If it’s not one fistula it’s the other

I am now being referred to St Marks hospital in London for my vaginal fistula / defect. I have had issues ” down there” for years since my first surgery, and since the rectum removal so a bit longer won’t make much difference in the scale of things. Just hope they can help me.

Why do things occur or worsen straight after seeing your surgeon? you wait for ages to see them, then as soon as you are back home, things suddenly get 100 times worse. My stoma fistula has now decided to over power my stoma. For the last few weeks the fistula has decided to produce all the output whilst my stoma has none. The plumbing has altered and I don’t know what this means for the stoma. Will it wither and die? or will it keep on moving as if output will pass, but it never does?

 

Have you ever seen Scrad from Men in Black 2 with Jonny Knoxville? well this is Tomas and the fistula ( the fistula being the annoying second character attached to the first)

I think I need to consider a refashion sooner rathe than later and maybe re-site Tomas to the other side of my tummy, and just hope that I don’t get another one. My surgeon is retiring at the end of May so I think I need to ask for his advice re another surgeon.

Anyone else had a refashion or siting? how was your recovery? how long were you in hospital for?

FIVE YEAR STOMAVERSARY 3RD APRIL 2021

What a rollercoaster those five years have been.

A gastroenterologist who nearly killed me by leaving me suffering, to ten weeks in hospital having major scary open surgery to remove my large bowel and have an ileostomy formed, including 3 or 4 days on the high dependency unit ( I was a bit out of it there so don’t remember exactly how long).

Waking up with a naso -gastric tube the size of a hosepipe down my nose, and having a second central line put in my neck.

A slow recovery with many complications, rectal stump blowout which caused pelvic sepsis, and feeling so ill I thought I might die. A wound that opened up at the bottom which needed packing for 6 months. A fistula developing at the base of my stoma ( this all happened in hospital ).

Losing over 2 stone in weight and needing another tube for feeding, this one was slightly less hosepipey. Being very depressed and ill.

Having PTSD symptoms ( ongoing with counselling )

Having my remaining rectum and anus removed and sewn shut, developing a perineal-vaginal fistula and needing 3 surgeries then more extensive surgery. More embarrassment by having to have a medical photo of my rectal fistula.

Then ……Feeling better each day and meeting new people, joining the committee of the Notts & Derby Ileostomy association and becoming their Young IA rep. Going back to work and feeling part of life again. Holidays, nights out ( Pre-covid) and finally smiling again.

Starting this blog. Meeting the TG Eakin team and blogging for them on A Bigger Life website and community, along with a promotional video.

Don’t give up.

 

THE DISABILITY THING

I don’t like to class myself as disabled because people look at me and might even question me, which in turn makes me feel that I shouldn’t have that blue badge, or the orthotic for my foot drop or that my fistulas are not visible so therefore I don’t look ill or have chronic health issues.

I look like I can function as any healthy person might, but I do have health problems that you can’t see.

I have had neurological problems for many years which include foot drop which shows itself on many an occasion and can cause my foot to miss steps or even miss nothing in particular. If I walk any real distance my foot starts to drop and drag, it is tiring and awkward.

I fall and trip often.

I do worry that one of these days I might do something more serious than cuts and bruises, I have been close to hitting my head a few times.

They say it might be MS as I have a lot of clinical aspects but they won’t commit yet. They treat me as if I have got MS but I haven’t had a clear diagnosis, it can take years before they decided for sure.

I have a diagnosis of Idiopathic Intracranial Hypertension too, which means I have some mega headaches and awful pulsatile tinnitus because the fluid around my brain is more than it should be. I have had lumbar punctures to remove that pressure and all I can say is I am glad I don’t have it as severe as some. I was having a lumbar puncture for MS when they found my pressure to be high.

Then of course there are the fistulas that I have lived with alongside the stoma for nearly five years. I get pain and leakage and it generally makes me tired. I had a big chunk of muscle removed from my buttock and thigh which can have it’s own troubles.

I am not here to say look at me, feel sorry for me, my life is great even with my problems, I am happy and manage as best I can .I am here to ask everyone to accept others, and just because they look great, there may be hidden disabilities or health issues that you just cannot see. If someone gets out of a car with a blue badge, assume there is a hidden disability if it isn’t obvious. You don’t get given a blue badge without reason and it is not for anyone to judge if you need it or not, same for disabled toilets, and the worst culprits are usually other disabled people who’s disability or health issues are visible and don’t need to feel like they need to explain themselves.

 

I have actually never been approached by anyone but I can see the look. I know that some folk look at me and think I am just sneaking into the disabled toilets because I can’t be bothered to queue. If I don’t need to use them I won’t.

The trouble with fistulas

 

Living with fistulas can be so unpredictable. One minute you have discomfort and excessive leaking, the next nothing. You and your surgeon have no idea whats going on, is it healing? oh hang on a minute it’s started again.

My vaginal fistula has returned after serious major surgery to get rid of the little bugger. I am upset but most of all I kind of knew it would happen. They are dreadful to heal and most don’t, and folk live with them for years. Suffering with leakage, either fluid if not connected to a bowel, or faeces if it is connected, so that faeces comes out of the vagina/ bladder/skin.

All the surgery for IBD are major and hard going, and that is the same for fistula.

I don’t actually understand why these things are so difficult to cure, but I also don’t understand why we are left for years without much help. It usually take me a year each time it starts again after surgery, to actually get anything done and that means spending hundreds of pounds on pads and underwear during that time, not to mention the discomfort and pain it can cause.

THIS IS SURGERY FOR A MUSCLE TRANSFER AND FLAP SURGRY TO TRY AND CURE THE FISTULA, IT HASN’T WORKED.

I have a stomal fistula which I have had since my first surgery nearly 5 years ago, I decided to leave it be until the other fistula was sorted, but that seems never ending and the stomal fistula is causing so much more problems.

It has grown a lot since those early days where just a small amount of poo would come out of it as well as the stoma end. I could just about cope but now, it looks like another stoma and it seems to poo more that the stoma itself, as I suspect it connects further down and diverts the output to the fistula. It is at the skin edge so the output usually seeps under the bag at some point. I have also had terrible trouble with ballooning, where the bag lifts in the night because of excess gas, this then causes leaks usually near the fistula.

THIS IS THE EARLY DAYS OF THE SMALL FISTULA

THIS IS IT NOW, I HAVE ALSO HAD A REACTION TO MY BAG WHICH CAN HAPPEN SOMETIMES.

It is very difficult to cut the wafer to fit around my weird shaped stoma, and take me a few goes at it even now. AS YOU CAN SEE, THE FISTULA CAN CAUSE SEVERE SKIN EROSION UNLESS THE BAG FITS PERFECTLY, AND STICKS WELL.

I feel it won’t be long before I admit defeat and have a stoma revision surgery. Does anyone else have a fistula story that has become frustrating?

Merry Christmas and a happy new year

Another year has gone by but a very strange and scary year for most. I hope everyone is keeping safe and well.

Thank you for still following my blog although I have been a bit quite recently but hope to continue more in the new year. I really appreciate you all and would like to wish you a Merry Christmas and a happy and importantly, a healthy new year.

Crohns and Colitis awareness week 2020

 

Another year has gone by with lots of social media presence helping to spread awareness of these terrible diseases.

There are many manifestations of these diseases apart from going to the toilet multiple times a day AND night. There are many painful and degrading tests and medical procedures.

It is about the chronic fatigue, the weight loss, the vomiting, the pain, the bloody stool and mucus, or even just blood and lots of it, it is the surgeries, the skin diseases, the anxiety or depression, the high doses of heavy duty medications, the joint pain, the incontinence, the liver diseases, the eye inflammation, the multiple mouth ulcers, the hair loss, the fistulas, the swollen anal skin tags, the enemas and nasogastric tubes, the cameras in all bodily opening, the urgency, the panty liners and pads, the missed events, the steroid moon face, the lack of understanding, the needles, the uncertainty, the side effects to meds, the embarrassment of not having control over your bowels.

This was me the night before emergency surgery to have my colon removed.

These are just a few of the things we have had to put up with, so if you know anyone with IBD then don’t under estimate what they are going through, a lot of which is hidden. Ask them is they need help, or just sit and chat with them, it can make the world of difference.

IBD it’s not for the weak.

Pregnancy and stoma or J-pouch top tips

 

Hi, this post has been created using tips from ladies who have been pregnant whilst having a stoma or a j-pouch, they are also members of the group Ostomy & J-pouch moms, so you can learn from those that have the most experience. Thank you for all your input in this post and I hope it helps those women who are thinking of having a baby but want more information, make a decision.

Alice ( right picture above )

“8 months pregnant, didn’t have any complications with the bag apart from a little parastomal hernia that went back in after giving birth. I did have to have a maternity counsellor for my mental health as being back in the same hospital as when I nearly died bought back some bad memories of course.She thinks I had PTSD. So definitely take care of your mental health because we’ve all been through a lot, so this stressful time is bound to bring up some stuff for a lot of people.”

” Be prepared fro size changes with your stoma, and to go from a convex to a flat bag agin was bliss.”

“I wish I had photos of my pregnancy journey with a bag. For some reason I didn’t want to have many taken, unlike my 1st pregnancy without a bag.”

” I never took a picture of my stoma while pregnant. I wish I would have. It’s so weird because it moves lower and lower and it’s hard to do a bag change. Bowel obstruction at 28 weeks so I was in the hospital for a few days and then on a full liquid diet.”

” I have two J-pouch babies. Both pregnancies were different, first one was a breeze, however, I did experience intermittent bleeding which they put down to pressure from previous surgery and had this again with second pregnancy. Both babies lay so low they thought head was engaged and were hard to scan from 12 week appointment. Second baby caused huge pressure on my pouch and the last few weeks caused an intense stinging pain- ice wrapped in toilet paper helped to sooth this”

” Get a good OBS/ GYNAE, preferably one with experience with ostomates. Have a clear birthing plan.Some can have a natural birth but others may not be able to for various reasons.”

” Take pre-natal vitamins that are easy to break down and get a good quality one”

“Eat small frequent meals, stick to food that is easy to digest. Ostomates have a higher risk of blockages while pregnant.”

” Order cut to fit flanges as stomas tend to grow wider. Be prepared for it to possibly get longer or prolapse. Some even experience a hernia.”

If you would like to add some more tips to this list then please get in touch using the contact form, I would also like to make a photo gallery, so please send any in that you would like me to use.

 

 

 

OSTOMY AWARENESS DAY 3RD OCTOBER

I am all for raising awareness and feel that it is important to show a stoma in all its glory, otherwise there really isn’t any point telling people what it’s all about without the fine details.

People are curious and have never seen a stoma, yes they can look scary and unusual, believe me I didn’t want to look at mine for weeks, and in hospital my stoma nurse changed my bag a few times with me looking away. But after I got used to it I would have people ask me questions about it and I was more than happy to oblige. ( I assume if someone didn’t want to know about them then they wouldn’t read my blog).

Stomas can look very different from person to person as the reasons for having a stoma vary too, mine is an ileostomy where I had my entire colon removed and my small bowel ( Ileum) was bought through my tummy. You can have a colostomy where you will have some large bowel left ( Colon), you can have a urostomy ( which is for your urine) there are still some more for example a jejunostomy where the part of the small bowel called the jejunum would be bought through. These are the main types but you can have many others.

 

Some protrude out more than others like mine, this is handy when you have an ileostomy or high colostomies because your output is much looser, a lower colostomy will usually have thicker output much like normal poo but most are made in the same way, this diagram is excellent showing how an end ileostomy is made from INSIDE OUT OSTOMY LIFE

These photos were from a previous blog post from some very brave and wonderful people.

For some of us having a stoma it isn’t the end of surgery, we often have our rectums and anus completely removed too, ( Barbie or Ken butt ) to make sure our disease has gone and doesn’t cause problems. Like me you might develop fistulas and sinus tracts which is not uncommon with Crohns disease and ulcerative colitis. As you have probably read before I have had surgery to remove a perineal fistula by having an IGAM flap. ( a large piece of muscle from my thigh and buttock was placed into my rectal dead space and a flap of blood rich skin was sewn over that part ) I also have a stomal fistula which will need surgery in the future.

So if you know someone with a stoma of any kind, remember that they have usually been through a few tough surgeries to get to the point where they look and feel well. You cannot see anything so please don’t judge us if we need the disabled toilet or can’t walk far due to fatigue. These surgeries are life saving but there is usually a cost to that.

 

Bathing and hot tubs with a stoma

For those of you who are nervous about having a nice long bath or a good few hours in the hot tub, it is not out of the question. As long as your bags stick well then having a bubble bath and soaking in there for an hour or so will not cause your bag to leak or the glue to disintegrate. Hot tubs for me are different as I explain further down.

I love having a bath more than a shower even if it is not bag change day, and will just towel dry the bag afterwards making sure I dry round the base thoroughly. Same with having a shower. I can stay in the bath until the water starts to get colder and all stays well with my bag.

I was more worried about a hot tub when I first went in one with some friends. Would my bag hold for a long length of time? Can’t imagine the embarrassment if it went pear shaped. Anyway, the first time I went in was fairly ok, It stuck pretty well and didn’t leak but the glue did go a bit mushy round the edge.

The second time I went in the hot tub which was probably for a bit longer, the base plate went really mushy and came away in one section, luckily I wear a convex and the important part didn’t leak, I remembered to take a spare bag just in case, glad I did.

It did put me off a bit, but a few glasses of wine later meant I didn’t care. ; )

CHEERS

 

 

The wrong thing to say to an ostomate

This week I have seen some comments on other stoma advocate’s posts that have upset me. I don’t mind the odd joke about my stoma as I am very open and a lighthearted joke or two lightens the mood. I can laugh about it quite happily with my friends and family.

But get me a stranger being rude and unkind and it makes me think that it is what everyone really thinks deep down. People commenting with the puking emoji on seeing a stoma is one of those. But the very best of the bad bunch is one that my friend The spoonie mummy mentioned on social media this week. It was from Twitter and the person concerned is a nurse in America I won’t be naming though, they can’t help being an arse ( excuse the pun)

Comments such as ” I can deal with anything in the nursing field…but a trach and an ostomy I just can’t do” ( puking face)

(A trach is short for a tracheostomy which is an opening created in the neck through to the windpipe so that a tube can be inserted to help with breathing, it is a different type of stoma hence the ending of ostomy.)

” I gag every time I hear I have a patient with one ” ( puking face).

” They are both nasty as FK to me and stink sooo bad” ( puking face)

What are their mentors teaching them? I hope these comments are seen by their employers so that they can decide if nursing really is the job for them.

Now don’t get me wrong , I can assume a lot of people might find stomas difficult and even scary, but putting such things on social media for the world to see really does make me feel sad to the point that I think if they feel like that then does everyone? Am I kidding myself that I can change the negative thoughts of people by being an advocate for raising awareness? These kind of comments really sets things back a few steps, but we must push through them or we end up hiding.

A similar comment on another post by Mr Colitis Crohns of eight puking face emojis this time from a primary school teacher. With the added poetry of ” F…ing gross”. Can you imagine if your child had a stoma and was under her care? hmmmm.

You may think, why are you telling us if it can be upsetting? well I think it is important to know that our job is to teach these ( luckily only a small few) people that their words and thoughts are inappropriate and really don’t help new stoma patients to overcome their fears. Exsisting ostomates are slightly more thicker skinned and we need to be the voice to let the world know that having a stoma of any description is perfectly fine and not dirty, smelly or any other discriminatory remark that these people think.

I have also read on an Australian site that there was a case that found a comment relating to the physical manifestations of a disability ( in this case a stoma ) at a workplace, the person had comments from her boss that were classed as discrimination, and acting in an insulting manner, so I urge these people to think before they speak.

Just as an extra note, I know you get derogatory comments in all walks of life not just stomas.