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)

 

 

 

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.

 

Tomas and me

Tomas can be a right pest when he wants.

 

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.

 

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

PERINEAL PROCTECTOMY (BARBIE BUTT)

 

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.

 

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.

WOUND HEALING

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Well I am pleased to say that my wound dehiscence is almost closed. It has taken 6 long months of care from my nurses and I cannot wait to have a proper soak in the bath, which is so close for me now. I have only been able to have a shower with a waterproof plaster over my normal dressing , being careful to still not get too wet.

I have had two very shallow baths in 6 months and it wasn’t worth it. because I was so boney, it really hurt to lie down in the bath, so my husband had a brain wave. We bought two kitchen chair covers from Ikea , and put them in the bath, then I got in.I have to say, it was very comfortable, just a shame the bath water was a cup full.

I don’t have any pain in the wound now, and only really had minimal pain even when cleaning before. It is unfortunate that it had to open in the first place, as the scar now looks strange at the bottom. In fact when I stand it looks like I have two belly buttons.

I suppose I can buy high waist bikini bottoms if I decide to show my tummy on holiday. I think I will, it will help raise awareness and it will boost my confidence I think. It would be silly to flash everything on my blog pages but then worry what people think on the beach.

I know some folks have had much worse wound dehiscence than me, where most of the wound opens right up and they need vacuum healing. So I was lucky for it to stop at the bottom of the scar. I remember looking each day to see if had crept up the scar , and watched it do just that to start with. I was also allergic to the plasters they used originally, and found it very itchy but not being able to do anything about it, until I was told about Mepilex plasters. The are amazing and don’t hurt whatsoever when taking off, and no allergy. They are apparently quite expensive so they may try and put you off ,but if you have an allergy to plasters, this is the one.