06:09 PM   #17
ronroush7
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I hope better things for you.
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