Gas and Bloating II

I’m revisiting this post as some excellent advice was passed on to me and I need to share it with you. When I was in hospital I had most of my Ileum removed which is the best part of your bowels. It is the end of your small bowel that joins to your large bowel.  It’s main function is absorbing gas and foul smells that come from eating delicious food. Now I don’t have that bit, need I say more? It is extremely embarrassing. Last year before I had heard of these tablets I used to cancel plans because not only was I embarrassed but I had no control of what was being let out, as i’d just had my reversal surgery.

I mentioned it to a few nurses when I was going for check ups and we had a good joke about it, you have to have a sense of humour, but no advice was really thrown my way. Until I had spoken to my IBD nurse who told me to start taking some form of probiotic tablets from herbal shops, they should control the smell. To help with the actual gas, I should start taking activated charcoal tablets. These are designed to absorb the gas but they need to be taken for a period of time to build up until you can see a difference. I saw a difference after about a week and can definitely tell when I run out and get delayed on buying the next lot. They aren’t expensive, you could probably bulk buy for cheaper. I just wait for vouchers and discount days!

I hope this helps those who were searching for a solution to a common problem like this, especially in the IBD world. If anyone has other tried and tested ideas i would love to hear them as i’m always open to trying something if it’s worked for someone else!

Jess x

Thank (insert higher power figure/s) for… Infliximab

Last time I wrote anything on my blog I had just visited my Gastroenterologist and he had prescribed me Prednisolone for the short term. At the time I didn’t really have any idea what was going on. As readers will already know, doctors sometimes are a bit vague and until you start asking the right direct questions, you will be kept in the dark. That was my experience. So I took it upon myself to write down exactly what I wanted to say. When I’m driving to the hospital I’ll go over the questions in my head but I know that when they call my name I will forget them all. I now have a brand new note book, (thanks Santa, aka Mum) which is full of little scribbles. I also jot down any symptoms I’m having and a general bowel movement note, because… why not!

What I found out from that meeting, was that I would need to have a MRI scan and a Colonoscopy. The results returned and from the scan and they could see no blockages, but they could see that 10cm of bowel was diseased. I managed to get out of that Colonoscopy as well, win!  I was told that after having an ileostomy reversal you are about 90% more likely to have reoccurring disease in that area, so it wasn’t a surprise for the doctors, but it was for me. Since my reversal I had been in a constant flare up, I had just coped well until October and those two weeks had knocked me flat. This definitely wasn’t the news I was hoping for.

After taking the steroids for 12 weeks I had an appointment with my Specialist Nurse, who I have a good relationship with. I laid it all down to her that I felt I had no idea what was going on. I wanted to know what my future was and what medication was next, because I definitely knew I wasn’t staying on steroids forever. She explained it as rungs on a ladder; first, they tried Pantesa, next Mercaptapurine, then Steroids. My next choice of poison was going to be either Infliximab (Remsima) or Humira. I have heard of these from the many IBD accounts on Instagram I follow. I was told to read the leaflets and stick to reputable websites when researching, for the obvious reasons.  I chose Infliximab in the end. The idea of going to the hospital every 8 weeks is fine with me, but I know injecting yourself can get very tedious after a while.

I have now had my second infusion and from the morning I woke up after it, I have felt better, still slightly fatigued, but I can’t believe the change.  Over Christmas where most gain a few pounds, I managed to lose 8. My rings didn’t fit my fingers anymore and my jeans were hanging off.  I was definitely shocked the day they weighed me for my first infusion. After the second one I had gained 2lb! I know what you’re thinking, ‘I shit 2lb’ but to me this was amazing progress. The struggle is real!

The only side effects I have noticed from the Infliximab, is especially the day after I have it, is a dull headache. I NEVER get headaches but these generally go with Paracetamol. Steroids always give me a rash on my face, so that has now made a sneaky return. Over all though, this treatment is a bit of a god send for me right now. So I’m very excited to get my life back and enjoy this remission, however long it lasts.

I’m Baaaaack

I haven’t been around these past few months and it has taken a reader (hi Sam) reaching out me to make me reaffirm the reasons why I started this blog in the first place. It was made to help people who are going through something similar, to not feel like they are on their own like I did, as having Crohn’s or Colitis can feel that way sometimes. The symptoms we experience can leave us very isolated even when surround by friends and family. Although doctors, nurses and charities like CCUK have the resources and means to support us, we can sometimes feel like we would be burdensome if we were to reach out to them,  and therefore look to other means of support from each other in this online community. I’m glad that we have this platform to communicate because 10, 20 years ago, we didn’t, look how far we have come. People can share their experiences freely knowing that the community is behind them and to show their support in their IBD journey.  I am so grateful to be part of it and promise now to carry on what I started.

Jess x

Flare ups and Prednisolone

Since my stoma reversal I have been hell bent on getting myself fit, so a few months ago I joined the local leisure centre, 2-3 times a week you’ll find me there attempting to swim like an agile Olympian. It did take me a few sessions to get into the rhythm of it and now you’ll see me doing lap after lap with some sort of ease and hopefully a little grace. I felt great and very pleased with myself for how quickly I was building muscle and strength through swimming and yoga practice at home. Bowel movements were averaging around 4 times a day, still diarrhoea and  still couldn’t tolerate certain things like skins on any vegetables or raw onions. I was generally pleased with the progress that I had made.

One night whilst in bed asleep I woke up to the feeling that I was about to throw up, so I ran to the bathroom and my mouth just filled with water and I had intense stomach cramps. I wasn’t sick, but I knew this feeling all too well. This was my daily routine before all the surgery. This carried on for a few more days and in my naivety I just carried on hoping the feeling would pass. I knew I had an appointment at the hospital in a few weeks and I could hold on till then. A few more days passed and the stomach pain began to affect my appetite, I couldn’t face up to a meal where before I would be constantly grazing and gorging!

My energy levels had depleted significantly to the point I’d drag myself out of bed onto the couch and stay there all day. I didn’t leave the house for 3 days. BM had reduced significantly and the cramps were happening regularly. This was definitley a flare up and me ignoring it wasn’t helping anything, so I had no choice and rang the hospital and was able to be seen the very next day by one of the Gastro doctors. At first he tried to tell me that it was the Loperamide that was making me feel sick and bunging me up too much. I know Doctors know more than me, but this is my body and there was no way I was walking out of his office with no medication or future investigations pending.  He eventually prescribed me a course of Prednisolone. This is type of steroid that is generally used in the short term. The list of side effects is as long as your arm and you have to take Calcium with them as you are at risk of Osteoporosis. I take 6 tablets after breakfast for 5 weeks and then reduce the tablets by 1 every week after that.

Within a week of taking the tablets I had my first formed bowel movement. I literally ran into the bedroom to tell my partner as this hadn’t happened for me since I was in my teens! This continued for a whole week, my energy and appetite returned and I was back on my feet and getting back to normal. I was meant to be taking a trip to see my Dad in Bulgaria and because I was so much better I decided to go. Whilst over there I ate fresh crunchy delicious vegetables and so much cheese soft cheese. I drank only bottled water (see my post about Travelling with an Ostomy if you are worreid or anxious about taking a trip.) I couldn’t believe the change in how I was handling food. Now I’m 5 weeks into taking Prednisolone and I feel good but my skin is aweful, no matter how much I scrub and facial those pours just block up again. I’ve also acquired sore red skin around the sides of my nose but by the look of the information leaflet this is the least of my worries. I just make sure I exfoliate and put plenty of coconut oil on morning and night.

I’ve also started a food diary, since this regular healthy bowel movement is new to me, I can monitor the changes more effectively. I ecourage you to make one as well and you will soon see patterns and be able to see exactly what you can tolerate, what’s gives you heartburn, Acid reflux, cramps, diarrhoea, ALL the good stuff.

 

Travelling abroad with an Ostomy

Last year when I had my ileostomy I took a trip to the Canary Islands to enjoy a bit of sea, sun and of course FOOD. Having an Ostomy should not stop you travelling abroad, all you need to do is be organised and be prepared for all eventualities.

1- Supplies– It may seem an obvious one but make sure you get your supplies ordered early and with extras. It’s stressful leaving everything to the last-minute so at least 2-3 weeks before the holiday get your bags, sprays, extenders in, as sometimes they don’t have what you need in stock and you might have to wait a week or more for them to arrive.

2- Medication Count your pills, work out how many you need for the week/s and get those prescriptions in early. Some countries require you to have a letter from the doctor explaining that these are your personal medication, that is if you are having to take a large amount overseas.

3- Packing- Pack enough bags in your suitcase for the trip and times it by 2, I managed to ruin bags whilst trying to change them and one splash of liquid on that seal with render that bag useless. Like I said, prepare for all eventualities. Also think about how often you are swimming and sweating, these both can cause leaks, therefore more bag changes.

4- Hand luggage– It’s never happened to me, yet; but loosing your main suitcase with all your bag supplies in it would be horrendous! I put a full weeks worth in my hand luggage and make sure to keep your medication with you at all times. We are lucky in that most Ostomy products come at or under the 100ml mark allowed for flights in the UK.

5- 45 mins in the pool or the sea is long enough to make your bag become loose so try not to exceed this time.

6- Food-  All inclusive lovers must still be careful about what you are eating, if it looks like its been sitting out for a while, i’d avoid it. Restaurants in popular tourist areas will generally speaking be clean and safe, but although that food van selling kebabs looks appetizing after a few margaritas, remember it’s not worth the illness that could follow so just be aware. I went to Bulgaria not that long ago and was absolutely fine and they are not known for their cleanliness or for their safe mains water in which they wash food/ hands with.

7 – Drink plenty of WATER– Becoming dehydrated is dangerous when mixed with the blazing sun so make sure you buy plenty of bottled water. Try and stay away from alcohol during the day and if you are drinking at night, have water in between a few drinks, especially if you are partial to a cocktail or too with ‘Spanish measures’. Coke, Pepsi, Coffee and Tea will not hydrate you so if you want something fizzy go for a lemonade, if you don’t want water try orange juice but remember this can increase your output. Ask for decaffeinated tea or coffee if you really want something hot in the morning.

8- Snacks – Keep snacks in your bag, cereal bars or a piece of fruit as you should still be eating small but often even if you have set meals times.

9- Trips – When booking trips be mindful of the toilet situation; how far is it between rest stops? Are there facilities on the boat? Don’t be shy to ask your travel agent. Before getting on the coach try to eat a few hours earlier so your output is less for the ride. On the way from the airport to the hotel, I nearly didn’t make it, sitting there with my bag 3/4 full and rising. It was stressful, so try to avoid drinking and eating a lot.

10- Health Insurance – buy it! No ifs no buts. If you’re only going for a few weeks then it’s dirt cheap anyway especially now we have comparison websites. It will ask you for pre existing medical conditions and Crohn’s and Colitis is on there as well as a list of ostomies. Make sure you tell them everything because they love a reason not to pay out.

11- EHIC card – if you don’t already have one you can apply for one online.

“An EHIC will enable you to access state-provided healthcare in European Economic Area (EEA) countries and Switzerland at a reduced cost, or sometimes for free. It will cover your treatment until you return to the UK.”

12- Be Confident – I took a range of swimwear from full swimsuit to itsy bitsy bikini. When I was walking down the beach or around the pool people did look but it’s only because they are curious. I found if I wore my full swimsuit it did make me feel more confident in the water because of the added support pressing against the bag. I mostly wore my bikini though, you get a nice bag shaped white patch, which takes a few holidays to even out once it’s reversed!

Fissures

As I lay in bed with a scolding hot water bottle on my bum, I found myself frantically searching for remedies online to try to ease this sharp pain I could feel every time I went to the toilet. It would then be followed by an extreme stinging pain, that is so strong, it feels like the wind has been taken out of me. The information I found was not helpful I’m going to be honest, offering home remedies such as coconut oil, (my favourite thing in the world here’s why) to hemorrhoid cream to numb the pain. After putting up with the pain for a good few weeks (why do I never follow my own advice?) I finally rang the colorectal nurses and I was seen that very afternoon. My consultant did an examination, yes this does mean him putting his gloved finger up there, it can be quite painful if you have an already sore bottom. He did confirm I had an Anal Fissure. So I thought I would write a little information sheet on what a Fissure is and the treatment I received.

An anal fissure is a tear or ulcer that develops in the anal canal, the symptoms are pretty much what I described as well as blood in the toilet, ranging from tissue stained to drips in the bowl.

They can be caused by;

Mostly, when constipated

On occasion it can happen with persistent diarrhea

Inflammatory Bowel Diseases (aren’t we the lucky ones)

Pregnancy and Childbirth

and some cases the cause cannot be identified.

There is some self-help information on the NHS website which recommend you trying to relieve constipation; by increasing your fiber intake, drinking plenty of water, trying and get some exercise and if you need the toilet, GO! Try to stay away from wet wipes that contain alcohol or are fragranced if you are a lover of being sparkly clean. These can just be an irritation.

In my case it was caused by going to the toilet too much, since my bowel was working over time, having BMs up to 10-12 times a day. They increased my loperamide to try to control it and then treated the fissure with prescription cream, Glyceryl Trinitrate. The cream is designed to increase the blood flow to the sphincter and help heal the fissure.

Other Medications are;

Laxatives (if you are constipated)

Topical Aesthetics

Calcium Channel Blockers

If the symptoms can not be treated successfully, your consultant should offer you other alternatives.

Gas & Bloating

I am now just over 4 weeks post ileostomy reversal and things are going ok. I’m handling food but staying within the low residue diet, my scar has healed nicely on the outside; I’m not in any pain and I’m only using the toilet 3-4 times a day, my bum screams ‘hallelujah’! The only big problem is in the afternoons my stomach seems to inflate like a balloon and I have the worse gas I’ve ever experienced. This problem has forced me to use the internet as a resource. I don’t really like doing this for some things just because of the accuracy of the information you are receiving, but for things like herbal remedies, there is a plethora of information at your fingertips.

The first thing I tried was peppermint tea; most of us within the IBD world have used this remedy one time or another. You can buy it from any food retailer. After drinking this all afternoon I concluded that in my case right now, it doesn’t work well enough. (Also chamomile, ginger and lemon tea are supposed to help)

A family friend passed on some wisdom about chewing Fennel Seeds. After a little research I saw that this was an old age remedy and you can crush the seeds in a pestle and mortar and spoon this into boiling water to drink, (see photo above) the oil is what helps, so drink it as soon as you can without burning your mouth. I tried this technique for 3 days and it definitely helped in getting the gas out, but the uncomfortable bloating and has pain was still there.

I felt like I needed to talk to a professional so I contacted one of the colorectal nurses at the hospital. The bloating is in fact normal after an operation like this; see it as your bowel having a bit of a hissy fit for having to get back to work after a 12 month sabbatical. It’s going to take a long time to get back into the swing of things!

The outcome of that conversation was to take over the counter wind tablets, Windeeze or that equivalent and also take a Probiotics drink or yoghurt which I already do. I tried the tablets for a few days, taking the highest dosage when I needed them and they do something for sure, but not enough.

The next thing was to try exercising, this should help make my bowel move and help with digestion, the trouble is trying to get off the settee when you just want to curl up and be miserable. Yesterday I managed to drag myself off the sofa and onto my yoga mat for the first time since the op. It was just after my 4th small meal so I can already feel the food stacking up. This is my now number 1 remedy. My stomach didn’t fill up like before, I could walk with a straight back, I didn’t experience stomach pains or ache, it was a big relief (literally) to find something that works.

If you are new to yoga, or just don’t fancy all that, there are some simple positions you can lie in which will help relieve the pain and bloating. Give them a search and you will generally see the same ones crop up, reclined twist, cat-cow, knees to chest; I even do them whilst watching TV or whilst I am in bed!

I hope some of these remedies work for you and if you have your own tips please feel free share below! X

Goodbye Stoma

I have had a good while off writing and that’s because I’ve just had my ileostomy reversed! 2 weeks ago I went in, I spent 8 of 10 days in hospital and if I’m honest, I found it really tough.

In morning I was up early, drank the powder I was told too, took my meds for the last time and headed in. My surgery was brought forward so instead of waiting till lunch, I was now first up to the block. A nurse came into the waiting room and called my name. Without a thought I burst into tears. My Mum was telling me ‘you’ll be fine, you’ll go to sleep and then wake up and we’ll be there’.

Once I was through the double doors I wiped my face and took some long deep breaths. After I changed into a gown, two IBD Nurses came in and told me they were here to mark an X on my tummy in marker. I had never discussed the possibility of having another stoma put in; it was for ‘just in case’. After they left I was seen by my anesthetist, doctors and finally my own registrar. I then signed my life away I was taken into a sealed room ready for my epidural to be put in and my big fear, being put to sleep. The epidural I suppose wasn’t as bad as I thought; it’s just not natural is it! Of course, my body would be awkward; I overheard that there wasn’t much room for them to put the tube in, which resulted in an awful lot of poking and pushing. After an uncomfortable time in a crouch position, I was bandaged up and then I could finally lie down and be put to sleep.

Once I awoke I was greeted with happy smiles and good news. The surgery had taken only 6 or the 10 hours expected and my bowel was in fact remarkably healthy. I was on the ERAS (enhanced recovery after surgery) so the day after the physiotherapist came to see me and had me up walking around the high dependency ward. I was pain free and feeling pretty positive, it’s amazing what strong painkillers can do to your spirit!

The 3rd day in there after not much sleep at all I realised that I couldn’t lift one of my knees. The other one was fine but I was really struggling lifting the left. They decided to turn my epidural off and just keep me on a PCA machine (a button you press every 5 minutes for strong pain relief). I only knew the epidural was wearing off because I was experiencing intense tingles head to toe. The other sensation I felt was that someone, very large was sat on my chest, pinning me to the bed. I spoke to someone from the pain team but she assured me it can happen sometimes if it’s working too well. It did eventually pass after a few hours.

The next day I was then moved down to a gastro ward, so everyone in there either had a stoma, was having one reversed, or something similar. The days on the ward I found hard, as I’m sure many do when coming down from intensive care or HD; it feels like a massive step down, with only a few nurses to 20+ patients instead of 1:1 or 1:2. But if you are on a ward, it’s only because you’re well enough to be there.

Through the day, nurses and doctors came round to ask ‘how many times have you opened your bowels,’ to which I always replied, ‘I lost count.’ I must have been going to toilet every 20 minutes. It slowed through the night but I was up every hour, catheter and drip stand in hand, sheer panic on my face, running to the toilet. You have to laugh. I’m not going to lie either, I missed my stoma, my reliable, cute as a button stoma. But I bet most people do in those first few days, change can be hard. 

I came home on day 8, weak from not eating for 6 days but so happy to be out. It’s funny you don’t appreciate the colour of the outside, must be because you’re looking at grey/ white walls 24/7. Everything on the car ride home looked so vibrant and I think you appreciate everything in those first few days. I made it home fine, no accidents and now it’s just rest for 6 weeks. No lifting, housework, I can do gentle yoga and swimming but I’m only allowed to eat low residue foods. That’s anything white, pasta, bread, potatoes, nothing interesting at all; I can’t wait for a curry.

Pre Op

I had my Pre Op this week getting ready for my reversal surgery and I thought I’d go through some of it I remember for the few of you who haven’t had one before. Going into hospitals can be daunting so this should hopefully help because you will know what to expect. The first person I spoke with was a Pre Op nurse. She took me into a side room and asked questions about my medical history, allergies, whether I smoke, have diabetes or heart problems. I was told the run down of the day of surgery, when I need to stop eating and drinking and that I will spend my first few days in a High Dependency Unit. She also enquired if I was on contraception and whether I wanted a pregnancy test or not.

We chatted and I explained that I am frightened about having my reversal surgery. I’m not ashamed to say this, I am scared, and I told her some my story, of New Zealand, and specifically about when I was in intensive care about to be transferred to another hospital. I had to be sedated so the doctors could safely move me. During that time I had what the nurse called ‘awareness’. This is when you are aware of what is happening around you, you may hear voices but you cannot move or speak. Patients can also experience strange and frightening hallucinations that will feel very real. I didn’t experience this, but I did feel like I couldn’t move and I awoke in extreme pain due to being turned over on my side only a few days after my ileostomy surgery. This has had a major lasting effect on me physiologically and a year later I still get upset talking about it. The nurse did assure me that this is a common occurrence when patients have spent a long time in an ICU. She said that I needed to make an appointment to see the anesthetist and tell him about my worries and they should put my mind at ease.

Carrying on with the Pre Op, the next step is for your bloods to be taken by a nurse, and for women, perhaps a pregnancy test in which they will tell you the result straight away. They will also check your blood pressure.

Your next assessment is an ECG (the bit were they put those weird stickers on your body and attach little ‘pegs’) and these are linked to a computer, this will only take a few minutes of lying down still. The best part of the assessment!

Finally you will be asked to blow into a tube as hard as you can. A little wolf may be on screen simulating your breath and blowing the little piggies house down. I don’t think this will be the same for every hospital but it was in mine. It will show your lung capacity which will be put inside your assessment file and that should be the end of the appointment.

This was my Pre Op in a UK hospital so please note it may differ hospital to hospital or due to the type of surgery you are having. I just thought I’d give you a little overview of what to expect and maybe help ease any worries some of you may be having! This is the easy part, in a few weeks I will hopefully have my surgery date. I am very nervous, but a little excited at the fact I won’t have my bag anymore.

If any of you would like to share your experiences personally with myself, then please use my ‘Contact Form’ or by commenting on the blog. I’d love to know about your own reversal or stoma op or anything related really, just make sure you leave your email address on the contact form so I can get back to you! 🙂

 

 

Easy Peasy Wedges

I’ve been making these wedges since I worked in the kitchen at my Student Union at University. When I make them for my friends they are always surprised at how tasty, healthy and easy they are to make. You’ll never buy frozen chips again!

 Turn your oven on 180C to preheat. Chop your potatoes into segments and measure them in portions, I do 2-3 potatoes for 2 people, my portion size is on the larger side 😉

 Put the potatoes onto baking paper on a baking tray or equivalent. If you don’t have baking paper, go and get some because doing them on foil just isn’t worth it, they stick and you end up with little bits of foil on your lovely cooked chips.

 Next, cover the wedges with olive oil (not too much, they don’t want to be swimming in it) and then rub them all over with your hands. Next, pick your spices, get adventurous but remember to stay mindful of what you should avoid such as chilli. I use a piri piri in a salt grinder (Nandos salt is amazing too). If you don’t have these mix it up, oregano, salt, pepper, paprika. I love garlic salt on them! See what you like best and give them a rub down so they are all covered. Put them in for 30-40 minutes, half way through get a spatula and flip them over so they are evenly cooked and crispy.