Preparing for surgery

Preparing for Stoma Surgery – the emotional side

I am starting the countdown for my upcoming surgery and I would be lying if I said I wasn’t having a slight panic about the upcoming date. This post is for those who are classed as having an elective procedure and having anything from 2-3 months to prepare and plan for the operation. So, my date is the 19^th of October and I am having a Pan-proctocolectomy carried out. So, what is this procedure?

The Medical jargon

‘This operation removes the large bowel, rectum, anus and sphincters. Pan-proctocolectomy is the removal of the entire colon, rectum and anal canal. This type of stoma is permanent.’ My surgeon made a small joke about it not being this, but is classed as this type of procedure, as I only have half of my large bowel in place at present.

What else am I having done?

On top of having this removed, and my current loop ileostomy refashioned into an end ileostomy, which will involve several joins of my small intestine if he can’t get the small bowel unpicked from the ball of scar tissue its currently adhered too, I am also having extensive scar tissue removed whilst he is inside tinkering away. As always, there are risks to having this carried out and now my brain is wired into the risks more than the pro’s once I have recovered from this surgery.

So, what are the risks?

For me the risks are as follows;

1. Leaks from the joined intestine
2. Post op ileus
3. Possible removal of my reproductive organs due to previous surgeries and the amount of scar tissue that currently resides inside
4. Possible nick of the urethra as my kidneys and urethra are currently adhered to a rather fetching amount of scar tissue
5. The bottom wound not healing, or the wound being left open if my Crohn’s has impacted the rectum

The emotional side of things

So, the impact of having another surgery carried out is leaving me rather emotional and tetchy now and leaving my sleep pattern rather erratic. For those of you facing surgery, it is perfectly normal to have the occasional feeling sorry for yourself moments and self-doubt kicking in.

The thing I struggle with the most is being a mummy. Having to explain that mummy is going to be laid up for an extended sabbatical and not going to be as fun-loving as normal takes its toll. I feel guilty for putting my daughter through another operation, but I know deep down it will be worth it in the end. On the plus side, she is continuously singing Barbie Girl to me as she finds the Barbie butt part rather amusing.

Then, there is the guilt of putting loved ones through the surgery time and becoming my minder or carers for a period of time, whilst I am unable to do what I normally do. I think it’s frustration with me. I’m primed to look after others and not so good at receiving the help when I need it, as I feel frustrated and I don’t like to sit still.

You must think about the light at the end of the tunnel. That light being once you have recovered, the surgery will seem like a distant memory, and that it will help and improve your quality of life, give you back a sense of freedom and stop you being restricted due to medical needs and the illness prior to the operation.

I also have quotes from others that have recently had the procedure carried out, or like me are facing the surgery in the future.

Sonja’s Experience

When I was told I had to have the complete proctectomy, I had a bit of a meltdown on that day but then I accepted it quickly. I was petrified of the epidural and only that. I had a good reason to because once again, it didn’t work properly (waking up one morning and thinking someone had stolen your legs in the night, not fun) and I got MRSA of the spinal fluid.

Even after having ileus again, an extended stay in hospital and an open butt wound that still hasn’t fully healed three months in, the only real emotion I have felt through all of this is fed up.

I know all will be well once it has healed, so hurry up and be done! I am now completely free of all ulcerative colitis medications and my energy levels are so much better. The bag has improved my quality of life and isn’t a hindrance.

I am proud of my bag and happy to flash it where needed. Ultimately, my keep smiling attitude has served me well. It is what it is, and you’ve got to keep smiling, as it is preferable than what my life was like prior to the surgery.

Dan’s experience

My surgery experience is probably one of the more positive ones out there. After suffering severe ulcerative colitis for three years and going through every drug the hospital had to offer, I elected to have surgery.

On the day I first met my surgeon I was given three options:

1. Key hole surgery removing the colon and leaving the rectum intact
2. A full pan-proctocolectomy. Removal of colon, anal canal and rectum all in one operation
3. Removal of colon and formation of Jpouch

Due to the severity of my colon and the fact that my rectum etc were all inflamed and ulcerated I opted for option two – extreme I know, but I didn’t fancy the idea of going back for seconds.The day of the op came, and I went down for surgery at 12:15pm and got back to the ward at 9:15 pm and was drugged up to the eyeballs!

One week after the surgery I could go home, but I could only either stand or lay on my side. I have to admit, the stiches in my bottom were rather tight… The stitches stayed in for three weeks and having them removed was not a pleasant experience and one that brought tears to my eyes putting it mildly.

Since then I haven’t looked back. Nine weeks post-surgery, I have been to Centre Parks with my lovely little family and I even managed to ride a bike! Now, it’s time to get my fitness levels back up and start enjoying life again. I can now eat and drink whatever I want with no issues. It’s fantastic!

I know my experience is probably better than most people’s and I feel extremely lucky to have had such a great experience.

Sahara’s Perspective

I’ve never really had much emotion about surgery. It’s always just been one of those things that had to be done. The actual surgery itself does not stir any emotion in me at all, which I don’t particularly like because I struggle to relate to those I try to support.

It’s a big thing to happen in a person’s life, and it seems to be normal to be anxious, worried and even scared about it. I just don’t feel it. My thoughts are always focused on what I need to organise, save and buy, so that there’s nothing left for others to sort. In the past, three surgeries have been planned, three have been emergencies.

The next one, my protectomy is planned (elective), and whilst I feel nothing about the surgery itself, I have had other emotions to deal with because of the process. A bag for life is not something anyone would willingly choose over a ‘normal life’. It’s what we have to choose over a rubbish life we lead due to illness. I had a few days thinking ‘I’m not ready yet’ and feeling upset. Just a few days later, I remembered the last ileostomy and being pain-free and I feel relieved that it was happening, and the panic had gone.

I NEEDED a date but had to go through the referral process to see my surgeon as I had previously been discharged. I have to plan for my sanity, because no plan means no control over the entire process. Not being able to plan is what makes me stressed, angry and not in control over what happens.  The waiting for the pre-op assessment and surgery date drove me insane!

Once I had my date I could finally breathe again. I feel a little weird about the whole ‘bum hole theft thing’, purely because I already know how it physically feels following open surgery and the creation of a new stoma. I can’t imagine how the rear end is going to feel.

I also know that perianal wounds are notorious for not healing well, but that doesn’t worry me as I know it will get there in the end. My main focus is the end. This is what surgery feels like to me. It will be the beginning of a new pain-free life and freedom from my symptoms, my life will no longer be on hold. Everything I have wondered about with this surgery, I have asked in #IBDSuperHeroes Facebook group. I feel I know what I am doing no matter what happens. The end is insight and my only emotion is feeling the excitement of what this operation will bring to an end for me.

Summary

This is all based on individuals who have either had the surgery or facing the upcoming procedure. This is a post to help those with regards to any personal worries they may have and to help support them in their upcoming surgeries. For those who have written and taken the time to provide their experiences, I would like to say a massive thank you.

Many thanks for reading,

Louise X