Life Lately | All This Familiar ‘Newness’

This feels oddly familiar. I’m not sure I like it.

I’ve found that this phrase gets said alot in regards to my Crohn’s Disease. Things come and go in waves, in cycles some years and they almost always feel like deju vu. But for the most part, the fact that they are familiar gives me a certain ability to cope with them, time and time again. It sucks that the same things occur on a some-what semi-regular basis but I take comfort with the mantra; “I’ve done it before, I’ll do it again.”

A certain piece of mind, if you will.

This week, I made the firm transition from Good Hope to Peterborough City when I saw my new Gastroenterologist. Gone are the days of being smiled and waved at by plenty of the departmental staff, the familiarity of the hospital, of the memories, really;  this was all new, all unfamiliar and despite knowing I had to make this change, I was still incredibly nervous and apprehensive.

I wanted to know I had made the right decision to move. I wanted to know that I was going to be taken care of, that I was going to be taken seriously and desperately hoping I wouldn’t have to be negative. Thankfully, it was all smooth sailing. I complied a list of questions, most of which were answered and I came out afterwards, without any delays on the appointment or the subsequent blood tests, with a feeling of satisfaction.

First appointments with new doctors are always abit unfamiliarly familiar. In the sense that, setting the tone is important. Whilst you want your new doctor to be sympathetic and treat you well, you should also be direct and straight to the point; which can come off being bossy. It’s a fine balance, but you learn. I had much to ask my new consultant which included:

  • If I could have my flu jab, given how soon my next Vedolizumab infusion was going to be.
  • How and when they were going to monitor my Vedolizumab.
  • Following that, how were they going to monitor my IBD in general.

I made more notes about my ovarian cysts, my rectal stump, my deficiencies as well as my liver monitoring but being so new on Vedolizumab and having recently been admitted (July) the conversation stuck to my IBD and treatment plan. I gave a quick but accurate summary of my surgeries and my needing to have Vedolizumab on multiple occasions in the last eighteen months and it was concluded that this was going to be my long-term plan. Good to see my application for the funding of the drug actually specified that I wasn’t to be removed from it, regardless. He was somewhat shockingly impressed that my first attempt of being on Vedolizumab was weeks after it was NICE approved in 2015. Yep, that’s just how my IBD rolls, I said, half jokingly. But joking aside; I didn’t get to stress just how unpredictable and complex my IBD can get, especially these days. We did my usual IBD / Vedolizumab bloods and he would see me in the New Year for an update on the treatment plan; possibly schedule some testing, maybe.

I have another appointment to see the same team, in about six weeks time; in between infusions. Unsure why, as this isn’t what was discussed and it’s currently on a date I can’t make. But we go forward, building new relationships.

In these early stages, nothing is yet as it I would like it. And unfortunately, I am always going to compare my IBD nurses to my two wonderful ones who gave me constant care when I needed it the most. For all those admissions, those infusions I would need, the scopes I would have, the constant emailing some weeks, the reassurance I needed from time to time. I haven’t had to need any of that yet so I can’t compare. But I can’t help but see the differences. One good thing has already come from being in Peterborough; appointments get sorted, promises are kept and I am kept informed. That is all I can ask of them right now, before, anything else happens.

I mustn’t be afraid to fight, to stand up for myself or speak when I need to express my opinion. 

I need to remember that and not be blindsided by all the familiarity of the newness.

The Return of… Everything

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 […]

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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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