Perineal sinus after proctectomy

Went to see my surgeon today for my post proctectomy review. Because I had the pelvic abscess, my wound isn’t fully healing. It is reasonably common in this type of surgery, to develop a sinus ( hole where there shouldn’t be one, that drains pus or fluid usually.) I have done my usual trick of looking it up on the internet, wished I hadn’t. If it doesn’t heal after the first look ,

He said I need an MRI to see how deep the sinus is before he decides what to do. There is not a big rush as I am well in myself, but because it is a nuisance and could potentially cause more issues, it is best to get sorted. He thinks that he will need to use a probe and it will be a general anaesthetic again. After that, I didn’t really understand what would happen.

These surgeries are a long haul, and take it out of you. I really didn’t know there could be so many complications with it all, and I can safely say, that I have had most of them. This is because of the mess I was in coming into surgery in the first place.

 

I Believe in you

16602795_10208502690669290_4129388600594374457_n

16427283_10208442216917484_3245066972846567944_n

I have joined a fair few forums and groups to do with Crohns disease and ulcerative colitis , and the overriding theme is not being believed by medical professionals how poorly you feel.

Now, I know this to be true, as I suffered at the hands of a medical professional who didn’t really listen to how ill I felt until it was almost too late. The facts were there, the test results were there, but they were not, because I didn’t fit the Truelove and Witts criteria. Apparently , until your kidneys are failing and you are at deaths door, you are not ill enough for hospital care.

I have an overwhelming need to speak out for myself and others. The Truelove and Witts index is archaic. I am proof that having distal disease can be very severe, enough to have emergency surgery. You don’t need to be on the toilet 10+ times in the day, to be very severe. My haemoglobin level showed It was just on normal, but my iron levels were non existent, which meant that any day I would need an iron transfusion. I began having temperature spikes in the evening, and was losing weight rapidly. Because my temperature was normal when I saw this particular professional, I could see in their eyes they thought I might be mistaken and a bit of a hypercondriac. When the pain was so bad and I couldn’t pee, I was told the person was unavailable and to see my GP. My husband then took me to A&E, eventually seen by a lovely surgeon who said I was very very ill, and needed my colon removed immediately. I also found out that I had sepsis.I had surgery the next morning ( a Sunday) and was in for ten weeks.

I know that the NHS is struggling, and I can say that apart from one person, my experience has been exemplary. The reasons behind that persons decision have nothing to do with NHS failures I am sure. During my ten week stay in hospital, I saw many people come and go on the wards, many I spoke to and I know they were not as ill as I was. To this day, I have no idea why I was treated in this way. I wasn’t given some of the treatments that could have saved my bowel, because they felt I wasn’t ill enough. Have a look at my photos, I don’t exactly look full of beans.These were taken after surgery, 10 weeks in hospital ( which I might add, I had fantastic care by the surgeon and team on the ward).

I read other peoples stories, and a similar pattern unfolds. Terrible pain and bleeding, no quality of life, and yet they are treated like they are a pestering nuisance.

I really feel that the treatment for crohns disease and ulcerative colitis needs a new fresh approach. Surgical intervention, or at least a surgeons opinion needs to be sooner.If a person says they are in pain, just because their vitals are steady, it doesn’t mean it is not true. I struggled with my life for 4 months before it was necessary to help me. Many Crohns and UC sufferers ( yes believe me, they suffer) constantly with symptoms, many can’t go out because of them. They are terrible diseases that are embarrassing for many.

Please please can someone come up with a new system for these patients. If medications are not working, don’t just blunder along with ancient remedies that have no chance of working just to say they are trying to avoid surgery. Surgery may be the only hope that person has.

14102616_10207147557911818_8056525386694134516_n

Pain in the arse

This post might have slightly too much info for some of you , but I would like to share this for those of you who may have similar, or may be having this surgery in the future. Ok so nine months after my original total proctectomy, and two months on from perineal proctectomy, I am still leaking infection from my back passage. How, you might ask, if your rectum and anus were removed and sewn shut?, the answer is a small dot of a hole.

It was great for a few weeks, even though I was still a bit sore, I wasn’t leaking. Then all of a sudden it started. It isn’t just a small bit either, its a constant dribble or drip.

Now, to set things in order. I had the rectal stump blow out nine days after surgery, which gave me pelvic sepsis. I had to have a rectal drain into my pelvic cavity, and it never really stopped from then. I had intravenous antibiotics quite a few times whilst I was in, and came home 10 weeks later still with the catheter in situ. Eventually, my surgeon removed it and said that the infection would continue to drain through my stump , and I had to wear padding. It was expected to slow down or stop but the proctectomy would make things ok. I thought, at least it isnt giving me a temperature anymore.

Well it hasn’t really cured it at all. It started to leak from a very small hole in the stitched wound, and the wound healed but still left the small hole. I went to my GP who put me on antibiotics yet again, and took a swab. I had a call a few days later to say that the type of infection that was there,needed a different antibiotic so as soon as I had finished the first one, I was to start the second one. It did actually stop for a few days and I thought that was that. But alas, no such luck. It started again with a vengeance and is really uncomfortable, as you can feel it wet and sore. I again went to my GP but because the hole is so small, I can’t have it packed .

The hospital had already changed my post surgery appointment twice , so now it was way off in April. So now I had the task of trying to get in earlier. Eventually the colorectal receptionist got me squeezed it at the end of February. I still have a month to go and even then, don’t know what will happen. I have no idea how serious it is to leave it either.

I know that the NHS is so busy, and do not blame them for this, its just a real pest after all these months of problems and surgeries, it feels like there is no light at the end of the tunnel. Will let you know the outcome , except to say that when I googled it ( I know, bad move) that it is quite rare with the blowout and sepsis that one person had to have a flap of skin of his thigh placed over the wound. Sounds lovely.

15589500_10208039427447999_1527662210408467693_n-1

Back at work

Well I have been back to work for two weeks on phased return, and I am glad to be back.Everyone is happy to see me luckily, and I have been reasonable well. I did have a small leak from my proctectomy before I went back and a swab found infection so was on antibiotics for that, which cleared up fine.Only thing is it left me with oral thrush so am on oral suspension for that.

This morning I woke up with a slightly swollen eye and itchy skin, so it seems I am allergic to something, maybe that thrush stuff, annoying. Will see what happens today, luckily I am off work today anyway.

Tomas decided to make himself known in a training session, by making loud noises,there were only three other people and at first I made excuse about tummy rumbles, but the noise didn’t really sound like that so I fessed up. Those happened to be folks who didn’t know about him, so otherwise I would have laughed it off.

I have been lucky that I have not had a leak at work, usually I don’t leak, but this week my stoma bag leaked twice at home.They were both small leaks that didn’t spoil anything, but you always have that fear, and I noticed both as I got up in the morning, so it set my morning routine askew and I felt a bit rushed. I like to air Tomas for 20 mins when I change my bags, to help prevent itchy skin and time for the barrier spray to soak in. I found myself pressing the edges of the bag over my clothes all morning to double make sure it was stuck well. It could be a lot worse though, and I could leak at work or all in the bed. All in all, work has been great, and I have settled back into it, and all the new things that have been introduced in the year I have been off.

I was measured for a hernia belt too last week, I wasn’t sure about them at first, as I thought they might feel very tight, but I was pleasantly surprised. I get three on prescription a year, and not only that, I can have them in the pants style with lace. I have decided to try them both and decide on the third, based on the outcome. I will mainly use them for if I wear dresses and skirts ( those that know me will probably say, never then) but even tighter clothing would look better as the support with hold it all in and flatter, but allow the bag to fill up still.

unknown-1

You can get them from the NHS or websites that do ostomy underwear.

 

Cleaning Tomas the stoma

A new year will hopefully bring a better year. So far so reasonably good.

The over granulation on my stoma that the stoma nurse put silver nitrate on (pic 3) is now much better (pic 2). My skin around Tomas is fine too, only itches when I need to change my bag. I find a lot of ostomates have trouble at some time or other with soreness etc, but I seem to have found a routine that suits me.

My bag change routine is as follows ( for those who might get some tips for theirs)

Use Brava adhesive remover spray to ease the bag off, without pulling at it , as I found this aggravates things.

Clean all around with warm water and tissues until very clean.

17155646_10208648456673349_6852370550917214071_n

I then use ostopeel adhesive remover wipes to get rid of any sticky seal that is still left on from the Eakin seal I use.

17190839_10208648455793327_8685024267705417245_n

Dry with soft tissue, and if there is time, I usually lie there for a while on my bed watching tv to get some air onto my skin.

17022150_10208648457953381_2773388789734055597_n

I will then spray ostoguard lavender barrier spray, leave for a bit, then spray again, leave for a bit.

16939715_10208648455593322_6532548884258356898_n

Finally I mould the Eakin seal ring around the base of the stoma, when everything is fairly dry, so that it sticks well. This then helps prevent leaks under the bag. I know there is a gap in the photo, this is where I have the fistula, so I have to mould around that.

14432948_10207340508815470_5407175596058595243_n

The bag then goes on, and I make sure it is stuck all the way around the stoma and outer edge.

Usually this goes according to plan, but if Tomas is in a naughty mood, he will inevitably poo whilst I am doing all of this, so I have tissues tucked under him, and judge when to put on the seal and bag. It has gone wrong though ,when he poos after the ring is on, and that can be a pest, not to mention wasting time and stock.

Everyone is different, but if you are having trouble with sore skin etc, it is sometimes useful to try what others are doing.

Good Luck and a happy and pain free new year

Tomas and me

Tomas can be a right pest when he wants.

15589500_10208039427447999_1527662210408467693_n-1

Just when I have decided not to have surgery to refashion Tomas ( because of the fistula ) he plays up. I was managing the fistula very well with the Eakin seals. Then low and behold , my skin around Tomas popped out and started to curl around. Apparently it is called over granulation, where the skin is irritated / sore, and white cells gather and cause these unsightly raised bumps, which can be sore and sometimes bleed.

I went to see the stoma nurse, and she has dabbed silver nitrate onto them , a bit like you would with a wart. Hopefully they will eventually come away. It stung a small amount when she first did it, but after about 30mins, it was back to normal. They are harmless anyway, so if you can manage them, leaving them alone won’t be a problem.

15578420_10208039427247994_536579753226707329_n

She also told me about the new Eakin seals that clean off much easier, I like the sound of that, I do like Eakin seals anyway but they can be a pain to clean off when changing your bag, so the new ones will be much better I hope. I have one on now and will order the new ones when I need some more. It seems very comfortable at the moment.

I am also being fitted for a stoma support belt, which ostomates are usually advised to wear, especially when working / exercise/gardening etc, as we are more prone to hernias and prolapsed stomas. This was also the reason I didn’t want more surgery on Tomas because I was told that I would be even more prone to these complications.Better the (little) devil you know.

On a different subject, I went to see my councellor and she said I had come a long way since I first met with her, and I accept what has happened to me now, and embrace Tomas. I have to agree, things are much better and I have one more session after I have started back to work, to check things are still ok. It seems a long time ago when I was in hospital for all those weeks, not knowing if I would make it in one piece ( am not quite in one piece, a piece has gone never to return) but I can actually talk quite openly about it all. I dont remember ALL my time there in full, but I undestand the severity.

At the moment I am looking forward to christmas, and I really hope people in a similar situation can overcome things and enjoy christmas too. To those awaiting help, it does get better.

Merry christmas everyone, see you soon.

Love Tomas and me xxxx

On the up

It has been 8 months since my first main surgery and 3 weeks since my proctectomy, and I am doing well. I can sit pretty well without much discomfort and am beginning to feel my old self. The scar is less sensitive and the bruising on my inner cheeks has gone 😉 It is great not to leak fluid constantly from my rear end, and I am saving on sanitary pads and loo roll.I still don’t know if I made the right decision to leave more surgery on Tomas, because he is being a right pest. I get itching under the bag, my poo sometimes gets onto my skin next to Tomas and becomes sore, and the skin that connects to Tomas , a part of it has decided to pop out and curl over which is sore. I can still handle it but it is a nuisance. I am seeing the stoma nurse soon, so will see what is happening, and seeing the surgeon for my check up in February.

I have found that my hair under my fringe is very thin, this can happen apparently when we have had this sort of surgery, and I hope it thickens up soon. Having Tomas to concentrate on with twitter etcetera is a help, and I am thinking of doing more with the concept.

I go back to work in the new year and am really looking forward to it, I am a bit apprehensive as I know some things have changed, but the team are fantastic so I am sure I will get plenty of support. I am hoping I will start to feel “normal”and my mind won’t constantly be on my health. My friends and family have been my rock, and because they know all about me, I don’t feel embarrassed about things. I do worry that Tomas will make a lot of noise at times, especially at work, but me being open about it means I will probably come clean.

I haven’t mentioned up to now, that I had a confirmed diagnosis of multiple sclerosis, which I kind of denied the idea for quite a while. I have some symptoms that need treatment but I am not going to dwell on this for now as this blog is for Tomas and me, but I may tell the odd snippet now and then. Although I was advised to have vitamin D supplements ( a high dose) which is great for your immune system, I was never told this before, and it may have been worth taking them with the colitis too, as that is also an autoimmune disease.

I am going to have a better christmas than last year as I was unwell then, with the start of my last flare of ulcerative colitis. I can relax at home and enjoy time with my family.

Please follow Tomas on twitter @tomasthestoma

PERINEAL PROCTECTOMY (BARBIE BUTT)

15241861_10207835073259272_8982415184980284570_n

Well its two days before surgery at the moment , and I am shitting myself (not literally, thats impossible). I have high anxiety levels where my whole body is on high alert. I feel on the verge of panic constantly. I hate this feeling, I wish I wasn’t such a worrier, my mum almost skips into surgery , whats that about ?.

My bag will be packed soon, I keep looking at it ready but not quite sorting it out yet. I have to be on the ward at 7am and have four pro op drinks to drink before midnight, then two more a couple of hours before my op. Thats great, that means I should drink them before 7am in case. The surgeon is refashioning my stoma too, although I need to ask again if it is worth the risk, as I am coping ok with it now. The risk was …more prone to hernias, and prolapse of the stoma. Don’t fancy either of those thank you.

I am trying to fill my few days before surgery so I am not thinking too much all the time, it is very hard to do. Even though the last surgery was awful, I am much healthier but also have the time to worry, I didn’t really have time before.

THE DAY OF SURGERY

We had to get up very early, I had to drink 2 pre op drinks, 2 hrs before surgery so I played safe and had them before 6am. Gross that early in the morning but had to be done.

15230747_10207835073899288_5478241797448048858_n

We went to the surgical admissions ward and I had various checks, then got into my gown. My surgeon came to see me, and I mentioned my worries regarding having my stoma redone. After a short time, we decided to leave the stoma and concentrate on the proctectomy. I am able to look after Tomas as he is for now at least.

When it was time, I had to walk down to theatre, it was the walk of doom, I really wanted a sedative before all this, but no luck. The anaesthetist said I wouldn’t need an epidural for after pain relief this time and should be ok with intravenous painkillers. I lay on the bed, the surgeon was there too. Before I knew it, It was done.

I woke up in recovery, in complete pain,the worst I have ever had, the nurse soon filled me with pain relief and then I was fine.I had a bit of temperature but that got sorted very quickly.I felt the odd twinge but all was ok. I had a cup of tea and a sandwich, then had to wait the whole afternoon for a bed on the ward. Meanwhile, my catheter was removed and I had some fluids. I was soon asking to use the loo. They tried a bed pan and I just couldn’t wee, so they got a commode, and again, I tried, but just couldn’t wee. I got quite scared and soon needed to wee like a horse.Apparently this is not uncommon after this type of surgery, as they are so near the bladder, and have also put in pain blocks, so another catheter was inserted, and oh the relief. Eventually , at 8.30pm, I was moved to my favourite ward. My wound was looked at, and deemed very good, I was settled and ok.

I started being a bit itchy, which I had last time and they said I was allergic to the antibiotics, but I wasn’t on those. My cannula stopped working so they gave me morphine by injection. As soon as it was done, I knew it was the morphine. My arm went red with a largish white patch where the injection site was. The doctor had to draw around it to make sure it didn’t spread. Luckily all was fine and I was swapped onto Tramadol. I had a comfy night and in the morning was the doctors rounds. He was pleased with how it had gone, and said that my surgeon had found some infection in the stump still, so had put packing up there with antibiotic gel, and sewn me shut. The packing absorbs eventually.

I had on my sexy socks, and was told they would leave the catheter in another day then to see how I got on.I stayed one more night, then the next day, I thankfully had a wee, ( I rang round family to tell them the good news 😉  ) I was allowed home.

I decided to have a look at my wound at home. I was a bit shocked, if I thought my other scar was frankenstein-like, I was in for a shock. I had bruising, but the scar was long and swollen.No wonder I was having trouble sitting. It became a bit more uncomfortable as the days went on, but I managed to sit very wonkily. One cheek then the next until it was easier to get on the bed and lay on my side. Cleaning the wound was fun too, either in the shower with the spray directed onto it, or a very shallow bath to splash myself with.

It has now been 10 days, and it is not too bad.Slightly more comfortable to sit longer with, we have bought some foam to cut into a seat shape made from memory foam, I hope it works as I want to see my daughter perform at christmas at the theatre.

I have taken a photo of the wound, but am not ready to show all just yet. Watch this space.

I wonder what happened to whatshername…oh yes , me

14390979_10207326011053035_2567701507257331460_n

Back to stoma talk. Can’t be helped , this is me now , confused, sad, happy, weird , questioning, always questioning. Is it normal for ones emotions to jump about so much? I think I am used to having a stoma one minute, to pure fear with the thought of living like this for the rest of my life. For instance, have you thought about coping with a stoma when you are old? I have. I see older folk in the hospital with stomas, who struggle to cope now for various reasons, arthritic fingers, dementia, waiting for help from the busy nurses. For the nurses, it should be a dream patient, one who doesn’t actually shit the bed, but they would come with their own stoma issues. Only nurses who work with stomas all the time, truly know.

As of the 17th of this month, I have absolutely no way of going back ( I don’t now really, but I still have my bottom even though it isn’t connected to anything ). I won’t ever use the toilet for a poo the same way EVER again.I will always have Tomas, ALWAYS.

What about when my skin gets wrinkly and baggy, will the bags fit properly? We hear about the young people with stomas much more now, before it was very taboo, but why? didn’t anyone ask the mature stoma folk what its like? I don’t ever remember any stories or pictures of elderly stoma patients enjoying life. Maybe because they were just getting on with it, not worrying about what people thought. I would love to hear from an elderly  person with a stoma,( did you name it?,) and listen to their story. If anyone reads this, please let me hear your side of the stoma story.

Not sure if I am doing the right thing by being so open about my journey, but when I see others doing the same, I feel proud. ( and upset, I thought I was the only one being so graphic, then more people might read my blog, but alas….I am not alone).

Not long before I go under the knife again, am so scared of it all. I read up about it, sometimes wishing I hadn’t, sometimes glad that I did. It still feels a bit like a dream (nightmare ?) and one that I won’t be waking from.

I am feeling very morbid at the moment, I am sure it is because of the upcoming surgery, the winter drawing in, coldness etc… I feel isolated in my own mind, with my own thoughts. Will I be able to enjoy christmas? how much pain will I be in? eeek. If I am like this now, what will I be like the day before?. I need a sedative from now until then.

14448825_10207326011773053_9192019710837367802_n

I have had problems with peas lately.

They seem to bother Tomas. I end up very watery as the skins block the output, and it makes me feel just ugh . I have had them before though, so I think I don’t chew as well as I should the more I get used to it all. I had a small amount of mushy peas the other day, and I think even those are no good now, I assume that being mushy, it would go through no bother, think again. It makes changing the bag a barrel of laughs. I get through a million tissues. First time I have seen Tomas look like he is having a wee. Mums first comment on seeing it in the first place months ago was ” it looks like a penis” .Today it is a lot better, but I hate the fact I have to be careful what I eat, I have found going for meals, a pain in the barbie butt,( haha) I might love the sound of it but you can bet that there will be something used in the dish that could cause me problems. People who know me, know i like to eat so this is sad news.

I can’t wait for all the surgeries to be over with, not long now, hopefully my and my families life will take an upward turn for next year.

 

 

 

Now for something completely different

I have decided to put together some of my most favourite photos , some weird, some comical, some very normal but just different ,but mostly fun. Hope you like them, I will put a small description by them.

Thought I would have a change from bags and bowels.

14124466_10207147548711588_6872398777677665945_o

This picture is a wonderful rooftop view of Corfu town.

14115605_10207147602032921_9114396778620033990_o

A roof top ( theme here somewhere lol) of the bell tower in Riva Del Guarda31795_1347525572707_6540856_n

A cute bird in Corfu

3284_1078325362870_514763_n

My boxer enjoying the Devon coast

1004855_10200382994801968_1336629258_n

One of my favourites. Turkey.

31795_1347529732811_6723864_n

10574453_10202533649206984_2588046958775020923_n

Albert and Misty, captions please

10009333_10201794437247147_1518927743_n

Beam me up Scotty (poor mum )

396520_3703449389330_419238368_n

Beautiful tree in Barcelona.

523152_3703562792165_996758753_n

An amazing work of art, Barcelona

.14925585_10207669427638235_45181995075425790_n

Autumn.

10291056_10202034640492078_3504446450034052291_n

Just found this amusing,

311991_2047393708973_1319129928_n

935009_4933200012327_1191061003_n

Totally reminds me of Greece

.10342419_10202237095633330_6886082925225150399_n

Same reason.