Time for Tomas to have a makeover

Since getting my stoma five years ago to now has been a bit of a rollercoaster of leaks, trying different bags and seals, discomfort etc to now needing a refashion of Tomas. Unsure yet if they will keep it the same side or have to move it to my left side.

The last few months was a worry for me because my stoma now doesn’t work or produce output, but weirdly the fistula does it all now. it’s very near my skin so very difficult to make sure my skin is protected and another thing I have found out is that the pressure of the fistula doing it’s thing can cause the leaks because it is against the base plate where the force is. ( hmmm very jedi )

Anyway, I think it is time for Tomas to be reborn. That pesky fistula has had it’s day and I just hope another one doesn’t form, three’s a crowd.

My most recent bag change has cemented my feelings, I get sore skin even though output hasn’t always leaked, from the general tight skin and a vein that is visible and uncomfortable coming from the area of the fistula, with smaller veins coming from the stoma, I am sure the fistula has caused all of this. All I want is to have a nice stoma without added extras, I have kept going with this for 5 years. The fistula pushes the stoma to the left so it is awkward as F to put the bag on in exactly the right place.

The Eakin seals have helped so much these last years and without them I feel sure my skin would be so much worse.

It has been a few months since my surgeon has passed me on to a colleague due to retirement but I haven’t heard anything probably because of backlog covid etc. I have managed this long so a bit longer is neither here nor there. I have such a love hate relationship with Tomas, if it was a normal stoma with no issues I would be so happy because the stoma actually is great ( when it was working) . I rarely got partial blockages, and have never had a full one, it just seemed to cope with whatever food was given, with no trouble. Even a pea popped out in full like it was being shot from a cannon, hilarious. A slither of mushroom, no problem just popped out too. Peanuts on the other hand can be troublesome for me, I did have a  partial blockage from too many handfuls of peanuts, I just massaged around and drank plenty of fluids, luckily it seemed to work.

So to have to change because of an added complication is a worry.

As you can from these photos through the years, you can see the fistula changes, and I suppose it will only get worse.           

very small fistula
Slightly bigger but still manageable
Starting to cause trouble
Not a pretty one
double trouble
Double trouble
Comical side, to help me through the difficult bag changes

 

 

 

CT with contrast allergic reaction

 

I have other ailments as well as having a stoma, one of them being idiopathic intracranial hypertension, which causes the fluid surrounding the brain to build up and cause severe headaches,( not too bad at the moment) pulsatile tinnitus ( horrific) and other things. Anyway, I needed to have a CT non invasive angiogram, which is a CT of the blood vessels in the brain with a dye injected into my arm.

I have had many similar with an MRI and when they asked if I had had contrast before, I said yes with an MRI. I also have mild asthma so mentioned that too.

Well, all I can say is, I will never have another one, it was awful. On the day it was fine, had the CT scan, did feel the stuff go in as was told I would and it felt very warm all through my body, but was told it was normal so wasn’t worried.

The next day it started. I began itching and itching and itching. A rash started to develop and it just spread all over my front and back, my eye swelled a little bit and a light rash appeared on my forehead. I looked a mess to be honest and rang the doctors. No one seemed in a rush to see me and just suggested over the counter antihistamines. Well it didn’t touch it and over the weekend in the evening I rang 111 for advise, that was a waste of time as they suggested I try the local late night chemist, who also wasn’t able to offer anything else.

Things didn’t get any better, but no worse and I rang the GP again who said they would send a prescription to my chemist of stronger antihistamines. I started on them and still not much improvement, AND no one had seen me.

The rash started to go but then the itching went to a new level. I couldn’t bear any clothes touching my body and was a mess. Again I rang the GP and they gave me prednisolone to try and help.

Three weeks on and I am still very itchy but have just got to get over it myself as no one seems to want to help. It feels like ants crawling over and I have little spots on my head too. I decided to look up on google and found it to be a common occurrence with CT contrast dyes to get some form of reaction.

I am still to find out how long this will last, I can scratch myself raw if I start so sleeping is difficult, I am reluctant to ring the GP practice again as they don’t really know the answers, I have had one doctor tell me that it could be kidney issues that the contrast has caused and that is why I am itchy, but another said highly unlikely so with that I won’t hold my breath for any other meds that might help, will go another week and see.

Anyone else have a similar reaction?

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.