• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

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  1. J

    Desperate for surgery

    Best wishes to your daughter, fingers crossed she gets her optimum outcome II'm generally fine staying hydrated as it is - the problems only arise when psychs try to stick their nose in and start creating ridiculous fantasies around my intake etc. without keeping it as one perfectly reasonable...
  2. J

    Desperate for surgery

    Ah right, like "PEG" feeding, that'd certainly be convenient. I actually wanted one years ago in case I happened to be in the exact position I'm in now lol, and was refused point blank. Incidentally had an appointment with the surgeon again today, and it feels like a massive step forward -...
  3. J

    Desperate for surgery

    Thank you for the responses. Again, I've been through NG tube feeding, but this would take like, a year. I probably wouldn't survive the period for it to be worthwhile. I've already lost 7 years of my life to this condition anyway. When I was in hospital for the tube feeding, I was abused for...
  4. J

    Desperate for surgery

    .. No, I have an autoimmunity in my rectum which affects my LI. The specialist who finally identified this has referred me on for surgery to have a full proctocolectomy to remove it altogether. Because it took... I can't even remember how many years, it worsened over time to the point of...
  5. J

    Desperate for surgery

    Thanks for the coconut milk suggestion, I'd considered it in the past but I completely forgot about it 🤦‍♂️ I'm thinking something that may possibly sway his mind about the operation is if I can begin to gain some over a period might help to show that I'd be able to continue to do so on my own...
  6. J

    Desperate for surgery

    Thanks again for that resource, much appreciated 👍 Hopefully I'll be able to find something that should be suitable
  7. J

    Desperate for surgery

    Thank you for your responses, A major problem for me is that I can't have nearly all supplements because they mostly contain sugar, or liquid carbs in general which I can't tolerate - the only one I'm aware of is calogen that I can actually have, and that's 50/50 oil and water. I'm even limited...
  8. J

    Desperate for surgery

    Hi all, Long story short, I need to have a full proctocolectomy to be able to recover. The problem is that it has taken so long to identify the problem I've been having for seven years now, I've been left very underweight. I've successfully managed to get a referral to a surgeon to perform the...
  9. J

    Question for those who have colostomy bags

    Lol no chance of any proper post-op care in this shithole. I just really hope he'll refer me for the operation - that's my biggest concern. 1 because it's not technically IBD (although I could argue a case for its classification) and 2 because I'm just so underweight because of the condition...
  10. J

    Question for those who have colostomy bags

    Excellent, this is really sounding like it will be successful
  11. J

    Question for those who have colostomy bags

    Oh great thank you so much - the problem I have is that I feel like the bowel is not empty, and each movement ends up taking longer and longer each time. It literally takes up half my day now. I get like 2 or 3 hours of sleep a night. It's like the urge you get if you have diarrhoea, but could...
  12. J

    Question for those who have colostomy bags

    Actually, he said it was some kind of rare, only-recently-researched form of IBS. I suspected I had Crohn's before I saw him, which is why I came here before. Not sure, maybe shares a lot of traits of IBD. I thought it would be the large intestine, but just wasn't 100% sure. Cells of rectum...
  13. J

    Question for those who have colostomy bags

    Thank you very much for your insight - very helpful as a possible effect. To add to my original post, I'd like to essentially us a colostomy bag i.e. change the evacuation from active to passive.
  14. J

    Question for those who have colostomy bags

    Hello there, long time, no see. In a nutshell, my question is for those who have had large/small/both(?) Intestines removed. Do you lose the feeling of "needing to go to the toilet" (that urge to evacuate the bowels) that is experienced in normal life before removal? I'm referring to that...
  15. J

    Neurology?

    Hey all, it's been a while since I was last here. Firstly, sorry about the vague title; I was unsure how to summarise this. Okay, after all these tests unanimously concluding the same "all-clear" result, I've finally accepted that it isn't Crohn's. However, my mind has been non-stop since day...
  16. J

    So what's left to do?

    Hey all, hope you're all well. You know, relatively. I've had gastroscopy, sigmoidoscopy, barium follow-through, x-rays, Cat's, MRI, all sorts of bloods and stool tests... Just had a capsule endoscopy on Thursday. Holy hell that was some hard prep... My week was like searching for recipes with...
  17. J

    Choosing surgery before medication?

    Hi everyone. I haven't had a diagnosis yet, and I don't expect to ever get one. However, on the off-chance that I do, I'd like to be prepared. In a nutshell, I'd like to know if you have the right to request surgery before trialling medication? I'm not sure of the side effects of anything yet...
  18. J

    What if it isn't IBD?

    Hi all... So having every symptom but no diagnosis and tests all clear. In my heart of hearts I believe it is an IBD. Everyone I see just sends for tests and says that because they're clear there isn't a problem, meanwhile I'm deteriorating every day. Apparently I should be either getting a...
  19. J

    IBS vs. IBD Symptoms

    Hi all, So I went to my gastroenterology appointment on Wednesday and same story as the past two and a half years... The modern culture I hate that we live in: "computer knows best". I.e. well you have these symptoms but tests are all clear so you must be fine. He asked if anyone had suggested...
  20. J

    Toilet Stuff (Sorry)

    Hi, sorry to ask about such a disgusting and humiliating topic but I think it's important. Whilst I've known that I display pretty much all of the symptoms of Crohn's, the one I have which I've never been able to find out about is the amount of time on the toilet... I used to always go after...
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