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

UC diagnosis, ileostomy, jpouch creation and an ostomy reversal

This is a story written by a 21 year old, finally full of hope after jpouch surgery! It was never written for anyone else’s eyes. It was written because she needed to talk to but didn’t want to say the words out loud.

You have been warned. It is NOT a blog and it is also VERY long!
I am sharing it with you because I feel I should. I will not be in any way offended if no one makes it to the end…

It would seem I haven’t always written with as much honesty as I do today. In reality when it was written my relationship was already in tatters, maybe I just didn’t want to admit it.

It was August 2007 and I was being given a lift home from work. Diarrhoea again. It had been happening a lot lately. I went upstairs and got in bed. I must have been in bed for about four days before I went to see the doctor. ’Irritable bowel syndrome’ she said, and sent me off with some pills to calm it down. 6 days later, having not eaten anything for the last week and barely even having the energy to get to the toilet every time it called anymore, I rang the doctors again, who weren’t happy with having to make a home visit to see me.  Some more pills to try, herbal ones this time.

I think I only had one of those as the next morning my mum insisted on taking me to A&E. The pain had become unbearable, like being literally stabbed in the side every time I needed to go to the toilet. It seemed like the longest drive ever, only really half an hour but all the time, all I could think was please god don’t let me pooh myself! We arrived at A&E, thankfully without me having any accidents and were seen straight away. As soon as we were in the side room the wristband was slapped on me. Soon to become known as ‘the dreaded wrist band’. The next thing I knew a canular had been shoved into the back of my hand. Now, I know I wasn’t very ‘with it’ at the time but I’m sure I wasn’t forewarned. I must have seen at least four or five doctors and nurses, all asking me the same bloody questions. They decided a needed an endoscopy to get a better look at what exactly they were dealing with. I was plonked in a side room on the ward while I waited my procedure. The only conversation I remember having all day was my mum telling me to stop scratching my nose because I looked like a druggy. ‘What would people think’. I could very well have been mistaken for a druggy at the time because I was stick thin and white as a sheet having not eaten for the whole sodding week.
So, the endescopy. A small camera on a bendy stick to be inserted into my back passage and maneuvered around my bowel. I remember a strange looking man being right in my face, stinking of coffee breath, telling me to relax. Was this a joke? Did he want a punch in the eye? Thank god for the gas and the air. I had my hand on my stomach and I remember feeling the camera poke my hand from the inside. Oh my god, could it get any worse than this? Yes. Yes it could.

Ulcerative colitis was the diagnosis. Never heard of it. A condition that I would now have for life but was told should be easily manageable with different types of drugs. So now all we had to do was get it in remission with a steroid called prednisone that I was given intravenously. Within about a week, things were looking up and it was a good job because I’d had enough of the hospital and am sure so had my mum and boyfriend, Matt, who I had only been with a matter of months. The time came to be weaned off the steroids, but as soon as the dosage was reduced, back came the pain and the frequent toilet visits. So the dose went up again and when things were well again the dosage reduced. I was having no luck, if I wasn’t on the highest dose then I wasn’t well and I couldn’t live on such high dose steroids.

A stoma? Colostomy bag? I have no idea what you are talking about. A bag to collect my pooh that would come out of the bowel which would be bought through my belly. That is disgusting. Never going to happen. I was 19 and had a nice body, this was my idea of hell. They gave it a few more days but on September 7th it was time for my emergency op to have the whole of my bowel out and ileostomy formed.

I woke up to people running around me, controlling my pain and asking how I was. 10 minutes later my mum, dad and matt were allowed in to see me. The look on all three of their faces told me how bad I looked. I reached for Matt’s hand. ‘I love you’ I said. ‘Aww’ said my mum.

Within thirty seconds Matt had left the room. Hot, he said. Crying, I later found out. The next day I wasn’t allowed to eat, and I remember seeing my stomach for the first time. No, the bag wasn’t as offensive as I had imagined in my head. Probably because I was imagining some sort of big rustling Tesco’s bag flapping around my midriffs, but it was a bag all the same, and a see through one at that. I wasn’t allowed to eat until I had passed some liquid through the stoma. I had to show Matt my bag that day. It was so hard. It disgusted me so it was bound to be worse for him, I was roaring my eyes out as I lifted my nightie to show him. ‘ It’s ok’ he said. But it wasn’t. Not to me. I was disgusted.
I kept telling him he should leave me now, but he kept saying he didn’t want too. I was sure he just felt sorry for me and would go soon enough.

A doctor came to see me and informed me they had lost my bowel. He told me they are very slippy and whilst it was being cleaned after the op, it had slipped down the drain, they had the fire brigade out to look but it seemed it wasn’t going to be retrieved. The poor chap looked mortified, but I cant say I was bothered. It wasn’t mine anymore, it wasn’t as though they were ever going to give it me back.

I had just started to eat when I woke up on the morning of September the 11th  in so much pain, I felt like I couldn’t even breathe. I was whisked off for scans and it turned out I had an infection inside due to the fact I should have had a drain in my side to drain off any fluid and hadn’t had one put in after the op. They wanted me to sign some form for the op to clean my insides out but I was so off my head on morphine I said I needed my mum. It seemed like ten minutes later, she was there. The forms were signed and I was taken to the operating theatre for the second time. When I awoke I was back on the ward. It was dark and my mum and gran were there. They kissed me and said goodbye. I slept right through till the next morning to then be confronted by the drain. It looked so disgusting. I was sure that had to be it. What with the catheter and drain and drips they couldn’t possibly stick anything else in me could they?

Well yes, in fact they could. I needed feeding through another drip now. 7 days for 24hrs a day. I could not be unhooked for even ten minutes for a shower. It was around this time that I stopped Matt coming to see me. My hair was falling out in chunks due to malnutrition and steroids, my skin was spotty and dry and I was so thin I looked like a skeleton with skin. I just slept all the time for the next week. Matt would text asking if he could come and see me yet. I would just reply saying he may as well just leave me now, but he wouldn’t. He text one night asking me to move in with him! I said we would see at a later time. I thought he was just trying to prove he wasn’t going anywhere.

I was finally taken off the drip and was struggling to eat more than two mouthfuls of food at a time. The physiotherapist came round and asked me how I was at walking. I thought she was nuts. Had she mistaken me for some oldie? I said yes it was fine, so she asked me to show her. Holy crap. I couldn’t even stand up. It hadn’t crossed my mind at any point that I hadn’t moved since the drip went up. The catheter did my wee and my bag sorted my pooh. I knew my arms were weak as I couldn’t even sit myself up but this hadn’t even crossed my mind. They came back the next day and I walked to the end of the room and back. God I was pathetic. Not only physically but mentally I was drained. The only thing that kept me going was the promise that I could have everything reversed. The bag off and lead a normal life again one day. The first time I showered on my own was such a big thing, anyone would think I had just run a marathon with the size of the smile on my face. I let matt see me for the first time that night. He was so happy and I cried so hard when he left. Maybe he wasn’t going anywhere. Maybe he did actually love me enough. Time would tell. Slowly but surely, things got better and I was eventually allowed home six weeks after going in.

Even the stairs were a struggle when I got home and I slept a lot. I learned how to cope with the day to day life with the bag. I was 6 st 2, which is probably not as bad as it sounds as I am only 5 ft 1 but I looked terrible. It was slow, but progress was made and me and Matt booked a holiday with a coach company and in October went to Tenby in Wales for 5 days. I still wasn’t in full health and had a nap every afternoon after going a walk round the village but it was such a beautiful place. So small and quiet, I couldn’t think of a better place to go and not do much. When we got home I went back to work and we started looking for a house. I had an appointment to see my surgeon and was eager to discuss the reversal.

‘The reversal may make you infertile.’ this could not be happening. I had always wanted children. This was something I was going to have to discuss with Matt. Not easy when you have only been with someone five months. After a big discussion we decided we would try for a baby. I know it may sound stupid after such a short amount of time but never having children was not something I wanted to do and we had been through so much already that I thought we may have been strong enough to do this.

It was January 2008 and Trinnie and Susannah were coming to John Smedleys where I worked to make over some factory girls. Injecting glamour into the work place. I put myself forward, having been dressed like a boy ever since the operation I was up for a makeover and to be quite honest could use a confidence boost. The producer and a camera man came round and did some interviews. I made the short list and was taken to the main branch at Lea Mills with another girl, Lindsay, from our factory when Trinnie and Susannah came to pick their final few. They were determined they were having me. They cut off my hair and dressed me like an idiot. I got to keep the horrible clothes but after two months of continuing to put the weight back on that I had lost, they didn’t fit me anyway. I was back to my healthy 7st 12. I cannot deny my hair was thin and looking a bit shabby and the way they did it made it look full and thick, but the fact is I don’t have a hairdryer at hand 24/7 and the style was just not achievable at home. I felt even more like a boy now than I did before and when the show was aired in August 2008 it was cut to make it look as though I liked what they had done when in fact I had made it quite clear that I really wasn’t happy.

We moved into a two bedroom, private rented house in February. Now, looking back, it seems we may have jumped in a little too fast, but we were so excited, we didn’t really think of what could go wrong or that the estate agents might be so useless and never mend a thing. Our house is currently being taken over by damp, the wallpaper is falling off the walls, our boiler is on the blink and its pretty much just falling apart around us.

The lifestyle with my bag was getting me down. I suffered with leakages, sore skin and itchiness in hot weather and hardly even went out anymore. None of the clothes that would cover my bag up made me look good. I just felt uncomfortable and boyish all the time and it was taking its toll on my relationship with Matt, who was beginning to get mad that I never wanted to do anything anymore. The fact was, I just wasn’t comfortable as me anymore. I didn’t feel like me. We decided after much deliberation that I should go ahead with the formation of my pouch for the reversal. Me and Matt needed time to be couple. Go on holidays. Picnics. If I became infertile, that was something we would deal with then. I had my op booked in for the 16th October 2008. Now all I had to do was wait.
I had been to the doctors and complained about my periods. ‘Any chance you are pregnant?’ she asked. I suppose there might be. I left a wee sample and went home and thought nothing more of it. The next day was a Friday, only half a day at work. I left at half 12 and got in bed after dinner. My usual Friday routine. The doctors phone call woke me. ‘We’ve had the results from your urine sample, its slightly positive.’

What the bloody hell does that mean? In fact it meant one of a few things. 1, it was a false a positive. 2, it was a very early positive. 3, I was having an ectopic pregnancy. 4, I was having a miscarriage. Could I be at the doctors in half an hour? Yes I could. I put the phone down and hysterically rung my mum. She couldn’t hear a word I was saying through the tears but I finally got it across and she was on her way to come to the doctors with me. I didn’t tell Matt. I didn’t know what his reaction would be. Shock? Anger? Happiness? And let’s face it I didn’t even know anything yet so why get him in a state while he was at work. I would tell him later whenever I knew for sure what was going on. He came home before I had left. I was in a fluster and charged out the house. I can’t even remember what I said I was going back up to the doctors for. I waited outside my own house in the rain until my mum arrived. When I got to the doctors she still couldn’t tell me anything. I don’t know what I had to go back up for. I was to go back Monday.

I then had to go home and tell Matt who was playing on the Xbox in a world of his own that I was a big fat liar and the events of the day. I took another pregnancy test. Positive. We were going out that night to my aunties for fireworks. I had one alcopop and felt so insanely guilty, especially as I started to bleed more heavily straight after. Oh my god, its dying, is all that went through my head. I’ve bloody well killed it. The next night we went out for my friends birthday round our local pubs. I did not drink and made my excuses to leave early.

Monday morning I went back to the doctors. She arranged for me to go to the hospital the following day. So Tuesday morning, off me n Matt went and sat in the waiting room, dying for a wee waiting for my scan. When we went in the girl informed me, after seeing my bag ‘I saw you on the tele’.
Nothing could be seen on the scan. I was told not to worry. I may just be less than 5 and a half weeks, in which case it wouldn’t show up. I had a blood test and was told to come back Thursday for another. More waiting. All I ever seem to do is wait. Although I knew that even if I was pregnant it wasn’t stable due to the bleeding, and as much as I tried to stop myself I couldn’t help but hope that I was and it was going to be ok. I really really wanted this. I felt like the most important person in the world just at the thought of what I was doing. Growing something. Mine and Matt’s that only me and him could ever make. Nobody else could make the exact same thing we had. It was like magic.

I went back for my blood test Thursday. Matt could not get the time off so I went alone and in a bad mood because we’d had a row the night before and I’d slept alone, my head whirring with all sorts of possible outcomes. I have never been one for religion but I had found myself  praying a lot over the next few days. Back at work I could not concentrate. I kept clock watching. She said she would ring after dinner. When’s her dinner? I went to the toilet and in my pad, there it was. A big clump, I believed to be the pregnancy sac. I texted Matt. He said not to worry., it was probably nothing. That made me feel a bit better. How did I know what it was. Probably my mind getting carried away. Then the phone call came, informing me that on Tuesday I was with child, and today I was not. I tried to hold it together while I told my boss I was leaving to speak to Matt but I couldn’t. I left the factory in floods of tears and rang my mum and then Matt on the way home. I sat in silence on the sofa, Matt was back ten minutes later. We sat, after saying very little and cried together. After that I didn’t want my op, I wanted a baby. Matt stood his ground. I’m still not sure now why he said no. whether it was because he did not want one or he thought it was right for me but at the time I hated him.

On the morning of the op there were no nerves. Just the thought that when I woke up it was unlikely that I was ever going to conceive naturally.

I had an epidural, it was great. Horrible when it was going in but luckily a lovely nurse cuddles and kissed me while it was going in. I woke up in intensive care after about 8hrs in the operating theatre, totally pain free. I was moved to high dependency the next day and on to a normal ward one or two days later. I had a few problems with pain for a few days once the epidural was out but was ready for going home and excited by the prospect of going home Thursday, 1 week after the op, which the doctors had said would happen. When Thursday came they did not want me to go. Wanted to try and regulate the output of my stoma using loperamide (Imodium) whilst I was still in the hospital. After threatening to discharge myself, they said I could go home if I came back in the morning. Fine by me. My own bed and Matt was all I wanted.

I was discharged properly Friday morning and headed home for my recovery. The doctors rung and said they needed a blood test and arranged for someone to come round and do it. My weight was back down to 6 stone 4 and I hadn’t the energy to walk as far as the doctors. I became very unwell very fast. I couldn’t eat much and would have to catch my breath after just going from the bedroom to the toilet. When I stood up I was dizzy. Low blood pressure, fast heart rate and high potassium apparently. It had been high when I left the hospital only no one had told me and I had come out eating pretty much bananas and tomato soup and nothing else. Some doctors came to my door at 10 o clock at night and sent me in an ambulance to the hospital in fear I may have a heart attack. After about five and a half hours of being pissed around in the hospital I got Matt to fetch a wheelchair and take me home. The nurses were mad. Said I could have a heart attack and that my liver and kidneys weren’t functioning properly. They looked as though I was an alcoholic. I didn’t care. I wanted my bed. After another day or two and feeling no better the doctor wanted me to go back into hospital. I said I needed to prepare myself and wasn’t going in today. Stubborn or what. I had tried my best. Had my dad look on the internet and had lists of foods high in potassium to steer clear of and foods high in salt which I need more of, due to having no bowel. The next day I went back to hospital. It was Saturday so because I didn’t have a note from my doctor I had to go to our local little hospital thing and repeat what the doctor had said so I could go straight onto a ward rather than A&E. I was feeling a lot better but I knew no one would believe me so I kept my mouth shut. I had worried everyone enough and thought it was high time I stopped being stubborn and did as they asked. After blood tests and ECGs and blood pressure checks the doctor said I seemed fine and didn’t need to be there. So there you are. I was right, I could do it myself. I felt like I had wasted their time but was glad I could now go home and no one could nag me about letting myself die. After that it was back to the slow and steady recovery again.

I never got back to my previous weight at 7st 12. I only managed 7st 4 and that where it stuck but I looked normal again. Then I had to wait for a pouchogram to make sure everything had healed and finally I got my operation date for July 16th this year.

I saved up for my bills for whilst I would be off work and made sure I had plenty of food at home and to take to the hospital. This time, I was determined I wasn’t going to lose weight. I also bought a whole new wardrobe of clothes. Nothing fancy to go out in but everyday wear. Vests and T-shirts, jeans and trousers. I couldn’t wait to be able to throw out all my small boys t shirts and other unflattering clothes.

I woke up from my operation surprisingly perky and was eating straight away. Matt and my mum were at the hospital waiting when I woke up as always. I had a few hours with them before settling down for some sleep. The next morning I did my first pooh like a normal person and couldn’t help but laugh at my first trump in 2 years. (Funny, the first time my stoma trumped I cried!) The doctors came round that morning and said I could go home that day. I was shocked to say the least as my consultation with the surgeon had informed me that I should aim to be out on the Monday providing everything went ok over the weekend. I did not unpack my bag when I got home, I was sure it was too early and didn’t want to jinx anything. On the Saturday I had breakfast and dinner and then threw it back up. By Saturday night I was suffering with a great deal of pain in my stomach. I was waking up every half hr Saturday night, groaning and screaming with pain and being sick. I felt a little better in the day Sunday but still couldn’t keep anything down and the pain had returned by Sunday evening. My stomach was massively swollen and rock hard. Matt had called my mum who came round at some obscene time in the morning to see if I was ok, but obviously still couldn’t do anything for her stubborn daughter.

The district nurse came on Monday to change my dressing and had rung the hospital and an ambulance for me to be re-admitted. I knew this would happen. Lucky I hadn’t unpacked my bag!  I was taken in the ambulance with my mum and Matt back to the hospital mid-afternoon. I had an X-ray and CT scan and was informed my bowel had fallen asleep. Quite a common occurrence after bowel surgery apparently, although I had never been informed of this. I was hooked up to fluids and not allowed to eat. I had NG tube stuck up my nose, down my throat and into my stomach to remove any bile that may have been just lying around in there. Again, everything started getting on top of me. I was tired, lonely, bored and hungry. Matt was being a jerk and wouldn’t come and see me whenever I was narky on the phone and constantly heaving from the tube in my throat. I kept myself moving around, taking the drip in the lift and outside to the small garden area for a fag a few times a day. I was in a side room because I’d previously had C-diff so the only company I had was when a nurse would come and take my blood pressure or give my meds. Friday night I went to the toilet and there it was. A trump. Things must be waking up I thought to myself. I wasn’t going to get excited because that never gets me anywhere but it was an improvement all the same. By the Saturday morning my stomach had gone down a lot, not quite to normal size but a vast improvement on how it had been before. The NG tube came out Sunday and I was allowed to try and eat Monday. This was pretty much make or break time. If the food didn’t stay down the tube was to go back in and I would have to be fed by drip again. If it stayed down and came through the other end then things were looking up.
Thankfully, all went well and the next morning the surgeon had a good poke at my belly and allowed me to go home.

6st 4, again. Bummer. But surprisingly this time I hadn’t really lost my appetite. I was back to eating my regular size meals in the first week or so of being home. I didn’t really experience the sudden urgent need to run off to the toilet every ten minutes which I was informed that I would. I must have just been very lucky. The only irritating thing is having to keep getting up in the night for the loo. I will soon be able to wear all the new clothes I bought and am looking forward to doing a huge underwear shop to make the most of my bagless body.

The next thing I want to do is find a new job that I really enjoy. I am looking into evening classes at the minute to further my skills and qualifications and hope that soon I will be able to change my life for the better. Me and Matt have booked a holiday in Torquay for October, funded by my gran. She really is a star and does her best for all us grand kids. I also hope to find a better house in the not too distant future that we can finally think of as a ‘home.’

It’s been a struggle over the last two years but it finally seems it is over and I can get back to feeling like my usual self. There are many things that could go wrong with the pouch over the next few years so I am determined to make the most of now. After all you never know what’s waiting round the corner to come and bite you in the ass.