Going Medication free..? Is this *the* IBD dream?

I received correspondence from my GI yesterday, following my clinic appointment with him last Tuesday. It made for an interesting read:
I am sorry you came to separate surgeries, initially an extended right hemicolectomy and then a subtotal colectomy. We have still got you on Vedolizumab and I am not a hundred percent sure this is the right choice for you at present. In theory you have been completely down staged surgically and so it maybe possible to trial you without treatment.

Presently, under NICE, Vedolizumab was the last option I can provide without looking into trials. I note you have recently seen Dr Moran at Nottingham although I have not yet received any correspondence from this appointment.

From a pragmatic view point we can assume your Crohn’s has been fully staged. I think the easiest way to do this is a faecal calprotein now and a repeat sample in four months. If your faecal calprotein is under 200 I am happy to consider stopping the Vedolizumab and so this will allow us to consider re trailing this drug in the future. It is probably also worth considering a repeat MRI at your next visit but this plan may change depending on the correspondence I am likely to receive from Nottingham.”

At first read, it seems to feel as if he is unsure of what to do and how to go about doing it. The fact that neither myself or his department have not had any correspondence from Nottingham – of which my appointment took place on September 14th – doesn’t help matters. I hope that I relayed the correct information from that appointment to my GI. I’m pretty sure I did. He wouldn’t have gone along with it if it didn’t make sense, surely..?
All of the details of the letter I already know about, we have discussed my Vedolizumab before surgery and since, either with himself or my IBD nurses, but seeing those words “was the last option I can provide without looking into trials” bring its all home. I’ve been given an ileostomy because my colon was destroyed but my small bowel is still going to be an issue. And it’s already had all the medications. I’m at the end of the line, unless something else comes out. We know that Ustekinumab is coming out soon but it’ll be a while before the hospital’s NHS Trust certify it. So theorically, going without Vedolizumab – providing the tests come back within his expected ranges – wouldn’t be bad.
Which now begs the question:

What is my IBD goal here? Is it medication free or ‘remission’?

I put remission into quotes like that because, everyone has an opinion on what remission should be. Sara over at Inflamed and Untamed wrote an excellent post on it here. My GI even recoiled slightly when I asked if that was possible. I even used the word “clinical” before remission and I still got the recoil. I think expecting ‘remission’ is highly unlikely, just given my past medical history and my disease track record – I seems to be fine whilst on med but never for too long. I just want to avoid more surgery to remove more diseased bowel. So, not taking any medication would be the next logical place to go to. And I agree with his logic – we need something else in the bag for when things go tits up; hoping and praying it is a LONG LONG LONG time away before that actually happens, and we have more options than just the Vedolizumab.

NB: As I write this, Ustekinumab has just been approved for use in the UK by NICE. It will be a couple months before anyone at my hospital is on it, but there is hope, always.

There are hoops to jump through to get to medication free. I can’t just come off Vedo and hope for the best. I need to be tested to see if I need it or not. Of course, there is no blood test to find out how well I am absorbing or maintain the Vedolizumab like there is for Infliximab – testing for antibodies etc – they have to go on my poo test. Yes, from my ileostomy. And it has to be more than once because of having an ileostomy – the likelihood of two samples being the same consistency and time of day is difficult to predict, and I’ve only just finished my loading doses too; it could be too soon to tell anything at this stage. The big test will be the repeat MRI scan. I had two done this year – one in July which was a dud and then a repeat in August when they admitted me before the subtotal colectomy – showing active small bowel Crohn’s. If the repeat – likely to be roughly Spring 2017 – shows none of this, then yay, both surgery and medication have worked.

Coming off medication whilst it is working sounds mad, right? If its working, why not keep on it? Well, side effects for one. Two, I am likely to stop responding to it eventually and we need to keep it as a next step. Three, isn’t the ultimate goal to be without medication anyway? It’s not a massive inconvenience to go to the hospital for the infusion every eight weeks but such a big surgery such as this subtotal colectomy should give me back my life, not keeping me tethered to the hospital. I feel like they want  me to go without medication so I can finally go away and live.

But being without medication scares me. I’ve never been without something to control my Crohn’s. But I’ve never felt this well before either. I think I need to get use to the idea – I’ve got another 4 months before I’m due back to see him again – and I think it will do me the world of good.

I will have to stop using my medication / illness / condition as a crux, an excuse… Now, that will be the challenge in all of this.

GI Clinic – 15.11.16

I last saw my consultant the day I was admitted to hospital in mid August. I remember how disappointed he looked when he had to leave – he was going on annual leave for the rest of the month – and looked anxious. With good reason too, I would say goodbye to my bastard colon 11 days later. So today when we nodded to each other in acknowledgment before my appointment, it was nice to see him happy to see me. We talked mostly about my recovery from surgery and how Vedolizumab was going. I had received my final loading […]

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Oh The Pain! Flapjackgate: My First Ostomy Blockage

What was suppose to be a relaxing weekend in preparation for holiday to Cornwall with Ben this week, turned out to be somewhat of a small disaster: Going to Good Hope A&E twice in the space of 12 hours. Oh joys. Saturday started off fairly normal – breakfast, shopping in Lichfield, food shopping in Tamworth, followed by lunch at home. I had made chocolate flapjacks the afternoon before and had one after my lunch. Delicious, I thought. I’ve never been a big fan of them but at least I can eat them without pain now, right? Oh how wrong  I […]

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Vedolizumab: The Final Loading Dose 07.11.16

Four weeks have passed. My blood work was done the day of stoma clinic last week so I was on schedule to receive my final loading dose of Vedolizumab then on to a regular schedule of having it. As I said in my last post about Vedo, we still didn’t know if this was working yet or if it was going to work. We just had to complete the loading doses – week 0, week 2 and week 6 – before moving onto the usual eight weekly infusion schedule. I haven’t thought or planned past receiving that fourth dose in […]

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Returning to Work…?

Today I attended a work coach appointment at our local Job Centre. NB: I currently receive ESA because I’m unemployed and recovering from surgery.  I’m still yet to my surgeon for my post op check, but so far things have been going well with my stoma and my Crohn’s; I haven’t been left without any help or care! So today was about seeing what will happen next. Usually, a person on ESA gets assessed but due to the situation at the DWP and my own circumstances due to surgeries, this has been halted for the foreseeable future. But it does […]

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Grieving: Those Waves Don’t Stop

They “prep” you for surgery; you hear that a lot in the weeks and days leading up to an operation. Medically, you should be fit enough to withstand the trauma your body is going to under take. You should be aware of the potential dangers, prepare yourself for things to be different than what you’re expecting, what you’re thinking could happen; even if you’ve had surgery or this surgery before. What about mental preparation? Do the doctors ever prepare you for surgery? Apart from what I’ve mentioned above, how does anyone prepare for surgery? I was a novice to it all in May, there […]

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So, knowing I was going to be in town today for a dental check up, I decided to do some writing in a local coffee shop. Got a loyalty freebie so I was all set. But my stoma had other plans. I was just finishing up my coffee and got my notebook out, and pain shoots through my bag. My stoma is working overtime to push something through; last nights dinner. Of course, we had chill. With beans in it. Corn chips on the side. I hardly drank yesterday when I think about it too, so just absolutely shit situation. […]

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How do I hate something that has saved my life?

No, seriously, how? Maybe the question should be ‘CAN I hate something that has saved my life?” or even “Can I hate something that has CHANGED my life?” Because, I can hate the fact that my disease was so bad, they had no other option than to remove my colon and give me my ileostomy. I can hate that fact until the cows come home, it still doesn’t change what happened. Does hating my ostomy make it easier to accept? Does this just make me negative and unable to live with it? I have no choice but to live with […]

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Vedolizumab: The Restart

Following my subtotal colectomy in August; my IBD team recommended returning to Vedolizumab. I had already tried Vedolizumab; receiving the three loading infusions last winter. This is where I was and how I was feeling as 2015 turned into 2016: “… So, it hasn’t gotten any worse, but the past year’s drug choices haven’t made it any better. I’m on a plato; and its going down, albeit slowly, over time. For me, the past 10 months haven’t been brilliant. They haven’t been the worse either, but I’ve noticed a definitely decrease in how well I feel in general, an increase […]

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Double Check Up – 22.09.16

It’s not unusual to spend time at the hospital for back to back appointments. But when they happen at different hospitals, it gets abit more complicated. We spent the morning travelling across the city to Queen Elizabeth Hospital (QE) for my liver check-up. I’ve been attending this particular clinic for almost three years since some routine blood tests revealed very high liver function results. Given my complicated IBD history, I’ve been seeing the head of the department, a Professor; and had lots more blood work done and specialised testing to give me a diagnosis. Not that I’ve ever needed one; […]

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One month post op

  “Time moves slowly but passes quickly.” That can be said for my recovery from surgery. I can’t quite believe its been a month already but in the same thought I can believe it. I’ve been experiencing recovery in real time and taken each day as it comes. It hasn’t been easy – but I knew it wouldn’t be – but its been better than my last experience of recovering from surgery. Mention-worthy moments: Not needing any pain relief since being discharge. Being able to manage my stoma – when its changed size and the output has changed consistency. Even […]

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To new beginnings…

Tuesday 23rd August (cont’d) “I’ve got a space for you on the end of the emergency list today, could be this afternoon, probably this evening though.” Ward round this morning and surgeon is keen to remove my colon today. Despite being busy, he will stay and do my surgery when his list is complete. Turned out that meant waiting all day – still experiencing more blood than I’ve ever known to come out of me – until the anaesthetist came to see me at 6pm. We talked through my procedure – a subtotal colectomy with ileostomy – and my options […]

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Nottingham GI Clinic – 14.09.16

At least three months overdue, rearranged twice during my extended post op recovery; we finally made the trip to Nottingham to Queens Medical Centre to see my second opinion Gastroenterologist. It’s always abit weird to see how another hospital organise their clinics. This was our second visit to see Dr Moran – head of Digestive Disorders, specialising in clinical trials for IBD – to discuss my case. Since we last came in January, I’ve had two surgeries, three admissions, two MRI and a CT scan and a colonoscopy. Explaining the last six months was going to be fun. I took him […]

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In for the long haul

Thursday, August 11th “I feel absolutely awful. If I’m honest, I’ve felt awful for weeks and I’m at the end of my tether. Please help me.” I was on the phone to my IBD nurse, begging for help. I’ve never begging for an admission but that is what came out of my mouth next; “I’d really like to be admitted.” She wasn’t shocked, just said she’d need to speak to my consultant and surgeon to find a bed for me on the Gastro ward – always going to be a big ask but I knew she’d come through for me […]

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A Spiral of Set Backs

I last wrote anything about my Crohn’s disease back at the end of June. That is almost six weeks ago but feels so much longer ago. And in retrospect, so much but so little has happened. It’s just been one thing after another; without the last problem really going away. So I was being discharged in my last post after my bowel infection from surgery. That problem resolved itself a week after I came home because of the antibiotics my surgeon prescribed to knock it out of my system. It seemed to do the trick; I was eating more, managing […]

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I was never given any real information on how to recover from surgery. Sure, I got details on what had happened to my body, what I was now missing and how to best adapt going forward but I never expected ‘complications’; even though they were there, in black and white, at the end of the procedure paperwork, to happen to me.  Complications included: Chest infection. Illeus (temporary stoppage in bowels). Damage to the bowel. Ureter damage. Internal haemorrhaging. Bowel obstruction. Stricture. Anastomotic leak. Wound infection. Urinary Tract Infection (UTI). Deep Vein Thrombosis (DVT).  Pulmonary Embolism (PE). All of which were most likely to occur soon after surgery, their chances diminishing the further […]

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The weekend after surgery saw the most activity. This would be the removal of my catheter, getting out of bed for the first time and finally being able to eat. Having not been awake for the insertion of the catheter, the removal was pretty painless. It was more uncomfortable than anything and it did mean I would now have to get up and find the female toilet at some point; with a PCA pump and a bag of IV fluids. It’s quite amazing how much the catheter was doing for me because it wasn’t long before I needed the loo […]

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So last time, I had just had my pre op assessment for my surgery. I’ll admit, that appointment was extremely helpful – it calmed me more than I had expected and I finally felt relaxed for my operation and I knew I had made the right decision. On the morning of my surgery – Thursday –  I packed my overnight bag with some pyjamas, face wipes, my phone charger, kindle and dressing gown. I was told I was being admitted via the Day Surgery Unit at the hospital at 1pm. My dad had kindly taken the day off, so we […]

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Pre Operative Assessment – 10.05.16

Its finally here; the pre op appointment! Before that appointment, I also met with the stoma nurse at the hospital; there is a small chance – 10% or so – that my operation could result in having a temporary ileostomy, so we discussed what one would look like, which side I would have it on, how the bag would fit to my abdomen and why it would be needed. If my surgeon finds extensive disease in my transverse colon he wishes to remove, he could very well create a ileostomy to help me out for a couple months before coming […]

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Seven more days of having all my insides, still inside of me. Seven more days of this constant, terribly draining pain. Seven more days in this current chapter of my IBD life. I know surgery isn’t a magic or quick fix. I know I will be in pain afterwards, a different pain from the one I’m experiencing right now but I am hoping this will be controlled better and not be constant once I’m off painkillers. I know its a big deal for my body to be put through; the worst its been through is a flare up four years […]

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