The Appointment Arrived… 

If you’re a regular reader of my blog you may have read my Desperate Plea; an email I wrote impeaching a surgeon I’d seen months previously to help me. Basically I have prolapses galore since the birth of my son. That combined with years of bowel problems and slow transit has left me with severe difficulty when defacating, or even passing wind. To the point my bowel becomes incredibly sore and bloated, resembling that of a pregnant woman. This issue is really taking over my life, to the point I literally begged for the doctors help. 

Normal stomach and bloated stomach. This happens daily and you can see my tummy swelling.

Miraculously the surgeon actually read my letter and even responded within a few hours, promising to get me in his clinic. A promise he indeed kept. 

Yesterday was that appointment. The one I’d been simultaneously hoping for and dreading all at once. The one which is been mentally and emotionally preparing for. I’d steeled myself for the very real fact that he may tell me I couldn’t be helped surgically. I also looked into options I thought may be of help. Options which my friends and family believed would never happen. Never even be on the list. They were wrong. 

Yesterday, as I laid everything on the line to the surgeon he looked me dead in the eye and told me I had three options. 

1 – have a tube as small as a biro formed from my skin into my bowel which I would then flush through with saline every day forever. 

2 – have the prolapse repaired and then have the tube inserted if I’m still having problems. (Which I enevitably will have as my issues began as a small child)

3 – a colostomy bag. The option everyone but me thought would never happen.

I asked his advice. What do I do? He couldn’t tell me. Ultimately, this is my decision. It’s my body, my life, my choice to make. 

Whilst I understand that; a huge part of me wishes he had been able to promote one option above the rest. To take the responsibility from my shoulders and ive me someone to blame should it all go wrong. Or even if it goes right and I just have a tough day. 

Right now I’m in shock. I don’t know what to think and my emotions are all over the place. I’ve burst out crying and made many many inappropriate jokes since stepping out of that appointment. I’ve researched, and worried, and researched some more. There’s not been a walking minute where this huge decision hasn’t been nibbiling away at the corner of my psyche. 

People have said to forget about it. To put it to the back of my mind for now. My surgeon is going to discuss my case at the Multi Disciplinary Team Meeting. I will be having a Marker Study on my bowel to see which bits are pulling their weight. Then, in six to eight weeeks I will be back in to see him. Possibly signing up for surgery. It’s not that long to wait, but right now it feels like forever. 

I’ve asked around for people’s opinions. Many think have the prolapse repaired and just see how I go. Or just have the small tube. But, having lived with my problems, I know that neither of those will work without having both done. They cannot be done at the same time. So I’d need at least two operations. My surgeon couldn’t tell me if the flush outs would be painful. Only that they take at least one, maybe two hours and must be performed daily. Or every other day if you’re lucky. So even on days I cannot see straight, I’d have to get my ass on the loo, and stay put. If it’s anything like when movicol explodes through me.. it will be painful. I don’t know if that’s a sustainable option for me. 

So I come to the bag. A huge operation to form a (possibly irreversible) massive change to my body. Scary to say the least. The thought of never having to go through the ordeal of passing a motion through the traditional exit ever again though? That leaves me wanting to cry tears of joy. It’s not that simple though. I know I get a lot of mucous build up. So, if they don’t take my colon I’d still be having to go and evacuate that. If they remove my colon then the op becomes irreversible for life. Which would be the best option? Would I still be able to eat steak?  My body is super sensitive, could I cope with the adhesive of bags on me permanently? Would I still be able to eat steak? Would it be possible to stay hydrated so as to keep my POTS in check? Serously, steak? How would my EDS impact healing? Would it put my husband off me? (Regardless of the fact he claims it won’t.) Could I still sleep on my tummy? For the love of god, could someone just tell me if I could still eat steak???!! 

I have a lot of questions. New ones are popping into my mind by the second. But I’m trying not to focus on this too much. I’ve been called brave. But I’m not. I’m scared. I’m terrified. I’m frightened of having another operation. I’m scared of adjusting to a tube or a bag. Mostly though, I’m scared of having to continue as I have been for the rest of my life. I’m scared of missing out on my kids growing up. It’s that fear that pushes me forward. That stops me hiding in a corner and refusing surgery. I have a family to fight for. A family that needs me present, not locked away in pain. For them, I will do anything. 

** NB. The surgeon said my frank openness has been a great help in treating me. He wishes more patients would leave their modesty at the door and just tell him like it is. That’s perhaps something to consider at future appointments. 

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6 thoughts on “The Appointment Arrived… 

  1. Hi.
    I don’t know what you’re going through apart from what I’ve read the last few posts. However taking all that you are going through into account; if I was in your shoes and as scared as I would be. I feel like I would bite the bullet and go for fixing the prolapse then the tube.
    I know that’s two big scary operations but what if it worked? Yes you have to flush it. But you wouldn’t have an external bag to worry about being self conscious about.
    What if those two operations don’t work?
    Yes you would be looking at another scary operation and it would be irreversible but you gave the other options a chance and to be fair anything has got to be better than it is now.

    I wish you all the best xxxx

    Liked by 1 person

  2. and your doctor is right. That openness really helps. I wasn’t due to my hubby being weird – I had gotten accustomed to shutting up about some things. Once I realized it was his problem and not mine, I was okay.

    Liked by 1 person

  3. I would say that you need to speak to the team of nurses that help people adjust to having a colostomy bag for all the info and answers you are looking for. They will have the most ‘hands on’ experience of all the issues you want to raise. Also look in to the success rates of repairs so that you can gauge the risk vs reward aspect more appropriately…I hope you get the answers you’re looking for and despite the fact that you’re scared and terrified and pre-occupied with steak, you are also incredibly brave…you are x

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    1. Thankyou for your kind words and sage advice. I will definitely be speaking to those nurses before any op takes place. As for success rates, I have already been given those. Due to my EDS a repair could be incredibly short lived. I’m likely to need it re doing around every five years. Possibly more.

      Like

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