Online support groups can be great, but of course, there are negative aspects to consider too.
Managing online support groups is not new to me. Many of you will already know that I run the #IBDSuperHeroes Facebook group. In 2014 I was managing a different group, which grew very quickly. Too quickly, in my opinion. There were a lot of issues, negativity, rowing and accusations of cliques, but I think it taught me how to do it better this time.
My priority is providing a safe place and support for those with IBD when they need it. There are 100% no cliques where I am concerned. Half of the time, I am running down the new posts and commenting where I can, without knowing who I am even talking to. Old member? Serial poster? Newbie? Lurker? Great, let’s see what we can do to make your day better!
In my mind, a group exists as a support network. To post in when you’re feeling rubbish and need a pick me up, advice, or to blow off steam. Asking questions about others experiences and learning from other people’s journeys is priceless, and can help you create positive coping strategies for you, and then you can also share that experience and knowledge with others. However, groups should not be used for asking, or giving medical advice. If you ask a question which should be directed at a health care professional, then you are putting yourself at risk. Please don’t do this. Another patient is not you, and IBD is a very individual disease to each person who suffers with it.
I don’t think there’s room for being tolerant of nastiness or rudeness. I know that the frustration of living with IBD can make patients angry and upset. I know that fatigue and treatments can also affect how someone acts and feels, but, we are all fighting a battle, in our body, and often in our heads, and a support group should be the place where you can find and give comfort.
I am not up for playing mum to people who DO know right from wrong, so there are no cautions or warnings in #IBDSuperHeroes, simply removal from the group. We’re very lucky, because generally speaking, we have a good bunch. If we do drop people a message, it tends to be because I don’t think they’re aware of how something they posted came across, or they were unaware of which charity we support.
There’s no room for competition either. The fact is, it’s all relative. The worst thing to ever have happened to a person is as traumatic to them as the worst thing that’s ever happened to you is. Whether one is a colonoscopy and one is emergency surgery is irrelevant. It’s hard for them, and they need support.
If you use a support group as it is intended to be used, then it should be a positive experience. So, here are some positives and negatives about online support groups.
Positives - Nobody gets it like someone going through it:
Gaining 2lbs after struggling with weight loss for so long, or finally having a bowel movement after a blockage or surgery is the type of stuff that nobody else really understands. An IBD sufferer really is incredibly, genuinely pleased for you, so what better place to celebrate these successes?!
Then there’s the less celebratory stuff, like crying over an accident or bag leak when you’re up in the middle of the night showering and changing the bed, or when you find yourself covered in your own faecal matter when out of the house. Other patients cannot fix it, but they have been there, and sometimes, just knowing you’re not the only person going through it, really does help.
You create friendships with people that you don’t have to constantly explain yourself to. People that don’t get mad if you don’t reply for a few days because you’re fatigued, and that don’t question you not leaving the house for 5 days or still wearing your PJs at 3pm. You may find that once you’re in remission, you don’t really use the groups anymore, but the relationships you’ve formed whilst active can still remain very strong.
Talking to someone going through what you’re going through, or what you’re about to go through can be an immense help. Whether that is tests, procedures, surgery, or even the new treatment you’re about to start.
You have the opportunity to learn from those that have walked the same path you’re walking. If they have walked it before you, that can make the road seem clearer, less bumpy, and maybe even make you feel more optimistic about what’s to come.
Many people will post regular updates just about what they’ve been up to, and what they’ve managed to achieve today, this week, this year etc. Things that they didn’t think would be possible at the time of diagnosis or during a flare. These “light at the end of the tunnel” posts can be incredibly helpful in tough times.
You can rant about how you feel to people who can actually relate. Most people have experienced negativity from people around them, those close to them and even strangers. It is often because you aren’t visibly sick, so strangers assume you’re healthy, and friends struggle to deal with the constant cancellations, lack of response, or sometimes just can’t understand that you don’t just start a new treatment and feel better within the week.
You can openly talk about how sad you are, and people will often tell you that they feel, or have felt that way too. There tends to be a sort of grieving process we go through, due to the loss of our old and “normal” life, which doesn’t necessarily just happen the once. It can happen each time a flare occurs, or even when some of the extra-intestinal manifestations stop you in your tracks. Having others recognise your struggle, and validate it can really help.
Many groups, like #IBDSuperHeroes try to arrange fundraisers and events so that you can meet up in real life. Personally, I absolutely love this, as I feel like other patients are “my people”.
If you’re newly diagnosed, joining a support group can feel overwhelming. You’re often confronted with worst case scenarios that you don’t want to think about yet.
Whilst forming relationships with others who “get it” is largely positive, it can be distressing to see people that you have come to care about struggling, and knowing that there is nothing you can do to help them.
If you’re health is good at the moment, you may often find yourself drifting away from the groups, as you currently have no use for them, which can be a source of guilt. It shouldn’t be. Groups are there for when you need them, and if you want to pop in and post an update about how good life is at the moment, that is good too. It brings positivity and hope for those in a less positive place.
Be prepared for bias views. As I mentioned above, many people drift away from the groups when they are feeling well, so the people who are in the groups and commenting on your posts are struggling themselves at the time. Some people diagnosed with IBD really do just try a few meds, feel better and carry on living their life. These are the stories we often want to hear, but they are also often the people that never found themselves in a place where they looked for and joined a support group.
If you’re not in a group with 10,000 members, you can wait a while for a response, which some people don’t like. Just know that it’s not a case of being ignored, it’s just sometimes people don’t actually have advice for you, or life and being sick has prevented them from being active online.
The only way you will ever really know, is if you try it and see. We try to keep our group as stress-free as possible, after all, life can be tough enough, and stress is a trigger for many people. If you want to pop along, #IBDSuperHeroes would love to have you!
It's been a while since I did any kind of personal update, but things have been happening which I wanted to share with you.
Earlier this year, I was contacted by Merakoi because I had been identified as an IBD influencer. They were looking for someone to represent the patient voice on an upcoming project, with the main aim being to design an offering which is truly of use to the patient throughout their IBD journey.
How could I say no?!
So, for the last few months, I have been working with them (and a Pharma company) as a "Patient Expert", with the ultimate objective of identifying specific areas that additional support would be useful at, for patients.
Tomorrow, I fly to Basel ahead of Friday's workshop, in which many discussions will be had about the common issues we, as Crohn's and Colitis patients, face throughout diagnosis, flares and treatment.
I'm in a very unique position, as both an active member of the IBD community, and a digital marketing professional, so it's a very exciting project to be involved in.
It has been truly exhausting though!
So, wish me luck! I just hope I can represent the IBD community well enough. Now, if you'll excuse me, I have packing to do!
Last year, I researched hashtags for World IBD Day that people could use on social media to help increase the reach of their posts.
Those are obviously out of date now, as new hashtags appear all of the time, and popularity changes, so I have done it again for this year!
Please note that these hashtags have been generated using, what I consider the most common IBD awareness hashtag to be, #IBDawareness. The hashtags below are the most commonly used and far-reaching hashtags associated with it.
Of course, I will always urge you to use #IBDSuperHeroes, as that's the tag I search for using the IBDSuperHeroes Instagram account, which I then re-gram from.
According to Hashtagify:
According to RiteTag:
According to Keyhole:
These are the 20 hashtags I will be using in my IBD awareness posts tomorrow on World IBD Day! I can then add another 10 based on the content of my post, and whether I am talking about specific symptoms or my stoma etc. You're very welcome to copy and paste this list!
Pop along to Instagram, Facebook or Twitter and you will find a huge number of accounts “raising awareness” of Inflammatory Bowel Disease or having a stoma. Posts on these accounts often include tips, which are also often wrong!
Influencer marketing is all the rage right now, with big brands like Disney even getting in on the action. Basically, it’s the digital era’s version of word of mouth. Peer recommendations have always been a major influencer, and with social media enabling people to gain “friends” all over the world with the click of a button, and to follow the journeys of those they find inspiring so easily, some people will often find themselves with a great deal of influence over others.
Many influencers became influencers purely by chance, because some media outlet picked up their story or a post on their social media went viral. Some people know how to build fans online, and simply do it for the numbers. They are not trying to gain followers to help educate or support people, they are not investing any of their time reading the latest research, and they certainly won’t accept any responsibility when something they shared has negative repercussions for someone.
Don’t get me wrong, somepeople are influencers because they earnt it, and they really know their shit – pun intended.
Whether you built a large social media following due to the knowledge of how to do so, or purely by accident, you need to be careful about what you say!
Many people use these accounts to share their journey with IBD or an ostomy, but the experiences of one person are often irrelevant to others. It really grinds my gears to see people recommending supplements or diets or exercise programmes to the community as a whole. The same can be said for people making broad statements about IBD or stoma life, when in reality, the statement is just based on personal experience. Everyone is different, and this should always be taken into account and made clear to readers.
I find myself increasingly frustrated by the amount of careless and irresponsible individuals sharing information, tips and tricks online.
Here are some examples of the things I have heard and seen during the last few months from these “influencer accounts”:
Bad tip: Hydration tip for ostomates – “adding lemon to your water makes it super refreshing and tasty.”
Most ostomates suffer with dehydration on occasion, especially in hot weather, due to a shorter digestive system causing malabsorption. The best way to rehydrate is to drink an electrolyte replacement solution. Lemon is actually a natural diuretic, so will likely make your dehydration worse!
Bad tip: Changing your ostomy appliance - “Use baby wipes when changing your bag for ease and to stay clean.”
Your stoma nurse will have recommended that you clean the peristomal skin (the skin around your stoma) with just water. This is because the peristomal skin is very sensitive. You can get wet wipes which are specifically designed for the purpose of being used during bag changes from ostomy manufacturers, if this is something you think you need, but baby wipes are not a suitable replacement.
Most baby wipes contain oils, which can affect the adherence of the baseplate to your skin, increasing the likelihood of leaks. Most baby wipes also contain perfume, which is not suitable for use on the sensitive skin around your stoma, and could cause irritation and dryness. Baby wipes may be too abrasive, so these can also make the skin dry or irritated.
Bad tip: On easing symptoms - “Drink/Eat [insert ingredient] to improve IBD symptoms.”
The list is endless; from Aloe Vera to only consuming raw fruit and vegetables! As above, no two people are the same, and if you have found something in particular that has helped ease your symptoms, then YAAAAY! By all means, do celebrate that success with the community, but nobody should be recommending that everyone try it! You have no idea what the people following you are dealing with, what type of Crohn’s Disease or Ulcerative Colitis they have or what their symptoms are, so why on earth would you ever assume that you can fix them?
Bad statement: Talking Jpouch surgery and risks – “Jpouch surgery does not affect fertility.”
Jpouch surgery does frequently affect fertility. Research has shown that having a Jpouch built laparoscopically can reduce these risks.
Some people have no issue at all conceiving after Jpouch surgery, and that really is great for them, but the fact remains that there is a much higher percentage of people that cannot conceive naturally because of the surgery. Simply put, there is not a lot of room inside to fit all of our organs, and when Jpouch construction takes place, there is a lot of activity (cutting, pulling, stitching, tugging) all happening in the same area as our reproductive organs. This can cause scarring and fallopian tubes to become blocked.
In conclusion, I would like to urge patients to use some common sense and do a little research before blindly following tips and advice from people who are not medically trained and haven’t made the effort to do their research.
I would also like to urge those with influence in the community to act responsibly!
I'm often known for being honest, and saying it how it is, but, the fact is, that's often not completely true.
I do want and like to share the ups and downs of my IBD and Ostomy journey on my blog and on social media. I'm passionate about raising awareness and that means that a certain degree of honesty and willingness to share is needed.
But, when you look closely, I have lied a lot, probably daily for months at a time. Not big lies, just the standard "I'm OK, thank you" response to the question, "How are you", when the reality is so much darker than that.
So, I wanted to talk a little bit about the reasons that I, and I suspect many others that have a chronic illness, don't always tell the whole truth.
People don't really want to know when they ask.
When you feel unwell every day and you tell people how you actually are, you soon begin to notice their eyes glaze over with boredom, because they’ve heard it before. You said the same thing the last 5 times they’ve asked. People can’t understand why you’re still in pain, running to the toilet and suffering with joint pain and fatigue a whole year after you first became unwell. It’s assumed that you take your medication and you get better, but with IBD it’s often not the case, and it can take years to find a treatment that works for you.
No-one wants to be the "moaner" amongst a group of friends, and it often leads to you being talked about behind your back. It's not always necessarily nastiness, just a lack of understanding, and so it becomes easier to just say you are fine.
People don't really understand.
When people still do not understand, after you've repeatedly told them how you are and why, they often make comments such as "Hope you feel better soon", "Are you still not well?" or "Go have a nap." They’re well intentioned, but when you won’t just feel well soon, and no amount of naps will improve your fatigue, it can get really frustrating, so not telling people the whole truth saves the anger you feel towards people that still don't get it.
Acknowledging it makes it real.
Talking about how you are won't actually improve how you are in any way. Sometimes talking about it actually makes it worse, like acknowledging it makes it reality, and therefore more of a problem. I do not take sick days off work, because then I sit at home and have time to think about how rubbish I feel, and I feel angry that my illness has also stopped me just "getting on with it". It's bad for me, and I feel the same about constantly having to say you do not feel good.
Protecting other people.
My mum attends hospital appointments with me for one reason; to hear the truth. She doesn't trust me to tell her what is going on, how I really am and how I feel. I don't tell her because knowing, will actually make her feel bad. Knowing you cannot help someone you care for sucks. I know this because I feel it myself in the IBD community. You want to do something, say something to help, but you cannot. You feel useless, and I don’t want her to feel like that.
The woman isn't stupid. She knows when things aren't good, she just doesn't know in what way. The only way she can really find out is when I tell the consultant, because I always tell them the truth. That's the only way they can understand what's going on and help me.
It hurts when your friends don’t really have any interest in the fact you feel terrible.
It hurts to find out you've been talked about negatively for something that's out of your control.
It's frustrating trying to explain what fatigue and your life is like, to then just to be told to take a nap or that "I understand how you feel after having gastroenteritis for 4 days." Do you? You think 4 days teaches you what a lifetime of unrelenting symptoms is like? Did you have all my extraintestinal manifestations at the time, or do you still actually just believe that I shit a lot? And now you know that's tiring?
It hurts to see the upset in other people's eyes that you put there. They feel useless and then I feel guilty. I don't like having visitors when I am in the hospital because when people see you with tubes and wires coming in and out of you, and weight falling off, they fear for you. They’re sad because I am sick, and I hate that.
My journey with my stoma has not been an easy one. Let’s rewind to my first stoma experience in 2007.
I got really unwell, pretty much overnight. After just two weeks at home, doing nothing but sleep, wake in agony, run to the toilet and then sleep again, I went to A&E. I was seen very quickly, diagnosed with Ulcerative Colitis and admitted to hospital for IV hydrocortisone. Less than a week later, I was taken for surgery to remove my colon due to the medication not having any affect.
So there I was, 19 years old, with this stoma that I was supposed to take care of, but I could not even look at without feeling sick. I’d never heard of one until my UC diagnosis the week before, and I certainly didn’t want one. I had been told it was a temporary thing that I could have reversed later, and that was the information I had clung on to.
I hated the stoma the whole time I had it. I went out and purchased jogging bottoms and boys T-shirts to cover myself up. During my first follow up appointment with my surgeon, the first thing I’d asked was: “When can I have this reversed?” He talked of the Jpouch and advised I start a family first if that was on my list of things to do. I desperately wanted to be rid of the bag. I had constant leaks, burnt skin, the bag wouldn’t stick, convex bags hadn’t helped and I hated leaving the house, so it wasn’t long before I asked for the surgery to go ahead.
After 2 years, I finally got my reversal! I could not have been happier. I knew the risks of Pouchitis, but I was sure we would deal with that if it came along, and then I would just carry on with my bag free life.
It wasn’t long before my first Pouchitis flare. It turned out I had antibiotic-refractory Pouchitis, which basically means that the standard antibiotics used to treat it didn’t help, nor did the commonly used probiotic, VSL#3. Prednisone helped, and I used it each time I had a flare for the next few years, until I became dependent on them, meaning every time I tried to wean off them, the flare returned. So, antibiotic-refractory, steroid-resistant pouchitis it was!
I moved on to Azathioprine and eventually achieved a 10-month remission before flaring again during a particularly stressful period in my life. I was due to start Infliximab, but my IBD nurse warned me that I needed to start considering having the Jpouch removed. I did not like this, so I asked to be referred elsewhere for a second opinion, and because if I was going to have more surgery, I wasn’t going to have the idiot that had done the previous ones do it.
Due to my anger and frustration at my body, and at everyone else on the planet, I took to social media to raise awareness (rant) about the difficulties of having IBD.
In my head, there was no way I could return to “bag life”. I’d decided that if it came to it, I would rather take my own life than have a stoma again. It is worth mentioning that at this point, I had been put back on a high dose of steroids to try and calm things down before starting Infliximab, and the prednisone messed with my mental state.
I didn’t expect the awareness raising to take off like it did, and before I knew it, I found myself immersed in the online IBD community. I “met” people with ostomies all over the world, that were proud of them, and grateful for them, and I started to think that maybe that meant I could do it too.
My referral, which was in July 2014, led to strictures being identified that I needed to be admitted for surgery for straight away. I was told I may wake up with a stoma, and I might not. We would just have to wait and see. Either way, I was relieved. I’d started to wonder whether it was all in my head. I had been complaining of pain in my small intestine for the last two years at my usual hospital and got nowhere. Before I went in for the surgery, a week after I’d have the tests which identified the strictures, I’d been forced into using Butrans pain patches, along with Tramadol and Paracetamol, just so I could stand upright and make it to work. My pain had finally been explained, and even if I did wake up with a stoma, it would likely be reversed again as it was believed that the strictures had been causing most of my symptoms, and not the Pouchitis.
I woke up from surgery in the recovery room, and the first thing I did was reach down to feel my belly. Nothing – a massive relief washed over me! Then I remembered the surgeon had mentioned it could be on either side. I moved my hand over, and there it was! I will admit, as much as other people with ostomies had made me think “maybe, I can do this”, my initial thoughts were still very negative. I remembered the stoma before and I felt sick at the prospect of that being my life again.
Recovery was pretty easy after the initial post-op ileus, and this stoma was so much better than the first. Nowhere near as many leaks, and it was longer and angled so output plopped straight into the bag rather than sticking around to seep under the baseplate. I was pain-free again, for the first time in what seemed like forever. I finally understood why people were grateful for their stoma. I even considered not having a reversal, because I was in a place so much better than before.
I chose to go ahead and have my Jpouch reconnected because it would satisfy the “what if?” I at least knew that if I needed a permanent stoma later, (and I suspected I would), I’d be OK. It was a really good 4 months.
Not long after the Jpouch was reconnected, the Pouchitis returned. I had to go through all medication options again, even though I’d had them all before. The IBD team were treating it as though it was a new pouch because it had been disconnected for a while. As I’d expected, the outcome was the same, and I eventually reached the point I’d been at before the last surgery. I tried Infliximab but symptoms remained the same, and the decision was made to remove my Jpouch.
I had to wait to be referred back to my surgeon because I’d not seen him for over 6 months and I had been automatically discharged. The wait was long, and for the first few weeks after the decision had been made to remove the Jpouch, I’d been researching alternatives to a stoma, such as a Kpouch and even a medical trial for Pouchitis patients. Emotion came at me in waves, and sometimes it made me feel sick and other times it made me want to cry. A bag for life. My whole, entire life… Would I cope? Would my boyfriend cope?
By the time the appointment with the surgeon came, it had sunk in properly. I’d done my research, looked at and ordered samples of multiple bags and additional products, signed up for newsletters and asked for advice online about the few things that I’d had issues with in the past, as well as the upcoming Barbie butt surgery and recovery. I was ready, and I had accepted that a bag for life was the only option if I wanted to be sure that I had just one last surgery. I was so ready, that even when the surgeon suggested leaving the pouch in so that it could be connected at a later date if I wanted to try it, I refused straight away. There was no guarantee that the pouch wouldn’t stay or become inflamed/ulcered again. Leaving it there would mean still having to sit on the toilet to empty the mucous the intestine creates, and I just wasn’t willing to do that.
Surgery came in October 2018 and was pretty uneventful compared to previous surgeries and post-op complications. I returned home after 5 days and began the slow recovery. It took a fair few weeks, trialling different bags, products and angles to get it right, but zero leaks happened, and the one issue with burnt skin I had was rectified with convex bags really quickly. When my weight was low the bag felt prominent, and I was very aware of its existence, but after about 2 months when my weight returned to normal, I often forgot it was even there. It just became the way I poo now, and that’s literally it. I thought I’d have posted more about it in the name of awareness, but it barely crosses my mind because it feels so normal to have it.
Bag changes take no more than a few minutes, every other day after I’ve had a bag free shower, and I don’t take an emergency kit with me in case I need to change my bag when I'm out, because I am confident that I won’t have to.
My stoma enables me to be a lot more like the “normal” everyone else seems to be. I can eat pretty much anything and go out without having to second guess everything, have a plan for emergencies or get myself worked up in advance about whether I will end up in too much pain to act like I'm OK. I can go to the pub, drink alcohol and dance the night away, none of which I have been able to do in the last few years. I even find myself having a dance around the kitchen when a song I like comes on, just because I can!
I feel more like the me I should be with my stoma than I did without it, and in hindsight, I wish I hadn’t had the last one reversed.
Also, thanks to high waistbands being popular at the moment, I can just pick up any normal jeans in a shop and wear them with whatever top I want without a thought. I purchased loads of ostomy underwear before surgery but I barely ever wear it. I’m not even fussed if people see my bag through my clothes on occasion because everyone knows it’s there anyway, and those that don’t can ask about it if they want to.
It is what it is, and I am what I am – and it’s just how I poo now. *shrugs*
I’ve never really felt any emotion about actually needing to have surgery. To me, it’s one of those things that has to be done, so it's going to be. I don’t feel scared, or worried, or upset, or anxious. I just want it done so I can carry on with life. That said, there are emotions about other things relating to surgery.
Even my first surgery, which was an emergency just one week after being diagnosed with UC and admitted via A&E, didn’t worry me. I didn’t even know what an ostomy bag looked like at that point, but the pain being gone was the ONLY thing I thought about. I’d never had more than a cold, and in the few weeks prior I had felt pain that I couldn’t even have imagined was possible before that.
I did have some emotion about Jpouch surgery, but that wasn’t directly related to the actual surgery, but because of its affect on my fertility. I was extremely upset for a time and felt like not being able to conceive naturally made me worthless, because scientifically speaking, the only reason men and women exist separately in nature, is to procreate. My purpose on earth was to carry a child, and without that capability, I had no purpose. Counselling eventually fixed me, so here I am, with a new purpose – to help others through their IBD journeys.
3 of my surgeries were planned and 3 I found out about just a few days in advance. I need organisation and a plan, or I feel out of control, and I hate feeling like that. My thoughts are always focused on what I need to organise, save and buy, so that nothing is left for others to sort, and so that I do not have to depend on other people or worry about things not getting done, or not getting done properly (by properly, I obviously mean the way I would have done them). It is the way I approach everything in my life. I just get on with things, because the alternative is NOT getting on with things, and that’s not really an alternative at all.
I actually don’t like the fact that I don’t have any emotion about upcoming surgeries. It means 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 normal to be anxious, worried, and even scared about it.
Unfortunately, I don’t make it through the entire surgery journey without any emotion. After the surgery is a nightmare, and I avoid contact with people as much as possible for the first few weeks because I am generally irritated and not willing to deal with anything, including people and conversations.
I’ve made it through surgery with no post-op complications only once, so things like not being allowed to eat and needing an NG tube to prevent straining my stomach while vomiting is a source of great anger and frustration.
When I get home, I don’t cope well with feeling useless or accepting help, so I get incredibly impatient and frustrated, and often cry a lot. I just have to keep reminding myself that this will be over before I know it. It is a temporary nuisance which will reap many benefits long-term.
Then, it IS over, and I’m recovered, and I finally feel relief!
I have come to the realisation whilst writing this, that I actually DO have emotion about this surgery, and that emotion is excitement!
I saw my surgeon last month to arrange the excision of my Jpouch, so I thought now would be a good time to talk about the procedure and explain the possible complications.
As always, I had already done some research online. I’m not new to researching on the world wide web, so when I look things up, I use credible sources and not forum posts or blogs, so I know I am getting facts and not opinion. Don't get me wrong, I appreciate the experiences of others, but if I want that then I’d ask in the #IBDSuperHeroes Facebook group, and what I wanted at this point was facts.
I went armed with my notebook, as is always the case when I have questions, OR when I know I’ll be told more than one thing, because fatigue plays havoc with my brain and I can’t trust it to retain all of the information!
The surgeon felt the need to reiterate, multiple times, that this will be another big operation. I know this. I did not enter the consultation room wearing rose-tinted spectacles. I have been unfortunate enough in the past to have had a shit surgeon and a myriad of post-op complications. I am under no illusion. I know that the surgery and recovery will be difficult, and that I will be frustrated, unhappy, upset and angry during my hospital stay. I am also aware though, that I am going to feel pretty damn good in comparison to now, in the long run!
I made the decision to have the Jpouch removed, and everything below it removed also. In the IBD community, this surgery is often referred to as a "Barbie butt". The actual term for the surgery is proctectomy, and this involves removing everything on the inside and the anus itself. The skin which was around the anus is then sewn together. The intestine which once joined the Jpouch at the top is instead brought through the abdomen to form a new stoma. This stoma (ileostomy) will be permanent.
I was pretty clear about everything by the time I went to see him, but I think it's always worth asking your surgeon questions, even if it is just to 100% confirm what you already know.
My surgeon has performed 50 Jpouch excisions. Very few of these have had long-term complications.
The expected duration of the surgery is 5 hours. 2 of those hours account for the time it takes to put me under general anaesthetic (apparently, I don’t go out easily, "It’s like knocking out a horse"), and the time I'll be in recovery (I don't like waking up either). It doesn't matter to me how long it takes because I'll be asleep and unaware of what's happening to my limp body, but, it matters to my mum, who needs an expected wait time so that she can promptly start worrying when it’s 5 minutes past the expected ESTIMATED time, and I'm not in recovery yet. In all honesty, had she not been there, I would likely have added a few additional hours on to that estimation to save her the panic, because I am yet to have a big surgery which didn't take a lot longer than what was estimated!
I will be offered an epidural, which I will politely decline. I have had an epidural on two separate occasions in the past, and these have done more harm than good.
I will wake up from surgery with a catheter, a side drain and a PCA to administer pain relief. There will be a dressing over where the midline incision was made, which will have been glued back together because the surgeon does not like staples. I will have a brand new stoma on the left of my abdomen (not the usual side for an ileostomy, I know) which will be covered with a large, transparent ostomy bag so that we can easily see what's happening inside. Of course, there will also be a very sore backside, where my Jpouch, anal canal and actual butt hole once resided.
The expected hospital stay is 5-10 days. It’s impossible to accurately estimate when you’ve no idea if there’ll be any post-op complications, so I try not to let the estimate be an expectation. This also goes for the recovery time of 8 weeks, before returning to normal duties.
As usual with any bowel surgery, the post-op diet should be high protein (good for healing), and low fibre.
Perennial wounds are notorious for not healing well and infections, and there is an additional risk of the Jpouch excision resulting in short bowel syndrome (SBS) because of the loss of more intestine, which could mean needing TPN in the worst case scenario.
If we focused on what the worst possible outcome could be every time we made a decision, we would never do anything. The focus has to be the end result I am aiming for - my life back, free of pain.
I am excited. The last time I actually felt well was 4 years ago when I had a temporary ileostomy for 5 months because my Jpouch got torn when I was having my intestine untwisted and an abscess removed. The upcoming surgery marks a new beginning for me. A life free of the haze of painkillers, and me finally being able to press UNpause.