The colorectal nurse, a rare breed indeed, National Nurses Week

Seeing as it is National Nurses Week I decided to write a post about the amazing colorectal nurses who cared for me for many many weeks on the colorectal ward E14 at the Queens Medical centre, Nottingham.

#ThisNurse

They were all totally awesome and caring but a few of them went above and beyond. One nurse in particular was so kind all the time but I remember if I was upset which was often, and she was on duty, she would come and kiss my forehead. This was such a nice gesture that I would like to thank her for making me feel so cared for. She had the softest lips too so it really made you feel better. ( it probably sounds more weird than it actually was lol).

They would help me with my depression and chat to me when possible. They clubbed together and bought me a cuddly toy and a card for mine and my husbands anniversary, as I was very poorly on that day. If they saw me walking only a few yards, they would make me feel like I had walked a mile. The sisters on the ward were not like Hattie Jacques as you would imagine, but lovely knowledgable people who knew when I  needed to do certain things even if I really couldn’t face it, to letting me off now and again when I was at my worst.

I remember my appetite was non existent for many weeks and I was so scared of not ever getting it back, my family would be worried and try and force me to eat more which of course didn’t work. The nurses would tell me that if I only ate a very small amount, it would be helping and try not to worry about it, that it would improve over time. The more I stress about it the worse it would be, so I tried not to worry, as it happens I did need to be NG tube fed eventually, but the nurses were always calm so they helped in many ways over the food issue. Of course ,they were right and my appetite eventually returned with a vengeance.

They cleaned and packed my wounds daily, gently and caring. They washed me and changed my soiled clothes, never making me feel like I was to blame.

They spent time with me, time they didn’t really have.

Considering their job work load and the type of ward they work on ( all poo and bowels) they are angels. They care for some of the most ill patients as their chosen field,  in colorectal, they have to be a special person to choose that calling.

From the healthcare workers to the sisters, you are one in a million.

You are never “Just a nurse”

 

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.

Leave my supplies alone

 

I just have to vent my frustration at the messing about of my stoma supplies my NAMS, the Nottingham Appliance Management service. They have obviously been told to keep everyones supplies to the cheapest and to the minimum.

I understand that some supplies are dearer than others and I am happy to change to a cheaper product ( f I am consulted first ). BUT DO NOT REMOVE ONE ALTOGETHER. This is stressful and I am unhappy abut it. I rang to order my supplies this morning to be told my barrier spray which I have had since surgery and need as I have a fistula at the base of my stoma and an allergy to a lot of plasters and some base plates. I was told that it was no longer on my prescription and if I wanted it back on, I needed my stoma nurse to email them with the reason.

HAVE YOU EVER HAD A STOMA ? HAVE YOU EVER HAD TO PUT ON A POUCH THAT STICKS TO YOUR SKIN EVERY DAY FOREVER? whoever decides what we can and can’t have needs to be on our stoma forums to see what a mess our skin can get into if we don’t look after it.  If it ends up  that I cannot have it anymore I will be coming to you to sort my skin out.

I know this way of ordering will be happening all over the country eventually and what is more annoying is the fact that it is one stoma supply company that got the contract and they then try and push their products on to you.

FITTLEWORTH PROMISE ON THEIR WEBSITE.

“We promise to deliver on time, wherever and whenever you need products, ensuring you always get the bet possible service. We will never change your products without first discussing this with you and your healthcare professional, meaning you’ll receive products and accessories to meet your needs, everytime you order.”

 This didn’t happen to me, and it hasn’t previously , when I rang to order my usual adhesive remover spray when they just said it wasn’t available anymore !!!! The company I use for that spray was not very happy at all.

I get that the NHS has to be careful with money now, and I am happy to be asked to try a different brand, but to deny altogether is totally unacceptable.
Read the label , it says protect the skin, not heals the skin after the fact.
NAMS say we can only have remover spray if your skin is affected, what they fail to realise it it’s the barrier spray that stops the skin getting sore, you have it totally wrong NAMS.

 

 

Surgery next week eek eek

Surgery for the perineal sinus is nearly here. Am slightly apprehensive but more excited to get it done. It has been such a long wait ( over a year) that I can hardly remember using knickers without having to use pads. I will then have a month before I go away with the girl friends. I know these sinus tracts can come back and I shall just have to be super confident that mine won’t,  I don’t relish the flap surgery but will still have that over the leaking any day of the week. The surgeon will open up the proctectomy scar and perform a sinus excision and will also explore the area for other issues that may be there, such as suspected fistula and also a cyst, the cyst showed up on the MRI, I will then be sewn shut again as before.

I had my pre op last week which seemed to go ok, they checked my heart and lungs, and asked lots of questions then did a blood test, which I haven’t heard anything so assume it was ok. I am a born worrier though and have had a cough and allergy symptoms for months, but the GP assures me it’s chronic sinusitis so I will have to stop thinking I have every other disease known to man. Fingers crossed I don’t get cancelled.

I have been on a diet and resumed low level keep fit ( 10 minutes most days on a rower, I know its not much but it is something lol) I haven’t had chocolate, cakes etc for ages and cannot quite believe it as I am a known chocaholic and lazy bugger. I am hoping it will help me survive general anaesthetic ( I am also a tiny bit hypochondriac when it comes to being put to sleep ).

Not looking forward to getting up at the crack of dawn either, there for 7am ?????.

I am an inpatient but unsure how long for , but hoping it is ward E14 because they are lovely , and know me from my long stay previously so will be great to see them, then it’s home to recover ( on my side 😉  )

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.

 

 

 

Still waiting………….What has happened to our NHS?

 

Ok, so over a year ago I had my bottom removed, my rectum and anus to be exact, and sewn shut. I thought ” Great I can start to recover and get on with my life”, how wrong was I.

A month or so later I noticed some fluid coming out of the wound. I got my poor husband to take a look ( he gets all the good jobs) and low and behold I have a neat little hole. I went to see my GP who took a swab and said I had an infection. I was given antibiotics and things improved for about three days. It came back with a vengeance. I was due to see my surgeon anyway and he said it was a sinus tract. He wanted to leave it for a bit as they can sometimes heal themselves. A few months later I was still in distress with the fluid and pus coming out so my surgeon said he would do an MRI to see the wound and how the sinus was situated inside. I again has to wait a few months for the MRI and again to see the surgeon for the results.

The result was that the sinus seemed to have a cyst at the top near the bottom of my spine and he wasn’t sure if it was connected to the sinus. He needed to ask some colleagues opinion and get back to me. The surgery would either be a simple laying open of the sinus tract which can sometimes return though, or a bigger operation to fill in the dead space left in my pelvis which is causing the leakage and some sort of flap surgery where a plastic surgeon would be involved.

I waited more weeks and rang a few times for an update. Eventually the secretary said he wanted to see me in clinic again to discuss. I then had to wait a few months for that appointment which was just over a year later from the proctectomy in which I have this continuous leak with discomfort and often leakage through clothes. It has been a complete nightmare especially when I am out of the house either socialising or at work. I have leaked bloody fluid at a party and my wonderful friends had to strip me in the toilet and rinse my clothes and dry it under a hand dryer. I was close to going home but didn’t. I leaked at a restaurant on holiday in Spain and leaked through my shorts, and again needed help to tidy myself up. This is all with panty liners on too. What is going on here? because I am now a minor surgery in comparison I am deemed well enough to suffer. I now sometimes wear “nappy” pants which is demoralising enough. I get through lots of panty liners which is costing me money as I have not been offered an alternative.

Yes this is a moaning blog post, I feel I have to moan to keep sane. People need to see what is happening to their neighbours, friends and family.

I don’t blame the NHS per say, I blame the government for allowing this to happen. My surgeon is so busy that he is back logged with surgeries. The 18 week NHS deadline is a farce. What happens when you are not seen within the deadline ? nothing at all. I can’t afford to be off work because I need those weeks to recover from surgery. I pick up every bug going because I have the sinus and it is tiring. I have very low Vitamin D and borderline iron deficiency, which I am convinced will improve once I am done with surgeries.

I feel left in limbo for a year with no date yet for my surgery, I am struggling to cope with it all now and can’t plan my life. I have made the mistake of believing the NHS dateline and booked an paid for a holiday with my friends in plenty of time to recover, or so I thought….. alas it looks like I might not make the holiday after all. I can see my beloved NHS taking a turn for the worse this time, and it truly breaks my heart.

I was in this predicament in the first place because there were no beds, and I was pushed to one side. It isn’t just me, it is many people playing the waiting game………..and that game is in extra time.

Notts and Derby Ileostomy and Internal Pouch Association

 

Exciting times ahead.

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

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

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

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

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

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

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

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

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

Coping with a stoma leak and why they can occur.

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.

 

 

 

What does it actually mean to lose your large bowel?

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

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

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

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

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

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

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

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

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

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

 

 

 

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


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

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

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

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.