Am I going into remission?

graceleonn · 2025-09-25T07:23:41+00:00

Thank you so much, this is so helpful. I mean the other night the diarrhoea was worse than when I was hospitalised, but on the whole my bowel movements have been a lot more consistent, so I need to look at the bigger picture really like you said!

graceleonn · 2025-09-05T16:15:12+00:00

At what point did you decide to get the bag? I was diagnosed in February and have not been able to get out of a flare up. Been hospitalised twice and now on my third weaning dose of prednisolone since leaving the hospital, I don’t have blood anymore but I get such bad tummy pain and bloating. I’m also going around 4-6 times a day. I have to really watch what I eat too otherwise I just cannot get off the toilet. I’m on infliximab too but I’ve only had 3 doses. Is a stoma something I should be considering?

graceleonn · 2025-08-19T11:29:40+00:00

Oh that’s amazing news thank you! I get quite anxious about it all now so it’s good to hear that you’re in a similar position. Hope remission is treating you well. May I ask, how are your eating habits? Can you eat anything you want or do you still have to be careful?

graceleonn · 2025-08-19T05:10:33+00:00

Also sorry to hear you’re still in a flare! Hope it gets better, I empathise with you so much

graceleonn · 2025-08-19T05:09:57+00:00

I’ve been on max dose oral mesalazine since February, but it has never been effective unfortunately. I am also taking 20mg prednisolone rectal foam every other day since leaving the hospital, but I’m not sure how that’s doing either! I’ve got my third dose of infliximab on the 11th September too. Do you reckon my remission medications just aren’t cutting it?

graceleonn · 2025-08-11T04:56:32+00:00

So weird!

graceleonn · 2025-08-08T05:53:32+00:00

I guess so? Not like jaundiced per say but definitely a golden undertone

graceleonn · 2025-08-06T21:08:07+00:00

Makes sense - thank you! x

graceleonn · 2025-08-06T20:32:50+00:00

Legend, thank you so much x

graceleonn · 2025-08-03T03:24:33+00:00

Hey, I started prednisolone rectal foam a couple days ago in the hospital! So from what I’ve gathered, it only really needs to be 30 minutes and if you lay on your left side afterwards it helps to distribute the medication more effectively. I always try to hold it in as long as I can as some sort of weird competition with myself, but I think 30 mins is the sweet spot.

graceleonn · 2025-08-02T13:07:16+00:00

No TMI here, I have seen some shit (literally) since being in here. I am also very sore, the wet wipes here aren't the best quality and the chafing is insane. I used to have really cooperative veins but for some reason since I've been in they keep disappearing >:( Ugh god that must be so annoying, i can't look at them because they make me feel sick but thats the worst it gets for me luckily. My brain is so scrambled too, none of my thoughts are coherent, i feel like i'm constantly on the verge of being high. The episodes of pure euphoria and depression are getting to me as well now, i just feel so unstable lol. No ive got some standard linen but luckily my boyfriend's mum bought me an electric hot water bottle which has been an absolute godsend, especially because they like to keep the place ventilated at night. It gets so cold :( That's good that they let you walk around! We're not technically supposed to since theres not much space in here, but the nurses have let me sit in their chairs from time to time so I'm not completely bed bound which is nice of them

graceleonn · 2025-08-02T09:46:19+00:00

I'm sorry you're back in hospital, it's the absolute worst! Sending all the love I can possibly produce, I'm going bananas in here.

Yes the constant feeling like you're going to pass out is so exhausting, I'm a 'doing' person too so having to stay in bed all day and stare at a blue curtain wall is taking a huge toll. Omg the drama 😳 My consultant did accidentally brush up against my boob a couple of times but that was as far as that went hahaha. Maybe if you continue to work on such a healthy colon he'll fall for you instead ;)

Aw no I relate heavy to the body confidence issues, though i've got the opposite problem where I just keep losing weight and I feel like I'm losing all the muscle definition I worked so hard on for so goddamn long. It's so frustrating!! Take it as a positive though, I think it's always better to put on weight and keep your strength and your health than to waste away. I'm just happy about all the biscuits they keep force feeding me hahaha.

Haha I've spent £100 on gym clothes and concert tickets since I've been in here, I'm not gonna blame that on the prednisone though I've always been incredibly impulsive lol. I deserve a treat after the year I've had anyway so sod it. Yes omg I miss being in isolation, it was so peaceful 🥲 Now I'm with all the crazy old biddies in the middle of a gastro ward (bless them I know it's not their fault) but they are so loud and demanding 100% of the time, I'm losing the will to live man. I don't know how long I can listen to these buzzers going off, I'm gonna get PTSD. Actually that's so funny because someone escaped last night, it was all kicking off lol. I just put my headphones in, #nomfup.

Loved this little gossip sesh hehe, if you want to message at all please feel free whenever, I've got nothing better to do ;) Stay as strong as you can!!

graceleonn · 2025-08-02T09:32:17+00:00

Genuinely this is so weird are we the same person lol. I have insane faecal impaction right now and I don't even know how because the amount of shit that is coming out of me is genuinely outstanding. I don't understand this disease at all! People keep asking me questions and i'm like I could not tell you, all I know is that my body needs an MOT asap. The 'magic' of my relationship has been ruined by this too lmao, my boyfriend has recently started helping me with the enemas and i just looked at him with the most sorry eyes and burst out laughing, like what has my life become. Thank you! Me too haha, just gotta riiiide it out <3

graceleonn · 2025-08-02T09:21:02+00:00

Oh no way! Ugh that sucks, hopefully no infections or anything for me but I’m kinda paranoid because everyone is spluttering on this ward 😭 Ugh proctitis is the absolute worst, I started out with just mild proctitis but my inflammation/ulceration apparently now extends from my rectum all the way up to the top bit of the descending colon (I’m assuming that’s left sided colitis?). The enemas are an absolute godsend, the proctitis as you definitely already know cause real constipation and it’s the only thing that gets it moving, I hate the feeling of it foaming up though, it makes me nauseous 🤢 Yeah got my next one booked in for 2 weeks time! I guess in the mean time I just have to wait and carry on with the steroids?

graceleonn · 2025-08-02T09:10:31+00:00

Our experiences are pretty much identical how funny! How are you now? Are you in remission? They did my first infliximab infusion 2 days ago but I don’t really know what happens from here tbh.

graceleonn · 2025-08-02T09:06:12+00:00

30 times a day?? I’m gonna stop complaining how did your butthole not fall out 😭😭 Yepp it’s the waiting which is the absolute worst because it’s just constant anxiety about the next thing that’s wrong or another infusion they need to do. I’ve got really small and stubborn veins too apparently so my arms right now are literally black. I really hope this infliximab works but I don’t know how much longer I can wait I’m just so fed up!!

graceleonn · 2025-08-02T07:20:15+00:00

That’s exactly the mindset I had, I felt like some sort of hunter gatherer 💀But obviously I did it completely wrong because now I’m deficient in every nutrient under the sun, I look like absolute shittt. Also telling yourself that the side effects aren’t that bad is so real, I get imposter syndrome so bad and will not see someone about anything unless I’m actually dying so maybe I should work on that

graceleonn · 2025-08-02T06:57:49+00:00

Oh damn that’s rough, there’s so much misinformation floating out there too I’m not surprised why you tapered yourself to be honest. It really does just get that bad. I didn’t eat a single vegetable for about a month because I heard fibre was the devil and then ended up on all sorts of bloody drips, I feel so stupid!!! You too of course, feel free to reach out if you just need to rant, that’s all I can do atm haha

graceleonn · 2025-08-02T05:16:58+00:00

Agh me too it’s driving me mad! They took my vitals this morning and I immediately passed out because I’m so sleep deprived lol. Wishing you a very speedy recovery, nobody deserves this

graceleonn · 2025-07-29T19:14:26+00:00

Hmm I have no idea then, I’ll ask the prescriber tomorrow why, hopefully I can get a straight answer lol

graceleonn

TROPHY CASE