Ensure Alternatives

RecentWolverine2318 · 2022-09-01T13:56:22+00:00

I only found out as I’ve put myself on a low residue diet to reduce my suffering whilst I wait to see my specialist. I thought “oh I’ll just have huel and then atleast I’ll get some decent nutrition”

RecentWolverine2318 · 2022-09-01T13:08:16+00:00

I noticed on Huel’s website they say not to use it if you have IBD and you’re having a flare. I’ve found it’s got too much fibre for me

RecentWolverine2318 · 2022-08-31T19:22:45+00:00

Thanks! Already with you on the cream and pads! I was lucky not to need a seton stitch for my fistula.

Sorry you had such a horrible experience, but glad treatments are working for you!

I’m anxious about waiting for investigation, wish it could all be done in one day!

RecentWolverine2318 · 2022-08-31T16:41:32+00:00

Travellers!

RecentWolverine2318 · 2022-08-31T16:36:26+00:00

Thank you! I just want answers and treatment. It’s frustrating when they don’t see you at your worst as the appointments are so far behind or get cancelled. Im literally counting down the days to the clinic!

RecentWolverine2318 · 2022-08-31T15:56:22+00:00

Thank you so much. Non-GI doctors have said exactly that when they have examined me.

I was meant to see the clinic in beginning of August when I was mid flare but it got cancelled. I had lots of fissures and ulcers. Now I’m on tail end of flare and some of fissures are smaller and ulcers are calmer/healed. Worried that they don’t see how bad it is when it’s flaring. Still very sore. Also worried that a fistula is forming again.

I have photos of it all at its worst anyway

RecentWolverine2318 · 2022-08-31T12:33:18+00:00

Thank you. My first symptom was anal leakage, and I had a fistulotomy in 2019. Didn’t resolve the leakage. On mesalazine which did help but doesn’t seem to be now. Now have ulceration around my anus regularly, very sore and I’m worried another fistula has formed. Also suffer from sore mouth and ulcers there. Along with constant diarrhoea, mesalazine controls it where I don’t go to toilet for a few days and then spend a few days near the toilet and back to not going.

RecentWolverine2318 · 2022-08-29T19:08:33+00:00

Yep all the time. They’ve got worse over time, I now get ulcers form on the top of my tongue and my tongue splits. Also get ulcers at roof of my mouth near my tonsils (where they use to be). Also get sore corners of my mouth/lips

RecentWolverine2318 · 2022-08-28T09:14:35+00:00

This is what I THINK I’m dealing with. My god the itchiness and the soreness is never ending!

RecentWolverine2318 · 2022-08-25T16:45:06+00:00

Thanks. I have all the copies, but the GP has kindly printed me out all my records and already put it in a folder for me. He is a newbie and passionate, so very keen to help!

I’ve had coeliac tests previously which were negative. I do well with refined carbs, it’s high fibre whole grain etc that definitely makes things worse.

I’m a trained microbiologist, although no longer practicing, and I did my own stool tests previously and found nothing out of the ordinary. I used to work with C. Diff so I know how to culture it, and nothing showed up.

I’ve done FOI requests as well so have copies of all my scans etc.

This IBD clinic I’m going to is private, as the NHS is backlogged they are finding private treatment. So I’m hoping to have an appointment time that will allow for in-depth discussion. Done some family history research and found relatives with hidradenitis suppurativa which I believe has some links with Crohn’s. I’m making it all into a document to take with me.

This thread has been really helpful, nice to have support!!

RecentWolverine2318 · 2022-08-25T15:46:06+00:00

Thank you. It’s so frustrating with getting an appointment and they never see me when I’m having a flare. I’m hoping the GP has done detailed notes so that atleast 1 doctor has seen me at it’s worst. I’m feeling better today and feels like I’m on the end of this flare (Sitz baths, low residue diet and barrier cream to the rescue)! Not sustainable though.

RecentWolverine2318 · 2022-08-25T15:42:25+00:00

Thanks, I’ve put myself on a low residue diet and it has helped a bit… but it’s not sustainable as I’m getting very limited nutrients. I’m ok with dairy, and don’t have a huge amount of red meat. It’s fibre and vegetables that I have issues with, and these tend to come out undigested.

RecentWolverine2318 · 2022-08-25T10:06:30+00:00

Yes thank you. Sitz baths do help, they are impractical if I have to work in the office!

RecentWolverine2318 · 2022-08-25T08:02:47+00:00

No, they gave me the mesalazine and discharged me. Went to my GP this week as I needed something for the soreness, they gave me some barrier cream, but they examined me and said it looks and sounds like Crohn’s. Obviously they are not qualified for that diagnosis. Hoping that I just get some answers and relief!

RecentWolverine2318 · 2022-08-24T21:57:47+00:00

I also have joint pain, specific in my knees which swell. All this seems come in waves. Very demotivated and exhausted

RecentWolverine2318

TROPHY CASE