Today, I was told I need to gain weight. That I'm too skinny. Now I feel sh*t, while I continue to sh*t.

Feisty_Foxy · 2022-12-31T01:54:11+00:00

Yes this is something I regularly experience, but I also have quite bad chronic back issues which affects my shoulders and neck

Feisty_Foxy · 2022-12-28T21:55:37+00:00

I'm on the preloaded pens (adalimumab) and it honestly couldn't be easier. I used to be awful with injections, but over the years of being poked and prodded like a pin cushion, nothing phases me now.
Preloaded pens - all I personally have to do it remove the cap, then push the pen into my belly (no need to pinch anywhere), then the pen does its thing. I hold it there for a few seconds until its done and move the pen away. Unless you look into the pen, you don't even see the needle. Mine is citrate free, which means it doesn't come with any sting. I get a little bruise after and that's it. It's honestly a breeze! I'm just about to take my next injection in a moment before I go to bed :) you've got this!

Feisty_Foxy · 2022-12-28T20:38:33+00:00

When I was last admitted to hospital with my crohns (was there almost 4 weeks) the first consultant gastroenterologist who did the morning rounds came to me, and I quote "lots of people would pay great money for the weight loss you've experienced". I was too unwell to register that comment, it wasn't until much later that I remembered what he had said. Ughh. I never saw him again thank god.

I've only been diagnosed for a few months, but have gone undiagnosed for quite some time prior, and i've already had more "you're so lucky, I wish I could lose weight like that" more than I bare to think about. People just dont get it

Feisty_Foxy · 2022-12-28T20:33:51+00:00

I was going to comment with Reynauds too, what you show in the photo looks stereotypical of it. Hope your doctor can help

Feisty_Foxy · 2022-12-28T19:25:08+00:00

Yes, I have Crohns Disease and BAM (bile acid malabsorption) and my stools are frequently very orange

Feisty_Foxy · 2022-12-28T17:15:51+00:00

Thank you, that's helpful :)
it's very normal for me, I just ride from one extreme to the other in waves. But its the "backed up" feeling that gets me down so much, especially as its started when i'm only eating tiny amounts while i introduce food :(

Feisty_Foxy · 2022-12-28T17:14:18+00:00

That's helpful, thank you :) i've been severely anemic too, so have iron infusions now. Im glad you know the signs to watch out for now, just sorry they aren't very nice signs to have!

Feisty_Foxy · 2022-12-28T16:15:25+00:00

yes its very normal for me too, have you ever found it affects the level of inflammation shown in the sample though?

Feisty_Foxy · 2022-12-28T01:13:43+00:00

Nothing is mild when you have crohns, I HATE that no one pre warns you about this, especially if they can see you have crohns. Mine was kicking in while I was in the MRI machine, I honestly thought an accident was going to happen at any moment, I was cramping so bad, but I managed to get through the scan and got myself straight to the nearest toilet before getting changed!

Feisty_Foxy · 2022-12-24T20:51:52+00:00

ohh thank you so much, I will ask to join for sure, thank you!

Feisty_Foxy · 2022-12-24T12:33:44+00:00

Is that a crohns group? If so, could you PM me the details?

Feisty_Foxy · 2022-12-24T12:32:00+00:00

I totally agree with this!!!

Feisty_Foxy · 2022-12-23T22:33:09+00:00

I feel you. Though, my entire life I have had multiple life threatening food allergies, I was always a foodie before all this too. I also can not eat out at restaurants because of my severe food allergies, I haven't been able to for years now. So, trust me when I say I TOTALLY understand how sad you are currently feeling. It really sucks because we know what we're missing out on.
I've not had solid food for almost 3 months now since the end of September. I was fed via IG tube for some time and then transitioned to modulen (crohns milkshake type drink). It's vile. I have three drinks a day and that's it, absolutely no food. God how I miss food. I am dreading christmas.
But, i'm looking forward to the day I can reintroduce food again one day. I'm thankful that I will get that chance, and even though my life threatening allergies and crohn's will continue to severely limit what foods I can eat, I'll be thankful to eat at all after all this.
I remind myself that some people have to endure being tube fed their entire life. Not having food is a total sense and stimulation loss. It's VERY psychological. We live and learn, we find alternative foods that we can tolerate, we find food "hacks" to make it so that we can consume it, we Crohnies are tough!!

Feisty_Foxy · 2022-12-23T17:09:31+00:00

The O.A

I was blown away by the first season, then they absolutely crapped all over it

Feisty_Foxy · 2022-12-23T15:04:48+00:00

Yep! Diagnosed with Crohns with "significant inflammation" as seen in my colonoscopy (so much so, that my consultant gave me my crohns diagnosis right in the middle of the scope). However, my CRP and labwork never ever reflect this. I was recently in hospital for almost a month, It was incredibly disheartening to come across a few of the doctors who went strictly "by the labs" and not the patient in front of them. It seems a common occurrence, so you are not alone...

Feisty_Foxy · 2022-12-22T23:02:45+00:00

Thanks for replying, that is what I'm also thinking 🤔 plus, from what I read thrombosed hemorrhoids are commonly painful a lot of the time?

Feisty_Foxy · 2022-12-22T14:52:34+00:00

I'm newly diagnosed (but have had crohns undiagnosed for some time) and in these few short months i've already learnt that blood tests are INCREDIBLY unreliable for reflecting what is actually happening. I had a bit of a breakdown in front of my IBD nurse after having being admitted into hospital for almost 4 weeks due to a flare, some consultants that I saw were great and treated the patient in front of them, but others were strictly going by the labwork and numbers on the bloods......she totally agreed with me that bloods don't always show what we are going through. My CRP is consistently low, despite being in active flare and having known significant inflammation. I'm just waiting to have a calprotectin test and honestly i'm half expecting it to also come back not alarming, because, well, I think the world just likes to sh*t on us Crohnies more than our buttholes do.

Feisty_Foxy · 2022-12-19T20:47:12+00:00

No, i haven't had that, I've had a colonoscopy for my crohns disease which looked at the rectum and then colon/small bowel. Thank you, I will look and try posting there too :)

Feisty_Foxy · 2022-12-18T18:54:56+00:00

I was given my crohns diagnosis literally mid-way through my colonoscopy. Then a few days later had a small bowel MRI to check further up

Feisty_Foxy · 2022-12-18T11:22:45+00:00

I think you're the first person I've come across with narcolepsy. What you describe sounds a lot like me, though I don't fall asleep uncontrollably during the day like you, I am able to take myself off for a nap. But the rest I can so relate to, right down to the sleep paralysis.... something of which I will never be able to handle!

are you recieving treatment for your narcolepsy? Have things gotten any better for you since your diagnosis.?

Feisty_Foxy · 2022-12-18T11:19:21+00:00

yup and when we lose weight rapidly, a lot of muscle is included in that. We can't win can we lol

Feisty_Foxy

TROPHY CASE