An update from Hattie, post-reversal surgery!

Finally, what you’ve all been waiting for – Hattie’s first update since her reversal surgery!

I’d first just like to say a huge thank you to everyone who supported me during the time I spent with an ostomy. It was both a huge learning curve and an inspiring time for me. I found so many great people through a variety of IBD groups who inspired me to keep going, and who also made coming to terms with my ostomy easier.

As you’ll all know, on the 20th of October of last year, I underwent reversal surgery.

Because I’d had my large bowel removed but obtained my rectum, I had a straight re-join reversal, in which my small bowel was connected to my rectum.

I was told the operation and recovery would be easy – but boy were they wrong. It was a truly gruelling process. The 3 days I was supposed to be in hospital turned to 11, and I was unable to eat or keep any form of liquid down for 9 of those days, meaning I lost an entire stone during that week.

The way I felt was horrendous. I had no self control. No control of my bowels nor my stomach. I was in a lot of pain and I felt sick the entire time. I worried I’d made the wrong decision.

But, each time I looked down at my stomach, I cried…with happiness. Not necessarily because I no longer had an ostomy bag – but because my new stitches were a reminder of how far I’d come. I felt a little sad, that my journey had come to an end. I’d spent so long writing about life with an ostomy that I worried about what I’d do next.

Fast forward 6 months, and here I am. Sat at my laptop, with a healed stomach, drinking a glass of cider. I only note what I’m drinking, because it’s something that I wouldn’t have been able to drink before. Since my reversal, I have been able to eat and drink what I want with no issues.

Sure, it was hard at first. I was using the bathroom 6-8 times a day and for a couple of months I feel I regretted the surgery, because I had to take a few months out of my new job as I was constantly suffering with cramps, and I couldn’t rely on my stomach to behave. I was also really, really sore going to the toilet. But hey, who wouldn’t be after not going for 9 months?! I personally am really pleased with my reversal.

I think the key is to wait it out. Don’t get upset. Things take time. In the space of 6 months, I’ve gone from using the toilet 6-8 times a day to 3. The only thing I rely on is Imodium.

If you’re opting for a reversal, don’t be too hard on yourself. Give yourself time to heal. Allow yourself that time to come to terms with things and understand that things don’t get better overnight.

There are definitely parts I do miss about having a stoma bag – not being on the toilet for 20 minutes at a time is one of them. And I don’t think I’d be upset should I ever need one again. But having the reversal, for me, has helped me gain some control back over my body. And I’m glad to update you all that I now couldn’t be happier.

“My Experience With A Failed J-Pouch” – Reversal Surgery

By Kristy, Contributor for morethanyourbag.com

Hattie has been doing a great job of raising awareness of IBD and life with a stoma and I’m very grateful to be invited to write a post for her blog. Those that have read her posts will know that she’s recently made the decision to go ahead with reversal surgery. Given that she has been talking about reversal surgery (including the possibility of a j-pouch), I thought that it might be useful to talk about my experience with what is unfortunately a failed j-pouch.

I had emergency surgery for UC in December 2012 and was given a temporary stoma. Keeping my rectum wasn’t an option so I had the choice of making the stoma permanent or going for a j-pouch. To an extent, I felt like I was on a conveyer belt and it was a given that I would have j-pouch surgery. I obviously did give it some thought and consider whether keeping the stoma would be best, but I had pretty much made my mind up as I was being rolled in for the emergency sub-total colectomy. My j-pouch was created in June 2013 and connected in September 2013 (on Friday 13th!). The first two or three weeks with it went really well, better than expected. Unfortunately it went downhill from there. I suffered what was apparently a huge anal fissure and with very acidic output passing over it about seven or eight times a day I was in a lot of pain. After throwing a lot of different creams at it and two rounds of botox injections (I never expected that I’d have botox there!) it finally healed. It then became apparent that my output was unusually acidic and meant that I was in pain most of the time (not just when I went to the toilet). I would grimace my way through work, rush home to sit in a luke-warm bath and take codeine and tramadol to try and ease the pain. I was getting really frustrated as I just wanted to get on with my life. After nine months, I chose to go back to a stoma and to make it permanent. It turns out that was the right choice for me. Apart from a blip, when I needed to get the stoma revised, I’ve been feeling so much better and finally feel like I have my life back. My surgeon was somewhat baffled as to my experience and thinks the problem with my output may have been caused by my body chemistry being altered by chemotherapy that I had about 10 years ago (unrelated to my IBD issues). Hopefully, therefore, it isn’t an issue that many people will experience.

It might sound like this is all doom and gloom, but it’s really not. I’m very happy with where I am now. Plus, I would make exactly the same choices again (unless of course I had a crystal ball that told me the j-pouch wasn’t going to work out). After all, the numbers are on your side – the majority of j-pouches work, and work well. What I really want to do is highlight some of the issues that I found important when making my decisions in case it helps others.

First and foremost, make sure that you are happy with your surgeon and nurses. You are literally putting your life in their hands and you need to have utmost trust that they are both very good at their job and understand what you are trying to achieve. My surgeon is excellent and I am so lucky to have found him. What I really appreciate is that when I go to see him he asks if I have got back into running again – he realises that he’s there to not just make sure I live, but to make sure that I can enjoy my life in the same way that I did before I became ill. Also, don’t ever worry about asking to see another doctor for a second opinion. Despite the fact that I really admire my surgeon, I went for one. If they’re acting professionally and have faith in their own ability, they should not have a problem with it. In fact, they may well welcome another point of view, which was the case in my situation.

I found it particularly helpful to keep a diary to track what I had eaten, what I had done during the day and how much pain I was in. I used a traffic light system for pain. When I was having significantly more red and amber days it made me realise that, despite the optimism that might accompany a green day, reverting to a permanent stoma really was the best decision for me.

When you go to see your surgeon go armed with a list of questions. Write them down, because you will inevitably forget some otherwise. Don’t worry about taking up their time asking all the questions you need. You need to understand what is happening with your body and what the best way forward is in your circumstances. I’d also recommend taking notes at your appointment so that you remember everything that is said. There will be times when you’ll want to read over them to help you understand your options and the process. There is a lot to take in in a relatively short time.

Buy some Calmoseptine. Actually, buy lots of it. You can get it shipped from the U.S. using Amazon. The stuff is brilliant and really helps with burning down there – I wouldn’t have survived the nine months with my j-pouch without it.

Make sure your family and friends know what you’re going through. I did my best to put on a brave face, but it really does help if they understand what is going on. We all need support at times.

My First ‘Festival’ Experience With An Ileostomy Bag

I didn’t expect to be writing a blog about a festival, as I’ve been to a few in the past and never had a bad word to say. I didn’t actually think I’d have anything at all to comment on in regards to the day. I didn’t expect to encounter any issues. But I was so, so wrong.

One of my best friends had kindly bought me a ticket for Mutiny Festival in Chichester, which was so lovely of her. She really wanted to cheer me up and help me forget about everything that’s been going on recently. I really appreciated the gesture and went along with her to the festival yesterday. I’d worn a high neck vest and dungarees and some boots, something I knew would hide my bag should it blow up a little and something I was comfortable in.

We’d arrived at the venue and whilst waiting for others to join us, went to the pub. By the time we’d gotten back to line up, the queue was massive. So badly organised too, even the security guards and policemen commented on how poorly arranged it was. It was baking hot and we were squashed up in a forever expanding queue for two hours. It seems people had completely forgotten their self awareness and respect for others as they pushed in from the sides, groups at a time fighting for the front against those who had been standing patiently for hours. Not fun when you’re trying to protect your stomach from being elbowed by those who are too impatient to line up properly.

When we’d finally got in, I was in desperate need of the toilet. The first toilet we approached had already been completely flooded and shut off. I waited and went and watched Snoop Dogg with my friends, (the only reason we’d really wanted to go) and then went to look for some public toilets afterwards. The first set of toilets were a mess. There were no cleaners around for the whole day, and so muddy tissues (I assumed it was mud anyway – but after the amount I saw yesterday, I really can’t be sure) flooded the floor, preventing me getting my stuff out to help sort my ostomy bag out. No toilet roll was supplied once they had run out, and so it seemed I’d taken up a freelance job of handing out my baby wipes to those in need.

It was getting to the point where I couldn’t comfortably join in with everyone else because my ostomy bag was the size of a beach ball. My friend and I managed to hunt down what seemed to be the only staff of the event to ask for the use of their toilet. Considering it was taking place at Fontwell Racecourse, we’d assumed there would be inside toilets. I didn’t explain why I needed to use them, just emphasized by desperation. I didn’t feel I needed to explain, and to be quite honest didn’t want to embarrass myself trying to justify my situation. But after they denied the use of a toilet, and I’d walked away, my friend went and explained why I needed to use them so badly. They insisted there weren’t any other toilets than the ones I’d already seen, (hard to believe, what were the “VIP” using?) but a woman kindly took me over to the ONE disabled toilet across the whole festival. I don’t normally use disabled toilets as the others are normally clean enough to use, but this time I had no choice. She took me over but it was already full of others who didn’t want to use the other toilets either. The woman explained I had a medical condition to the girl at the front of the line – who didn’t take the information too kindly – and she reluctantly let me in front of her. Once in these toilets, I noticed the toilet was also nearly full to the brim with toilet roll and used tampons. I nearly vomited it was so disgusting. So instead of emptying the bag like I’d normally do, I had to take all my equipment out onto the baby changing area and completely start from the beginning with a new bag. Of course this took time. And it seemed others had noticed that too, as people vastly began shouting and banging at the door, actually threatening to knock the door down – knowing that I did actually have a medical condition, unlike them. It was absolutely disgusting behaviour. I had to leave the toilet as soon as possible, still doing up my dungarees as I left, but before I knew it, the girl behind me had swung the toilet door into my back. No body had let me pass to get out of the toilet entrance, so I’d had to climb under the barriers to get out. I was wedged in between the door and the barrier, shouting at her to stop, but the door was pushed harder into my back. My friend helped me out but I completely flipped at the girl. Her behaviour was absolutely disgusting, I couldn’t believe it.

I desperately needed a drink after that and chilled out with my friend for the rest of the day, watching the acts. But the incident had set off the day on a sour note.

By the start of the evening, two public toilet buildings had been shut off and all that was left for hundreds of people were a few portaloos.

You may be thinking to yourself “it’s just toilets”. But it’s not. When you have to take time out of what’s meant to be an enjoyable experience to change an ostomy bag that shouldn’t have needed to be because the cleanliness was so poor, alongside a group of people shouting at you for withholding their queuing time with it, it sort of makes you feel like you shouldn’t be there. And perhaps I shouldn’t have, but with the amount of live events I’d been to in the past, I really didn’t anticipate any troubles.

I’d never been to anything like this. I watched two underage people overdose on drugs before being taken away by paramedics just two hours into the event. In the heart of Chichester. Seriously? I later found out that as the queues had gotten bigger, they’d stopped checking ID to hurry up the queue. Was this worth it?Rubbish and waste suffocated every aspect of visible ground and in 12 hours not one litter picker had been in sight, and no waste bins were available. Queueing for drinks took anywhere between an hour and a half to two hours. Girls who can’t have been over 16 were begging people for pills. Had it been a midnight rave or worldwide festival, perhaps this was a little more normal, but for a small country town it was just down right embarrassing.

I’d never want to be that person that moans about a festival, I love live music, bands, the atmosphere… The acts were great, but it was just overshadowed by the lack of respect people had for the place, and other people. So many people left early, complaining about the state of the site, the respect of some festival goers and the unhelpfulness of the staff. I joined these people and went off the pub. We ended up having a 2 course meal instead. That was no festival, it was literally just an example of everything we should be aiming to repress.

I’d definitely recommend anybody with a medical condition that forces you to need the use of cleanliness or disabled toilets not to go, it’s more trouble than it’s worth. The amount of people bigging it up made it sound like Reading, but I can assure you, if Reading was anything like this, it would’ve been shut down a loooong time ago.

Or Mutiny Festival perhaps should’ve taken up the offer of help from The Fontwell Racecourse staff. I’d hate to see the look on their faces when they come back to work on Monday morning.1383782_1660777597474277_6520884371984263357_n

I’m sure many people had a great time, and of course, I had a great time spending time with my friends. But, having overheard a nearby conversation whilst in the pub, a girl summed it up right – “would they act like that at home? No. So why in the hell would you act like that in public?”

I think perhaps if they’re aiming to pull this off next year, after failing miserably this year…. They should probably have a rethink. Oh, and on the left you’ll see a picture of me smiling. And yes, it was taken before we entered the festival.

“There’s A Strong Chance You’ll Need IVF To Conceive” – The Ins & Outs Of My Reversal

You may have seen my recent blog post regarding my decision on reversal surgery; and if so, you’ll know that the subject of IVF was approached.

I was in a weird place when I wrote that post, and I think it created some confusion as to what was actually said. There were a lot of people who commented telling me about their story, their miracles and how IVF is not always a last resort.

So, just to go into a little bit of detail now that I’m coming to terms with things and feel a little stronger about what’s going to happen…

Basically, there’s a lot of theory as to what could potentially happen after my surgery. I am going to be having a straight rejoin, as they managed to leave the whole of my rectum when I had surgery for an ileostomy. So what they will do, is reconnect my small bowel to my rectum. I will be able to go to the toilet “normally” again and they said the chances are I will only go around 2-3 times a day, as opposed to the 7-8 times I empty my bag. That was fab news, as I had assumed it would be a similar situation, just without a stoma.

What I had also been told is that there is no cure for colitis. Again, I assumed that having my colon out meant the colitis had cleared. But I will always be prone to the symptoms, and there is a chance it could become active in my rectum again. I will still have symptoms such as fatigue and achey joints also, but there will not be a need for any emergency surgery. It won’t get to the point where I’m fighting for my life again.

There is a 70% chance that the colitis will flare badly again and I will become ill, and if this does happen, I will be moved in for J-Pouch surgery. This is where they take out your rectum, and create a pouch out of the end of your small intestine, which is pretty much a replacement rectum. You can then continue to go to the toilet normally.

Of course there is many risks in the surgery, and I could eventually end up with another stoma. But I am prepared for that, of course.

2dscanIn regards to IVF, I have been told there is adhesion on my bowel. This lessens the chances of getting pregnant, as it makes it more difficult to conceive naturally. I can however carry a baby and give birth. Of course, they give you the worst case scenario and by law need to inform you of all potential risks.

By having the next surgery, I will be increasing the amount of adhesion on my bowel, and there for the chances of conceiving naturally lessen again. If I do become ill again, and therefore need a J-Pouch, I’ve been told the chances are I will have trouble conceiving naturally and will definitely need IVF.

Of course, I completely appreciate that lots of people have conceived naturally, and in no way am I saying it was impossible. At first, I was scared it would be impossible for me, but after hearing all your wonderful stories, many of you have really given me the hope and support I needed. So I just want to thank you for everyone who has taken the time to send me over their stories, and any other positive information that has been sent my way.

Right now I think I’ve just got to focus on what’s right for me. I fear I’m really going to miss having a stoma, but there’s no way I can go through life thinking “what if”. For me, I’m just really excited to not have to deal with my burnt and sore skin! I’m extremely grateful though that my skin problems are the only problems I have had with my stoma, as it will leave me going into my reversal with nothing but appreciation for the life it has given me. And if I need one again, then this time round, I will be more than ready for it!


On another note, I am currently looking for contributors for the blog, this time those who have had or are facing stoma surgery, or reversal surgery. I’d love to read and post your stories for others to see. So if you have got any stories you’d like shared, please email me at hattie.gladwell@morethanyourbag.com.

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