Is the mercaptopurine going to work? That is the question!

I have been taking the mercaptopurine for three weeks now. I'm told it takes four to six weeks for the effects to be seen. I really hope that it does something!

Every day I feel like my flare up is getting worse! The fatigue seems to be improving thank goodness. Perhaps the iron tablets are having some effect here. My IBD nurse has advised me not to take more than 200mg of iron sulphate a day, as it has a tendency to affect the gut.
However, I am suffering headaches fairly regularly, my tummy seems to feel more uncomfortable more often if I do not stick to a low residue diet. I have also noticed that high fat also seems to upset me which I've never noticed before. Also, probably the most worryingly, more Erythema nodosum seem tho appear on my legs each day!

The pictures aren't brilliant, but you can see the biggest ones. I counted them today and that's sixteen! What worries me is the last consultant I saw suffered that those crohns sufferers who get Erythema, have an aggressive form of the illness. I have been taking a low dose of prednisolone, too try and keep them under control while I wait for the mercaptopurine and humira to start doing something. I started at 10mg, and then brought it down to 5mg. It looks like I'm going to have to move it back up to 10mg again. This is very annoying as they make me retain water, and put on weight. I should be grateful that even though I'm in flare I'm not losing weight. However I am actually quite a few pounds too heavy, and putting on more would definitely not be good for me.

So, this is the limbo I currently find myself in. I'm currently taking a biologic, an immunosuppressive, and a steroid, and as yet I haven't seen much improvement, and things seem to keeping getting worse rather than better. So, will I see an improvement before I next see my consultant in August? I'll let you know!

Improving fatigue with iron supplements

After starting mercaptopurine a little over a week ago, I have suffered the worst case of fatigue that I can remember. I had put it down to the new drug, as it is one of the listed side effects, and after looking on forums such as crohnsforum. www.crohnsforum.orgI found that many people have experienced this. However  my most recent blood test showed that my haemoglobin count and ferritin levels had dropped. Could this be the reason I have been so very tired this week?

I have started to take iron sulphate supplements on the advice of my GP. 200mg a day. This can upset the gut somewhat, so whether or not I can tolerate it remains to be seen. I hope this will improve and help me to function day to day. I have a very full life, with a full time job, two children, a house to maintain, and a dog to feed and walk. Not to mention a number of other interests and hobbies I would like to persue. When I am fatigued, it can be as much as I can do to get up and dressed without feeling like I could do with a sit down. Most of the time I can ignore the feeling and keep ploughing through, but it takes the joy out of everything, and makes every task arduous. It's like you spend every moment walking through treacle!

The national association for crohns and colitis has recently completed a four year research project on fatigue in ibd, the results of which are published on their website; wws.crohnsandcolitis.co.uk
 They have created a questionnaire which you can fill in to help measure whether you are suffering from fatigue and to what degree it is affecting your daily l life. I found that I scored fairly highly in this, probably not surprisingly! I guess what I should do, is take my iron for a week or two, and then fill in the questionnaire again, and see if I have improved. I'll keep you posted on this.

Of course, the other question is, why am I anaemic? Is it my diet, as I am currently on low residue to try and reduce my symptoms. Is it that my bowel is not absorbing the iron very well, or is it that I am losing blood? (Of course it could be a combination of all three of these!)

Fighting fatigue - Is it IBD or The drugs?

I have been taking Mercaptopurine for nearly a week now, in combination with injections of humira.  It takes up to six weeks to see any effects from mercaptopurin. It is an immunosuppressive, and works by decreasing my white blood cell count, thus reducing inflammation throughout the body. One potential downside of this is that it is a bit like inducing anaemia, and can therefore make you very tired.

The past few days, I have indeed been very tired. I can't ever remember feeling so tired before! Well, at least not, when I have been trying to work at the same time! Obviously I was very sleepy immediately after my subtotal colectomy last year, but I could sleep all I wanted then as I was in hospital.

Trying to go to work, drive, hold intelligent conversation, look after two small children and do all my day to day tasks is incredibly difficult when you are feeling fatigued! I wonder what colleagues think of me when I am like this? It's not obvious that there is anything wrong with me, which means there isn't really any excuse or explanation if I don't do my work quickly or to a good standard.

Back in full flare

It's been four months since I last posted, but although my blogging has been quiet, I afraid the same can't be said for the Crohn 's!


I took the course of prednisolone which helped clear up the Erythema which was good, and at the beginning of March I went for another colonoscopy and gastroscopy. I was rather surprised to see that what was left of my colon had a long ulcer measured at 15cm long just down from the anastomosis (the join between the ileum and the sigmoid. ) There were also a couple of small ulcers at this join. I was surprised just how much ulceration there was, as although I had a feeling I was flaring I was hardly feeling any pain.

Ten days later I had an appointment at the GI clinic and saw my nemesis of a GI consultant. We'll call him Mr Smith in order to keep within slander laws. He rather bluntly told me that there was no cure for crohns and hence no wonder drug. (Like I didn't know). He suggested I just carry on, without any medication and see how I get on. Before I could argue a case he changed the subject and asked if I would contribute to his research project. Of course I agreed because if I can contribute in anyway towards research into crohns and colitis then I will. By the time I got home I was fuming! The research was on people with colitis who were in remission. As far as I could see, all the info pointed to the fact I wasn't in remission. Immediately, I got in contact with my GI nurse, stating that I wasn't happy with being left without any form of treatment at all, and I was worried my condition may quickly deteriorate.  She replied the next day. She agreed and said the rest of the GI team agreed that I wasn't in remission, and I would be restarting humira.

Well I've been on humira for twelve weeks now, which is how long it can take to see results with a biologic drug such as this. Unfortunately I haven't seen any real results so far. Two weeks ago my Erythema nodosum returned, and I am now beginning to experience abdominal pain again.  I went tho the GI clinic last week, with all my fingers and toes crossed that I wouldn't see Mr Smith again!


 I feel very blessed as it was not Mr Smith! It was in fact a consultant I had never seen before. we'll call him Mr Jones. He spent time ensuring he knew my full history of crohns. He seemed very surprised that I'd never had any drug but mesalalisine and occasional prednisolone before trying the humira. He said that my crohns was aggressive, and having had a pyoderma gangrenosum before and regular Erythema nodosum, these should sound alarm bells for what is happening in the gut. He wanted me to start an immunosuppressive in combination with the humira, and wants it started as soon as possible as he didn't want the disease to spiral out of control. Finally a GI consultant that seems to be on the same wavelength as me!

I started mercaptopurin three days ago. It can take four weeks before it s effects are seen, so here's hoping! It works by reducing my white blood cell count, which should stop my body from attacking itself in the form of ulcers and inflammation. I have to be careful that my white blood cell count doesn't drop too much though as this might leave me liable to infections I can't fight off. For this reason I need weekly blood tests to begin with.

I just need to sit tight now. However my Erythema nodosum are beginning to come out on both legs and one in particular, I am worried may develop into a pyoderma. I would like not to have to take any more prednisolone, bit I may need to while I wait for the other two drugs to have an effect, or I'm going end up having to take time off work!

Next colonoscopy booked . . .

I got a letter through the other day, saying I could now phone the colonoscopy unit at the hospital to book my procedure. I phoned up straight away and it is now booked for 4th March. Still three weeks away, but at least there's something to aim at. I've dropped my steroids down to 10mg a day, but not sure I can go further, and may even need to increase again, as bowel movements now have no form, and are fairly frequent!

Anyway, the good news is they've sent me my laxatives through the post, and they are going to phone me to do pre assessment over the phone. I had to go in for this last time, just to be told what I could read on the paperwork for myself. Considering the hospital is more than an hours drive away, this was rather annoying!

The bad news is, it falls on a Tuesday in term time. I was hoping it might fall next week when I am on holiday, but as it is, I will have to take two days off work, due to the cleansing procedure.  This will go as follows :

Three days before the colonoscopy, I begin a low residue diet. The day before, I stop eating and take the laxatives. This empties my gut of all its contents.  The no eating, coupled with very frequent trips to the toilet will make it impossible to work.

It's annoying that I will have to take time off for it, especially when we are understaffed, but on the other hand, at least my week off, the week before won't be ruined! So there is a silver lining in every cloud!

a more interesting low residue dinner

Low Residue Beef Stroganoff with white rice

When I'm following low residue, I like to take advantage of the fact that dairy is low residue.  For some people, high fat content can be just as much of a limiting factor as fibre content. It's important to bear in mind however, that just because it's dairy doesn't mean it has to be fatty and greasy.

One of my favourite meals that feels very indulgent is stroganoff. I make it with creme Fraische rather than cream, which both cuts down the fat, and gives it a bit of zing I tend to use beef, but any meat could be used. Chicken is the lowest residue, and its worth noting that pork is very common as a trigger food for inflammation in the gut. I try and avoid pork if I can, but I can't back th out up with any evidence. As with any of my recipes, approach the ingredients with caution, and leave out or substitute according to your own gut!


Serves Four

Ingredients

1 lb. Frying steak cut into strips (rump is best, but cheaper frying cuts will do fine)
Onion granules
1/2 teaspoon cumin
Freshly ground black pepper
1 teaspoon paprika (if tolerated)
1red pepper, grilled, skinned, deseeded and cut into strips
250ml half fat creme fraische

1 mug white, long grain rice
Knob butter

METHOD

Begin by preparing the pepper, as this is the mosr fiddley. Cut in half and place skin side up under a hot grill.  Cook until skin is black and charred.  Wash under a cold tap to remove the skin, and then cut into thin strips.

Now, place a knob of butter in a saucepan on a medium heat. Add the uncooked rice to the saucepan and continue heating for one minute, stirring constantly, until all the grains have a thin coating of butter. Add water according to pack instructions and bring to the boil.  Meanwhile, place a frying pan on a high heat, and fry the strips of steak. Add onion granules, cumin, and paprika if using. Cook until steak is sealed on each side.  Add peppers and bring up to temperature.  A splash of white wine in the pan at this point is nice, but a couple of tablespoons of water will do.  Stir in the creme fraische and and slowly heat with stirring to form a smooth, silky sauce. If you heat it too quickly at this point then the creme fraische may split.  Simmer gently until rice is cooked.  Serve the stroganoff with the rice. Will go well with carrots, or broccoli florets.

low residue diet recipes

Coley with white sauce and boiled potatoes

I posted some time ago about low residue diets, and included a recipe for low residue lasagne. It has always been my intention to post further recipes, but following my bowel resection I stopped personally following a low residue diet. However this is something I refer back to when I find my gut feeling a little sensitive, and on these occasions, I try my best to keep my meals interesting, even if I am only following low residue for a few days. I find that keeping it as interesting as possible, you automatically keep it as varied as you can. This is particularly important when following such a restrictive diet.

So here's another recipe that is low residue, but still feel fairly well balanced:



Ingredients:
Coley steak (or any other white fish such as haddock, or cod)
1 cup milk
1/4 fish stock cube
Pinch parsley (if herbs are tolerated)
Dessert spoon corn starch
One medium potato, peeled
Broccoli florets, stems removed

METHOD

First peel potatoes and place in saucepan. Cover with water and bring to the boil, allow to boil for five minutes. Meanwhile bring a separate pan of water to boil for the broccoli.
Put the milk in a shallow pan on a medium heat and bring to a simmer.
Crumble in the fish stock cube and parsley if using.
Add fish and cook gently until opaque. At this stage, put the broccoli into the boiling water, to begin to cook.
Remove fish from milk and set aside.
Stir the corn starch in a little cold milk and pour into the hot milk, stirring constantly. Bring to a simmer, until the sauce thickens. Add salt and pepper to taste.
Return fish to pan to ensure it is the same temperature as the sauce.

Serve with the boiled potatoes and broccoli florets.

Time for more colonoscopies

So I saw my consultant yesterday.  I have been on prednisone for two weeks at 20mg, and I explained that although it was clearing my erythema, I wasn't so sure about my gut. She has told me to only reduce the prednisolone very slowly, and go back up if things worsen. She has booked me in for a colonoscopy, gastroscopy, and MRI of the small bowel. She wants to see if there is inflammation, and if there is, then how aggressive the disease is at the moment. This will determine whether the treatment is something such as azothioprine, or if I need to go back on to biologics.

In part I am pleased that this is the course of action we are taking. The colonoscopy, is a hassle with two days worth of bowel emptying to prepare for it, but at least we'll be able to see exactly what's going on.  She told me I'd be booked in for two to three weeks time. This may work out well as I'm on half term with school in three weeks.  Although having said that its a shame that whenever I get holiday it seems that I spend that holiday at the hospital!

Of course it may not fall in half term. I got an email from the ibd nurse today saying that the examinations would be a while away. She said to let them know if things got worse as we may have to temporise things with steroids. This is a bit of a blow
 I don't want to be on steroids any longer than I have to. I'm really hoping not to put on any extra weight!

Erythema Nodosum

So, following my partial colectomy in July, I was really hoping such drastic surgery might put me into remission for a while. the surgeons ensured that they took any diseased bowel that they could see. , whilst I know that the problem with crohns is that it can come back, I was really hoping for a few years of remission.
After recovering from my surgery I felt pretty good. No pain, no discomfort, I didn't need to think about bowel movements, or whether or not I was going to stink out a public toilet.  This was not to be a long term feeling it seems.

Just before Christmas, I noticed a small red mark on my right shin. I recognized what it was immediately. Erythema nodosum. It's not a brilliant image, but below is a picture of it. This is an extra intestinal manifestation of crohns disease that I have posted about before. They are inflamed areas just under the skin, usually appearing on the shins. I tend to get them when my crohns is active.  I couldn't believe it when I saw it there. I hoped I was wrong, and so for a day or two I did nothing. It steadily grew bigger, and was hot to touch, then it began to get itchy. At first I thought that I wasn't experiencing other symptoms, but the more I thought about it, the more I realised, I'd just been ignoring it.  I got on to my ibd nurse to tell her about the Erythema. I also told her that I was sometimes getting loose bowels, had an aching knee joint, and a little acid reflux.  The nurse was great. She immediately got on to my GP, to ask him to prescribe some steroids, and brought my next check up forward.

I have now been on prednisolone for two weeks.  My Erythema is clearing, and the two or three others that were just about becoming visible have disappeared. This is great, but the other symptoms don't seem to be going. In fact they seem tho be coming more pronounced. Loose bowels are once again the norm, and yet again, I'm back to worrying  whether my next public toilet stop is going to be embarrassing.


Ho hum, I have my appointment with my consultant tomorrow. I guess I can talk about other treatment then.

For the bowel to heal, it needs nutrition

After my bowel resection I found recovery very slow. Yes, I was in a lot of pain, but pain, I am used to. I walked slowly, and it was a real effort to hoist myself out of the bed and sit up for any length of time, or simply go to the toilet to pass water. All this I could cope with. The thing I really struggled with was the nausea.  I stopped taking the morphine related painkillers, because I kept being sick, but my surgeon insisted I continue to take something other than paracetamol. She prescribed me paracetamol, and tramadol at alternate intervals, combined with three different antisymetics so that I could have something to reduce the nausea every four hours.  On paper this was a perfect solution. In practice, where you can not access your own medicine, but have to wait for a nurse to bring it to you, this was not so perfect.   I did not like the way tramadol sent you into a hallucinatory sleep, so I tried my hardest to do without that anyway.

The real problem though, was that the ward was quite simply understaffed, so getting antisymetics every four hours was impossible. If I kept an eye on the time myself, and called for somebody, to get my next dose, by the time I actually got what I asked for, I was already feeling sick again. Couple this with breakfast lunch and dinner being very efficient, it was a recipe for disaster. You could pretty much guarantee that half an hour before a meal was due to arrive, I would be feeling like I might manage to eat something.  Then I would begin to feel tired and nautious. I would try to get hold of an antisymetic, but it wouldn't materialize. Then a meal would turn up and I wouldn't be able to eat it. Then the porters would come and clear it away and note down I still hadn't eaten anything. Then, of course, a nurse would turn up with the antisymetic I'd asked for an hour ago!

This went on four days. We were also in the middle of a heat wave. By God it was hot.  When asked by the surgeons how I was doing I lied through my teeth. I wanted to get home, they wanted the bed free, nobody wanted an excuse for me to stay any longer!

When I finally made it home, five days after my operation, several family members wondered whether I should have been discharged. It quickly proved to be the correct course of action, as in no time, the nausea cleared, my appetite returned and I made very rapid progress indeed.


A few months later, my mum's dog swallowed a marble, and got it stuck in her bowel. She had to have it cut out, and basically had a small bowel resection. My mum asked the vet whether she should be feeding her , or letting the gut rest immediately  after the operation. He replied that after an operation such as this, the gut needed nutrition in order to recover. For this reason, the dog was tho be fed as normal. When my mum related this story to me she simply said at the end. "It's no wonder you didn't start to recover from your opp until you came home!"

recovering from a subtotal coletomy

The morning after my surgery, as you would expect, I felt awful. I still had an epidural in that was keeping the whole of many abdomen numb, even my feet felt a little tingly.  If I touched my tummy it felt really weird. I could feel the skin under my fingers, but I couldn't feel my fingers on my tummy, it was like touching rubber! From my chest up however, I felt an awful lot of pain. The was a lot of air inside my body which had entered the abdomen cavity during surgery, and this site was riding up into my chest. Every breath I took hurt. I tried to ease the pain with my morphine top up, but each time I pressed it I felt drowsy and sick. Oh God how I hated being sick! Worst if all it didn't improve the pain in my chest. I stopped giving myself the extra morphine dose quite quickly.

Two nurses helped me to have a bed bath. This was also a very weird experience. They filled a bowel with warm water, helped me take off my gown, and assisted me whilst I washed my face, neck chest and tummy. I am not accustomed to people seeing me wash, and I'm rather body conscious. Who isn't? Still, it did feel refreshing.

After my wash, they wanted me to sit in a chair!  I couldn't believe I was expected to stand up and move to a chair not twelve hours after open surgery. The two of them supported me whilst I sat on the edge of the bed. I felt very dizzy and faint, but they assured me I was fine and doing well. Trying to stand when the epidural was still so strong was very weird, but I did manage to stand and move across to a chair. By the time I sat down I was very out of breath and the pain in my chest had soared. I felt like I was about ninety. Then, my husband appeared around the corner. I was so pleased to see him, but admittedly, a little saddened that he should see me in such a state. I looked up and smiled at him. I simply said "No bag" as although I know we'd have coped of I'd have ended up with one, that is what he really needed to know at that point. He said that was great, and then he made some excuse about needing a bin for his rubbish or something and disappeared. Turns out he had to disappear off for a little cry, as he was so pleased to see me alive! Sometimes I forget that although this disease is physically happening to my body, it's really my family that suffer with it.


When the surgeon spoke to me a about a colectomy on my first night in hospital, I said to him "so will I be in hospital for weeks afterwards?" His reply was

 "No not weeks. People are usually up and about in a few days"

Now when I heard this answer what I interpreted it as was, 'after this massive operation, you will be in hospital for a day or two, but after that you'll be back at work.'

What the surgeon meant was, 'after a few days people are usually able to stand up gingerly and slowly and carefully make it to the bathroom on there own.'


I was completely unprepared for just how much of a shock to the system this operation would be and the steady but slow recovery that would take far longer than the few nights I stayed in hospital.  Very naively I compared the operation to the natural birth of my two daughters.  I thought to myself that giving birth to a 7 lb baby was a massive thing for my body to do, and the removal of a section of colon was a similar thing the body would need to recover from.  What I failed to factor in was that when giving birth naturally, my body slowly and gently relaxed the muscles of the abdomen to allow growing room for the baby, and a super stretchy cervix provided enough room for the baby to be born.  In open surgery, all the muscles in the abdomen were split apart by man made tools, from the outside to the inside. There was massive loss and replacement of fluids, a large chunk of an important organ was cut out and removed, never to be replaced.

I spent the next few days in hospital, sleeping, reading, waiting for my bowels to open again, and trying desperately to eat something.  Eating was the major thing that was going to aid my recovery, but it was simply the hardest thing to do because of the seemingly relentless nausea.  This next hurdle, I shall talk about in my next post.

After my subtotal colectomy

I opened my eyes and immediately I felt several people around me holding me in position on the bed. I felt a rush of incontinence, and a nurse spoke to me. "Ellen you're out of surgery, you've had quite a lot of your large bowel removed."  I remember feeling relief. I may have soiled the bed again, but that must mean I still had function and they hadn't had to put in a stoma. I would still be going to the toilet normally after all.  People bussled around me, changing the sheets from under me. I looked at the clock, and calculated it was about for hours since I'd gone into theatre. I wanted to let my husband know I was out.

The next thing I know I was being wheeled on to a ward. My body has been put into the "lazy W" position. My knees, were up, feet down, and my head and chest were raised. This is the best position when when trying to rest the abdomen. I had wires attached to my chest; monitoring my heart, a tube hooked over my ears and across my nose; for oxygen, a tube dangling from between my legs; a catheter, and a drip in each arm. I was very drowsy, and thirsty.

The nurse came up to me and explained I was out of surgery. She put a lead in my hand with a button on it. She said if I press the button, it would give me a dose of morphine for pain relief. I could press it every hour.

I asked if my husband knew I was out.  I can't remember her answer. She gave me a sip of water through a straw, and put the glass on a table that was lower than the bed and I couldn't reach because the rails on the bed were up. I looked at the clock. It was ten thirty in the evening. In the bed opposite me was a girl, who looked a similar age to me. She must have come from theatre 2. She'd been put in the same position as me. Her boyfriend was with her. I wondered why my husband wasn't.  I layer discovered her boyfriend worked at the hospital so was able to come in, out of visiting hours. My husband I found out afterwards had not yet been told I was out of surgery and my whole family were worried about how long it seemed to be taking!

The night passed in a haze. The nurse seemed to be on her own. She spent all night carry carrying out observations on us - blood pressure, temperature, pulse. In between times she was complaining to someone about how she was on her own and something needed to be done about the staffing issues.
  There was a lot of pain high up in my chest. It hurt to breathe. I was thirsty, and an alarm kept going off if Moved. The nurse kept shouting at me to breathe in through my nose. The alarm was my oxygen levels or something. I don't think there was anything wrong with my oxygen, it was just the tube thing moving away from my face.

I felt very dizzy and sick, and I quickly discovered it was the morphine button doing it. I had an epidural in still. I decided that was enough pain relief f2f or me. I was used to pain, but I just can't stand feeling nautious!

Finally morning came around and one of the surgeons popped in to see how I was getting on. She smiled in a kind and caring sort of way. She told me the operation was successful and they had managed to join the small bowel to the sigmoid, so there was no stoma. Then she called over to the nurse in a rather brash and annoyed tone "Nurse this patient doesn't look very comfortable, she seems to be in a lot of pain.  The nurse was immediately on the defensive "I told her to press her button!"

Now I know I hadn't asked the nurse for anything, but somehow I had felt a little neglected over night. The surgeons words to the nurse confirmed how I felt. Although the nurse had been taking my observations - blood pressure, temperature, pulse, she hasn't ensured I was as comfortable as I could be. The surgeon simply moved my bed position so that I could breathe more easily, and it made such a difference.  There was a lot of air within the cavities of my chest and abdomen as a result of the surgery and it felt like chronic stitch. Simply stretching out my chest so that I could breathe more freely was all that was needed, and not necessarily an  hourly shot of morphine.
I think this illustrates the need for more nurses on the wards. Whilst the nurse on that night was doing her most important tasks - observations and providing medications where needed, she was too stretched to do the fundamental thing that we expect of a nurse and the very reason people want to go in to nursing -  to provide comfort and care! I was to be on hospital for the next four nights, and this problem was something I was going to encounter time and again.

Going under General Anaesthetic

The surgery didn't just happen to me. I had been consulted along the way. The surgeon had explained I had two options; to do it laparoscopicly, which would mean two small inscisions in my abdomen, and they do it via a camera, or to do it as open surgery, which would mean a larger cut. She said the camera was excellent, but nothing compares to looking with your eyes and feeling with your hands, and she wanted to ensure whilst she was in there, she removed all the diseased areas.  To me, the only difference it seemed to make was how bigger scar it would make, I would be asleep for it either way.  I said I'm happy with it being open surgery, my bikini days are over after two children anyway. She simply smiled and said they do there best to be neat.

I was also consulted about anaesthesia.  The anaethitist came in and explained that he liked to put an epidural in whilst I was still awake, so that he was sure it was working well, and then I would be put under General. He asked if I was ok with this, and whether I'd had any adverse reactions to anaesthetics. I told him I'd never had an epidural and the most I'd ever had was local anaesthetic before. He seemed a little surprised at this. I remember making the odd joke, trying to put myself at ease as I was feeling quite anxious. He did not laugh or even crack a smile during our little meeting. He was a very serious man. I guess anaesthesia is after all a very serious job to be performing.

I was left alone again for a couple of minutes, and then another member of the anaesthesia team came to collect me. He was a tall man with a very kindly face. He spoke with quite a strong devon accent, very gently and quietly. He was in his scrubs and I remember thinking how clean he looked! I suppose you need to be pretty clean if you spend your working hours in a surgical theatre.  He pushed my bed through the hospital and into a lift. All the time he made conversation with me. Asked me what I did for a living, if I had children. How long I'd had crohns, whether I'd had surgery before. He put me completely at ease.

I went through a door with a sign above it; Theatre 1 and I felt a pang of fear. This was it. No going back now. Through the door was a sort of atrium, with a whole team of anaethitist's there. The serious man from earlier and another man and a lady. I had to sit on the side of the bed while the epidural went in, and the lady chatted to me about my children. I felt very  at ease. Then I had to lie down. I was told I would go to sleep and it would feel like I'd only been asleep a few minutes but it will have been hours and the surgery would be done.  I don't remember much else. I can't remember if they put a mask over my face, or closing my eyes. The next thing I remember was walking up in recovery.

waiting for surgery for five days

I spent the next five days waiting for somebody to tell me that they were going to operate. I was in a private room at the edge of a ward, with mainly old people, at least one of whom was suffering with dementia. I was taken up to the ward in the middle of the night. It seems movement of patients between wards happens at night when the corridors are quiet.  I have never felt more like a piece of furniture. The porter who moved me checked I  was the right person by reading my name to me off a sheet. He mis-read my name, which I corrected him on, but then continued to call be by the mis-read name.  Him and the other porter then chatted away as they pushed me through the hospital, as if it was an empty bed. I was pushed into the private room, and none of the nurses said anything to me about where I was and what the plan was.  Two ladies kept calling out in the night, one of whom kept trying to get up to "catch a bus" and had to keep being reminded that she was in hospital.

At the time I was annoyed because nobody seemed to be telling me what they were going to do with me.  In hindsight, I realise that nobody knew what was to happen. I was on a list, that was constantly changing depending on how priorities changed.

In the five days a lay waiting in my little room, I Felt a fraud. Now the obstruction was clear, I Felt very well, and just sat around, reading a book, watching telly, and waiting for visitors to come.

I expected my consultant to come and see me at some point, but he never did. Finally, after five days, a surgeon came in to see me.

She explained that the scans showed considerable strictures, and surgery was the only option. She drew a diagram showing the areas that need to be removed. She also said that from the scans it looked urgent, but looking at me, she was in two minds because I looked so well!

She went away for a few minutes, and then came back and said she was going to try and get me into surgery that afternoon, so as from that point I was nil by mouth.

I felt nervous then. I had never been under General anaesthetic before, and this was major surgery. I tried to get my husband to come and see me in case I went to theatre. He had a busy day at work,and couldn't get away. This made me even more nervous. What if something went wrong and we hadn't seen each other?  It turned out I didn't have time to be nervous though, as within minutes the anaethitist was in talking to me and then, I was signing forms, and being wheeled down to theatre! All of a sudden, it was all very real!

An in-patient at the hospital

I had now been in hospital for 24 hours.  I looked somewhat of a state by now. There was a
Tube dangling out from my right nostril, I was in incontinence pads and a backless hospital gown, there was a saline drip going into one hand and a cannula in my other hand for other intravenous requirements and another cannula left by the ambulance men.  My husband came back, thankfully with a clean pair of pyjamas.  I was so worried about how he might see me now with a stoma and a plastic bag full of poo constantly attached to the outside of my body.  I know a man who had a wife with crohns. She needed a total colectomy, but he didn't want her to have it because of how she would look. She didn't have it, and she died.  It turns out I didn't have to worry about this at all. My husband didn't care about such trivial things. He just wanted me to be alive, and most of all, without pain.  He even managed to lighten the mood by taking a picture of me on his phone in my hideous tube-wondrous state and then threatening to text it to his mates!

My consultant popped in to see me also. He had obviously only just got in to work for the day and had been asked to come straight to me. I could see him struggling to remember my case as he spoke.  When we last met he had been suggesting surgery, and I had probably seemed a little reluctant. He said, from what he remembered, the portion of the gut from the rectum to the sigmoid was free of disease, so he thought it unlikely I would need a stoma, just a resection. He said he would get me prepped for surgery, by prescribing iv antibiotics, and keep me in on a low residue diet. He would make sure the surgical team knew to do all they could to keep up to the sigmoid.

This was great news. They weren't going to just send me home again, they were going to keep me in until they could get me into surgery - as an urgent case, but not an emergency case.

I was moved up to a private room, on a ward full of very old people, some with dementia, but I'll save that for my next post.

clearing the bowel obstruction

Firstly, massive apologies for such a ridiculously long time between posts. I started back at work and seemed to run out of time!  So I left my story at the point I was about to go in for an urgent total colectomy.

There I was, laying on my hospital bed, tears pouring down my face while I let the news of my predicament sink in. Oddly enough, somehow I Felt that it was something I had done! Like I had not taken my illness seriously enough, and if I'd managed it differently, then I wouldn't have got this bad!  Of course this isn't the case, but it's odd the short of things that go through your mind at a time like this.  I had no more time to think about this, as suddenly two nurses came bustling in with the tube for my nose I had been warned about.

It was a long tube that had to go up through my nose and down the back of my throat right into my stomach. As one nurse pushed the tube, I had to drink a glass of water, so that as I swallowed, the tube could go down. Well, despite telling them minutes before that I wasn't sure such a procedure was necessary, the second  I began to swallow water, l was heavily sick, with a nasty, fecal smelling liquid.  It went all over me and the bed, and they put a bowl under my lap, all too late.  Again, oddly, I was apologising to them - as if I had had too much to drink or something else self inflicted.  Once the tube was in my stomach, one of the nurses, attached a  syringe to the end of the tube and aspirated off the rest of the fluid in my stomach. There was a surprising amount.

I had to remove my pyjamas, due to the mess that had been created, and the bed had to be changed, and then I was left alone in my hospital gown with my saline drip, and my mobile phone.  I texted my husband, my mum and my sister with the latest news about surgery in just a few hours and  then, I texted a work colleague to tell them, so they knew I wouldn't be in in the morning!

Then, the floodgates opened! Massive, completely incontinent diarrhoea! It kept going through the night, and I discovered that hospital incontinence pants are brilliant! Every time I went to the loo, I thought "tonight is the last time I am ever going to go to the loo conventionally. It was a weird feeling. I was sort of sad in one sense and relieved in another.

Nine o'clock in the morning came, and four surgeons came into my room. They asked how I was feeling and I explained I was feeling very much better since the uncontrollable  diarrhoea over night. The head surgeon felt my abdomen, explained that the x-xray showed three strictures in my large intestine and pressed where each one. Was. He then said that the blockage has obviously been cleared, and there would be no surgery today.

I just looked at him blankly.  "No surgery today? When will it be then?"

He was already half way out the door by now. He simply shrugged his shoulders, muttered about it depending who was more urgent on the waiting list and walked out.

I was completely dumbfounded. And now had no idea what the next step was. The next nurse that came in also had no idea, and had to chase the surgeons down the corridor to find out what the next step for me was if surgery was no longer happening today.

I was quite worried that this meant I was about to be sent home after all this.  Only to have it all happen again in a week's time. It turned out that I didn't need to worry about this. As I was to be in hospital for some time yet!