Interesting (and somewhat positive) read about the ACE2 receptors: https://academic.oup.com/ecco-jcc/advance-article/doi/10.1093/ecco-jcc/jjaa061/5811674 Thanks for the IBD cases link!!...
Everything that straydog said! I’m on Imuran and Remicade and somewhat worried but all we can do is prevent/delay catching it AND prepare our suppressed immune systems as much as possible. IMHO, it’s...
I’m so sorry Bucko. That’s utterly ridiculous and shouldn’t be acceptable!!! Your experience is horrific even compared to the NHS and they’re mega sh*te on a regular basis. I want to say you need to...
Congratulations!!! That’s awesome. 😊😊😊...
Hope you feel better soon. Keep us posted....
Hello So sorry to hear about your son. My heart goes out to you. Why hadn’t he been put on nutridrinks? Sipping is the first point of protocol for paediatric CD by a lot of GIs. Sorry if he has been...
Hi Didn’t want to read and run. I had a massive attack of arthritis at my lowest with CD but I have never had a back pain on my left as you described. I wonder if the pain is linked to your large...
Thanks everyone, your kind words really mean a lot to me. I know got really bad D due to the antibiotics to treat the infection. I normally tolerate them well but I’ve been in a post-surgery diet to...
As the title says... I was doing well, finally figured out how to exercise every day, despite being on my own with a nuclear-powered toddler and a big dog. I even dared to dream that by the end of...
Agreed that diet and fluid intake is paramount. I get most of my fibre with my nutridrinks but I also drink about two litres of water everyday. I must have been a camel in my previous life! You could...
I had an NJ tube which goes even further and to be honestly, it gave me SO much relief. Once you get past the first few days, it gets much easier. :)...
If the inflammation continues and they removed a way of the pus getting out, it will just find another way of escaping. But surealy your doctors have addressed the original inflammation before...
I second liquid diet. Can you somehow get your GI or GP to prescribe you some nutridrinks? I’m on Resource 2.0 Fibre and have been ever since my feeding tube was taken out over a year ago. This stuff...
Is it possible the tract was pretty much cut in half and while the pus is entering, it doesn’t really have a way out, unless it backs up, basically creating another abscess? Not sure if I’m making...
Thank you Monte. So far, so good! Here’s hoping it continues....
Hello Sorry to hear that. :( Wouldn’t the burning suggest that there is a cut or similar? I assume the cream doesn’t burn normally but it might on raw tissue? How about vaseline before BMs?...
Hello everyone I had Permacol put in the remaing singular RVF tract on Wednesday. My CRS was happy with everything and I trust him completely so no issues there... BUT... As always, I had bad...
Hello :) Fellow fistula sufferer here. I don’t fully understand if you still have pus draining through your rectum. Do you have Crohn’s? Is it with active inflamation? I don’t know your circumstances...
Hello I can definitely tell a difference. Decaf coffee gives me either very little or no pain while normal coffee causes a fair bit of pain. I hardly drink either though. I have maybe four cups of...
I personally don’t drink Coke as I can’t stand the taste. But anything carbonated, hight in sugar and with caffeine to top it off is bad for a healthy digestion, let alone those having fun with IBDs....
I had this when I had massive stomach issues as a teenager about 18 years ago. Long story short, modern medicine couldn’t help so I turned to chinese medicine. They have a name for it, something like...
Straydog, thanks I conpletely firgot about that function! 73monte, yes it’s actually the carnivore diet I’m mostly interested in after my GE came back from some international symposium where the...
Hello my partners in suffering :D Anyone on or has tried the keto diet? How are you getting on? Any favourite meals or anything you want to share? For any budding preachers, please no “diet can’t...
Hi Dimitri That’s what we’re trying to eliminate though. Just spoke to my GE and apparently I can be on Pentasa supps for years. So should be ok hopefully! Onwards and upwards. :D...
I have two side tracts and both are now closed thanks to GiLaC and the Crs’s magic hands hege. Now what’s left is the main fistula. But my inflammation is not under control :( it’s just not...
Sorry Dimitri, I missed your reply completely! Ah my apologies, I thought you only had one FiLac. I was 100% sure I’d go for it again, had the first one not worked fully. But it seems to have! The...
Thanks Dimitri :) It’s actually thanks to you that I have found this CRS. You wrote on here about looking into FiLaC and so did I on the back of it. I really liked the sounds of the procedure,...
Hello everyone I recently had FiLaC and thought I’d share my story for anyone considering this treatment. It’s a bit long but there’s a short summary at the end, for the time conscious folk. To set...
That seems like a highly unusual amount of bleeding. Surely your gyno will see you sooner if you explain the situation and urgency. If the bleeding continues at the same rate and you start feeling...
Sorry to hear you’re struggling to get answers. Liquid diet can (mostly temporarily in adults) induce remission. It has done in me. I had a NJ feeding tube for two months. I now continue with...
Crohn’s is an IBD. It sounds a bit like the peripheral arthritis I had during my last flare. I was so sore I couldn’t walk. I got prescribed two different antibiotics at once and the pain subsided...
Hello :) I had a port-a-cath installed last November and I’m happy with it. Had it done under local only and I have to say that was not pleasant. But worth it! I did a fair bit of research and...
Hu Dimitri Sorry to hear it’s not been as successful as you had hoped. I’ve been following your posts with interest due to my complex RVF. I’m very much in the beginning of my treatment and am...
Good luck Chris. I think it’s very sweet how much you care and want to make the lady feel as comfortable as possible. :)...
I know that there are knotless setons. Even the NHS have them so it must be pretty common! When you say it’s happening too frequently, how often are you talking? I always check the position of mine...
Hi Tippytoes So sorry to hear your wee one was diagnosed with Crohn’s. It’s hard to stay strong when the disease is diagnosed in our own bodies, let alone in our children. Please never hesitate to...
Yes, me. I have three draining setons. One is a bit troublesome because it moves a lot but I just need to rotate the knot and it stops until it migrates back. This one might also give me a little bit...
Sorry to hear you’re having such a hard time. :( Look into the LOFFLEX diet. It’s an elimination diet to find your trigger foods but it worked really well for me. Very important thing is to start...
So sorry to hear that Minnie....
Congratulations! :D...
Hi Dorri Sorry to hear you had such a bad time but glad you seem to be on the mend now. I have no experience re readjustment to bile acids but for diarrhoea, plain white rice twice a day helped me a...
Hello I’m on Remicade and Imuran so likely able to eat a bit more. I’m basically avoiding insoluble fibre or hard to digest stuff. I also have a fistula so avoid things like broccolli or anything...
Hi Kiwigal Sorry to hear you’ve joined us lucky ones with RVFs. I have a complex RVF with three draining setons, I’m on Remicade, Imuran and 1,000kcal Nutridrinks a day. My setons get checked and...
Hello :) Welcome to our little corner of rainbows, unicorns, puppies and also diseases and other good stuffs. Sorry to hear you’ve not had much info from your surgeon. Not surprusing with NHS these...
Just a wee update in case it helps someone. I spoke to my GI to check which stool softener would be the best (got worried in case I get the wrong one) and I’ve been prescribed suppositories and a...
Thank you both. I’m keen to try and minimise all the bad chemucals, if at all possible. On top of all the other stuff we have to take. So the more gentle, the better. Straydog, thank you :) Not to be...
Hi everyone I’ve now had my feeding tube removed and I’m getting 1,000kcal from nutridrinks and the rest from low residue foods. I also drink a lot of water (between 2,5 and 3 litres). My problem...
Can you contact your GI or GP? I’d say ER is not for weight concerns BUT it is for extreme vomiting or D because you could get dehydrated. If you’re not in imminent danger, I think they might not...
Hi LS I’m so sorry you’re having to deal with this so young. You’re handling it so well! I have a RVF with one entrance and three exits and three loose setons so I can’t unfortunately help with any...
Hi Murphy I only have a little bit of an anecdotal piece of info but it’s a positive one so I thought I’d share. :) One of my great great cousins has CD and she had a resection at the age of 16. She...