Friday, 20 December 2013

Crohn's Disease | Illeostomy | Update | December 2013

It has been a while since I said I would update you with things. The reason being it has taken until now for there to be any real news to update you with.

I left the last post saying I was due a "Sigmoidoscopy" on August 20th. I also said it was going to be performed by the Surgeon himself. Well guess what? He wasn't there that day. Whilst the chap doing it instead was lovely - actually he was much better at answering any questions I had & helping me to understand more why it had suddenly gone from yes to surgery to no - I thought the whole idea had been for my Surgeon to take a look for himself. I understand they are very busy people etc but sometimes you feel like banging your head against the wall about it.
The chap doing the procedure did think there was a slight stricture ( narrowing) in my Sigmoid. All I could do though was wait & see what the Surgeon thought.

In the meantime with everything going on & my history of depression it came as no surprise that I started to very much go down hill. I tried very hard to fight it on my own but I knew the time had come to see my GP because things were bad at home- I have a very supportive hubby but even he has his limits plus I could not hide it no matter how hard I tried from my Kids & I was starting to not want to leave my home.
I was prepared to wait a whole month for my appointment as I wanted to see my own lovely GP as I think even though I am biased that he is fantastic. Unfortunately everyone else agrees with me & appointments are hard to come by.

Before I saw him another letter came from the Surgeon. The results from my Sigmoid showed a definite Stricture & that he would have to re-think my surgery. He would see me in his clinic in due course. A letter came the same day for an appointment at the end of November. 

When I saw the GP as I knew he would be , was fantastic. AS he knows anyone with a long term illness will more than likely suffer with bouts of depression at times & as he also seen all the same letters I get from the different hospital departments he totally understood why I was so frustrated with it all too. It is the 1st time I have ever cried in his surgery , even when I felt low around the time of the fertility issues I did not shed a tear ( when I was there anyway, I cried buckets at home.) Anyway medication was prescribed & also I was supposed to be seeing a counselor. Although at this time I have not actually heard from them still.
I came out of his surgery not feeling totally better but relief at being understood. I knew that no matter what happened next that I always had him I could go & talk too.
When I saw him 6 weeks later he could see before I even entered the room that things had improved because I was smiling!!! Of course still a huge way to go but the pills must have been doing their job ( this time anyway as I have found in the past that they have done nothing.)

Over time I started to feel so much better & even started thinking so much more positive about the surgery or lack of. It was a wonderful feeling & I hope I can hold on to that for a very long time.

Typically my appointment with the Surgeon was cancelled & another was made for me on the 19th December. I had a near panic as this day clashed with my youngest sons Christmas nativity etc. It wasn't til I was on the phone trying to get through to change it that I read the time was actually 6 in the evening. I was relived as quite frankly I just wanted to at least get this out the way before Xmas whatever the news ( which tells you something as I would usually think if it is bad news tell me in the new year so I can at least have a Happy Xmas with my family.)

I have changed a lot in this last couple of months. In an ideal situation I would have my reversal & live happily ever after. Of course this is not & anyone with Crohn's knows that this is a life long thing. they cannot tell you if after a reversal you will be Crohn's free for a week, month or years! So I knew with my up & coming appointments that I would hopefully be calm whatever the news was.

I ended up seeing my medical man 1st because I saw him on the 10th. he was in a bad mood. Not with me I might add but at the Surgeon for being so slow on making a decision about things. There is another drug he wants to put me on but needs to know what the Surgeon is doing. Yeh me too!! lol!
Interestingly though he told me one thing that we had not been aware of until now. They seem to think the Stricture has occurred SINCE my surgery. I think this makes it a whole different ball game for me. Yes I would like my Stoma removed but this tells me that the Crohn's is still very active within my body & if I was to have a reversal I would probably be instantly poorly again & that means even more surgery. This of course is their biggest concern.

I went yesterday evening to see the Surgeon. In some respects it was a wasted journey as I knew he would say no surgery. It was frustrating too that the original appointment had been cancelled because if I had seen him 1st then we would know that the Medical Consultant could get me taking this new drug ( name escapes me sorry.) My Surgeon said that he would see me in around 6 months to perform a Sigmoidoscopy himself ( heard that before though) once I have been on this new drug for a while. I know I am a different person because I did not cry & the thought of another potential year of waiting. 

I don't see my Medical man until April time though so I am hoping that he may receive the letter  from my Surgeon & maybe bring it forward by a couple of months.

To be honest this whole new place I find myself means that I am actually wavering myself regarding surgery. Like I say ideally it would happen. However, my new way of thinking reminds me that I have had this Stoma now for nigh on 3 years ( In March '14) & I have been free from the Crohn's pain. Yes I have moments where I curse the thing but maybe it is a small price to pay for a huge amount of positives.
So , my new mindset thinks, lets try this drug, let them do more investigations because I actually have nothing too lose because I now see the Stoma as permanent anyway. It has taken a long time to get to that point but I always think this was because in the hospital having the Illeostomy done I did not hear " POSSIBLY temporary stoma" , I just picked out TEMPORARY! 

Well I know that there is always a possibility that I will slide again but I know that like this time I can get through it.

Thank you if you have read this far. You know me & my rambling so for that I apologise but I think what I love about doing a blog post is that I can write it all down & those who care can get the whole thing in one place. Otherwise I find myself repeating the same things over & over to different people (& will continue to do so no doubt,) & probably miss tons of things out.

Amanda xxx

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