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When is it time to go back to hospital I'm new to colitis and so confused

Posted , 5 users are following.

samantha1982
samantha1982

I have been out of hospital almost a month I'm on Steriods and aeons dose of infliximab I started feeling totally normal even hypo past few weeks just on one to crack on with Xmas bits as was in hospital 10days and really affected my youngest me being away baring in mind I only have my mum to help.

So I have started to eat more and have a few red wines over doing it past 3 days and tonight I started getting that random exhaustion feeling and being very overly easily irritated mood then late tonight followed by crippled up in pain all on my right pain to the point I had to call my mum to come over as was in tears really scared cause I live on my own with 2 young kids.

I took paraceptoml and 2 hours later pain is gone, what confuses me is when or what symptoms constitute trip up hospital cause

I don't want to risk leaving till last minute like last time then being kept in over Xmas or bank holidays.

As I'm new to colitis and now finally medicated for it since 18/11/15 is the cramping or whatever it is normal when you over do it with wrong foods and alcohol and will paraceptoml be enough to die down the pain ????

0 likes, 9 replies

9 Replies

  • ehsan18513
    ehsan18513 samantha1982

    Posted

    Hi Samantha

       Please tell me how long you have been on special diet now? Has it helped. You tried no alcohol and no spicy food? Did it have any effect at all?  

    • samantha1982
      samantha1982 ehsan18513

      Posted

      I started off well I have avoided some like my usual chilli on everything and weekend hot curries, but as j felt so good last weeks the last 3 days I've over indulged with chocolate snacks crisps red wine I had hot sauce in my toasted sandwich yesterday lunch time and chilli flakes on my left over pizza that I ate last night with the wine and the chocolate so I guess the excruciating pain I experienced was the ulcers in the colon going mad at me for putting all that heavy crap on my body???

      I'm ringing consultant today as in so scared I'm gonna miss Xmas cause if I can't get through this week and all the bank holidays and weekends I'm screwed.

      I'm just so overly concerned what to put in my body other then mineral water I think I'm gonna have a day of no eating help give my stomach a chance to rest digesting all the rubbish I've been storing

      I have had 2 rounds of infliximab next iv at hospital is due early January and I'm currently weaned down to 5 steroid tablets due to end in January and that's when I'm really gonna panick cause Steriods are the only think that calms all symptoms down so like last time in October once I'm off them give it a few weeks and the pain will just come back if this medication doesn't work and I've heard infliximab doesn't for a lot of people, I can't do asacol or the mezerline I have really bad reaction to it makes me feel sick as a dog so refused it I can't do the suppositories either so hoping whatever they try next will work better and I will go back to having a cleaner diet and not risking eating my usual just cause I feel better cause clearly my body can't handle what I usually eat anymore and it's about time I stopped being in denial about it

  • helena108
    helena108 samantha1982

    Posted

    I would ring and speak to the Ibd Nurses but have been advised no alcohol and no spicy food also the worst for me NO CHOCOLATE., How long dud it take you to get Inflixamab and did the hospital/Dr's have to apply for funding. H
    • samantha1982
      samantha1982 helena108

      Posted

      They just started it on me while I was admitted in nhs hospital in November so have no clue about funding. Yes chocolate milk caffeine were normally key factors in setting off going to toilet so I had stopped all that caffeine free tea stopped drinking my usual syrupy frothy coffees in the morning and cookies, but been feeling more then back to normal self few weeks I guess I thought how could it hurt like an idiot, yesterday I started off well and had a fresh fruit smoothie after having a bottle of wine pork scratching crisps, crackers and cheese fryup cheesecake chicken burger and pizza the day before bit had hot sauce in my panini yesterday and chips and felt so heavy afterwards, I went home exhausted from kids playing up and me repeating stop it or shut up that I could barely keep my eyes open and it was only 4pm by time they went to bed I had a coffee and 8 cookies then 3 slices of left over pizza then half a large toberlone and a more red wine then big shocker this excruciating pain started so all self inflicted clearly as been eating like a total pig.

      Lost all my weight I've been trying to lose in 2 years since getting ill and just piling it all back on like a child in denial. I'm literally just drinking bottled water and living off jelly and soup again cause I have no clue what my stomach will allow me to eat and I can't go through that pain again

    • helena108
      helena108 samantha1982

      Posted

      I understand why but think you over did it! I also lost a stone and a half and put it back on with steriods but still bleeding so going Today for flexi sigmoidoscopy pm to see if suit for injections or on about surgery which I do not want am going to up steriods over Xmas and try that as I think they reduce to quick. Enjoy Christmas 🎄 but do take care
    • samantha1982
      samantha1982 helena108

      Posted

      Weirdly the bleeding and frequent going to toilet has stopped past weeks only going once a day which I don't like cause feel I would prefer it all out rather then sitting in my stomach making me feel sluggish I curious to see if I have blood in stool after last night.

      I had flexi while in hospital it was first decent half sleep I had as the drugs they give you to half knock you out literally conked me out most the day nurses said I couldn't speak or open my eyes which is a good thing as I clearly needed it why they tried waking me up is annoying.

      After results came back that's when it finally dawned on consultants I don't have IBS or proctitus I have colitis and I'm experiencing a major flare up what a shocker as my uncle has it and my brother so I knew my symptoms didn't fit what they were trying to sell me, every 3-6mths I have a consultant appointment and every visit I tell her I'm constantly bleeding now I'm getting cramps I feel unwell etc and she just popped me on Steriods AGAIN and fobbed it off as IBS then weeks later I started vomitting everytime I ate cramps got worse I put off going to hospital for 2 weeks but couldn't drive get kids to school by the end if it I couldn't sleep get out of bed it even stand up straight and walk but I went to doctors 3 TIMES during all this and they sent me home with either nothing or anti sickness tablets or telling me I'm just experiencing a flare up of my proctitus, a day after my last doctor appointment my mum dragged me up a &e and I was immediately seen and admitted in for 10days would have been longer but I begged to go home as the ward I was in was horrific old ladies puking and pooping all day and screaming through the night in confusion. I just wanted to get home to kids but was laid up in bed for a week as legs felt like tree trunks couldn't manage the stairs and every time I tried to do the slightest thing o was out of breath and chest felt heavy so I literally felt like an old granny I hated it and my whole body felt and looked like jelly after all the Steriods they pumped into me

  • tony33900
    tony33900 samantha1982

    Posted

    Look up the Paleo diet it did wonders for me.

    It's sad but with Colitis you really can't have junk food at all when first diagnosed. Your body has been damaged quite a lot and it will take time to heal, so right now no alcohol, no sugar and no starchy foods. Stick with high fat low carb type eating until your body has had time to heal.

    It's not fair but those of us with colitis really have to change our lifestyles completley to stay healthy. On the bright side you'll end up eating healthier than most people and long term once you heal you'll be able to have the odd cheat day.

    Just remember when I say heal it's not going to be a day or a few months it will be a year or eating strictly. Your body has been through the ringer give it time to heal up.

  • helena108
    helena108 samantha1982

    Posted

    Had flexi-sig done pm (being sedated for anythink else) and no improvement since July even with all the meds so going with Anti-TNF therapy just need bloods and xray meeting with ibd nurse not sure when with Christmas but hopefully we will be Making progress. Hope you'r day has got better just take things easy
    • samantha1982
      samantha1982 helena108

      Posted

      Hope something starts working for you and you can enjoy your Xmas I've still got heavy breathing but no pain since Sunday thank Christ, I've read up on things that help digestion etc and came across bone broth I made some over night and now making it into a chicken and veg potato soup for dinner today, also purchased Bromelain tablets supposed to be good to take before every meal 3 times a day plus pro biotics and sticking to poached eggs In the mornin and bland dinners
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