The Return of… Everything

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You always want to believe your consultant when they say “maybe we’ll be able to go a couple of years without any medications or big issues“. You believe because that is the sort of IBD dream isn’t it; managing without medical intervention? It was for me, back in June at my last appointment; full of confused optimism.

Fast forward not even six weeks and I was bed bound, in constant abdominal pain; unsure of what was happening to me. I would suffer for weeks, spending days on end in and out of the hospital, not really getting any answers or making any progress on the pain relief front.

Why was this happening? What was going wrong? Had I do something wrong? Had I caused all of this?

I was filled with dread and the fear of not wanting to find out what was actually wrong.

I remember sitting in a work meeting about IBD and hearing the statement: “stress usually triggers off an IBD event, taking up to 3 months to come out in the digestive system”. I guffawed, thinking it to be nonsense. My flare ups came suddenly and swiftly, I surely would notice them!?

I sat in Peterborough City Hospital, hearing the results from some tests coming back as “probable IBD flare up” – Where did this come from?! How had this happened? I was living a good life, how could I be in a flare up?! I cursed my consultant for leaving me med free, I cursed my relocating for a new job, my new lifestyle; I cursed myself for being so carefree and happy. I should have been abit  more cautious. Shoulda woulda coulda.

***

The gift and the curse of being between two hospitals means you have to coordinate.

I might have two sets of IBD nurses and two sets of IBD medical teams, but getting them to communicate can be a challenge. In the middle of August, I came home to the Midlands and got admitted to my old hospital, Good Hope. I have six years of IBD patient experience here, compared to my mere weeks at Peterborough City. I know the layout, the process, the NHS Trust and the teams involved in my care. I have a strong, personal and professional relationship with not only my two IBD nurses but also my consultant, my colorectal surgeon and the specialist ward. Their straight-shooting nature meant that previous testing from Peterborough was released over to them, and we were able to start moving forward with my care. Simply put; I was in a huge IBD flare up – symptomatic with physical and mechanical bowel obstructions – and needed to return to my biological medication I had stopped at the start of 2017. I was beyond gutted.

I was also scared.

I was feeling many things and the one thing that kept striking me in the chest was the feeling of defeat.

The utter helplessness I felt was crushing my spirit. I am usually so resilient and resourceful; taking stock of my circumstances and pick myself back up. But almost a month of being in and out of two different hospitals; witnessing some horrible things, enduring many sleepless nights, let alone all the loneliness; was taking its toll. I had no fight. I just didn’t want to be in pain anymore. And considering all that I had been through in 2016, this was nothing compared to that; I felt ashamed that I was letting this current situation take so much away from me. I was angry. And I could not find words, I could not get out of my head. I had to keep on fighting, even if it was draining me even more than I could bear.

Close to the end of August, I was admitted again to Good Hope; this time with some sort of fight. I was at my wit’s end. I needed help. I’d been off work for a month, with no plan to go back. Despite knowing I was in a flare up, I was still without medication, without any adequate pain relief, without a plan, it was making me angry. Then the sickness started and it did not stop. Obstruction got said, closely followed by possible surgery. In came my surgeon, forcefully taking control; ordering an NG tube, some Gastrograffin and a plan to resolve this blockage soon. Several failed attempts at the tube later and after one large solution of aniseed flavoured Gastrograffin, we were working on the blockage. The sickness, however, continued throughout the next 72 hours, I was dangerous dehydrated and a PICC line was being planned.

This spurred everyone on. PICC line was serious stuff. It made me take stock and wake the fuck up. 

***

The first feeling of your stoma working and your ostomy bag filling up with output after almost four days of no activity is not only a weird and unusual feeling – I don’t think I’ll ever really get used to my bag filling with stool – but it is wonderful. I probably had the biggest smile on my face when my nurse came to check my bag; she then prompty scrubbed “water only” off my board and replaced it with “light diet“. Six days with no solid food passing my mouth had made me not only cranky but also once more eternally grateful for my utter love of food.

Despite the frantic need to coordinate my care between Good Hope and Peterborough City Hospitals, we did get my Vedolizumab restarted within 48 hours of submitting paperwork to the CCG  for my case. The wonder of the NHS never ceases to amaze me and I am always going to be thankful for their dedicate to my IBD. It is not a complicated case but it is complex.

So where are we now, just over two months since this saga began?

My summer, in numbers:

We are now two weeks deep into an eight week course of steroids and one week into a nightly routine of pain relief. And things seem to have settled down a great deal. Some of that is probably due to the Vedolizumab doing some good – albeit slowly as it can take up to fourteen weeks to properly response to – but I am now able to not depend thoroughly on pain relief to get me through the days. I feel some normality returning to my bones, some of my personality coming back. Some of my fight, a strong part of my need to write, seeping out of my fingers.

The realisation here is that: IBD is unpredictable.

And that particular mental battle is a topic for another day, some time soon.

The Highs and Lows of Hospital Stays

I’ve just spent a week in hospital, unexpectedly. Now I am no stranger to prolonged spells in a hospital bed. But this time, this was different. New city, new hospital, new problems. I am still processing all the new information so bear with me, this isn’t going to be all about what has gone on but more about what its like to spend time in hospital when youre chronically and invisibly ill. Being in hospital has extremes of highs and lows. Yes, even highs! The spectrum of emotion is vast, varied and can hit you without warning or want. Learning […]

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GI Clinic & MRI Scan – 27-28.06.17

Due to my Gastro referral still being in the pipelines, I decided it was probably a good idea to still attend my outstanding appointments at Good Hope. So despite living 90 miles away, I made the journey back home on Tuesday for my clinic appointment with my consultant and the pending MRI scan the following day. One miserable train journey later, I was at Good Hope; primed to talk IBD and my health’s current state. I won’t lie, moving away from home has been stressful and turbulent at times, I haven’t always been 100% on track. Which means some days […]

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Waking Up with a Stoma

I had been through recovery before, knew that the groggy fog of the anaesthetic would eventually lift. But this time around I felt utter relief. I was confident this time that this was going to be a new life for me. I felt around under my hospital gown for the scar, for the bag. The scar felt huge and like I had been ripped apart inside but in reality it was neatly glued together, all seven inches of it. The bag sat on my right hand side; I proudly touched it, flinching slightly at pain, feeling the outline gently, hearing […]

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Happy Surgery-iversary…?

May 12th. It is forever etched into my brain. We’d been able to control, for the most part, my disease with medications and ‘diet’ for the five years prior to that. But, somewhat inevitably, it came down to needing a clinical trial or surgery. I opted for surgery but debated the toss for weeks after choosing. I was going to need testing to predict the type of operation I would need and I still went back and forth throughout all that testing. But once we had a plan, I was keen to move forward. The pain, the nausea, the inability […]

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Why do you go to hospital? Is it because you’re in so much pain and need relief and answers? Well you’re like me then, only going when it is beyond your threshold and you need help. The pain was unreal and unbelievable earlier and every time I’ve been come into hospital I’ve always experienced pain; they are forever intrinsically linked in my head. So now, it’s incredibly hard to think I can still be here without feeling any pain. I feel quite fraudulent. Added to that, I am in the same room from my last admission; my ostomy surgery, all that pain, blood, fear, shock, disbelieve. I am […]

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GI Clinic 21.03.17

This has probably been the first time in forever that I haven’t really been bothered about going to see my Gastro. I haven’t really had any problems; I’m not taking any medications, my wounds are all healed, my surgeon is happy with my current progress being made and my stoma seems to be getting into a solid routine. All good on the symptoms front; nothing to report. But, I still attended because I felt it was high time he saw how well I had been doing, what I actually look like when I am well. And it was a good picture. […]

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Changing Attitudes

13.06.16 I stared down at the box of tablets in some sort of disbelief. How did it get to this, needing to take anti depressants? It’s week five of my post op recovery. I had surgery in mid- May on my bowel and to remove a cyst on my ovary. Things were going well; I was healing from my incisions and I was getting back to a normal diet. Then two weeks ago, things took a horrible turn. I was sick. On and off for 36 hours. I honestly haven’t felt well since. No one can tell me if this […]

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Surgical Review #2 – 13.02.17

Back to see my amazing surgeon today. Don’t worry, I’m okay! If anything, that’s the reason for seeing him. I am doing so well since surgery, he double checked my blood work, did a MRI scan and a calprotein test to confirm that everything is A-Okay. I’ve briefly discussed my thoughts on ‘remission’ this time around here, and also here. But today it was made official but not at all scary. My MRI scan of my small bowel and pelvis showed no activity of Crohn’s disease. If anything, some parts of my bowel weren’t dilated enough, indicating that the prep […]

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One Year On

Three hundred and sixth five days. A whole year; twelve months. We sat in traffic. It was a busy Wednesday morning rush hour. I’m anxious, excited and ever so scared. It felt like make or break time; would these doctors also recommend surgery? Did I have more choices than the scalpel? I was in agony. I knew I was sick and I knew that I would probably choose surgery but who wants to make that decision? Without more opinions and more information? No, today was necessary. I was curious about the new and different hospital; explaining my history to a […]

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Remission: I AM IN IT

So, this week is proving to be quite good. And I want to share my good news, because lets face it, sometimes it happens so infrequently, I just get too excited. Today I’ve had the results of my MRI scan from last week come back, in the form of my IBD nurse calling me to cancel and rebook some appointments with me. I enquired to what was open on the system for me yesterday via email so when she called me, I was abit confused. But its good news! After just five months since my ostomy surgery (and four months of […]

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MRI Scan: Small Bowel Study – 19.01.17

So, last week I was at the hospital for a routine test; a Small Bowel MRI Study. My surgeon is using this procedure to finalise the plans for whether or not I continue to receive my Vedolizumab treatment, as my Crohn’s has gone into possible remission. I’ve had a couple of these MRIs before; all pre surgery and without my ostomy. I was hesitate, anxious and nervous for the following reasons: The last time I had one, I had a NG tube down, I was 10 days away from ostomy surgery, had spent an awful weekend on our gastro ward […]

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“Remission” – One Step Closer

I have questions. So. Many Questions. 1. How do you determine if surgery has succeeded? 2. How do you measure ‘remission’? 3. Can you actually achieve it? 4. Do I want to be medication free? I hope these all seem logical, or at least follow on from each other. Maybe the additional, and probably first question should be Why am I asking these types of questions?   The period between Christmas and New Year was eventful for me. Not only did I catch some sort of stomach bug which really affected my ostomy – like it should do, really! – […]

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Surgical Review – 12.12.16

This is my surgical review for both my surgeries I had done this year. I had my Right Hemicolectomy in May and my Subtotal Colectomy in August. The second surgery superseded the first by giving me my ileostomy. I was sort of expecting to be on the way to being discharged at this appointment but I knew deep down that this probably wasn’t possible. It’s only been three months post-op and it seems whenever my surgery is discussed with me at the hospital, they added on additional weeks to my recovery because of already having Crohn’s disease. Apparently, this type […]

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What I’ve Learnt after Three Months with an Ileostomy

  Yes, it’s already been THREE MONTHS! Can you even believe it?! I know that three months is nothing in the scheme of things, and even three months out of 2016 doesn’t feel like an incredibly long time, but to me three months is a lifetime. When things don’t go right or you have problem after problem, even a week can feel like an eternity. That’s what I was experiencing before I had my hospital admission in August. I was trying my best to deal with what was happening to me at the time – codeine addiction and subsequent withdrawal […]

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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 […]

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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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