Stoma Reversal Q&A With Natalie-Amber

Happy August my beautiful Pelican Friends,

How are you all? I have been loving this weather and getting so used to it that when our friend the rain came along I haven’t been wanted him here. Take a look here to view my latest project. I had talked about ‘Everybody is a Swimwear Body’ previously, I hope you enjoy it – every single one of these ladies is so inspiring, to date we have had over 55 thousand views on Instagram and so many amazing comments.

So, this month I wanted to talk to you all about Stoma Reversals, I know everybody reading my blogs will be reading them for different reasons, and some may resonate with them because they too may be thinking about having a stoma reversal one day.

On my Instagram story, you will see ‘Ask Me A Question about reversals’ I have listed the questions (from my followers) and the answers (from myself) in this blog. I hope those of you who are having a reversal or those who are debating, find this helpful.

What was the reversal recovery time versus the original surgery?

My original surgery recovery was a lot longer than the reversal. Reason being I was misdiagnosed for seven years, if you are new to my blogs read my daily mail article here to see my journey. The added complications added to the recovery time.

My reversal recovery time was much quicker, I was in hospital for a week, I was walking around the ward two days later, although I was unable to do anything for approximately four-eight weeks, purely again because of the type of surgery and I was tiny in weight, I was mentally in a better place. I had open surgery both times, so two big operations

Did you have any complications following the reversal?

I was actually very lucky in regard to this, I had no complications at all during my reversal or after. They do warn you when you go and speak to your surgeon just before they take you down that there is a chance something goes wrong and you may end up still with a stoma, but these chances are very small. However, I will say weirdly enough, my neighbour a few doors down has also got Crohn’s Disease, she had her stoma and then when it came to her reversal she actually woke up with her old stoma gone and a new one on the other side, only for a few months as her surgeon felt she needed more time and there were complications on the other side of her bowel.

Are you currently on any medication after the reversal?

I am on Infliximab infusions which I have at the hospital every 8 weeks. Infliximab is too strong for you to take orally so it has to be put into the bloodstream via a drip. The procedure varies in time, my first 3 were 4 hours long, then it dropped to two and now it’s finally dropped to one hour every time. I always tell people to add an extra hour on, however, as by the time you get there to sit down then they set everything up, and the extra half hour at the end where you have to wait for the flush it does often take up an extra hour. I always take a book of my iPad to watch movies on. I am also on Azathioprine, this is a chemo med and does (like anything) come with side effects. I, however, have been lucky and these have been working for me well, I was on 100mg, but they took me down to 50mg as my Bilirubin results kept coming back a little high. I know a lot of people think being on a chemo drug is going to cause hair loss but in my case, it hasn’t, and I am very lucky for that, so it’s best to always try medication to see what works for you as everybody reacts differently. One thing that is a BIG must for Azathioprine is making sure you wear sun cream at all times in hot weather as it makes you more at risk of cancer.

When recovered from the operation did you feel well?

Yes, after my stoma reversal I did feel well, I did feel sick but that was due to the number of painkillers they give you in hospital. My body hates Morphine and Tramadol and I always get really bad hallucinations on them, so they had to keep playing around with things to give me that wouldn’t do this. I did feel a little wary after the reversal when it came to eating, this was due to now everything is back inside of me I knew I didn’t have as much freedom with food as I did with the stoma bag. However, it Is trial and error so my advice would be don’t be scared to try foods just be a little cautious.

What are the risks?

Like anything there are always risks, I would advise not to look to much into them but also be prepared mentally for things like the operation not going the way you wanted it to and you wake up still with a stoma (like my neighbour did) or that you may have the reversal and find six months down the line you need the bag back again because you keep having relapses. This is a risk you take in regard to having reversal surgery. I would always say to ask your surgeon however beforehand anything you want to know in regard to things like this.

Will I go to the toilet more than normal? Is it watery?

Everybody is different, we all have different types of stools. I vary, sometimes mine is very hard, and sometimes it just drops out, it really depends on how my bowel is feeling that day. I can easily say however for me personally, I am always going to the toilet 100% after any meal I eat without fail. There have been times especially in this pandemic where I have eaten a meal and gone for a walk, no toilets about and within 20 minutes needed a poo and it gets so bad that I have to go in the nearest bush. I get that’s not nice but when you have to go and have no control over this that’s what you have to do. I am waiting on some medication from my IBD nurses to help control my stools but sadly they are finding it so hard to get as it comes from abroad.

What is your health like now compared to before?

Honestly, my health is so much better than before, I actually have a life now. When I had the bag, my whole life changed for the better. Before I was diagnosed I was in so much pain I got to the point where I would think I cannot live like this, this isn’t life. I really didn’t see myself making it through the rest of my life with the pain I was in. After my reversal, my Crohns did return and bigger than before as originally my surgeon had cut it out and had said I was in remission there were no signs of Crohn’s in my body – sadly it came back with a bang, even longer than it was before. I have just under 25cm left of my small intestine and the Crohns has returned 40 cm so all of my small bowel and into my large which really wasn’t good news. I am however now on medication like I said, and this is working for me which I am very grateful for.

How did your body cope post-op? Were you running to the toilet?

Yes, I was like crazy. My bowel was so freaked out that she had rested for a whole year to now having to work she had no control over herself. Also, I didn’t do my pelvic floors which is a BIG thing to do to help prevent this from happening.

How would you feel if your reversal kept getting cancelled?

I am a big believer in everything happens for a reason, if your reversal has been put on hold, it’s for a reason. I know sometimes things don’t make sense to us, but they will eventually. I also know it can be upsetting when you get yourself prepared mentally for something to have it cancelled. I was told I wasn’t ready for my reversal six months before I had it and I remember being so upset and now I know why I wasn’t ready! I wasn’t mentally or physically reading. Trust in timing.

What kind of reversal do you have? J Pouch or IRA?

I have an IRA, this means my intestine has simply been stitched back to the remaining part of my intestine. A J Pouch is where your surgeon will remove your colon and rectum and use the end of your small intestine known as the ileum to form an internal pouch which is usually shaped like a J. However, your surgeon will discuss your options on which one is best for you.

Before I part with you for this month I just wanted to give you some key things I think are important to remember when going for a reversal:

1. Follow your heart, do not let anybody pressure you into having a reversal if you are fine and happy with your stoma bag. Please do not rush this decision and make sure you are 100% before you confirm your decision.

2. Sometimes after a reversal, it may take a while for your bowel to move, it took mine five days, I was being sick, and they had to put a tube down my throat to help move the bowels which worked. My surgeon advised me to have food or drink with caffeine in as it helps stimulate the bowels.

3. Make sure you listen to your stoma nurse and do your pelvic floors they are so important I cannot explain.

4. Meditate, find yourself, and mentally prepare yourself before surgery so you are as calm as you can be.

I hope reading this has helped you in some way. If you want to know anything else please feel free to message me on Instagram, I am always here.

Enjoy the rest of your summer and see you in September! (scary right)

Love

Natalie-Amber x

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