10 things you should know if you’re thinking about having ileostomy reversal surgery

I had my ileostomy reversed in October 2015 after previously having my large bowel removed when a nasty bout of Ulcerative colitis, a form of Inflammatory bowel disease, attacked it.

Now, there are two types of ostomy reversal. One being J-pouch – where the rectum is removed and the small bowel carries out the role of the entire digestive system, and a straight re-join reversal, where your rectum is kept and your small bowel connected to it. I had the latter, so I therefore cannot speak on behalf of those who had the J-pouch.

Of course, I can’t really speak on behalf of those who have had the same reversal as me either, as everyone is different. But for those who are currently contemplating the surgery, I know it’s always good to know how others got on with it.

So, here’s my experience, in the form of 10 things those who are thinking about ostomy reversal surgery should know.

1. It may not be the ‘life-saver’ you thought it was going to be

When I had my ostomy bag I was suffering with horrendous amounts of leaks which would leave me with sore, red, raw skin. Nothing I tried could combat it, and it would often leave me having break-downs because of it. So, I assumed having a reversal was going to be my saving grace. I was wrong. I have had lots of problems with my reversal, including painful fissures, the need for botox in the rectum and I am currently awaiting Bio Feedback therapy because I can’t leave the house for more than three hours without desperately needing the toilet and being in horrendous amounts of pain.

2. It takes some getting used to

You’re not going to wake up from the surgery and go to the toilet ‘normally’ again. At first, you’ll go non-stop and may even have accidents. But this is all just part of the process of your body getting used to being put back together again. It’s normal.

3. They will tell you that you’ll only use the toilet 2-3 times a day, but this may not be the case

Surgeons will give you a best possible case scenario. While I’m sure many do use the toilet 2-3 times a day, on average I still go between 5-8 times a day a year on from my reversal.

4. If reversing from an ileostomy, you will never have ‘formed’ stool again

As the large bowel is what forms the stool, without it, you will not have a proper poo again. I know, it’s heartbreaking. But there are things you can eat and medication you can take to make it less watery.

5. The reversal surgery may decrease your chances at fertility

Every time a surgery is commenced on the stomach, it reduces your chances at fertility (in women). This is because the surgery causes further adhesion and may prevent the sperm reaching the egg. But there are many women who have gone on to conceive having had a reversal – so you shouldn’t let it affect your decision too much.

6. You may rely on medication

As previously stated, I currently cannot leave the house for longer than three hours without desperately needing the toilet. And when I do, I take medication to help me feel a bit more comfortable. In order to go out for a night without a toilet trip or two, you will likely need to have some Imodium with you – and possibly some extra meds to combat other pain too.

7. You don’t necessarily need to restrict your diet

You shouldn’t be scared to try new foods just because of your reversal. Remember, like with your ostomy bag, it’s all trial and error.

8. The scars heal quickly

Your stoma scar will heal quickly and from the inside. The wound doesn’t get closed up completely so that it can naturally heal from the inside out. It’s crazy how quickly the body heals.

9. Recovery may not be all it’s cracked up to be

I was supposed to be in hospital for just three days after my op, but my health deteriorated and I was there for 11 days. Granted I overcame it, but it was still a scary experience – made even scarier by the fact I wasn’t prepared for it and hadn’t been made aware of all possible outcomes.

10. Don’t push yourself

I know you’ll want to head back to work and out with friends after your reversal, but don’t do it. Going back to work to early, facing long commutes and putting my body under pressure when I shouldn’t have has caused many set-backs in my recovery and have only prolonged it. Your body has just fought another major surgery, remember to give it a break.

I understand that this list is fairly negative – and it’s not all like that at all. There are many positives to having a reversal, but ones that your surgeon will have also discussed with you.

Before having my reversal, I couldn’t find much information on the negatives of ostomy reversal, and I know I would have appreciated some honesty in regards to them.

Everyone is different, and everyone can cope with different things. But I feel it’s best to always be aware of how your body may be affected in the long run.

Words by Hattie Gladwell

4 thoughts

  1. Hi I had my reversal and it never worked so back to theatre i went and had another big operation- since then my bag leaks all the time due to lack of enough bowel and after a life of hell for four years I just have to accept it now and live with it as noone able to help me – = I would think twice of having the reversal but that is just me – mine was just a botch up from beginning to end – but lucky to be alive – saved my life but took away my quality of life . /

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