Ostomy and J-pouch moms

Although I am not someone who had a stoma and then had children, my story is the other way around, but the reason I joined this lovely group was because I had IBD whilst being pregnant. I just thought it might help someone on there who was considering getting pregnant before surgery.

Ostomy and j-pouch moms is a fantastic group for anyone considering stoma or j-pouch surgery and having children. There is a lot of support on there with others who have experienced this, so are used to all the questions.

Tara started the group in Canada and here is her story….

I’m from Toronto, ON, Canada. I was initially diagnosed with UC at the age of 17. I gave my IBD the best fight I could, through prescribed medicine, natural medicine and diet. I eventually decided my best option for a life outside of the hospital and chronic illness was surgery to create an Ostomy. At the time of my decision, I was diagnosed with crohns and colitis. The pathology of my removed colon showed a definitive crohns diagnosis. Months later, I decided to make it permanent and had the Barbie butt surgery.

Life has been good with an Ostomy. For years I decided it was my personal business that I had an Ostomy. Only some friends and family knew about it. I worked, traveled, swam, danced and dated and married. I thought since I was doing so well, maybe I could help others that weren’t, so I went to an Ostomy Toronto meet up. It was at that first meeting that I met some amazing ostomates that became good friends. The more meeting and events I went to, I made more friends that had been through what I had been through. I never knew I needed them in my life. I also met a lot of amazing colonless peeps online. I decided to “come out of the bathroom”, and I made a public post about having an Ostomy. I started volunteering for Ostomy Toronto, I wrote regularly for the newsletter, spoke to nurses and became a proud advocate.

Years before my husband and I started trying to conceive, I was worried if it was even possible to become pregnant. I had a friend do a google search for me. She found an article that was short and basically said it was possible. Through Ostomy Canada Society, I also made friends with other Ostomy mothers and had them share their stories with me. I also spoke with a GI and some stoma nurses, who all confirmed it was possible. When my husband and I were ready to start a family, through a fertility doctor, we found out that I had scar tissue around my Fallopian tubes. Our doctor said our best chance of getting pregnant was IVF. Thankfully, the first try took. Our daughter is now 4.

When I was trying to get pregnant and when I became pregnant, there was no specific support group for women with ostomies. I asked around in various groups on Facebook. So many questions were left unanswered. At 8 weeks pregnant, I decided to start Ostomy and Jpouch Moms. I added all the women I had met that far, who were moms, ostomates and jpouchers.

HOW UTTERLY CUTE IS SHE?

It was so great to have these ladies at my fingertips. I also never thought it would grow as much as it did. I have also added 4 admins to help with adding members, deleting spam posts or overly negative(even bullying comments) and to help with posts that get members interaction. While some hurtful comments aren’t always caught or deleted, we do our best to keep it a positive place. It’s not a group where bully’s post rampantly. With all the negativity on the internet it’s just not tolerated in the group.

The group is close to 2,000 members. While it’s a large number, I can’t help but think, that there are way more women who need to know our group is here to support them. That it is possible to become pregnant with an Ostomy or Jpouch and it has happened for a lot of women who’s doctors have told them it isn’t possible. I started a page called Ostomy and Jpouch Moms Worldwide in hopes that members or even non members would write their inspiring stories, spread more awareness and who knows, maybe some from the medical field will find the page, read features and change how they look at our fertility. I’m always happy when someone wants to be a feature. I also recently started an Instagram account for further awareness.

While I have help from admins, our time is stretched between being Moms, work and sometimes our health. I’m so grateful to those who are willing to help in any way. If any advocates are reading this. Please share with your followers and feel free to contact me directly about spreading more awareness at tara.parkal@gmail.com or send me a message on Facebook.

Please click on the links below to get through to the pages.

OSTOMY AND JPOUCH MOMS

OSTOMY AND J-POUCH MOMS WORLDWIDE

June 3, 2018February 23, 2022

International Children’s Ostomy Educational Foundation UK (ICOEF UK )

INTERNATIONAL CHILDREN’S OSTOMY EDUCATIONAL

FOUNDATION UK

ICOEF UK

I am amazed that I haven’t heard of this wonderful charity before now , that is why I have decided to help promote what they do for children who have bowel, bladder or intestinal diversions.

These wonderful puppets help children cope with the big changes in their lives due to these surgeries.

Introducing The Gastronauts®

For children who have more than just butterflies in their tummies.

These fun Ostomy puppets help stoma nurses assist ostomate children and parents through their life changing medical procedures.

The Gastronauts were developed by Liz and Phillip Prosser, authors of “Unwanted Baggage”, a resource book for all ostomates.

Here are a few of these lovely puppets.

These individual personalised puppets are for children who have bowel, bladder or intestinal diversions. Each puppet is designed to reflect the child’s own diversion with its own ostomy bag, catheter, gastrostomy tubes etc.

This is how it all began……

Judith White, President, International Children’s Ostomy Educational Foundation UK
(ICOEF UK) – www.icoef-uk.com

Life changed for a fifty year old, living in the depths of Mid Wales. Liz Prosser woke up from an operation which left her with a stoma. What was a stoma and what would happen to her from now on and for the rest of her life? She researched the subject as much as she could and found very little to satisfy her knowledge. So, Liz, together with her husband Philip, who are both writers, produced a resource book ‘Unwanted Baggage’, but this wouldn’t help parents of children who had gone through the same experience as herself.The majority of the time Liz was confined to bed. In the evenings, to help to pass the time,
Phillip would sit on the edge of her bed discussing the days’ events. During one of these discussions, Liz said she would like to help mothers and children with bowel and bladder conditions like herself. She had the experience of the operation, the experience of changing her lifestyle. What happened next was to change their lives and the lives of 12,300 children worldwide and all in the space of just six years! Phillip, acting the fool as he does, wrapped a scarf around his arm, made a face with his hand and started talking to it. Liz saw the funny side of this and at that moment forgot her medical condition laughing at her “stupid” husband.

On thinking further, they decided to purchase a puppet and modify it to have exactly the same appendage as a child. Phillip sourced a 15” puppet and one was made for a child in a hospital in Wales. This was a great success and the
hospital asked for another one to be “manufactured” and, again, given to the child. The hospital noticed that the child talked to her puppet, which became a personal friend, as her puppet would not “tell Mummy” of her hurts and anxieties. This puppet was used as a friend to cuddle, a friend to take to bed, indeed a friend to share all her problems with on a one-to-one basis.More and more puppets were made and adapted by Liz, while Phillip sourced the puppets, arranged postage, etc. and introduced a ‘Knit and Natter’ group to help Liz, as demand was increasing at an alarming rate. One day, an email arrived from the USA asking for a puppet.
Liz started correspondence with Janet who now runs things from the ‘other side of the pond’ in the USA. Liz still produced the puppets for the USA, indeed the rest of the world. These would come into her in one’s and two’s which meant she could still have the pleasure of overseeing each puppet.I worked together with Liz on a local newspaper and have kept friends ever since the early days. It was after spending a Christmas with her and Phillip down in Wales I was asked to become involved with her charity. I would be her ‘legs’, running around the UK, doing talks and study days together with manufacturers and charity clubs. We have never looked back.
Last year saw me in Cape Town, South Africa, at the World Council of Enterostomal Therapists (WCET) Congress presenting an abstract on ‘The importance of using puppets as a tool to educate children into their new medical way of life’.
In 2016, the workload was so great that it was decided to divide the world into four main areas. I would control the UK, Janet would look after the USA, while Ruth would run Australia, leaving Liz and Phillip, who moved to France, to set up the EU countries.
The International Children’s Ostomy Educational Foundation UK (ICOEF UK for short) is operated throughout the United Kingdom by five trustees, and a small number of volunteers.
We meet five times a year and more often when major items need discussing. At the last meeting I was elected to President, while John White is Vice President. He looks after the dayto day running of the charity leaving me to oversee the puppet orders. This works well for us and keeps the wheels well oiled.Here in the UK, we have cut down on the number of puppets we can stock as our only source of supply is from abroad. These have to be ordered in massive amounts. The storage of 500 15” small puppets and 500 30” nursing teaching puppets requires a large space. When an order comes in through the post or via the website the details are checked and confirmed.
Each child’s puppet costs £35 to produce, so a donation to help fund the postage and packing is always welcome. The medical ‘bits’ are put into the puppet bag together with the puppet and are sent out to one of our sewing teams. These are collected when completed and the finishing touches added. Each child receives their puppet in a cardboard box, together with a
sterilizing plastic bag, a cloth bag (to carry the puppet to School), a Membership Certificate and a letter from me. Each puppet is numbered and from this number we can identify were the puppet comes from, the child’s name, the procedure and the hospital where it was carried out. On the outside of the box is an A4 label addressing the puppet to the child; not to the
parent, unless requested specifically.
The main problem in supplying children with puppets is Data Protection. We have the puppets to give to children if we can find them. The other problem is volunteers. We need people to be our ears and eyes and to tell parents and carers about our charity and the website.
If parents are informed about the charity, they can then make contact and directly order the puppets from us and this, in turn, avoids any Data Protection concerns.
Since ICOEF was formed, we have helped 12,300 children worldwide and over 2,500 here in
the UK.
There are over 53 reasons why a child may be ostomised. So, please ask yourself, the next time you’re out shopping or on holiday, is that child ‘normal’? I’ll bet you – you will never know.

Judith and her husband are now in their 70’s and are hoping to pass on the care of this charity to someone dedidcated and committed , who is willing to work with them with a view to taking over.

The Gastronauts^® are personalised by the trustees and Volunteers

May 5, 2018

3rd surgery done, what next?

Dressed in my sexy gown and Teddy socks I am ready and waiting to have my surgery for persistent perineal sinus and exploration.

I nervously walk to the pre theatre room to have my anaesthetic, pillow tucked under my arm ( we are told to take the pillow with us from the ward.) There are a few people in there, my anaesthetist included. I have seen her already when she went through the choices I have with pain relief. I feel quite calm really, must be getting used to this.

My cannula goes in, oops missed, I will get a bruise. In it goes again, this time ok. ” Just giving you something to relax you” she says, it works really well and I feel pleasantly drunk. I tell them so, I then get the oxygen mask and don’t panic at all.

When I wake up I don’t feel any pain at all, just a bit of a sore throat. A nurse is sat beside me all the time in recovery. I go off to the ward to recover some more. I remember being told that my packing in the wound will dissolve and the nurse at the GP should just change the dry dressing.

I didn’t know that this would cause me so much stress. I go to see the nurse at the GPs after I am discharged and she seems to have never heard of dissolvable packing and that it usually needs repacking daily. She phones the ward but no one there seems to know the answer to what I had inside the wound. We decide that I would keep trying the surgeons secretary and she will just change the dry dressing as told on the notes. I wasn’t told much at the time and didn’t have a visit from the surgeon letting me know anything. I have a letter that states I will likely need further definitive surgery and he will speak to the plastic surgeons.

This is all I have so I ring around to try and find out if I need repacking or not, I get tearful after being told to ring back on Sunday when my notes might be on the system as they have gone to coding. I resign myself to this and worry about the future surgery, I know that is not going to be an easy surgery as it will probably involved mutilation of my buttocks to sort out a flap. ( This had been discussed previously ) If I thought my body image was wrecked with a stoma, then I ain’t seen nothing yet.

The journey from beginning to end is not over yet as I had hoped , but I will carry on in the usual manner and take it as it comes.

April 7, 2018September 25, 2020

Not all stomas look the same- not all scars are the same-not all stories are the same.

WARNING PHOTOS OF SCARS, STOMAS, AND WOUNDS

I decided to ask my lovely stoma people if anyone would be willing to show their stomas or reversal/ surgery scars on a blog page, so that I could show that no two stomas are the same and that not all scars are the same either. Many people who have had this type of surgery worry that something is wrong when they see a picture of a stoma, and theirs is not the same.

I felt the same when I was shown a booklet the day before surgery that showed a cute little rosebud stoma on a perfectly clear tummy. This was one of the images.

In reality it is nothing like this. There may be a few lucky people with one similar but I have yet to meet one. The nearest I have come across and I might say, very jealous of, is this one…

How neat is that? unfortunately for this lovely lady, she eventually had to have a different kind of stoma, a loop ileostomy which is a “Demon” she said. Her scar healed well.

This lady had an original ileostomy that was very sore as it dipped into the skin, but had a new one placed which is much better. One that dips or is flush with the skin can cause major skin irritation and is very difficult to treat.

This selection was from someone who had a bowel resection in the beginning, theses are the scars, then a stoma. Her scar healed really well.

This following image is of a stoma, but also a fistula where they were not able to close the incision. This person will be having surgery in April to close the fistula and have a reversal , so no more stoma.

The following selection is from a woman’s first stoma which was a loop ileostomy. When this was taken down it was by the drawstring method and then the resulting scar which I think is very neat. The patient then had a j pouch but eventually that failed, so she had a new ileostomy which was very recessed and eventually was taken down again and the j pouch revised.

A stoma now, that has a scar next to it from repeated peristomal abscess / ulcer. It just goes to show that not all scars are the same.

Again a wound that is dressed, caused by an abscess due to hidradentis supparativa ( I had never heard of it either, its an auto immune disease that causes abscesses mainly on and under the breasts, under arm and groin ). With scar running down the middle from ileo surgery.

When they did the barbie butt surgery with this next patient they opened up the original abdomen scar.

The following few pictures are of an end ileostomy and a scar from a mucus fistula on the right . ( where the end of the rectum that has been kept and bought through the abdomen so that the mucus can be collected into a smaller pouch whilst it heals.) The rectum still produces mucus fluids even though it isn’t connected to anything.

A Crohns patient had a temporary ileostomy formed and a loop colostomy made permanent. this a scar that is only three weeks old.

All these lovely people were happy to help me raise awareness of all things stoma, and are very brave with their stories. For most of them, this has been a difficult time with many hurdles, but they have all come through in the end.

Thank you to each one of you who were kind enough to share their surgeries with us.

March 4, 2018

Coping with a stoma leak and why they can occur.

WARNING STOMA IMAGES

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.

February 17, 2018

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)

February 4, 2018

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.

LOOP ILEOSTOMY

END ILEOSTOMY

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.

January 21, 2018January 21, 2018

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 Stomaatje.com

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.

January 6, 2018

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

WARNING- STOMA PICS

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 .co.uk. 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:

https://www.youtube.com/channel/UCJjPp6hrjmO-WI9duUWlvNQ

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.

November 25, 2017

Being diagnosed with IBD, my story- Crohns and Colitis awareness week 1-7 Dec

#MakingTheInvisibleVisible

GO PURPLE FOR CROHNS AND COLITIS AWARENESS WEEK 1-7 DEC 2017

The most usual symptom of ulcerative colitis is diarrhoea, mostly bloody. Bleeding ulcers and pain are another. Extreme tiredness and weight loss can and usually do occur. Crohns disease is very similar but can affect the whole digestive tract, where as colitis affects the large bowel. ( There are other manifestations of both diseases that affect the whole body).

My story starts about 30 yrs ago when I was in my late teens early twenties. I was the usual teen, out most nights managing to get to work the next day. Totally enjoying life. Then wham…..

I had gone out with friends to town and was going to visit my sister in London the following day. Stupidly I had taken my purse that had train tickets, credit cards and photos in, plus extra money for the trip ( I know, complete idiot). I remember going to the bar and feeling for my bag and realising the zip was open and my purse had gone. I was in total shock and didn’t know what to do. I told my friends and we had a look round, went to the toilets, and generally panicked. I went outside and found two policemen, I told them and they said that I was the fourth one that hour. They helped me cancel my cards and advised me to look in the bins around the square. Nothing. These people were going to have fun with my stuff and money. Grrrrrr, I am totally convinced that it started the IBD, yes I might have had it in me but that triggered the reaction. If only those selfish people knew what stealing my purse actually did to me…..

I had to go home ,and we rang our parents for a lift ( I had no money for taxis or even the bus). After a lot of hassle, I still went to London to see my sister. Dad managed to get my money back from the original tickets.

When I was there I started to feel unwell. I got diarrhoea and remember looking in the mirror thinking I looked very dark under my eyes. I came home a few days later and was being sick along with the diarrhoea. I started getting a contraction type pain near my appendix that made me sick. I became very unwell and had to have the doctor to me. He thought I had appendicitis and told me I needed to go to hospital, I was petrified having never been in hospital in my life. My mum and dad were away so my friends took me.

I was taken straight to a surgical ward and the doctor came to talk to us. He put a gloved finger up my bottom ( as you can imagine, I was a young woman and he was quite a dishy doc so I was mortified). They did various other checks and it was decided I didn’t have appendicitis but they were not sure what yet.

Mum and dad were back and spent most of the time at the hospital with me when allowed. I was put on a drip poked and prodded and was really ill. I was being sick with the pain constantly and was threatened with the NG tube if it didn’t stop. I refused and suffered the sickness. Things became worse when I went to the toilet and lots of blood came out. I often didn’t make it to the toilet either, this was awful and I dreaded the pains that made me want to go because I knew I wouldn’t make it. I thought I was dying and the doctors were still unsure what was wrong. My stool samples were so thin and bloody that they couldn’t grow anything from them in the lab. I lost so much weight that I struggled to walk. I was given steroids intravenously along with fluids and needed a daily injection into my tummy to stop blood clots.

One memory was of me trying to get to the toilet quickly with a drip in tow. I got into the cubicle and missed the toilet, there was blood and poo on my nightie and on the floor, I didn’t have a clue what to do, I was attached to the drip so couldn’t take the nightie off. I pulled the emergency cord and a young male nurse knocked on the door. I was so embarrassed I asked if he minded getting a female nurse to help me, he didn’t of course but I felt awful. I had never experienced this kind of feeling before and I didn’t like it at all.

The pain was still there like a contraction and once, I remember lying against my mum and suddenly the pain eased for a bit for the first time in days, I told her that I might have to get some sleep incase it came back, I didn’t dare move and I managed to be comfy for a short while.

After ten days of shear hell, I turned a corner and started to improve. The euphoria was amazing, it was strange after so long feeling very ill to feel well again.

The doctors then came to see me and informed me I had IBD but they weren’t sure if it was crohns or ulcerative colitis. I didn’t get much information and at that point wasn’t put on meds. I came home to recover and after two weeks at home I started again with the pain, sickness and diarrhoea. I was totally upset and didn’t have a clue what was happening to me. I became bed bound once more and the GP came again and told me I needed to go back to hospital. Off we went again and again I was strapped to the drip etc..

Again I was sick and had bloody diarrhoea, and was on the ward for another ten days.

This time I was given some new meds called Olsalazine along with the steroids. I began to improve again and was discharged back to my parents care. I was tapering off the steroids and was ok.

Between times, I had a barium enema and barium meal, now there’s a treat, not.

After a few more weeks those dreaded symptoms again returned. I was totally devastated and was back in the hospital. This time we realised that I was supposed to carry on with the Olsalazine but was never told this so when I had my last one that was given, I didn’t take anymore. As I said earlier I wasn’t really given any idea what to expect with the disease and what the outcome could be in the future. Although this time they gave me information on Crohns and Colitis UK. I decided to join and was so glad I had. I began to understand my disease and what it could mean for me in the future.

After a few years I was diagnosed with Crohns disease so I at least knew what to expect. But strangely this diagnosis was changed to Crohns colitis or indeterminate colitis because they couldn’t decide which one.

The following years were difficult, I married and had children with flare ups that lead to hospital again , which became much harder when you have a young family. Christmas’s usually meant a flare up and I hated it. I hated what this disease was doing to me and the fact that family life was often disrupted. One particular flare was so painful on the toilet that I was sick then fainted. My husband heard me shout when I came round. It was very scary, that happened twice.

I remember being in a long flare that grumbled along and one gastroenterologist telling me to spend quality time with my children because I may need big surgery. This was very scary stuff.

I was eventually put onto Azathioprine which put me in a very long remission ( more or less, I still got bouts of diarrhoea ) of about 14 yrs, which I was taken off due to possible long term side effects. This was the start of my last flare before surgery.

The rest is Tomas the stoma.