Notts and Derby Ileostomy and Internal Pouch Association


Exciting times ahead.

I have joined the committee of the Notts & Derby Ileostomy Association. It is something that I have fancied doing for a few months now, I want to be able to help others by either helping fundraising of just be able to chat to new ostomates. The funny thing is I am now the young IA rep ( I know right? I must be the oldest Young IA rep ever). We meet every couple of months for a meal and a chat, courtesy of Helen who is our local Salts healthcare rep. ( Salts is a stoma appliance supplier among other healthcare things) we have a great evening checking out different pub foods and a glass of wine or beverage of your choice, in and around the Nottinghamshire area.

Everyone is lovely and were very welcoming at my first meeting. It was also agreed for me to take on the social media aspect, which I love anyway so it seemed the natural choice for me to offer.

The Notts & Derby branch also has regular meet ups for coffee and cake so if you are from these areas and would like to come along please have a look at our website for more information.  NOTTS AND DERBY IA

If you have twitter please follow @NottsDerbyIA and show your wonderful support.

We have a facebook page for young IA so please come and find us there at Young IA Notts and Derby.

You can join the association if you have an ileostomy or an internal pouch, but we also welcome anyone with any type of stoma, family members, friends and carers also welcome.

We joined in when Salts healthcare had a presentation of their new Confidence Be bags too, along with Colostomy UK. This was at an invitation event in Nottingham. I have decided to trial the confidence Be bags and so far they seem to work really well with some great new benefits.

Our AGM was well attended and we had lots of stoma suppliers present. Our new president, Mr Abercrombie,  gave a very informative speech about the approach to surgery being carried across the UK  – GIRFT ” Getting it right first time”, and the variations in patient care across those hospitals. It means that hopefully in the future, all patients from all hospitals will get the same high level of care no matter where you live. Which can only be a good thing.

If anyone would like more information about the Notts & Derby IA then please message me and I will be glad to help.

Coping with a stoma leak and why they can occur.


I have posted before about leaks, but never really mentioned why they happen and how best to deal with them. They are the number one cause for sore skin and as you can see from my photo I manage my peristomal skin fairly well, but am still prone to leaking at times.

This is probably the worst thing about living with a stoma, it brings it home to you that you are actually incontinent.

I am one of the luckier ones as I seem to leak about once a month, others can be every day. There can be a few reasons why this happens.

Creases in the skin – this can cause issues with getting the base plate to stick because the surface isn’t totally flat. I would suggest using a seal ring to help fill the gaps around the stoma, this is where the leaks will be from. Using a strong tape or duct tape at the point where leaks usually happen can help if you are going out too. If you can stretch the skin as much as possible, either by hand or lying flatter, this could flatten out the creases a bit. You can also use paste which can fill in any dips or separated stitches, this will also help keep the bag flatter. With all these issues, once the bag is on, press gently around the bag/ base plate and maybe even keep your hand on top with medium pressure to soften the adhesive with heat for a couple of minutes. I have also read that there was a trail in America at the Salford Royal hospital and a selection of patients who had uneven skin were given some types of collagen injections as fillers around the peristomal skin area , and the results seemed pretty good. I hope this may be offered more readily if the trials were approved.

Wet or moist skin – this is common if the skin is sore as it produces weeping so needs to be as dry as possible. I tend to air my stoma for ages if I have a sore patch, this helps to dry the skin out ,applying a bit of stoma powder ( notice I said a bit, because this can stop sticking too). Have plenty of tissues to hand to mop up spills and you could be there a good hour which would be amazing for the skin.

Wrong hole size – It is hard sometimes to cut the bag to the right size. especially if you have an odd shaped stoma or other complications. ( I have a fistula right at the base of mine which leaks poo as well as the usual way). I prefer to cut my own because of the issues I have, but again I use a seal around the stoma first, this helps because if the hole is cut slightly larger it won’t matter so much because the seal is there. You can ask the stoma suppliers to pre cut the hole size too if you want to. As you can see from the first image, my base is cut slightly bigger but the seal stops my skin being sore. The seal then swells when it gets wet and fills the gaps.


Ballooning –  This is my reason for leaks, there is nothing I can do to prevent ballooning because I can’t pinpoint what foods cause it. Mine always leaks from the base on the right hand side as I look at it. I know that when I sleep on my left and then the stoma balloons this can cause my leaks, the pressure from dragging the bag to the side. There are various flange extenders / tape that can help secure the base plate.


A stoma that is flush to the skin or below skin level – As you can imagine this could cause very sore skin if the output comes under the wafer. A convex bag is often the thing that will help, because it dips down in the centre to fit snuggly against the skin instead of raised to let output seep under. I didn’t realise that stomas could be flush as mine is protruding so I don’t have the same issues as these ostomates. Occasionally it can retract over time so it is a case of getting used to a new way of applying the bag again.


Using the crusting technique – So many people have asked about this technique or what it even means, so I have written an example.

Firstly you will need stoma powder, alcohol free barrier wipes or spray and some tissue or soft gauze to wipe away excess powder.

Sprinkle the powder over the weeping/ sore skin, leave for a minute then lightly brush away excess powder. The powder will stay on the affected area and any excess will come away.

Dab the barrier wipe or spray lightly onto the powdered area. Leave to dry for a few moments.

Repeat a few times, then test the area with the tip of your finger, you should feel that the area had hardened. This has formed a crust / scab that is exactly what you want. You can then apply the wafer or seal as the area is now dry.




What does it actually mean to lose your large bowel?

I wanted to know what it actually meant for me to not have a large bowel. What system functions would change? What don’t I absorb now? Does this really mean that I am cured of the manifestations of ulcerative colitis?

I thought having a total colectomy would mean that I don’t need to take medications anymore, this to some degree is true, I take meds but not the hardcore meds I took before surgery. The azathioprine was the biggest relief to come off as this was a dangerous pill that could cause more problems than the ulcerative colitis if not monitored regularly. You could get liver damage, cancer and blood issues, I needed monthly blood work that often ended up with me having to reduce the dose. Steroids are another bad boy of the IBD world ( not the steroids used for muscle building I might add, Arnie I was not). This pill used to cause ” moon face”.  In other words you would look like Hammy the hamster for months on end. I have found a picture of me from the year dot, with a moon face. Not very clear I am afraid, it was a proper camera or nothing in those days.

Now I am on Loperamide ( imodium) as my digestion is much quicker from mouth to stoma and this helps to thicken the output. Originally I was on eight a day, but as time has gone by I manage to control things with my food intake, and am down to two a day. Salt is absorbed by the large bowel so I don’t need to cut down on that at all, in fact I can use this to my advantage if I fancy scoffing salty crisps, ” But I need it now I don’t absorb it”

Annoyingly I have borderline iron deficiency, so I am on iron tablets, unfortunately this means my output after I have taken them in the morning, is black, and doesn’t seem to like being flushed away.

I have extremely low vitamin D which is possibly because I had a year of ill health and being in bed mostly, then surgery and in hospital for 3 months, then recovery. I have to take a high supplement of two capsules once a week for a month, then more bloods to see how it has improved. I did hear something about Vitamin D being absorbed from the skin through to the end of the small bowel, not sure how true this is but it could explain why many of my fellow ostomates are vitamin D deficient too.

The large bowel absorbs water from foods back into the body, which means I need to drink plenty throughout the day or I could become dehydrated very easily. This is a continual fight because it is difficult to drink large amounts all day long, especially if you are at work, but I am managing it well so far.

I can if I am not careful, get blockages of the stoma output because some foods are fibrous and clog together to prevent things passing through the stoma. Luckily I haven’t felt the full force of a blockage, just some mini ones where my output is like water and never ending but eventually recovers itself.

Does surgery really cure UC? I believe there is no medical cure so therefore surgery to remove the affected bowel and rectum does cure you of the bowel issues, there are other manifestations that some medical professionals and patients believe are still left such as painful joints and skin issues, I would agree with those people and also say that if Crohns disease can affect other parts of the body then colitis can too. They are both digestive diseases that can and do cause other problems, but I will also admit that removing what is diseased can improve other issues which would probably be worse due to the inflammation in the gut. This inflammation would cause systemic disturbances elsewhere in the body i.e temperature, tachacardia weight loss, vomiting, losing blood, to name a few. But, another theory is that most patients who have a J pouch often get pouchitis, is this ulcerative colitis that has affected the new pouch ( which is, incidentally, made from the small bowel) hmmm food for thought…..maybe Crohns disease and ulcerative colitis are even more alike than first thought. I was diagnosed as indeterminate colitis, which means they were not sure which disease I actually had, and was diagnosed with Crohns then colitis and back again many times.

All I know is, I am certainly much better having had the large bowel, rectum, and anus removed, but there have been trade offs.

( my new tat, which I love, it is everything about my surgery and how I feel, with a nod to Crohns & colitis UK with the purple centre)




J-Pouch ( Also called IPAA- internal pouch-anal anastomosis)

This sounds very grand, and that is because it really is an amazing innovation for many people who needed to have stoma surgery but also may be able to have a reversal. It was first performed here in the UK in the 1970’s.

I unfortunately am not one of those people who can have a reversal. This is because my rectum and anus were severely damaged by the colitis and needed to be removed,( so much so that I couldn’t have it removed when I had the original surgery as it wouldn’t have healed due to my poor nutritional state at the time) it wasn’t strong enough and healthy enough to be used again. As it happens the stitches, that were done to close the rectum off, burst causing rectal stump blowout and then sepsis, again due to me being very ill prior to surgery.

The procedure for reversal  is usually done around six months after an ileostomy give or take. Usually the whole colon and rectum have been removed and about 12 inches of small bowel is used to form a pouch very much like the old rectum , which is attached to the anus. While the pouch is healing the patient still has the stoma but the stoma is normally a loop stoma. ( Excuse the following dodgy sketches, but you get the idea). The loop usually has two holes instead of one because they cut the ileostomy at the top so when it bends the two tube openings are outside of the body.









As you can see from the diagram a loop ileostomy can be put back together again easily and tucked back inside.  An end ileostomy is totally cut and put through the skin.

After so many weeks a further operation is performed called the takedown, this involves the takedown of the ileostomy so that the internal pouch can start to work.

The name J-pouch is because the pouch looks like a J. 

The bit at the bottom is the anus.




For many people this procedure has been a godsend. Young adults who thought they may need a stoma forever can lead a near normal life. There are some issues that can occur, pouchitis is inflammation of the internal pouch which can make you very poorly, and can sometimes lead to more problems . Antibiotics are normally given and they can work well for most. But there are people who continue to have issues and are then offered surgery to get the stoma back. As you can imagine this is vey upsetting when you thought you had survived a very difficult surgery in order to get some normality back, and after all that stress of more major surgery you are back to where you were.

If all goes well then life can be good, with no stoma worries ,but it can still be a while before things are fully settled. You find you may need the toilet many times at first, even in the night, and wonder if you have done the right thing having the reversal in the first place. But after a while it settles down and the pouch starts to work like a rectum again.

Barium meal and enema


The dreaded Barium…………..

When I first started with ulcerative colitis I had to have many tests, and I remember having both of these. I had these as an inpatient but you may get a referral to go in for the test. This can be for all reasons from the throat down to the large bowel.

Let’s start with Barium meal. ( swallow, meal, follow through) It isn’t quite a meal but a thick revolting drink that you need to take and as the liquid travels through your digestive tract, intermittent pictures / x rays are taken to see if there are any strictures or abnormalities. I think I had to drink three drinks, two were just like paint and if you were feeling unwell to start with, you definitely would after taking them. The other one was a slightly different taste, and I think it was a mixture that would produce gas so that the bowel etc can be seen clearly, this was all about twenty years ago so it may be different now. It seemed to take a while because they didn’t take pictures for at least 20 mins to allow the mixture to travel down. When it comes out the other end it lays on the bottom of the toilet as it is that dense, it takes ages to go. You can’t eat for about six hours before this procedure. You may be asked to move into different positions to get the best images.

You may also need a muscle relaxant which is an injection into an already inserted cannula.

Barium enema next, ( lower GI exam ) good fun not. You have to have bowel prep for this one as it is for the large bowel only. You are then strapped to a bed and they insert a tube into your bottom ( I think they taped it your buttocks to stop you pushing it out). They then filled your large bowel with the Barium liquid, then the fun part. They give you an injection to relax your bowels then you are tipped all different ways on the bed to get the liquid all over. Very strange feeling not to mention the absolute urge to poo. I remember that being the worst bit, not being able to expel the tube and the stuff. You could feel the Barium going in too, anyone who has had to use the enemas for IBD will know how this feels and how difficult it is to keep in anything that is squirted up there.

When the solution has covered the inside of the colon, most of it is drained out, air is pumped in and x rays are taken. When they have finished, the tube is removed and you think you will poo that stuff all over as soon as you stand up. You don’t of course, and a short while after, you will probably go to the toilet and like the Barium meal, the horrible Barium stuff will linger in the bottom of the toilet for ages. Oh yes, and your poo might be white too.

Good luck

Past present and future for ostomates ?

I do miss my pre surgery tummy ( apart from the colitis bloating ). Being able to run my hands over my tummy without the bag always being there. Having baths and showers without that horrible cold wet bag touching my skin. Looking in the mirror and knowing it is ALWAYS going to be there.

I just think that in this day and age there should be something less…well …bag like ! I know there are a few futuristic things coming up that has like a reservoir behind the stoma and then you can have a cap fitted over it to empty when you like. But I have to say that the recovery period sounds scary and what if it doesn’t work? not sure about it at all, but as long as they keep inventing stuff then we are heading in the right direction. I don’t think there will be any alternatives to bags in my lifetime but hopefully in the not too distant future there will be a device invented.

I would think that the amount of bags we get through and the other things we need to keep our skin from becoming sore that there would be an alternative now. Yes they have come a short way from the early bags but they are still BAGS, crinkly unsightly bags. I remember seeing a camel on holiday with a bag strapped to its bum collecting poo. I still have the picture and seeing it now with new eyes it is sad to think we are no further forward than a camel.

I know that they used to have a sponge strapped to their stomas at one time, and even in this day and age there are people in the third world have empty bean tins strapped to them to collect their poo, what do they do at night? its horrific to think this happens in the here and now.

There were some unusual contraptions for collecting waste from a stoma back in the day. Salts healthcare have passed on some pictures of the changes over the years, many held in place by a thick belt.


As you can see from these, there has been some improvement but I still think there could be more. I know that around the 1700s many people didn’t survive the operation or became very unwell with infection and died, but people still to this day don’t always make it through because the surgery is very invasive and difficult, and many patients are so ill and malnourished before the surgery, which makes it even more of a risk. It is a risk that we had to take.

Please take a look at this link from a very informative site

They have a brilliant article on the history of a stoma and surgery etc, it really is an interesting read. The link takes you straight to that article. I was amazed by some of the things they did to form stomas, and how they had to care for them. I know I think we should be further along with stoma care and appliances I am so glad I didn’t need one in those times.

A look inside the bag- ( includes song performed and written by my daughter that represents my stoma journey)


Having a purpose – My life has changed dramatically these last two years, firstly having an awful flare of ulcerative colitis that left me in such a bad way I needed emergency surgery. That in turn left me with major complications that are still a nuisance today. But despite all the bad bad times, I can now say that I feel I have a purpose.

That purpose is to spread the information about IBD and stomas. I started with a free blog site that I tailor made for Tomas, and decided to be very candid about my experiences. I couldn’t see the point of just sugar coating it as that would not cut the mustard. I am very sure my friends and aquaintances were surprised and maybe even slightly grossed out at first, I know I was, but it is like having a phobia, the more exposure, the less of a problem it is. I am sure if a friend of mine decided to write a blog about her rectum and poo styles , I would be surprised yet intrigued at the same time.

I would honestly have thought that if you had said two years ago that I would be writing about my bowel and poo at every opportunity, AND including photos, I would have laughed in your face. Absurd.


After quite a few months writing the blog and getting the odd hit here and there , I decided to step it up a notch and blow the cobwebs from my purse and pay for a half decent site with the name of my choice I was very excited as this meant I could use videos and links. So as soon as I was up and running I decided to post a video of my stoma moving, I know, I know, my husband said ” surely you can  leave some things to the imagination ? “. But I knew this was what I needed to do. The traffic to my blog really began to grow, people made lovely comments and I felt I was making a difference. I won’t lie, it is a thrill when I get a lovely comment from someone going through a similar experience, but it is also disappointing not to get one on some posts, I don’t know if those particular posts are not as interesting or just that there is no need to comment. Either way, I will continue with my musings if only for that one person who needs it.

Oh and I am attending my first Ileostomy association meeting next week for Notts and Derby region, excited.

I am now nearly two years post ileostomy and I blog for my site, also for “A bigger life ” ( stoma information site run by TG Eakin, this is worth a look not just for my posts, although of course they are worth a peek too 🙂 ) I tweet, and have joined many forums and sites. Although I haven’t met the people on them they feel like new friends. We all have that one thing in common that helps us all accept who we are now. Life does have it’s ups and downs, make no mistake about that, but generally speaking my life is much better and I almost feel it was all a dream in the hospital ( until of course, my stoma farts or leaks, and I remember that  my tummy is no longer svelte and smooth). I may be one of lucky ones that have been able to overcome the fact that I have a permanent stoma, and use it for my help and the help of others who may not have such a great time. Every single one of us is different with different needs and different issues so the help and support will be there for those ( including myself at times) who needs it. ( sounds like Gryffindor’s sword is going to appear).

I would also like to add my daughter’s song which she wrote and performed as a present for me during the hard times. I am immensely proud and absolutely love the song, I hope you do too. I am having a tattoo to represent who I am now and the song is based on that. I know I am plugging this too 😉 but if you fancy having a look at more from her, please follow on youtube:


I will warn of stoma pictures etc, but I will not apologise for them. This is me, and this is my story warts ‘n all.

Christmas with a stoma

I hope you all had a good christmas with your stomas.

I thought I would write about christmas time with a stoma mainly because it is a very stressful time, lots of food and drink and general merriment, and I wanted to note the effects of all this on my stoma. Before my stoma I used to flare with the colitis at this time of year so found it interesting to see if things would cause different issues.

Certain christmassy foods can be known to have some unwanted effects, but I wanted to see for myself what eating sprouts and the like, and drinking various alcoholic beverages would do. I have had alcohol since surgery many times ( sounds awful lol) , I am a bit careful most of the time but at christmas I tended to drink more sherry and Baileys type drink which is all quite rich. I also used to like christmas pudding and cake, so that could also be good fun.


I had a few mince pies, I love them but do forget to chew well so let’s see how that goes. I am also having a few sherries. 😉 I am off work tomorrow but back in christmas eve and then boxing day ( I will be having a nice little run of days off between christmas and new year). I am also having a few wines tomorrow night in the local with friends.

It is now evening and the mince pies seem to have caused little to no damage so far. Yipee, I have lots more to eat and that must mean that christmas pudding is a goer too.


Woke up feeling ok, did have to empty the bag in the early hours but no change there. ( literally) I do notice that since surgery whenever I bend forward,the skin right near Tomas at the top stings and itches. No idea why, maybe it is being slightly squashed. We went out for a few drinks in the evening and I had two medium Rose wines, and I must admit even just two drinks makes me have a small hangover type feeling. I absolutely know that we all should make sure we are not dehydrated when we drink alcohol, and drink soft drinks in  between. I didn’t sleep particularly well either.


At work today (and we could wear our christmas jumpers.) Tomas behaved and all was well, ate fair bit of rubbish i.e chocolates and it didn’t seem to affect my output much. I took a small salad for lunch and I find I can now eat lettuce, cucumber ( I trim the green off) tomatoes ( I don’t eat the skin if I can help it, daren’t for now, but happy to peel it anyway). Had a large (very) sherry and it was lovely. Stoma fine, changed bag and aired Tomas for a good hour while sitting up on the bed. Skin looking good.


Woke up early, we had brown bread toast with scrambled eggs and smoked salmon ( this is one of our family traditions, gorgeous)

Ate lots of rubbish throughout morning. Managed to eat about 20 mint things that are similar to matchmakers.

Christmas dinner was lovely ( very lucky that my husband cooks ) I love Brussel sprouts and I can honestly say that they do not affect my stoma at all. I have to be careful with peas, and I tend to just have a handful but we didn’t have them today anyway. Broccoli and cauliflower are also ok. Had a glass of the red stuff and more sherry too. The things that I had a problem with was more output so emptying more because what goes in must come out, and I was a pig, and ballooning ( my bags are filling up with wind in the night and I wake up in the early hours to empty, I don’t like to leave it because this is when the bags can lift off a bit and cause leaking.


At work today and we had some nibbles. A colleague had brought in these lovely spicy vegetable spring rolls and I had a few.  I will not lie, I was a bit worried about how I might feel later on, but yet again all was good. I am either learning to eat slower and chew well or my stoma is settling in and coping better with different foods. In the early months of stoma life my output would get very very watery if I are something that didn’t break down enough, and I would feel off for that day. Those episodes are getting better and I don’t worry as much about what I eat. I have even eaten chicken skin without trauma, but I still won’t eat jacket potato skins and other tough skins. I would love some grapes but am nervous to eat them.

So all in all things were good, I did have a blip yesterday where the edges of my stoma were stinging and itching so badly I could hardly stand it and was very relieved to take off the bag and clean my skin. This happens to me quite a bit and I don’t know why, because when I clean it there is nothing to see.




More updates on perineal problems ( bottoms)



I went to see my surgeon this week about my bottom problems. I am now on the waiting list for further surgery to explore and excise the perineal sinus. He will take a biopsy to see why it bleeds out the sinus when I have my menstrual flow. It will be totally cleaned out and packed with antibiotic gauze like when I had the proctectomy. He is not using a plastic surgeon this time but if it returns he will do the larger operation.

Not sure how I feel about this, it is ok but the chances of it coming back are quite high so am I better off having the larger flap operation now rather than later? who knows? I will just have to see and hope that this clears it up and I can get back to some normality.

I have already signed the consent form so I know it has to be within the 18 week deadline for the NHS I just hope it is sooner than that. Not sure how much longer I can put up with the uncomfortable symptoms. Not to mention the cost of panty liners.

I think people are probably a bit bored with the ” having an operation ” thing when it is your third one in two years, it becomes nothing , but to me it is still a big deal having to go through it again. Because I look ok it is assumed that I am ok, but mentally I am going through a phase again. It must be because the operation is all set, I seem to have a mental wobble and my mind does overtime. I just want it all to be normal down there without worry of leaking and discomfort. I never knew when I had a proctectomy that this could happen, I assumed that when it was taken away, that would be it,  all better. But alas, this is so not the case for a lot of people. It wasn’t until I read about it that it is very common to get wound issues like sinuses and fistulas, and they are notoriously difficult to treat. This is ok but we have to work and live and to keep having time off puts us in the ” always off ill ” bracket, which I do not like being in.  Work are fine about it at the moment, but I am not.

I feel we are left for months while they figure out what to do with the sinus’s , and then wait more months for MRI’s, then wait some more months to see the surgeon again with the result, then wait some more months for the operation. It has now been a year since the proctectomy and just under a year since the sinus developed and I am only just on the list for more surgery. The government need to sort this out, get more money into the NHS because the waiting lists just to get back to see your own surgeon is ridiculous. I am struggling along after two major surgeries that have left me with a complication, and I am the one to suffer because it is not major surgery this time, so therefore not urgent enough to bother with.

The discomfort is tiring and horrible to live with for this length of time. I am being tested for fibromyalgia too as my body just feels so sore all the time, this is something that can develop after big surgeries apparently. My joints feel swollen and achy and I guess I just feel sorry for myself at the moment. This is not a great week.

Sorry that this is a very negative post this time, that is how I am feeling right now.

Next post on these issues will be the surgery itself, watch this space if you would like to know what they do, the recovery process and whether it actually does go away never to return. If fibromyalgia does enter into the equation I will also let you know.