Crohn's Happens

Crohn’s Diagnosis - March ‘16 Remission since - September ‘17 Feel free to have a look around and ask questions, and I'll answer in gory, disgusting detail. Newly diagnosed with IBD and feel alone? Send me a message!

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Blog’s Birthday!

Hey everyone!

Long time no post. I think that it’s almost or is a year since I started this blog. Whoop!! I remember going crazy when I got to 10 followers and now I’m at 300+ it’s amazing! Thanks to you all for reading my (hopefully) funny, sometimes dark posts. My aim for the blog was to try and make light of IBD, and also helping others realise that they’re not alone in this. That was basically the main reason, but for me. I knew no one very well with Crohn’s and I felt really isolated. But since starting need-a-new-bowel I’ve come to know some amazingly brave people!

Looking back on the year, it’s been a bit of a rollarcoaster.

Life Update: At the moment I am feeling great! Over 3 months post op and I’ve only had a couple of twinges! Not comfortable saying I’m in remission just yet just in case I jinx it. I’m at uni and loving it and Crohn’s aint bothering me at all at the moment!

Thank you all for your support!

Here’s to many more years!

-SJ

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Post Op

Sooo it’s been a while since I’ve blogged. So, sorry if you’ve been eagerly waiting for the next chapter of my life, although you’re probably a very small minority which consist of 50% my mother. Hi Mam.

A lot has happened, sort of. I mean not a lot compared to a healthy person but for a spoonie it’s been going pretty good. I had my op 6 weeks ago and recovery is going amazingly. I’m currently at uni despite missing three weeks of lectures. Scar’s healing up nicely and I think, think, I might be in remission. I’ve thrown up once in all that time compared to at least twice a day every day before the op. Practically no Crohn’s symptoms at all which is just astonishing. Even though I’m still in recovery, I’ve gotten my life back. I can do, already, so much more than I used to! I’m even going to be joining a gym soon which is something I would’ve thought to be insane a few months ago!

If you’re contemplating having an op for IBD, from my point of view it is 100% worth it. Obviously don’t just go off my word, but it’s amazing how much I’ve changed already. People who haven’t seen me for a while are telling me how well I’m looking. It seemed so daunting before the op, the whole procedure, long hospital stay, long recovery time. But to be honest, I didn’t see much difference in my behaviour after the op compared to before. Different type of pain, maybe a bit more mobility issues but those soon passed. I was spending the first few weeks in bed, just like before. It didn’t seem like a massive change in behaviour.

If you’re fighting towards remission, keep going, you never know when it’ll come. Every time you try a new treatment you hope “this will be the one”. And one time it will be.

Keep going!

-SJ

(P.S sorry for the long rambly post. Won’t happen again, probably)

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Dear Hospitals,

Please, please, please have softer toilet paper! Especially in gastro wards.

Yours faithfully,

Everyone with a bowel disease.

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Catch up.

Long time no blog...

I’m having an operation in two days time... And I’d be lying if I said I wasn’t scared. I know my surgeon is fantastic and has done well over 100 surgeries and has an amazing record, along with the fact that I should be in remission after the op. But there’s always that though in the back of your mind, that doesn’t make any sense but puts doubt into your mind.

It probably doesn’t help that this is my first operation that I’ve been waiting for rather than an emergency one. All my dreams for the last few weeks have been about it. They always end just as I’m being given the anaesthetic. Today’s the first day since being told the actual date two weeks ago that I’ve freaked out about it. Still in freak out mode now so yeah.

Anyway, probably post an update after it so see you then I guess.

-SJ 

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Fatigue.

Let yourself be tired. Do not beat yourself up about it. Autoimmune disease? Your body is fighting itself 24/7. Professional boxers can only last a few minutes while being beat up, whereas you have been putting up with it for days, months or even years. Mental illness? Your brain has stored all your memories, created all the emotions you've ever felt and kept your body going throughout your whole life, and now it's messing with you. How are you expected to keep going when your own mind is pulling you down? Long term illness? You've been struggling with this for a while, everyday wishing it'll go away. That is exhausting. Fatigue is a big symptom in so many illnesses. On good days, the fatigue is always there. Never underestimate it. Take it easy

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Actual Good News.

Yesterday was colonoscopy day and everything went well! I was surprisingly okay afterwards which was a massive shock, and so far I haven’t crashed yet which is very promising.

Apart from in my ileum, the rest of my bowel looks really healthy and the Crohn’s hasn’t spread which is amazing news given how bad I’ve been over the past few months. My duodenum may be stuck to a bit of my bowel which could be causing more pain than there should be and also maybe the vomiting too (this is an educated guess so maybe not).

Next steps are surgery which will happen quite soon after I get the results of the biopsies, which should be back in just over a week. So I have a better idea of date now and I am actually looking forward to it. There is an end for a bit. Hopefully, because the Crohn’s hasn’t spread, I’ll get quite a few years of remission which would just be amazing. 5 years would be fantastic, especially given how I’ve only been diagnosed for over a year and that time feels like forever and I actually can’t really remember the time before that much.

All in all, everything is good. Well good for a spoonie, for anyone healthy it would be really bad, but I’ll celebrate this.

I’m going to risk a few night outs before the op, given that I am now a *ahem* responsible adult, and I’ll be out of action for a while. I’ll deal with the flare ups as they come, it should be worth it as hopefully I won’t have to deal with it for much longer (temporarily anyway).

Passing on the good luck to anyone who needs it and believes in luck, if not, disregard this sentence.

-SJ

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The Day of Moviprep is Almost Upon Me.

Tomorrow is the day I start my moviprep. How exciting! Long time readers of my blog will remember that my hatred towards moviprep is beyond the normal amount. Ew. I've had a few tips for making it slightly more bearable, like drinking it ice cold and maybe from a straw. If anyone else has good suggestions I would be eternally grateful! The actual colonoscopy seems easy after the moviprep's done. -SJ

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Bad Places to want to Vomit #1

Highest part of a ferris wheel.

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The Morning of a Big Event.

Me: Oh wow, I feel really lucky, I'm actually feeling okay this morning.

My Body: *cracks knuckles* Oh boy, you are so very unprepared for the day.

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Birthday.

Today marks two important events in my life: my 18th birthday and the first time I actually asked "why is this happening to me?". After throwing up for the third of many times today, generally feeling rubbish and pretty bad pain, I asked myself this. I was an emotional wreck at the time so I don't think that contributed to my woe-is-me mentality. Why the hell not me? It's not like there's a list of people who's going to be ill, I haven't done anything for this to happen. It's random(ish). I'm not a religious person in the slightest so for me to question something while assuming there's a being controls everything is a bit odd. Once I am in remission, and hopefully that day will be in the not so distant future of a few months from now, I'll be able to carry on with normal life and do the things I enjoy again for longer periods of time without having to run to the bathroom to vomit. Maybe that day I'll be glad that it is happening to me as I would be a completely different person. Side Note: I used a locked disable toilet for the first time today, and the barman was really helpful and completely judgement free which was so nice, I offered to show my "Can't Wait" Crohn's and Colitis UK card but he didn't want to see it. We need more (presumably) healthy people who won't question someone's disability and also celebrate when (again presumably) healthy people are considerate and understanding towards people with both visible and invisible disabilities.

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I am currently on a course in London for science and stuff. It is the first full day here. I have already vomited and am exhausted from a full day. I have a colonoscopy a week to today so I'll be home for that but I have no idea how I'm going to cope until then. I get almost no free time which means no time to recuperate and actually have enough sleep. I really don't know how I'm going to finish this.

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Well, being slightly ill was fun while it lasted!

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Down Day.

Today's been one of those days where I wish I didn't have Crohn's. I've felt this build up over the past few days, but I think today it's reaching it's peak. I'm just concerned that my depression is coming back too (or more accurately it's getting worse that what I'm currently used to). I want to cry, but also don't want anyone to know about it. I'm in limbo knowing that I need surgery way before the end of the year but not having an actual date for it. I've got a colonoscopy next month so that the surgeon can have a better idea of what's going on in there.

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Crohn's Chat-Up Line #1

Are you my inflamed intestines? Because I need to take you out!

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Dirty Look.

Well yesterday was the first time I had a dirty look from someone after using a disabled toilet. An elderly lady without any mobility aids so you'd expect her to know better. It really hit me as I'm paranoid what I'm going to do if someone does ask me about it; show my Crohn's and Colitis wristband, make them wait until I grab my tablets?

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Hello,what is your opinion on people who suggest a vegan diet to reverse Crohn's disease?

Hello!I will be more than happy to be recommended it if you have Crohn's and it's helped alleviate your symptoms (I'm not sure how you mean reverse as it is a chronic illness). However, being of mega scientific mind (I like to challenge everything if research is lacking a bit and science is basically my life), I am very skeptical about it so I'm not 100% sure that it would work for me. Of course everyone is different and there is no "one size fits all" cure (the word cure is used loosely as there is no cure). Thanks for asking!-SJ

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Immune System: I AM VERY ANGRY!

Me: That's okay, if we just talk it thro...

Immune System: ANGRY! I AM GOING TO ATTACK THIS!

Me: No, please don't! That's healthy!

Immune System: *punching everything* ANGRY!!