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  1. emmaaaargh

    Silent Crohns

    Hi Catherine - I'm not a parent, but I've been following Sarah's story closely. I've been through something similar really recently, so I just thought I'd chime in in case my experiences could be useful. I had urgent surgery in November to do a strictureplasty and resection of some sections of...
  2. emmaaaargh

    Covid-19 & the 3 'risk groups'

    Quoting you here, Lisa, because this is something I think needs emphasising! Current thinking is that most of the IBD drugs don't make you any more likely to get COVID-19 (apart from 20mg or over of prednisone, apparently), and it's possible (not enough data yet to know, but they're currently...
  3. emmaaaargh

    Being one of the vulnerable 1.5m in UK

    The British Society of Gastroenterology has issued a statement on azathioprine/6-mp here. Also, there's a risk grid for IBD patients as a whole here (also by the BSG) so you can check which category you fall into there. Hope this helps!
  4. emmaaaargh

    Atrial fibrillation

    I hope I'm not being pedantic but actually blood thinners are not contraindicated in IBD. In fact, they're encouraged, because in a flare the liver overcompensates its protein production, leading to hypercoagulation. IBD patients in flares are at 2-3 times more risk than the general population...
  5. emmaaaargh

    Stelara and Neuropathy

    Flagyl did this to me. My thumb got so numb, then my index finger, then my middle etc until my entire hand on both sides was numb. Had to stop it because it was impacting my ability to do stuff (I kept dropping things etc). And then it resolved completely after about 10 days! Not sure I'd ever...
  6. emmaaaargh

    Would you take this drug?

    Where did you hear that clinical trials are conducted on healthier patients? From my experience, that tends not to be true, unless a patient specifically requests to join a trial. I myself have only started to have clinical trials mentioned to me as I have approached the end of the list of...
  7. emmaaaargh

    Would you take this drug?

    Unfortunately a lot of IBD drugs have similar remission rates! None of them are a certainty to work for anyone, and most are no better at effectiveness than this one. It's not the best of odds, but when you're desperate to fix a flare that's all but destroyed your guts, you'll go for the drug...
  8. emmaaaargh

    Follow up to discuss ileostomy reversal

    No advice to give because I'm not there yet but I just wanted to say I know how you feel! I have a temporary jejunostomy right now after my surgery in November and I don't even have a date for a consultation with my surgeon yet - but he said he's keeping in mind that I have to go back to...
  9. emmaaaargh

    “Silent” Crohns and treatment

    Lack of symptoms does not denote benignity, though, which is the point I was trying to make. If the test results are clear that you do have inflammation, ignoring it will allow it to progress - whether that happens slowly or quickly. Long-term studies that the disease can evolve over time and...
  10. emmaaaargh

    “Silent” Crohns and treatment

    I had silent Crohn's for a while (although it wasn't at the start of my disease, which was weird). I didn't feel any symptoms for a couple of years, while my inflammation markers creeped higher and higher. Then everything sort of exploded, I started getting worsening symptoms, and I've just had...
  11. emmaaaargh

    Help! Can anyone tell me if they think these Capsule Endoscopy images can in anyway be normal??!

    I'm glad you're changing hospitals and seeing a new doctor because even without the pictures, your symptoms at least definitely need addressing! It's unbelievable how they've just ignored you. I had to do the same and switch hospitals - my old hospital wouldn't change my treatment even though it...
  12. emmaaaargh

    Anastomosis stricture

    It is an incredibly long time. I was originally supposed to be seen next week, by my GI, but that appointment got cancelled because one of the most senior GIs wants to see me (I guess my GI didn't think he could handle me any more? Not sure.) and his first free appointment was at the end of March :(
  13. emmaaaargh

    Anastomosis stricture

    Thank you! Well, everything we've tried so far hasn't worked at all - azathioprine isn't enough any more, and Remicade and Humira both failed. I can't get into to see the GI (I'm seeing one of the most senior doctors now because my disease is so bad, but he's understandably quite busy) until the...
  14. emmaaaargh

    Anastomosis stricture

    My recovery has been going well, all things considered. The plan was that I’d have a temporary ileostomy to let the surgery site heal without being irritated by stool flow, but we had to correct or remove much more of my bowel than originally intended, so my ileostomy is in fact a jejunostomy...
  15. emmaaaargh

    Anastomosis stricture

    Yes, surgery really is the only way to deal with a fibrotic stricture, although the fact that surgery will eventually lead to scar tissue again means that it isn't usually considered until the stricture starts causing problems. MRI can be used to distinguish inflammatory from fibrotic...
  16. emmaaaargh

    Update on my life

    I forgot it had been so long since I posted! Sorry about that. Doing a lot better now. Finally released from hospital on the 4th of December on personalised TPN bags (there's a supply crisis going on in the UK at the moment so I am extremely lucky to be on these. Pre-mixed bags wouldn't cut it...
  17. emmaaaargh

    Stricture Advice- Surgery or not?

    Most people with strictures who live with them for years do so because they’re not severe enough to cause symptoms. You’re already getting symptoms, and it seems to be impacting your quality of life quite a bit, especially since you’ve experienced two obstructions. Having to adhere to a...
  18. emmaaaargh

    Update on my life

    Well, I had an MRI a week ago today (last Thursday) and by a Friday night my surgeon had come to see me. “How about we try and do it tomorrow morning” he asked. I clearly wasn’t in a position to say no. So on Saturday morning I underwent an emergency strictureplasty with resection and stoma...
  19. emmaaaargh

    Update on my life

    Hello from the hospital, once more (and thank you both for your support!) I’ve been here since yesterday morning and... hoo boy. Insertion of an NJ tube was booked for 8.30am (got up at 5 so we could drive to the hospital in time) and wow, that was not a fun way to start the day. I still don’t...
  20. emmaaaargh

    Update on my life

    Thank you all. I'm pretty lucky with my team, yeah. I've another update but this one isn't quite so positive... I'm nearly two months on TPN, and honestly? It's going fine, objectively. I'm gaining, and things are okay. Mentally, though, I'm an absolute wreck. One thing you need to know about...