What people with IBD should know

I am often asked, “What would you tell someone recently diagnosed with IBD?” So, this is what I think you should know! Look out for clickable links in this blog, leading to more detailed information! For many, a definitive diagnosis is a massive relief after a long period of being unwell. This does not mean that acceptance is easy, after all, you have just been diagnosed with a chronic disease which has no cure. Do NOT panic, we’ve got this, life is not over! It is worth pointing out that no two IBD patients’ lives are the same. The disease does not always manifest in the same way, and the fact that a treatment works for one person does not mean it will work for another. This makes IBD notoriously difficult to treat. That said, some IBD patients may have one flare, find the right medication straight away and never have another, and that is fantastic! For the rest of us, being diagnosed with Crohn’s Disease or Ulcerative Colitis may mean some lifestyle changes and som

The hospital diary - resection and ileostomy

I made the decision not to declare online when my surgery was. Partly because I don’t want the nosy people pretending they care and partly because the people that actually care then worry and want updates and I know from previous ops that I make a very grumpy hospital patient and will just ignore people, making them worry more. I cannot put in to words my hatred of hospitals. I have been in them and been tret like shit in them far too often and for far too long. It’s best to keep people away so I can cry and feel sorry for myself in peace.  

When I’m in hospital, all I want to do is go home… 

Operations genuinely do not worry me. I’ll do what I have to do and don’t worry about what might go wrong because let’s face it, things might, but worrying about it won’t stop it. I have had complications with or after all my surgeries so far so am prepared for every eventuality. 

To find out how I got to where I am now, please read my previous blog ‘forever in limbo’ here

Following on from the above blog… I had the barium X-ray, the pain whilst the barium was forced through my intestine was horrendous. I very nearly cried and I am no wuss! I got a letter from the consultant stating that the X-ray had identified 2 very tight strictures. That was it. So I rang the secretary who informed that I would need to call back on July 10th as there would be a meeting on July 9th to discuss it and decide what happened from there.  

I was put back on Prednisone to tide me over and was awaiting the news that my strictures could be dilated so I could start the Imfliximab and hopefully get into remission. Happy days! 

I didn’t call the surgeon on the 10th because he called me on the 9th. "As you know we were discussing whether we could dilate your strictures without having to operate. The answer is no."

What the?!

Having surgery was not even on my radar! Certainly not for the strictures anyway! That was NOT on my list of ‘things to do’ this year! I genuinely hadn’t even considered it as an option! Not only that but he would like to admit me as an emergency and have me in within the next 3 weeks. He explained it could get complicated because I already have a Jpouch and one of the areas of narrowing is at the entrance. He will obviously try to save my Jpouch if he can but can’t give any assurances that I won’t wake up with an ileostomy. A few months ago this would have been the worst news in the world and I would have no doubt spent the next 5 days in tears, but, thanks to the online IBD community, I think I’m going to be alright. 

I asked if it had been clarified yet whether the strictures were due to Crohn’s or scar tissue. He said it looks like Crohn’s. It looks like inflammation rather than scar tissue which makes sense to me as the pain in my small intestine comes along with the Jpouch pain, and as far as I’m concerned, having ulcers in the pouch surely means Crohn’s disease as UC does not affect the small intestine and that’s what my pouch is made from! I don’t know why I can figure this out but no one else can?! 

Anyway, so the surgeons secretary called me on the 10th, they have booked my op in for the 16th but I will be admitted on the 15th as I need to do pre op stuff and bowel prep ready for the morning. I am the first on the list and the theatre has been booked for 6 hours. Seems like a long time when you consider the pouch only took 8 hours and takedown surgery about an hour, although I suppose I should be grateful to know that at least they won’t be rushing my op and you never know what will be found in there and what needs to be done. 

I’m a list fan. I had a list of things to pack. A list of my favourite things to eat which I won’t be able to eat for a while post op. A list of thing I can eat after op. A list of all the things I need to buy on the previous lists… 

I also had a mad rush at work. I set on a new staff member Monday and by Wednesday I have declared I’m leaving her to fend for herself! A lot of planning and work went in to a structured training plan and I also had to hand over client accounts to my boss who is officially on maternity leave and now covering my work. This could not really have come at a worse time! It also means I now won’t make it to the festival that was the only plan I had all year. MASSIVE ANNOYANCE. 

I spent the weekend eating my favourite food with my favourite people and doing my shopping. I spent Monday trying to organise my workload which I was still doing from home late Monday night!

Because I am not logging the events of my time in the hospital live on the internet I have decided to diary my stay and upload it to my blog.  

I hope to log some stuff every day and do not intend edit it before I upload it so I look forward to reading back my drugged up ramblings and seeing how coherent I am. 

Day 1:

Admission (the hospital kind, I’ve not been naughty) 

I woke up at 5.40 and laid in bed checking Facebook. I got up at 6, got washed, dressed and packed my case (due to lack of time yesterday)! I fed my dogs and tortoise and took my meds, it kinda felt like I was going to work apart from the suitcase packing…

I don’t pack lightly. I HATE hospitals and intend to be as ignorant as possible while here. I have my laptop with series 1-4 of Game Of Thrones on. I have a notebook in case I can’t be bothered to turn on the laptop. I have a book I probably won’t read if the last few ops I’ve had are anything to go by. I have always been far too tired to concentrate on anything like puzzles or reading. My bags were hidden on the oven so the dogs didn’t see them. I didn’t want them to know. Silly? Maybe. Bothered? No. Those dogs ARE my life. 

I washed the pots, I put fresh bedding on because I’m having a new bed delivered and put up while I’m away and my mum has a broken finger so can’t be expected to be changing my bedding etc. 

I then spent half an hour laid on the sofa with the dogs. My Ginster knew something was up. He’s been moody with me. I made him lay with me anyway. I can’t think of anything in the world I wanted to do more than cuddle my dogs.

My dad arrived at 8.30. I tried to kiss the dogs and just leave but instead I cried my way out the way house. I’m also trying my very best not to cry about it now. My mum is having them while I’m in hospital. She’s also having me when I get out. I wasn’t going to allow it. My usual ‘I don’t need your help’ facade, and then I remembered that I can’t pick the dogs up or the gate to let them out… I also realised that I’m sure my mum would like to feel like she is helping her daughter when she needs it and that in reality, I could probably use the help. So, the stubbornness is on hold for now. I will be looked after. I have already delivered her all the food she will need to make me and made sure it’s all minimal effort.  

I went to fetch an internet dongle because the last two times I have been to this new hospital, I have had no internet access on my phone at all, then we set off for the hospital. On the way the surgeon’s secretary rang me to tell me that she needed me to come in to be admitted early. I need to be here for 7am tomorrow. I tell the secretary I am on my way now to be admitted today for the pre-op and bowel prep… ‘Oh, of course you are, silly me! I panicked when I saw 10.30 because you’re first on the list’. 

"I hope the surgeons smarter than his secretary. "
Those were my dad’s words but also my thoughts…

I arrive to be admitted. There is no bed for me. I have to sit in the day room until one becomes available. I’m already annoyed! I use this time to set up my new dongle. I need to do this as my phone has absolutely no internet access. I can ONLY send text messages when I have roaming on and I have absolutely no idea whether this is included in my contract. I assume not and that it will cost me a fortune. I’m more annoyed now! The dongle has no signal either. Yep, you guessed it, even more annoyed. My dad ends up leaving to fetch yet another dongle. This has ‘some’ signal which keeps dropping out but some signal is better than no signal. Already today I have spent £60 on internet just so I can catch up with my belly peeps from time to time and maybe do the odd bit of work coz I feel lost without both. On the plus side when I leave this shit hole I will have a whole lotta internet to use. Maybe I’ll take up watching porn.. Or streaming explicit videos and making people pay to watch. Might make me some of my £60 back…
I looked out of the window and I see this…

I might have signal down there! My mission is to find out how to get there and test the theory. There is a lift so even if I have two drips and a catheter, that little haven is doable! It’s only a haven if it has signal! If it does then I will reside there for the foreseeable future whenever possible! Straight outside the hospital entrance I have signal but it disappears when I walk through the doors! I don’t fancy standing out front with drips and catheters in my PJ’s but let’s see how desperate I become!
I went to REMIND the ward staff on reception that I AM STILL HERE at dinner time. "Do I have to buy my own dinner seen as I’m not officially here?" 
You could see by his face I hadn’t crossed his mind but my request was met with the correct response. ‘We will sort you some dinner’. Then the cheeky little fuck tard had the cheek to ask me why I was even here when I wasn’t having surgery until tomorrow. Way to make someone feel unwelcome! I explained that it was an emergency so I hadn’t had time for a pre op and that in fact if it was up to me I wouldn’t be here a second longer than I have too. That ‘nurse’ is in my bad books already…
I did get fed, if you can call it food… A stale pork sandwich and a stone cold and very dry chocolate brownie… My favourite!

3pm someone bothered to come and see me and ask a few of the obligatory questions and listen to my chest. I should have a bed within the hour he said and then he buggered off. It’s 3.48 now and I’m ready to punch someone in the face. I could have been at work. I could have been at home with the dogs. Why was I here at 10.20am? WHY?!

I’ve had far too long to sit and think about how stupid this situation is today. 

I have been looking at it like this;

Tomorrow at 8.30am I will be taken for surgery. The man I just saw said I am having a small resection and pouch revision. I didn’t know I was having a pouch revision… Maybe that’s why I have a 6 hour op? He does not know whether I will be having open surgery or laparoscopic. I do not know whether I will wake up with a bag or not. I know nothing!

And why am I doing this? So that I can start Imfliximab (Remicade) that I have absolutely no guarantee of working! If I wake up tomorrow having just had a resection I will then have to wait until I’m fully better before starting Imfliximab. That is weeks of me still being in pain and this flare getting worse and worse because I am taking nothing to get it in remission because I will have shortly tapered off the Prednisone.
If I have pouchitis, I get three infusions of the Imfliximab and may not actually get funded for anymore. So when/if the pouchitis returns, I will need the pouch removed anyway.

If I have Crohn’s I can start Imfliximab and if it works, great! When it stops working, I can probably try Humira (Adalumibab) and when that stops working I need to be hoping there’s a new Crohn’s med I can try or I will need the pouch removed anyway, although I may have had another good few years in remission in the meantime!

This is all based on Imfliximab even working at all (I live in hope).

I don’t know what would be the better outcome. If I wake up and my pouch has been removed then all areas that have currently been affected by Pouchitis/Crohn’s and strictures will have been removed. That should mean no more pain (until the next flare). That may sound a little ‘glass half empty’ but since being diagnosed with IBD in 2007 I have never really experienced a long period of remission and cant’s imagine this starting now.

I believe I have Crohn’s. As stated before there are ulcers in my pouch which is made from small intestine. I know that UC does not affect the small intestine. Pouchitis does not create ulcers, just inflammation. I have ulcers in something made from my small intestine. Must be Crohn’s no?! 

Anyway, I have bored myself and you enough. I’m now on 4.20pm and I have no doubt I will be back later to complain about something else so for now I’m going to put my laptop away. I think I hear food being prepped outside (the day room is across from the kitchen) and I have no idea what time I can’t eat from because I’ve had no pre op or info since I’ve been here other than learning I am having a pouch revision! 

Bye for now!



5.45 I got a bed, took over 7 and a half hours to get a bed! BUT I have a bed! The stoma nurse came around at 4.30. She was by far the most useful person I’ve met all day! First she marked me up on both sides for in case I need a stoma (beneath my tattoo, very kind! :D), she again confirmed that yes I am having pouch revision, she said it’s no longer possible to access the haven I saw out of the window earlier and she also confirmed that yes, I can have some tea. Hoorah!

So, back to my day room… dum de dum… had some pretty overcooked bacon and leek pasta for tea. It was homemade though so that’s 1 plus point for the goo. And then my bed was ready! But on the move I missed pudding...

Filled in the obligatory forms, got weighed and had bloods taken. All the ladies on the ward came round in turns to say hello (have a nosy at me, see how ill I really am) and have a chat which was sweet. Of course I am the youngest by far as always! Lady in the end is screeching and crying that she wants to go home. Vic jokes, am I sure I’m not next to a mirror. Little does she know that, that is exactly how shit normally goes down when I’m in hospital.

I had a wander out through the front door to have a quick belly catch up and then came back in and got my PJ’s on, had a wash and made myself at home. I spent too long in the bathroom looking in the mirror at the stoma marks and felt a little bit sick for the first time. Fear of the unknown…


Tried the dongle from my ward bed, not a sausage! I don’t know what I’m going to do without my bellies. I feel lost already. It’s highly doubtful I will be traveling outside tomorrow for a catch up. I’ve been trying to organise everything so that it’s all reachable tomorrow without pulling anything or trying to lift anything. Remembering how ill I have been in the past is pretty depressing and not something I ever think about. This hospital smells like my old one and I don’t like it.

Had an ECG, told I’m nil by mouth from midnight, asked for a pee sample, MRSA swabs done and the docs will be round to chat and fill forms in later. It’s already 9.30. I could have been at work all day and still done this! Tut.

Hot chocolate and as many biscuits as she’s willing to give me (4)! Someone’s snoring already so I text my mum to say I forgot ear plugs, I don’t know how I forgot, it’s one of the worst things about the hospital the lack of sleep! 

I’m shattered now, it seems like it’s been a really long day. I’m in a lot of pain but fortunately the nurse forgot to take my pain meds away yet (I always have a row about this, they always win). 

Funny ward this. It’s a bowel ward yet there are 8 beds to 1 toilet. Everyone hearing me go for a poo is not my idea of fun. In my normal hospital there’s a wash area with a row cubicles with basins in, there isn’t one here… 

Anyway, that’s enough of the observations for tonight. I’m listening to all the ladies gassing about everything and nothing and it’s somehow now 10 o’clock already. It would be nice to go to sleep but I still have doctors to see whenever they feel like rocking up so… One narky Sahara coming right up!

Day 2: Op day. July 16th 

It’s actually the 24th :/ 

I am trying to piece bits of info together from notes I have made on my phone and the odd message I have sent!

Why do they insist on taking your obs (observations: Blood pressure, heart rate, temperature for those of you are unfamiliar) every few hours when you haven’t had surgery yet? You are keeping awake a very irritated lady!

4am, rudely awoken to stick my canular in and take some bloods! Cheers love!
Minutes later… "Sahara, you’re going to hate me, I have just thrown your bloods in the bin, I’m not going to lie. I need some more, sorry darling." 
I couldn’t be mad, she was far too mortified lol.

6am. Awoken for a nurse to come measure me up for my sexy stockings and bought me my sexy gown. Heaven knows why this had happen at 6 am when my ops not til 8.30… Totally beyond me!

I got up and walked outside the front of the hospital to put on an update on the belly group about being really busy before anyone notices I’ve fallen off the radar.

I’m a regular poster so people are bound to notice something fishy going on soon enough! I’ve also had to stop my #100HappyDays because I can’t really get any pics in here that don’t show where I am in all fairness wouldn’t have thought of anything yesterday, never mind today and I’m certainly doubtful about making it outside again, so I updated my personal Facebook too.

I’m back in bed now, ready to go back to sleep and a nurse just came to measure for my stockings… I told her they already did and she asked if someone had already done a checklist. I said no so someone will be back to do that shortly. Communication is obviously great here. Bye bye sleep. I can barely keep my eyes open!

In just a couple of hours I will be going under general anaesthetic. I quite like it in a weird way! It’s weird how fast you go! 

I still haven’t seen the surgeon so am still full of questions. I am assuming I will wake up with a drain and catheter but I like to be prepared for such things. My aim is to get up and mobile as soon as soon as I feel well enough to do so without pushing myself too hard or too fast. After losing the ability to walk after my first op, this sticks in my mind. 

I just heard someone arrive at reception that’s here to see me.

10 minutes later and she still hasn’t arrived at my bed so I think I’ll close my eyes. 

Nope, someone came to do my checklist.

And it was the anaesthetist that was at reception but she’s beggared off elsewhere. 

I asked whether I would see the surgeon and get too ask all of my questions. She said she thought and would hope so but could not promise. Sam her name was. I remember because she is nice and I have seen her a few times since. 

The ladies on the ward are up and gabbing already and one was on the way to the loo but stopped for a chat.. I am taking my wash bag to get clean and dry shampoo’d and into me theatre gear!

7.40am, anaesthetist came – still not made this freshen up! I will be having an epidural so looking forward to a pain free tummy for a change! 

NOW, back to these socks and a wash…

NOPE!! Specialist came! WAAAHHH!!

He drew me a picture of what they could see on the scan. There are two areas of stricture. One really long one which is the intestine leading to the Jpouch and then situated very close to that another much shorter and tighter stricture which looks like it is active with disease from scans. Removal of these may mean the intestine no longer reaches the pouch. The pouch may also need revising. 

Explained why this is complicated and why they cannot tell me whether I will wake up with a temp ileostomy, permanent ileostomy, Jpouch intact, or removed, revised, whether they can carry out strictureplasty, anything really until they get in because they just don’t know how bad it is and what I will be left with. They will be checking the rest of the small intestine too whilst in there. 

Finally washed and ready to rock!

Now I have told everyone at every possible opportunity that has asked me the same questions over and over again about the Butrans patch I have on and as I am sat waiting to have the epidural put in I mention it again in a discussion with the aneastetists when discussing post op pain medication. Well yes apparently it did matter so it’s a bloody good job I mentioned it again. Glad someone looking out for me.. ie, me! 

I laid down after the epidural went in, and was disappointed when I just ‘woke up’. Where was my fun of counting down?! Huh! 

I was in recovery for some time apparently as my heart etc had been having a bit of a meltdown during the procedure. 

Obviously the first thing I did when I woke up in my oxygen mask was check around my belly. 

Yup, there it was, left hand side, massive stoma. Fab. I spend a while trying to fully regain consciousness properly and then ask the nurse when someone will be speaking with me about what was done, found, is this ileo permanent or temporary. Probably morning she tells me. She tells me its permanent but I have no idea who she is…
Back on the ward. Lots of text messages, cannot be bothered to respond. I am angry because I have no idea what’s what and I’m in awful lot of pain. 

They let me eat and drink on the ward straight away and I even had biscuits at bedtime! 

My mam and dad visited between 6 and 8. Unfortunately I have nothing to tell them. The nurse came round to check dressings etc when they were there so we all got to have a look at Porta (That's his name. He is going to be my Porta loo for quite some time) My god he was massive. No joke, it was like a big red peach stuck to my abdomen! 

There are drains and wires coming out of every orifice as usual! 

I've never had one hanging out me arse before though. That’s a new one!

Finally at 10.45pm my complaints of pain have been heard and I WANT TO SEE THE FUCKING SURGEON!!! A doctor AND nurse tried make me look stupid telling me I have an epidural. I know that love but the only thing that is numb is the whole of my fucking right leg and my left leg to my knee! The doctor came with an ice pack which completely proved my theory that where was absolutely no numbing to my stomach at all and a prescription is being written up for Oramorph, I have that at home and it doesn’t do shit! I demand they take the epidural out. I will NOT be able to walk while I can’t feel my legs. The nurse tries telling me you can never walk when you have an epidural and I tell her she is a blatant liar as my I have had one before when I had my pouch op and was fully mobile now get the fucking thing out. They do as they are told.

I’m worrying about the stoma. It’s huge and so cold. Worrying there’s no food making its way through here for a while. 

I text my mum in a panic about nighties, I DON’T OWN NIGHTIES!! I have PJ’s! The last time I needed nighties was when I was in for an op 5 years ago! All my planning and preparation and LISTS and I totally forgot the issue a catheter throws in when it’s hanging out your ‘floosie’.
Day 3: July 17th

7am and I ‘think’ I can hear my tummy gurgling. Hopefully that’s a good sign… My Oromorph never arrived last night… I was popping my own secret stash of tramadol instead. A nurse has just been to tell me that she has called the pain team but they don’t start til 9am.

When the doctors did their ward round, one of the surgeons that was working on me came and was telling me ‘You made us sweat! We had to get an extra surgeon in on the job. You were a mess’.
What does he want? A medal for doing his fecking job?! Coz they clearly don’t get paid enough do they? Now he wants a bunch of flowers and a bloody thank you note as well!

My pouch had been torn during the op so a TEMPORARY stoma had been created while the pouch healed. The plan is to be reconnected in 3 months, assuming the pouch is healed.

The pain team lady came early. I’ve got the morphine PCA up and the lovely lady administers a fair few shots to make me comfortable before buggering off.

My surgeon comes later and declares ‘I don’t know how you have been walking around and functioning for the last two years with the state of your insides’!
Coz I’m a hard bastard aren’t I… That and I had no choice coz my whinging had been ignored for quite some time. 

My mum and dad came for a 15 minute visit. I don’t really remember. I was off my face on morphine. I was throwing up bile before they left. I kept throwing up when they had gone. I was that out of it that I kept throwing up in the bowl, passing out and coming back round covered in sick having dropped the bowl on myself! That was two new nighties covered in vomit!


It’s taken months for me to return to my blog. I’m nearly 8 weeks post op now…
Anyway, back to the story! By the time I had been awake long enough to press the buzzer to alert the nurses you could barely see me or the hospital sheets for vomit. Two nurses held me sat up on the end of the bed while I drifted in and out of consciousness. I don’t remember them changing the bed but they did.
The whole day is pretty much a blur. I have vague memories of a nurse coming to do an ECG. Having an MRI scan and vomiting some more in the process and constant checks on my blood pressure and bloods being taken. I had an NG tube put in to remove the bile and stop me retching too. My bowel was so swollen that nothing could get through so only had one way out, which was up. This comes as no surprise to me as this has happened after every op I’ve had and you only have to look at my stoma to see the extent of the swelling. 

Some (no idea how many) hours later and I’m laid in the hospital bed surrounded by all the doctors I had seen so far plus a few! I could hear them talking about me, debating what was wrong, how to fix it and talking about how shallow my breathing was. I tried to breathe deeper so that they knew I could hear, but I couldn’t. They shone torches into my eyes, prodded and poked me, and shouted my name but I couldn't speak or move a muscle to tell them I could hear them. I'm not going to lie, I thought I was going to die. The team of people around me were panicking, and so was I. Being conscious but having no control over own body was terrifying.

FINALLY, I was brought back around after a few shots of Naloxone, straight into my wrists, which left some pretty hefty bruises! It was genuinely like the scene in Trainspotting - shooting back up the surface. As the morphine wore off, the pain was horrendous and I was screaming in agony. And then I was asleep.

The next morning I demand to see a doc to tell me what the feck happened yesterday! He tells me that the anaesthetist had overdosed me. It might just be my shoddy memory but I don’t remember seeing an anaesthetist after the general anaesthetic. Why would I have? Apparently they had filed a report that the wrong line had been put in and whatever it is that is supposed to stop the PCA administering morphine didn’t exist. It was the pain team woman who bought my PCA and connected me up so I’m pretty sure the error must have been hers…

Now, with my NG tube, I have one extra tube to the ones I already had.

Wanna play a game? Guess which comes out of where!

The docs try to persuade me to have the PCA back up. It’s not happening, I opt for being stabbed in the arm with morphine every hour instead. 

After 2 days of the NG tube and nil by mouth I’m whimpering and asking the doc to take it out. He had the weirdest way of checking for bile build up that I’ve ever known. He excuses himself for his next actions, puts his head on my boobs (his ears just underneath where my stomach is) and shook me from side to side.

Nope, there’s still plenty in there. It’s staying in’ and waltzes off!

In an attempt to shrink my stoma, a nurse pours sugar on him. This is the surgeons request… Didn’t work may I add, but apparently, sometimes it does!
I can’t speak when the NG tube is in. How come everyone else can? One word and I gag. My throat is sore and I am in a foul mood.
Slowly the tubes are removed. After 5 days the NG tube is removed too and I’m allowed to eat. It stays down, Porta starts to poop and we’re on the road to recovery!
10 days after the op and I’m allowed to go home. Well, to my mums to be looked after at least. Progress was slow. I was pathetic for a good few days but what do you expect when you’re 6 stone 4 with very little appetite and no muscle. I looked horrendous and I felt horrendous.
Not even four weeks after the op and I returned to work. Lounging around at home is enough to drive me insane.

I am now waiting for the X-ray to check my pouch is healed and all being well, I will be reconnected by Xmas.