Outpatient Appointment.

I kind of forgot I had this blog & my appointment was last Thursday, yeah a bit behind on updating.

Yes sitting in the waiting room had me near passing out with anxiety but I got through it & I know it’s an important thing I have to do. So here’s what went down.

The appointment itself went really well, my specialist was getting watched by another doctor so the room was a little busier than normal. He’s really happy with the way things are with me, my blood count came back great so he wants me off the iron tablets (one less damn pill to take!!!). And to my relief I don’t need camera work done, hurrah! Apparently you need camera work after a year of being diagnosed to make sure all the inflammation has died down but that week the hospital has started doing a new test for testing for inflammation & it’s a simple stool sample, that’s it. I was so relieved. Imagine if my appointment had been a week before! I’d would’ve had to have an endoscope done. I got my NHS letter in yesterday just going over what was said in the appointment, plus it said if the faecal test comes back >250 I’ll need camera work done but if not then I don’t need to see him until a years time. I’m now going to have to suffer anxiety all over again waiting for my test results to come. I mean I feel fine but who’s to say my colon feels the same way?

Anyway I had a fun task of collecting a sample, taking it with me to the receptionist at my GP & trying to hide it the best I can. Couldn’t have been put in an envelope? It’s a clear bottle with a sheet of paper saying what the test is & where it has to go. Ugh, you’ve no dignity with this disease, let me tell you!

Even though I have terrible anxiety, every time I leave my appointment I feel more optimistic, I think hearing him say that I’m doing great just puts me at ease. The people at Great Western Hospital in Swindon are the nicest folks there, they really do a grand job.

 

Anxiety and IBD

I have an appointment this Thursday for a check up but for the past week I’ve had severe anxiety over it. It’s literally a review to see how I am doing but the thought of going always makes me sick to my stomach (this will be my third visit as an out-patient, my other 2 times I was terrified then too, I also had a third visit which was my CT scan but even then I was in and out in five minutes but I was still scared as hell).

Hospitals scare me, they are depressing and scary. I was there for 10 days and it is something I am absolutely terrified of repeating, so going for a check-up just reminds me of the long stay I had there. It’s absolute fear. My anxiety is destroying my body. It’s awful. If I stay in good health I’ll probably need to be reviewed every 6months to a year, I don’t think I can go through this much anxiety every year.

Does anyone have any tips, like should I tell my specialist when I see him? Like ‘yo doc, these hospital trips scare the beejesus out of me, help maybe?’ It’s not only that but we’re a good 40 minutes from the hospital and because it’s the NHS it’s always running way behind so I sit in the waiting room for what will be an hour gnawing at my nails until there’s nothing left.

Anxiety is a bitch.

My Story (Part 3).

Phew, I felt part 2 was probably really boring as I couldn’t remember what happened on what day and I essentially rambled a bit … a lot a bit. I think when loads of things happen, it’s hard to get down exactly what happened so I probably missed out a lot but you get the general idea that I basically didn’t sleep and I ended up hating my doctor for laughing at me. Oh and something I forgot to mention, the nurses never got my name right, I was Chelsie, Kelis, Kelly, Chels, Keely, Kayleigh, Karen, never was I called Kelsie, even though my name was in big letters, on a white board, behind my head.

So first night home and I slept like it was going out of fashion. This is when you’re on the mend but now you got to deal with this incurable disease mentally. The very next day I took a trip into Chippenham with my mum as I was desperate to get a change of scenery, to enjoy being out of the hospital and to enjoy that I’m not pooping a million times a day and my blood has disappeared. In my bowel movements … not in my body. I’d be dead if my blood disappeared from my body. Ahem, anyway I remember getting ready to go out, I put on makeup for the first time in months (when I was sick before my hospital visit, I didn’t bother with my appearance because I was so run down and miserable I didn’t care what I looked like and this was coming from someone who is generally well groomed … sometimes). I felt like me again when I saw my bony face with makeup on, it almost hid the fact that I was so skeletal, but it was a beautiful day and I popped on my favourite short, red dress. I took one look in the mirror and fought back the tears. When I was sick I wore baggy clothes to hide how skinny I was, so I never really paid much attention to it until I was met face to face with my skeletal body in my dress. My collar bone and my ribs on my chest were sticking out, I have small boobs anyway but they were flat as a pancake now, my stick legs looked ridiculous in my black tights, I was glad the dress hid my flat ass but that was about it. I looked a disaster. My mum kept throwing compliments to me telling me I looked so much better, I was starting to look healthy already but I just couldn’t get passed how skinny I was. Looking back, I have to laugh at how I focused on my weight and not the fact I had a serious disease, maybe it was easier for me to focus on that, almost like burying your head in the sand.

Anyway, I went out into the town, beautiful sunshine, feeling semi-presentable in my makeup, but very much self-conscious about my figure. My mum went into the bank and I took a dizzy turn, who was I kidding? I was so freakin’ silly thinking I could manage an afternoon in town on my feet all day after lying in a hospital bed for 10 days literally the day before hand. I sat on a bench outside and got chatted up by a handsome fella … self esteem back up to normal levels. Thanks handsome fella. But for my first day out and about, besides feeling a little faint, I’d say it was a success.

For the next few months I slowly came off the rest of my steroids, still on my salofalk granules, focused on what I ate, listened to my body when something didn’t agree with it and kept a food and BM diary. I was constantly terrified I’d have a flare up, I almost kept waiting for it to happen. To this day I still think this way, almost a year later. I’m hoping that will change but I doubt that. It’s the pessimist inside of me.

I had 3 incidents where I thought I was basically about to die. One time I think roughly in June or July, I had the worst stomach pain I had ever experienced in my life. I popped a couple of paracetamols and within 20mins there was a weird tugging sensation in my stomach and the pain instantly went away, I then proceeded to burp non-stop for the rest of the day. Fast forward about 4 months on and I had the same terrible pain two days in a row but this time it seemed worse. I couldn’t even stand up, it took my breath away, I was sweating, no matter what position I put myself into I couldn’t lighten the pain even by a fraction, I could feel the tears streaming down my face thinking ‘this is it, this is what sends me back into hospital and they’ll cut me open, as the drugs won’t be able to control it this time.’ Come evening time the pain subsided and I slept like a log (pain can knock you out as it’s a tiring thing to go through). The next day, I looked at my food diary, I looked back to when I first had the pain, then looked at what I had the past couple of days. Who was the culprit? BROCCOLI!!! I had made broccoli soup on all those days when I had pain, there was no other food I had which was the same bar the damn broccoli. I’ve never touched the stuff again and the pain as never returned. I didn’t have diarrhoea or blood, nor did I go to the toilet a lot, it was simply the pain. Thank god for my food diary for solving that problem. The other thing I avoid is anything overly sugary as it makes my intestines sound like I have a bunch of whales singing to each other, it literally only happens with sugary stuff so that’s been cut out.

One thing I did notice, about a week or so after taking my salofalk granules is my hair started falling out, and I mean a LOT!! Just as I was feeling better about my weight, I was now having a breakdown over my hair falling out in clumps, I assumed it was the granules as it’s listed as one of the rare side effects but when I went to see my specialist for an outpatient appointment he basically said out of all his 500 patients on salofalk, I’d be the first one to say it was the drugs causing my hair to fall, he basically dismissed it which upset me a little because for most people their hair is something precious and to see it fall out to the point you have bald patches is really distressing. I took matters into my own hands and looked into what I should take. I started a B complex and biotin, after a few more months of hair loss, it stopped! My hair is back to being its normal self, if not a little healthier, so that’s another thing I conquered!

Since being out of the hospital I have had a few trips to the hospital as an outpatient and they’ve all been pretty positive. My specialist is happy at where I’m at (I actually have another review coming up on the 6th of April), I’ve had more blood taken to see how my iron levels and the like are, I’ve had a CT scan where they injected something into me that made me feel like I peed myself (I didn’t, it was just the sensation but the lovely nurses warned me of that), the specialist told me that the CT scan showed that all was well and the problem ulcer was at the healing stage and it was basically clearing up. So far so good, it doesn’t stop me from having crippling anxiety when I go to my appointments but eh, that’s just something I need to get used to. I have been back to my GP once for an ear infection and I was seen by none other Dr. B, I fucking wanted to head butt her there and then but kept my cool, she was even like ‘ah yes, how are you now? I see in your notes you had quite a time at the hospital, at least we know what it is now.’ Bish I knew what it was before you did but you were more concerned about sending me away. Ugh, let it go Kelsie, let it go.

So far I’m just listening to my body, I take my salofalk in the morning, my iron pills, Vitamin B Complex, Vitamin C + Zinc and Vitamin B6 in the afternoon and in the evening I take Acidophilus and Biotin in the evening. I try to eat as healthy as possible, I work out regularly and I try my best to be ‘up-beat’ about this disease. I hope psychologically it won’t keep on affecting me. I can’t let it rule my life. I don’t know when I’m going to have a flare up, I keep my fingers cross that I remain in good health and I hope that one day a cure will be found. That’s my story, up until this point, with IBD. I don’t know when I’ll find out what strain I have of it, the specialist said that he thought it was crohn’s looking at the flexiscope images but he then said that because I was so badly inflamed, it would have been colitis after all, but all I know is for now I’m in the 15% of IBD-ers who don’t know what they have. If I remain in good health then I don’t care what I have just now. I hope you all have good health and try to look for the light when you’re in dark times. If any of you want to talk about it then I’m all ears, not literally, that would be weird.

TTFN

Kelsie.

My Story (Part 2).

I’m not going to lie, writing part 1 was hard because I had almost mentally blocked out what I went through but being reminded of it made me feel happy that I now know what I have, I don’t have the terror of thinking I was basically dying. Writing this out has had a weird therapeutic feel to it. Anyhoo, this about my hospital stay in Swindon’s Great Western Hospital.

I arrived at A&E again, for a Friday late afternoon it was surprisingly empty. Some staff member asked me loads of questions where I essentially repeated my story over and over, struggling to talk because I had zero energy at this point. I was put into, I guess, extra A&E section, where it was for people at high risk. I had my pulse checked, my temperature checked, my heart rate checked, all were bad. I then had to repeat my story again to the doctor there (second time that day), she stuck a finger up my butt which hurt this time as my ass was friggin’ red raw, I had more blood taken, then left for a couple of hours with nurses checking on me now and again. I was scared, tired and had no clue what was going to happen to me. I had my chest and abdomen X-Rayed, wheeled back to my bed and left again. Finally someone told me I was to go into an observation ward for the weekend (obviously no specialists were on, only local weekend doctors), so I was put in there, hooked up with a drip to get my fluids, had a nurse ask me loads of questions, repeated my story for a third time then given a menu for dinner then my mum and step-dad bought me some basics as I never took a bag with me then left me. I was TERRIFIED! I had never stayed in a hospital before, I didn’t know what to do or what to expect. I had soup for dinner, something really acidic, given an anti-sickness tablet, something injected into my cannula (I think it was antibiotics, I can’t remember), then left to ‘sleep’. You can’t sleep in a hospital to be honest. It was the only time during my stay were I was given the window bay, so I spent most of my night looking out, hoping everything would be sorted tomorrow and I could go home. I dosed off and on, finally sleeping only to be woken up with a nurse putting something in the cannula again whilst checking my vitals. I was hooked up to a faulty machine that beeped every 10 minutes which I ended up switching it off, I wasn’t supposed to but it was broken so there was no point of it being on. I was done.

The next day I was cranky, angry and desperate. I hadn’t slept well, I was getting no answers and no one seemed to know what was happening. My mum & step-dad came to visit where I essentially broke down in tears because I just wanted to go home. I didn’t appreciate my mum snapping at me to ‘stop crying’ but I forget she was worried too and doesn’t cope well in stressful situations, I just wanted them to leave as they weren’t offering me any reassurance. I had my books though, they were to be my escapism over the 10 days here. All of Saturday nothing happened, although I did almost start a fight with a nurse who wasn’t happy that I hardly ate anything, again they are not specialists and didn’t understand that eating was pointless as it went right through me, I actually believe they thought I was anorexic. At 7 at night I was wheeled down to the x-ray room to have further tests on my stomach, wheeled back, told I was moving to another room as this was now to be the men’s room. New room, new faces, new people to re-tell my story to. Oh and I was put next to a drug addict who yacked the whole night, yeah I didn’t sleep well that night either. Sunday arrived and a head doctor of some description came to talk to me, re-telling my story for the fifth time to her. She told me I was going to the Neptune ward tomorrow which was the gastro ward. I thankfully hadn’t thrown up once since being in the hospital as the anti-sickness tablets worked a charm but I was still going to the toilet maybe 5 or 6 times where I was still passing nothing but blood. I had more blood taken from me and was actually a little happy that I was getting put into a proper ward. But I was given a paper hat, yeah it wasn’t a hat. They needed a stool sample. I remember sitting on it and doing nothing, it was like my colon was like ‘NOPE, NOOOO, NOPE.’ Finally I passed some bloody sludge, apologised to the nurse that that was all I could do, and hoped for the best.

Monday I was wheeled to the Neptune ward and dumped in a bay that wasn’t a bay. That’s right, they had run out of room and I was shoved in a corner where it had no buzzer, no lights, no plugs, no curtain. Nothing. I asked the nurse what I should do if I needed help, she just laughed and said ‘oh just yell down the corridor, we’ll hear you.’ As a shy person I can tell you I wasn’t going to be doing that. My cannula was actually starting to hurt in my right arm, I finally got hold of a nurse who looked at it and said, just give it a few more days. A moody looking doctor came by with some junior doctors, asked me to tell my story again for the sixth time, they all took their notes then the moody doctor actually looked super pissed and said ‘your GP should have put you here after the antibiotics didn’t work, gastroenteritis would never last that long and they should know that. I am really disappointed that you were left as long as you were.’ I actually felt better knowing that even they thought my GPs were jackasses. I was then left again with a promise of getting a proper bay when they free up some room. I tried to sleep in my bay that wasn’t a bay but it really was pointless.

From now on I can’t remember what happened on what days so I’ll just talk about the different events. I was finally given a proper bay, where I could actually buzz for a nurse if I needed, I had more blood taken which I nearly passed out from, even the nurse was like ‘I’ll stop now, I think you’re going to pass out’. I was bored as hell, in my 10 day stay I read 4 books, completed 2 quiz books & listened to every radio station they had. I was moved again to a different room, then moved again to the bay that wasn’t a bay where the head/moody doctor yelled at the nurses for putting me there, apologised to me then moved me back into a proper bay again which I thankfully remained. I had a flexiscope done. Head/moody doctor said ‘it’ll be fine, it won’t hurt, you won’t need any sedatives, none of my patients has had a problem with it’ fucking liar. I did ask for sedatives (oh & I had an enema which was the weirdest sensation ever), they didn’t work and I near hit the roof when the camera went up against my inflamed colon, I actually cried out in pain (and I have a high pain threshold), the nurses were super kind not that did shit for the pain. The head/moody doctor came into my room and told me it was colitis (so they thought) then left me to ‘sleep’. I didn’t, I phoned my mum still in tears from the pain I went through. The next day I had a lovely IBD nurse come speak to me who explained the results of my flexiscope, gave me a million leaflets on IBD, explained why I was going on steroids, the side effects, everything! Even more awesome was she was Scottish so we chatted about Scotland most of the time. I felt more reassure but I already knew this is what I had, the internet was right for once so it was no shock. Oh and I talked to a nutritionist but she didn’t really have much to offer as she straight up told me I was a smart girl who probably knew what I should and shouldn’t eat.

I had more blood taken although I had now had a collapsed vein (which meant they had to find different places to take blood), the cannula in my right arm had made my hand and arm go completely stiff and bloated and FINALLY someone removed it and said I no longer needed one anyway. The relief of actually managing to move my arm was magic, I felt I could sleep a little better too. Well during the day, fuck trying to sleep at night. I was in a room with three other old women, where one shouted NURSE (instead of using her buzzer) every 10 minutes during the night, I also had the bright ceiling light shine directly onto me, so yeah I didn’t bother sleeping during the night. At lunch times my mum would take me to the cafe for something to eat as the vegetarian options in my ward’s menu weren’t great and quite frankly I preferred the cafe food. I felt a little better, but I was still passing nothing but blood but definitely not as frequently, I sometimes had days were my stomach felt a bit dodgy but I put it down to stress. The steroids were clearly working for me. I spent another weekend in the hospital with a promise of going home on Monday. Although that weekend consisted of more failed sleeping attempts, an epic nose bleed, more failed attempts at trying to draw blood and essentially turning into a human pin cushion. But Monday was home day.

Monday arrived, head/moody doctor came to see me with his juniors trailing behind him and this is where I nearly socked him one. He explained everything to me again with colitis although he said that wasn’t a definite diagnosis, it could be Crohn’s as they saw the cobble stone effect in my colon which was more a trait of Crohn’s than colitis. He then turned to me and said, we could have more camera work done if you like where I said ‘no thanks, I’d rather wait until I’m healed, it hurt so much when I got it done.’ He had the audacity to fucking laugh in my face at that, I’m surprised he didn’t drop down dead from the look I was giving him, even the juniors looked awkward. I have just been through a horrible nightmare, with a traumatic experience with a flexiscope and you LAUGH at me. Even my IBD nurse advised me to not get camera work done anytime soon until I’m completely healed. So, even though I was still passing nothing but blood, I was given a prescription of steroids, calcium tablets and anti-sickness tablets and discharged, I went down to the waiting area to get my meds (was there for 4 hours, luckily my mum & step-dad were there), finally got my drugs, nipped into the car, drove forever to get home (tea-time traffic) and ugh, home. Mum did up my room and made my bed so it was the best sensation in the world to collapse on my beautiful, comfortable, soft, gorgeous bed. I had dinner which was macaroni cheese and it was the best thing I’d ever eaten. I had continued to lose more weight in hospital so my goal was to get my weight back as I was a friggin’ skeleton. That night I went to bed and slept (only woke up once, as someone in my dream shouted ‘NURSE!’ yep that haunted me for a few nights). I woke up in the morning feeling like a new person. I went to the bathroom and it was solid with a teeny tiny trace of blood. I nearly cried I was so happy. I told my mum and we both went ‘YAAAAAAY’

Happy to see poop. Yeah, this disease makes you be happy at the strangest of things. Part 3 will be about what I did after my hospital stay.

TTFN

Kelsie.

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