GI Clinic – 23.02.16

I’ve been due to see my consultant since December. The plan was to have a chat about what appointments I’ve had since we last saw each other, how I was feeling after finishing up Vedo – it was imminent to failure at the end of 2015 – and plan what we would do next. The latter of these three things has filled my mind with questions and full of confusion. I was unsure of what would come from my surgical option, what would come from seeing another Gastroenterologist at a bigger and more research led hospital and what would really happen after my medication did completely fail. Never did I contemplate having to take Pred again. Never did I anticipate needing a scope to assess my rectum.

Never did I think I would be without any real plan.

Never did I see my job being taken away from me from taking “too many” sick days.

So you can understand my frustration can’t you?

***

So I went into this appointment with very mixed emotions. Needing answers to my questions. Wanting a plan to fixed in place following my scope next month. Leaving feeling reassured that I am happy with my medical options so I can kick myself up the ass and get another job.

Here are all my questions I formulated in the past couple days before attending my appointment; thorough huh?

  1. What are the symptoms of rectal involvement? I’m in pain after eating, I noticeably bloated and am somewhat blocked, unable to go and feel relief, am tired more now than before Pred but unable to sleep very well, passing mucous with every BM.
  2. How much disease do they need to see to choose a panprocolectomy over a subtotal colectomy?
  3. What is the point of the steroids at this point? Are they going to mask the true results of my scope in early March? Do I need to stop them prior to my scope?
  4. Do we have an agreed plan on which to implement once my scope is done? How quickly can this be put into motion once the 8thMarch ends?
  5. Does this definitely mean surgery? I don’t see the clinical trial being any better / quicker at this stage, plus I think it’s too risky.
  6. Is there a middle ground on my two surgical options? Leaving the rectum and having a temp bag? How do they determine this?
  7. Is surgery going to help? Am I going to gain back control and improve my quality of life? (keep a job, move out, go on holiday etc – BE NORMAL!!)
  8. Is it even worth putting off for a while (until absolutely necessary)? Can I live for a while without it being planned to go ahead?
  9. Will I need medication once I’ve had surgery? Aza plus Allopurinol as suggested by Moran. If I do, would this be straight after?

 

As usual, I get the nod from him – signalling me to come through to his office – an untold “come on in, trouble” which ring so very true. We get straight down to it – “How are you feeling?” – scribbled on the top of my notes is my weight – an acceptable 79kg – “an improvement of 400g since last time”, the first time I’ve gained weight in over 12 months (thanks ten days of Pred!). He had received my correspondence from both the surgeon here and the consultant in Nottingham. He said he sees my options as either the new new biological drug or surgery. “I take it you’re not keen on the trial?” he asks. I shake my head, no, definitely not. After so much back and forth, I’m not going to risk more of my bowel on a drug that might only just work; let alone the side effects and (currently unknown) long term risks. We have both already looked at the phase II data and now we discuss how it’s just doesn’t feel right to investigate more medication at this point. “Are you fed up of being a guinea pig?” he asks, knowing I’ve done all he has asked for over a year now and I am fed up. I’ve said it before; I’ve discussed surgery with him in a strictly proactive manner; he probably knows what I’m going to say next.

“I’d prefer to have surgery. I want it pursued once my scope results come in and we know what I am dealing with.”

Yep, surgery. Decided on it over the past couple of days and my questions above probably led you that conclusion already. He nods, agreeing with me. “This is probably the right time to do it. But you do need the scope to determine what and when. How are you doing on the Pred?”

“Honesty? Awful. I have had a few good days of feeling well but then it can suddenly change and I feel blocked and bloated and in a significant amount of pain. I’m also concerned that they will be masking my disease come my scope and it’ll be even more painful. I’m dreading the prep.”

“Maybe we drop the dose down by 10mg instead of 5mg each week. But the scope, you’ll be in a comfortable place of 2-4 tablets (10-20mg) of Pred and that could help. Keep in contact with the IBD nurse and we’ll monitor managing your symptoms. I doubt the Pred is masking anything. You have chronic inflammation of your colon, they will see that, regardless of any medication at this point. Nothing has worked well enough to produce healing. This is purely for the rectum more than anything but they need to see it all and check the start of your small bowel, if they can.”

I feel comfortable and happy with this. Pred has given me more bad days that good days lately. 30mg might not be a lot but it’s too much for me. Dropping it down early could hold that sweet spot of a gentle middle ground to get me through to April.

Next we discuss surgery at Good Hope. I haven’t dismissed Nottingham, I will attend their clinic when requested to – my consultant is required to send the test results to Nottingham so I will no doubt be called in for a follow up and discussion of my options – but I needed to know if staying at GHH would be more beneficial for me; long term.

“Is (my surgeon) the best you have?” “Yes, I’d trust him to do surgery on me, without hesitation.”

Good. Words I want to hear.

“We can organise a local team to do the surgery once we know which one is needed. This could be quicker than going back to Nottingham. You have the IBD nurses, I’m here and its local. But its ultimately your decision.”

I admire him for being honest. I know that Nottingham is a bigger and better hospital for IBD. But it’s not cared for me like Good Hope has done. It’s a new system to navigate. Its further to travel to. I don’t know staff there. It’s not only for the surgery, it’s for follow ups, its testing… it’s just more hospital everything.

My dad; who is sitting next to me, abit wet in the eyes – a reaction to me expressing how fed up I have become and how I now need a solution to my bad colon because I’ve lost another job and finding it difficult to manage my mental health whilst being unemployed – pipes in with “how successfully are these (the panprocolectomy and subtotal colectomy) types of surgery? Will they give her a better quality of life? She’s only 27 and this is a shit life to live”

I’m trying not to cry. It is a shit life to have at only 27. But I always think it’s a shit life to have at any age and that doesn’t factor into my decision making process. It would be difficult to make if I was ten years older or even ten years younger. It’s all relative.

The consultant says it will improve things for the better. Obviously, he can’t be 100% sure of anything, even after they know which one will be performed. And even once they get inside, they won’t know what will happen. But if its planned and controlled and I am in good health (apart from the chronic illness, of course) it can be life changing, for the better. They will plan to do it laparoscopically – this could change once they are in and need to do a mid-line – but ultimately any surgery comes with risk and this is why they plan them; months in advance. The surgical waiting list at the hospital is 2-3 months from a second appointment; which would be scheduled once my results are in. He says they will keep an eye out for them and I’ll be seen again in 2 months with him and hopefully sooner with the surgeon.

 

We come out of the appointment happy. Me more so than my dad, because this is the big one. The big thing we have used medication to avoid for almost 5 years now. But it feels right. I feel ready for it – I’m mentally unprepared for a stoma and how much that will change my life, but that hasn’t been decided yet due to the scope still being two weeks away – and I’m sure I am physically strong enough to survive and recover from it.

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6 comments

  1. Louise, I share every word you’ve put here. At 42 I’m waiting to see the surgeon Monday where we will be making a decision on which surgery to take. After 18 yrs of dealing with this crap illness, it’s robbed me of family days, promotions, friendships and my health (mental and physical). My daughter has never seen me “well” so I think 75% (certain) I’m going to go with take the whole damn lot out, give me a perm bag. It cannot be worse than this…….can it? Wishing you all the very best for the next couple of weeks.

    1. Justine, I definitely agree. It robs you of so much. I’m done with it taking things away from me.
      Thank you for the kind wishes, please let me know how you get on. If we have similar surgeries at a similar time, I know I would benefit from a friend to go through it with, if you’re interested? 🙂

      1. Defo!
        Time for my appointment is drawing ever closer. Swinging between hiding/ignoring it (won’t help) to saying f-it get the whole damned lot outta there……then doubt that decision.

        Will let you know how it goes. Aiming for a June op, as it fits in with a huge project at work, which if I can stay upright for I need to do, oh and the return home of my daughter who has been overseas since August. Not doing this without her home. Just in case…..

        1. Those feelings are all normal, I feel great most days about my decision but today, I sat in the bathroom at one point and had that feeling of “oh my god, that ileostomy will be permanent, for life, for ever” rush over me and I didn’t know what to do. I’m trying to be methodical about it and see how much it can change my life for the better but it still… really huge.
          I’m aiming for June too. Latest, July. Id even take an earlier space if my surgeon has it! Just nine more days until I know my rectums fate!

  2. Hello Louise
    So sorry to hear how lousy you feel at the moment. I have emailed you a couple of times before, but not sure that you received them?
    My son was diagnosed with crohns 8 years ago – he had severe fistulating disease and anal abscesses. To cut a long story short, in desperation, we decided to try the SCD diet (Specific Carbohydrate Diet) as popularised by Elaine Gottschall in “Breaking the Vicious Cycle”. It is a fascinating book written by an amazing mother whose daughter suffered severe symptoms of IBD. The diet has transformed the health of my son and he remains in good health as long as he sticks to the diet. If you have got to wait two months anyway before possible surgery, I would recommend that you read Elaine Gottschall’s book. There is a website of the same name. Another couple of websites (of people who have adopted the SCD diet successfully) are ‘nomorecrohns’ and ‘glutenfreescdandveggie’. They are awe inspiring and provide hope that there are other alternatives for Crohns. I really hope that things get better for you. Please don’t hesitate to contact me if it would be helpful to check anything out. Best wishes
    Jan D.

    1. Hi Jan,
      I have received them but as the blog went under construction and moved to a new platform, it all got lost somehow..!
      I have tried many diets for my Crohn’s symptoms but only the low residue one has really worked. I think at this point with the severe lack of healing happening in my gut, removing the diseased colon is my best bet.

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