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!


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

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