Free Falling..

I am Louise and I am 24. I have Crohn's Disease. These are my thoughts, struggles and battles. Expect tears, celebrations and paranoia. You can also find me on Twitter @sapphire20

[youngcrohns]

A quick note

To all my followers on Tumblr,

The New Year saw me move my blogging to Wordpress.

I haven't stopped sharing my experiences with Crohn's Disease, I'm not sick and unable to write, I've just decided that the best way to help my message grow is on another hosting site.

If you would like to still reicieve my posts, feel free to subscribe via email or indeed follow my blog through Wordpress. My posts are still linked to my Twitter feed and I'm throughly - if not more so - active there if you want to talk.

youngcrohns.wordpress.com

twitter.com/sapphire20

I've also been nominated for not one, but two WeGo Health Awards happening this month - Unsung Hero Award and Rookie of the Year Award - so please keep an eye out on the WeGo Health website for more information as it comes - www.wegohealth.com

This is far from goodbye..

Louise :)

[youngcrohns]

So, I survived Christmas Day and Boxing Day.

I managed a good yet small dinner and even some Christmas pudding. I got through the night without problem until Boxing Day morning. I've been in silent pain ever since.

I don't think its anything I've eaten because the pain I have had continued throughout the day and into last night. It didn't keep me awake but it had returned this morning. And today I am due at work. And I feel sick to my stomach. And tired, so very tired. And frustrated. I would like more than just a couple days of being pain free. I know that my Crohn's won't go away nor will it diminish but I would like some relief.

[youngcrohns]

Many happy greetings for this festive period :) xox

[youngcrohns]

Result!

...and moving forward, slowly.

I last wrote on the afternoon of my bowel prep, on Thursday.

I got through the first hour of Moviprep without too much of a problem, it didn't taste as bad as I thought it might do - my experiences of Klean Prep for my MRI didn't really set me yup well for this - but after a hour, I was done with my first litre. I got some juice and got settled down for the runs to the bathroom. After about a half hour, I finally went - some 90 minutes after starting prep, but of course this depends on the person and how fast your digestion works - and it was extremely watery. Mission accomplished. The next litre of prep - 4 hours after starting - was difficult. It was hard to get it all down without feeling nauseous. Until my prep ended at about 9.30pm, I was continuing to go to the bathroom. I slept through the night and got up early for my scope to be quite sick. That was a lovely surprise!

I was ready to go and get everything sorted out, albeit abit nervous. My previous experience of pain and the expectation of the actually prodesure - knowing it would be longer and it might result in a longer recovery - I wanted to just get it over and done with. I was feeling sick with nerves and as I sat waiting for the nurse to call me into the Scoping Suite at Good Hope Hospital. I could feel my bowels waking up once more and I knew I would have little time before something happened, but given the evening before, I knew there was nothing inside of me. The nerves were getting the best of me.

I came through, got my observations done, and sent off to get changed. Then I was off to the actually procedure room and got settle down to have my blood taken and my cannula placed. It was painful. I was clearly dehydrated from all the prep and actually drawing my blood was so long and painful. We awaited the doctor and finally, I got my painkillers loaded into the back of my hand and then my sedative. It changed my mind about the procedure. I felt so much better and  I hardly remember feeling the scope, the camera going round the bends of my colon or the removal of polyps. I even felt well enough to watch the entire thing on the screen.

Obviously, having not watched it before, it was slightly surreal, but I remember vividly the pictures from both of my flexi sigmoidoscopies -the raised red inflamed lining of my colon and the tightness of the actually colon itself - but this was a completely different story; clear and clean and healthy. There was no new disease and no activity of the already discovered colon.

I got taken to recovery a little over half hour after the scope started and I got my obs taken again, and settled down to just relax. The magic of the sedative gave me a lovely chance to nap but I was soon given food - tea and toast, of course - and given my results.

The no active disease meant that there was going to be no change on my medication - at least for the mean time - but I would have to change my diet. It was clear to the doctor on the scope that I was getting IBS symptoms with my IBD and it was now fundamental that I take out groups of food in my diet in order to track their progress or failure in my daily lifestyle. These would include:

1. Coffee and fizzy drinks.

2. Red meat and Pork.

3. Lactose.

4. Wheat.

5. Yeast.

I would eliminate one of these every month for 5 months and see the effect its has on my Crohn's through a food diary. I did this back in the New Year when I first got out of the hospital and onto Humira before returning to work, but sadly I didn't continue it as well as I should have done. Now, it is important, so I must see it through. I am expected to see the dietitian in the New Year alongside my GI to discuss what happens next.

For me, I would really like to go off Humira. Sadly, I am still experiencing some quite significant abdominal pain and the bowels haven't been all the settled of late. I know that for this weekend, I could contribute these to my recovery - not bouncing back as quick as I'd like to - but really its been continuing before I started the prep and its still present today. Its difficult to get going in the morning, alot like it was before, and the Humira only takes the edge of it for a couple days. I am hoping that the dialogue for medication change can happen when I return to the hospital in a four weeks time. Until then, I'm armed with painkillers and Imodium's. Maybe that will be enough until then...

[torohs]

[youngcrohns]

I need a Crohns hide out like this.

[youngcrohns]

Prep Day

Its currently the last half hour before my first lot of MoviPrep begins and I am feeling decidedly nervous.

Why, I hear you ask? Well, as noted before, this is my first 'healthy' Crohnie check up on my colon. I was definitely very unwell for the last two scopes and I remember the horror that was the Klean Prep for my MRI scan in January.

So, taking in all the advice I'd asked for and have been given over the last two days, I mixed up my first batch of prep a couple of hours ago and am chilling it in the fridge. A whole litre of water mixed into both scashets in the packit comes out at a clean liquid. It doesn't smell too bad, but I plan on mixing it with some tropical squash - stronger than I'd usually take - and seeing how I go.

I've got a hour of the laxative prep, then one hour of a litre of my clear liquid of choice - I've gone for watered down clear apple juice - and then another batch of my prep. After I've finished that, one more litre of my clear liquid again. How I am going to mix my second load of MoviPrep and chill it is beyond me; I doubt by then I won't really care about the temperature of it, I'll just be glad of getting it finished.

In the mist of all this, I'm going to be glued to the bathroom. We have a few in the house, so I won't be desperate for someone to vacate one for me to use, but both upstairs off my bedroom and the loo in the hallway, I've got the wet wipes and nice toilet roll on stand by. I am prepared for the ugiliness that will be this prep.

I'm up early to get to the hospital for 8.30am for my admission. I am hoping the prep is the worst part of this. I have been experiencing all my Crohn's symptoms this week because I've been told not to take any medications to help. So quite literally, I am going like I used to do. There is quite clearly something going on inside of me, so that thought -that they will be able to see whatever problem/s I've been having - will keep me going this evening and tonight.

It might be all routine and very familiar to many Crohnies, but explaining it hopefully helps someone who comes across this and am as scared and nervous as I am.

See you on the other side..!

[youngcrohns]

How far do I go, with hanging on? Until I'm on the floor, unconscious, perfed bowel and all? Or do I advocate the hell out of my GI clinic appointment this afternoon?

This is the old age question I've been asking myself for the last couple months.

Do I stop taking the Humira? I'm in the process of doing what is necessary to examine what is really going on inside. If it is nothing, I'd like to try a med free life for a while. But I doubt that will be the outcome. The symptoms I'm experiencing aren't exactly cause for major concern but its still worrisome that Humira might be the only thing keeping me going.

The other options, I'm pretty sure, aren't much different. To my mind, they are Infliximab, Azathoprine or LDN (Low Dose Notroxate) all of which are powerful drugs. Hell, all Crohn's Disease medications do something that can't be done by our bodies, hence the title: INFLAMATORY BOWEL DISEASE, AUTO IMMUNE DISORDER. I understand that typically a GI would know the risks v benefits of such changes in medication for a Crohn's sufferer as myself - mine is located in my Colon and commonly called Crohn's Colitis (if you want to get technical) and is server, hence why I'm on / have been on Humira for a year  - before anything changes. And he is probably thinking why change things if they are working?

But, here comes the anger..

I know my body better than any doctor, nurse or health professional does. Their experience and knowledge does not go unnoticed by my brain and I do make an effort to understand and appreciate those two factors. But sadly, I'm the only one who know my body. I know what hurts it and what causes it pain. I control what I eat to avoid the pains in order to live my life in the best way I see fit at the present time. I'm not asking for the problem to be cut out and thrown away - I am not so naive to know that IBD cannot be cured and surgery is problematic, risky and sometimes not worth the aggro until ABSOUTELY NECESSARY - I am just asking for more options.

I can not live as I am now.

I will stick to a diet, a regime of good foods that my gut enjoys and can easily process. I will take medications on a daily basis. I will trek to the hospital for tests and scans and stabs with a needle if it needs to be done. I am and will be a good patient. But right now, I am a bad patient. Because I am disagreeing with the current treatment regime.

NICE - The National Institute of Clinical Excellence - in the UK set out the treatment guidlines for both Infliximab and Adalimumab for moderate to severe Crohn's Disease as being "a planned course of treatment until treatment failure (including the need for surgery) or for 12 months, whichever is shorter. Treatment should then only be continued if there is clear evidence of ongoing active disease."

I've achieved clinical remission with Humira since May of this year. I am hoping that these recent symptoms have not upset my disease and made it active once more. That would mean the Humira is now having no controlling effect on my bowels and I need to come off it. Or, if there is no activity, I have reached my 12 months, and should come off it.

Considering this, are these my only two options?

What if they decide to keep me on it, under their guidance? That is technically still allowed, if the patient and medical team treating said patient agree that is the way forward. That would mean another 12 months of injections every two weeks, more weight gain, painful joints and general moaning on my part of how awkward I feel. Preferable, I would like that to not be a factor. I would like my body to be the evidence I need to get moving forward. Yes, I can see that to some degree, finding a treatment that works is sometimes hard and few and far between. And complaining about a treatment that is working isn't exactly graceful of me, considering how hard it was to get to this point, and the others who suffer besides myself. But this is not healthy. This pain is disturbing my life. The weight gain is beyond the parameters for what I would ever consider 'okay', it is becoming a joke.

So, if all this is the case, how do I advocate for change? How do I go into my doctors office and tell him I am unhappy and want something to change? How far will he go to see me going down the right path? What if he considers this the right path? That no change is needed? Then what?

I am going to try and be more aggressive with my approach. Not in the way that makes me grumpy and ignorant and dismissive, but a gentle questioning of why this is happening and what are we going to do about it. Advocating for myself has always difficult; I was in no position the last time they changed my medications, because I was so unwell, I just nodded and had a nap before being admitted. I was very sick, I didn't know how to advocate for myself with my GI. I just took the pills and prayed for some relief. I was willing to climb the IBD medication pyramid to the near top in order to get better. I moan about Humira but it did help alot. But now, I've had enough of the other effects it has on my body. I'm only 24, I would like to not pump my body full of poison every two weeks, ta very much.

So, my reading for this afternoon is the following delightful posts by IBD bloggers and websites alike about SELF ADVOCACY.

The Bright Side of Crohn's -Advocating for your Medical Care

Healthy Place - Speaking Out for Youself: A Self Help Guide

Self Advocacy

[youngcrohns]

Exploring Bernie ;)

For many Cronhies, having a colonoscopy is the big prodesure. It is used to diagnosis, explore and treat Crohn's Disease. Friday is my first colonoscopy.

How? You might ask. How did you get this far without a colonoscopy? Well, my Crohn's was discovered by a Flexi Sigmodoscopy. I underwent two of them whilst being in a massive flare up and when my medications were failing. I remember the pain of someone exploring my colon with mostly shudder and dismay. I've avoided a full exploration of my large bowel for just under a year. As Humira started to work and I became healthier and I recovered, the need for more explorations diminished. I just have to have bi monthly blood tests to check my liver function and my CRP level. I was well and happy and comfortable for the first long period of my Crohnie journey.

Now, the time has come for my Humira annual review. Colonoscopy is mandatory for the review. So, its now time to get this over and done with; armed with a box of MoviPrep and three consecutive days off work, my next stage in my Crohn's treatment begins.

I am hoping that this scope is clear and showed my GI just how little active disease I have. The NICE guidelines state that Humira must be only used in maintenance of moderate to serve Crohn's for one year; in which if no active disease is present after 12 months of therapy it can be discontinued.

The effects the Humira gave me were great to start with; increased appetite, lower amounts of pain, less abdominal cramps, less frequents BMs and just a general increase in energy. For the most part of my 12 months on Humira, I've felt wonderful. But the last couple months have been draining. I've had a few rough days, here and there, where my Crohn's symptoms have been so painful I've gone back to painkillers and packets upon packets of Imodiums. I've also experienced quite alot of side effects; painful joints, back pain, ALOT of weight gain, general ongoing and continuous pain of my entire body. I feel good for three days after my injection and then I'm back to feeling awful. But I've been plodding through. I've continued to work, to socialise, volunteer and write and WORK. My goodness, I've worked. I must be insane.

I know I should take care of my body, that my health is more important than any job or person or event.. but I've wanted to be healthy and normal for so much of the time whilst I was sick; I'm hanging on for dear life.

[youngcrohns]

Last night at my friend Maes baby shower she was asked about where she would be giving birth. Several hospital close by offer maternity facilities including the new Lichfield Samuel Johnson hospital. She preferred that, because the nearest hospital - Good Hope, the one which oversees my. Crohns treatment - was deemed too horrible. It has a reputation- from past bad experiences and bad publicity - for being called No Hope.

Funny, huh? 

No, not really.

 I praise Good Hope for its excellent care for me and fellow Crohnies and collies alike. I walked home afterwards wondering why I didn't speak up more for my care there. It hit me this morning; the shame of IBD and the stigmas attached to a bowes disease. It frustrates me that raising awareness is not enough. So much more needs to be done. I will never stop feeling proud about my care and the support I get at Good Hope, but I feel sad that people don't know about the good they do. Reputation... I hope we can change that. 

[youngcrohns]

Let's be honest, we Crohnies sometimes barely have the energy to be anything but be sick. I used to be really sick, when I first got diagnosed, but soon the medication kicked in and I returned to my life. I went back to work, I started dating again, going out, participating in what I thought would help me. All of that was good, it still is, and for the most part, I got on with being as normal as I could possibly be. I remained in remission throughout the Spring and the Summer, and then the Autumn came around and I started to feel horrible again.

I'll admit, it was nothing like I used to feel. It was not much compared. But it still knocked me for six some days. And I have continued into the Winter feeling like this. Despite all the pain I feel every morning I wake up, I still go to work. I still go to my volunteering positions and I still have the most fun days with my boyfriend. All in all, not too shabby.

I go to work, and I have to continuously deal with questions and comments. Most of them these days revolve around my 'resilience'. For the most part I can ignore these comments; knowing that they are not made with hard feelings or any malice, nor do I even acknowledge them; I rise above. I just get on with my job and have nothing to say about it. But every so often, something gets said, not directly to hurt me, but it wounds me. Unintentionally; after all the other catty remarks have been erased and forgotten by my mind, does my brain decide this one will stick around for a while, I roll it around in my mind, muse over it, get frustrated and utterly angry.

I don't let this show. I have learnt alot about self control this past year.

This particular remark was made about my first sick day in 4 months, that I took just over a week ago. Why did I pick that day to be sick? Pick? First strike. Why? Oh, I don't know.. I have a chronic illness that sometimes gets the better of me and I need a little more time to recover than 'normal' 'healthy' people.But you don't look sick!Third strike. A classic comeback I've heard so many damn times, I should start charging for it. Well, I explained, I've been sick on and off for weeks now - honest truth; I'd been fighting a very bad cold for over two Humira shots and my joints were killing me, let alone the faitgue and breathlessness, now my butt was acting up - but no one knew about that.

I realised at this point, it was a pointless and thankless task explaining to people that I was constantly sick, to very many different degrees at any one point. At any given point, I have at least one thing 'wrong' with me. But I deal with it. I get up, shower and go to work and just power through. I smile and joke and make the most of being out of the house, because that's how I cope.

I think if anything, I could do with being abit more thick skinned.

That or learn how to be more mean through sarcasm...

[youngcrohns]

Oh how I wish I could be healthy once more!

Sometimes the conversations at work come around to be me, and how I “used to be” when I was “not sick”. Pardon me? Me? Not sick? Oh, yes, there was a time when I was just.. normal.

These past couple weeks things haven’t be quite normal for me. It’s been abit iffy since I worked a full week at work and since then my bowels haven’t taken that 40 hour week as anything good, deciding that was the time to start playing around and annoying me. Wonderful freaking timing as usual but it could very well be much worse. So, that being said, I’ve been back to the hospital for a few tests and nothings come of them, but the abdominal pains aren’t easing up. The urges to go to the bathroom are higher. Its utterly frustrating; not to mention slightly embarrassing and mortifying, the speed in which I haul my arse out of my seat in the direction of a toilet. I’ve got to return to the GI clinic next week and book time off work for a colonoscopy before the year is out.

I am dreaded it. Not the procedure, nor seeing my GI once more - he must hate meeting me, always a problem - but the fact I’ve got to explain to work I need some investigations done. YET AGAIN.

I look healthy to everyone. It’s been said many times, that they can’t believe I am sick. Oh, would you like to see my CT scans? Or my MRIs? Or hell, the biopsies they took out my colon last year? Would you like my medical records? How far do I  have to go to prove my illness?

It is the bane of my life. And yes, I accept that it is what I will always have difficulty with - explaining and showing people my illness. Because my face does not register as a “sick person”. UGH.

[youngcrohns]

So fight, fight on.. John Mayer is a wise lyricist. I shall do just that.

[anditslove]

[youngcrohns]

Day 24 - “If I had more than 24 hours in a day..”

Just a list:

Sleep.

Write more. My blog always suffered when I am tired or over worked. Those two things are always inter linked these days. UGH.

Work harder for the cause - CCUK

Talk more; I regularly don't have enough time to talk to all the Crohnies I already am freinds with.

[youngcrohns]

Day 23 - What’s something your doctors taught you or you taught your doctor?

My feelings regarding doctors has come around full circle this last 18 months. When I first started getting sick - for me it was food poisoning and the stomach flu - I was fobbed off with my symptoms being nothing more than just being dehydrated. Little did my GP know that I was falling to my first real Crohn's flare up. The elbow swellings - commonly called erythema nodosum in rare presentations of Crohn's disease - were missed by Orthopedic consultants as Cellulitis.

My trust in a doctor by September last year was at a low point. The flexi sigmoidoscopy they 'gave' me didn't' change my mind. I was certain at that point I was going to keep being poked and prodded for months on end before finding a diagnosis. Finally, a GI said "You've got Crohn's disease in your colon." AN ANSWER. A DEFINATE ANSWER!

I slowly began to trust again. I could then begin to put my faith into the treatments they suggested and adhered to them. Until I got C Diff for a second time. Until I got the Chicken Pox again. I was severely under weight and I was going to have to be fed by tube. I was at the lowest I could be. I was even immuno-suppressed, I hadn't got one. The Azathioprine has wiped my already weakened system away and let everything and everyone attack it. I didn't know where we could go from there. I just sat helplessly in an isolation bed thinking that this would be my life for a very long time.

Flash forwards through my remission six months ago, to today. I am currently at the end of 12 months of Humira - Anti TNF medication to correct my immune system genes - and I feel awful again. Not flare up awful. Not Crohnie sick awful. I feel utterly unhappy. My medication is working and has done its job for almost a year, but now, I am finished with it. I have no active disease. I've achieved and maintained my remission with this drug, but its side effects have more effect and emotion on my mental and physical health than I care about continuing remission.

However, no GI thinking I am being serious. I have the long and arduous task ahead of me, of convincing my GI and IBD team that really, Humira isn't my best plan anymore. Yes, I accept the risk of coming off Humira - more BMs, more flare ups, possible dehydration, insomnia, abdominal pains, cramps, loss of wages, depression - but why should I risk the side effects of Humira for more than the NICE guidelines specify?

I hope I can show and explain to my GI that I understand my body and my guts more than a test result can tell him. I live with those cranky guts 24/7 and I am best friends with them.

[dylan-obrien]

[youngcrohns]

Some days, I wish I could say this and it happens.

A very good day.

[youngcrohns]

Day 22 - Write about change

I've been pretty happy in my Crohnie skin for a while now. But those rough days that's I've been doing battle with lately, have shifted my perspective back to lusting after my pre-crohnie lifestyle.

I am mostly grateful for the food poisoning that triggered my Crohns disease. Mostly. I still think about those days when I could go out and party all night long, eat without hesitation, not know about medications, surgeries, bowels, diets, symptoms, causes, hospitals. It was a different me. Crohns changed me. And it was instantaneous and gradual. It's been difficult. And its been challenging.

But in no way have I resisted it. Because resisting the change is futile. I think this is true for most aspects of life where you encounter change. It's often good change, and despite being a life style change, Crohns has been a good change. Yes, I might long for my carefree, drug free days with some enternak passion but that subsides when I think of all the good I've experienced. Despite dark days, I'm happy for the most part with everything. Nothing is out of my control nor out of my positive attitude.