Elemental, my dear Louise

I had put off contacting my IBD nurse for weeks and weeks. Things were steadily going down hill, pretty much since the beginning of May. I started to feel unwell soon after my last Infliximab infusion but put it down to the stress of finding a new job and being unhappy at being at home all the live long week. But as the bathroom trips became more frequent, more painful and more full of blood; the more I started to think it wasn’t just stress. It’s so easy to fob yourself off with just something as “undefinable” as “stress” but I was getting used to it; as each day came and went, it became “normal” for me to spend a significant amount of time running between my comfy seat on the sofa and the bathroom.

One morning I decided to weight myself – curiosity and all that, it had been a while – and it was a shocking 88kg. How could I still be loosing weight? Well, it was evident – I hadn’t finished a single meal, more often than not I was just picking at food, getting up in the night to go to the loo, generally not getting any sustenance from eating or drinking. I was quick to say that my MXT was making me feel nauseous and therefore unable to eat much anyway, but I knew that wasn’t enough. I needed to speak to my nurse.

So I called her up, left her a message  – explaining how things had changed in the last couple weeks, nothing had improved and I was still having abdominal pain – and a couple hours later, my GI called me. And as typical as it can be, I was stuck in the bathroom. Terribly ironic. I knew something was wrong, my consultant calling me; he was worried. After a couple days of returning calling but missing each other, my IBD nurse finally caught up with me; I was in bed exhausted from barely doing anything. I was in a dark place; I had gone from feeling okay a couple days earlier, to cooped up in my bed, unable to really get out of it. I was shattered. I needed help.

Knowing she was going to give me some bad news – anything but an admission to the hospital, please! – I was given three options: Trial removal of MXT, a long course of Prednisolone or a course of elemental diet. 

Removing MXT to me seemed pointless. I am just coming up to three months of it and I wasn’t going to give up now. Even if it isn’t working well, I wanted to make sure I had given it all I had, when it came to coming off it. I wanted my medical file to reflect that.

Steroids; well, I have a long history of them not working very well. She suggested a 12 week course to see if it could really help but it would become problematic when I needed to be weaned off them, would these same problems reoccur? Probably very likely that they would.

Elemental diet; psychologically demanding, it was for two months course. I would see the nutritional team and they would help me plan out what I would need to do and how best to cope. She recommended this because it would give my gut well deserved rest whilst we waited for a new plan. Yes, it would be challenging to not eat for two months and survive on only liquid feed but it worked so well in paediatric care, and was only used limited in adult care because of the psychological impact. I agreed to this. Despite both our reservations about how an exit strategy would work on this plan, it seemed the most logical and beneficial plan. I would continue with my current treatment plant – of 6 weekly Infliximab and weekly 20mg of MXT – but I would be going to another hospital for a second opinion.

On top of that, they are also going to send me further away to seek some other treatment options; one of which is white cell washing. It seems it is everything but surgery they want to try me on. I understand their reasoning but I need to know when do we call it quits on medications and decide that I’m at the right – or indeed wrong – place and need a surgical opinion.

So, next week I meet with a new dietician and see what the plan is for the next eight weeks. I then I have my Infliximab the following day and a clinic follow up for my referrals the week after. It’s all go!

Liver, PCOS and IBD – What a combo!

I am awful at keeping things up to date recently, but I’ve had alot to mull over and consider.   Since Infliximab #8 I’ve been to the hospital for various appointments. I’ve seen my Liver specialist, had a small bowel MRI done, finally seen a Rheumatologist, my gastro, a dental surgeon and my GP. None of these things are new nor are they unrelated; they have all somehow become interlinked. Typical. So after my last infusion, I spent my half term building up to a small bowel MRI. Nothing about it was pleasant, but I was suffered from the tail […]

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Infliximab #8

Yep, its been the two month wait for Infliximab. Feels longer; it was overdue by a week, caused by scheduling problems. Alas, I attended the hospital yesterday; after a problematic and rough week or so; very glad to be there and finally getting my infusion.   Prior to this, I had two lots of bloods taken. Both were okay, not as good as usual – WCC was up along with my CRP but my LFTs (and associated liver function tests) were falling FINALLY! – but what was troublesome to my GI, IBD nurse and infusion nurse, was these tingling sensations […]

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Infliximab #7 and Liver Problems

For all of 2014 my liver function tests have been steadily rising. When the new GI took over just before Spring, I suffered a couple of problems that lead me to A&E on a busy Saturday afternoon, in which we discovered how high my AST and ALT’s were – way over the parameter maximum of 40; some where in the 200’s – and the testing began. My GI order ultrasound, more bloods and finally a MRI scan in June before referring me to the Queen Elizabeth hospital in South Birmingham. My appointment was last Thursday, two days after Infliximab number […]

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Infliximab #6 and more…

Updates galore tonight – I’ve been extremely busy and to some extend, ignoring my problems a little. The build up to the latest Infliximab infusion was interesting; ten days before I started experiencing extreme fatigue in my leg and arm muscles. This would get a little worse each day, until four days before when I was unable to raise my arms higher than my shoulders. I consulted with my GP to see if this was an inflammatory response from an infection I had (possibly) or were my joints being attacked because the Infliximab was all but gone? After a round […]

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Infliximab #5

Another eight weeks have passed..   Another Monday lunchtime spent at the hospital, this time only for two hours; a one hour infusion followed by a hour of observations. As always, there were problems prior to the infusion, discussed before the weekend in “Spring Forward” concerning my liver but after being given the green light to attend, I turned up, fretful from a good yet bad counselling session that morning, to have a difficult time being cannulated. Cannulation, I hear you say, isn’t this a common problem with IBD patients? It can be, yes, but then again, no. Despite how […]

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Spring forward

Nothing like spending a Saturday evening in the hospital is there? That’s where I was two weeks ago, after a painful afternoon of sickness, I succumbed to my body and was taken to our local A&E department. I got assessed, had my blood taken, lots of poking and prodding and then proceeded to wait for my test results. They came in, gradually over the next couple of hours; move from a stomach bug, to a infection, to a possible Crohn’s flare up, to finally a inflamed and angry liver:  my ALT level was 214  – it is usually between 0-45/50 […]

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Infliximab #4

So, its been eight weeks since the last hospital visit for the magic mouse juice. This time, I was due to have a two-hour infusion and only one hour of observation. I had gone the eight weeks as was set out by my GI, IBD nurse and the hospital’s Gastro MGT team. Eight weeks are the standard set of time between infusions. As I had gone up and up in time between the first initial “loading doses”, I was now going a whole two months without another infusion and boy was it a long time! I had a great first […]

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Rough / Cough

This has been a rough one for me, more so than before. I can’t quite remember feeling this awful before, without the bowels going crazy and my body flaring. This, in all sense and purpose, is a cold. But given my immunosuppressed body, it has hit extremely hard; with each day providing me with a new and strong symptom, so much that I finished work on Friday afternoon – after a five hour shift that mostly consisted of me sneezing, coughing and generally loosing all sense of body strength and temperature control – and could not see any light at […]

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Half way through or half way there?

So, this week I’m half way through my four weeks of this second infusion. This also means, I’m more than half way to my next infusion too. In fact, its 9 days away and honestly. I’m excited. The difference between now and before Inflixmab is huge. And add to this how different I feel between first and second infusion, and now, awaiting the third, it’s quite amazing how this is really helping. Now, as you already know, I am not biological naive, meaning I have received biological treatment for my Crohn’s in the past. That was between December 2011- and […]

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Infliximab #2

Two weeks came around fast. I could hardly believe it was my bloods check up last Friday, let alone how quickly the weekend came and gone, then it was Tuesday. Time for an all day stint at the hospital, sitting around waiting for time to pass. This time, everything was delayed. I was on a later appointment schedule, so that I could make my already scheduled GI clinic appointment that afternoon, and from the start, it was running late. There was already three other patients on the pumps, so I had to wait for the first to finish, which was […]

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Infliximab #1

Yesterday was very interesting. I am very used to being at the hospital, the regularity of my clinic appts and my ‘need’ for blood tests within the NHS trust system, I’m there at least once a week some weeks. That being said, it was extremely nerve-wracking waiting to be called into the infusion room. With my regular IBD nurse off sick at the moment, I was handed over to her back up, partner in crime and she administered my medication. She is great, not as brilliant and proficient and professional as my regular IBD nurse, but she was just what […]

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A bag of nerves

So, tomorrow is my first Inflixmab infusion. This is my second and final attempt at a biological treatment for my Crohn’s Disease. Last December the decision was made, after much discussion and scoping, that I was to stop Humira. I was feeling a mixture of relief and freedom. No more fortnightly injections, no more struggling to get through a 14 day cycle, no more crappy immune system, I could finally start a Crohnie life without medication. For both my medical team and myself, it was a little test to see how well my body and disease could go without medical […]

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Yesterday I got the call that will hopefully start to change my Crohnie life again. My IBD nurse confirmed that the GI GMT have successfully approved me for Infliximab.  I go back to the hospital next Tuesday for a “routine” clinic appointment to fix my first infusion date, after my bloods, TB test and chest X-ray. I had had an god awful day at work. Short staffed, in pain and bloated to within an inch of my work uniform, I was eagerly anticipating my vibrating phone my apron pocket, telling me my answer was finally here. I was in completely […]

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Double jab

After the eventfulness of last week, this week I had scheduled my Wisdom Tooth Extraction and my annual flu jab. Given my recent – last two years, recent – entrance into the world of needles and procedures and all ‘nasty’ medical things, you would think I would more than okay with a local anesthetic in my gum and jaw, but apparently not. I back out of my extraction only moments before the dental surgeon took to my mouth with a needle, and not just a small one, a BIG ONE. I copped one look at the bastard and starting panicking. I […]

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Welcome Home

With another hiatus come and gone, its time to start writing again. Since my last post, I’ve spent two separate nights in A&E with Crohn’s related pains. Since then, I’ve been without any real help, it has been weeks and weeks of pain and frustration. That was up until the start of September when I was working too much, too hard, and I had a flare up. I struggled on, continued to fulfill my responsibilities at work, but would come home and sleep. I was too tired to make dinner, to wash properly without being in pain, too lazy to […]

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Another month, a whole bunch of new problems

It seems my body has not taken to a holiday very well. Last time I blogged I was due to leave the Midlands for the south coast. I spent four days in Cornwall and came home for a couple days before returning to work. Every since I got back, I’ve had a list of problems going on. And for once, none were my usual Crohns problems! Alas, they were all derivatives of my Crohns and despite being new, they have not been fun at all. I joke alot that every day there is something wrong me with. Its not that far from the truth, nor […]

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