• 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. valleysangel92

    Newbe

    Hello Sorry I haven't replied sooner, I've been pretty sick and haven't checked in for a while. Have you had any of your test results back yet? IBD can vary a lot from person to person, because of this, treatments vary in success too. For some people, the first treatment they try will work...
  2. valleysangel92

    Calprotectin level question

    Hi, I agree, it seems like your daughter still has active inflammation going on which is likely to be causing her symptoms. Unfortunately it can take up to 3 months for drugs like Remicade to really get into the system, so while it's really unpleasant the fact she's still having symptoms...
  3. valleysangel92

    Onset of tongue ulcers and throat pain prior to biopsy of Jejunum

    I totally understand, I went undiagnosed for almost 5 years and by the time I knew what was wrong I was desperate for help and to just feel better, most of us here can relate to that in one way or another. It's really hard waiting for treatment when you're struggling but having a good idea of...
  4. valleysangel92

    Crohns and covid vaccine?

    Hello, I'm in the UK so policies may be different here, but I have been told by my doctors that I should continue to follow what's known as shielding. This means that I need to stay in my house most of the time, no crowds, no going into other peoples houses, no public transport, wearing masks...
  5. valleysangel92

    IDK what's wrong

    Hello, Am I right in thinking you don't have any form of diagnosis? There are a lot of conditions that can cause issues like the ones you are describing and IBD is definitely in there, another one to look into is coeliac (celiac in the US) disease. IBD symptoms can vary a lot from person to...
  6. valleysangel92

    Onset of tongue ulcers and throat pain prior to biopsy of Jejunum

    Hello, I have suffered with ulcers in my mouth and on my lips for years, it was one of the first indicators of the major flare that lead to my diagnosis. My IBD nurse has since diagnosed me with oral Crohn's. It is fairly common for people with IBD to get sores in the mouth and even the...
  7. valleysangel92

    First Appointment Advice

    Hello, My advice would be to make a little diary of your symptoms, anything that seems to make them worse or better including foods and any OTC meds you might have tried, make sure you list all symptoms, even ones you might not think are related. Have a list of questions some good ones to...
  8. valleysangel92

    Flare or something else

    I have always tapered off 5mg per time as MLP is describing, generally the slower you go the easier it is to taper, it may differ between doctors but it's what many advise.
  9. valleysangel92

    Azathioprine Experiences

    Unfortunately responsiveness does vary between hospitals but I do know a lot of services have been disrupted due to Covid-19 , my hospital shut down the IBD line for a few months because the IBD nurses had returned to the wards so you might find that when things eventually calm down it will be...
  10. valleysangel92

    Flare or something else

    I think this is going to be different for everyone but some of the ways I tell are - * The severity and duration of my symptoms, if I vomit twice one day and then feel fine the next, its most likely a bug, when its a flare I have intermittent nausea and vomiting for weeks * The location of...
  11. valleysangel92

    Sorry I need to vent at pharmaceutical companies - part 2

    I have had coeliac disease since I was 14, I have very severe disease and my lips swell at even a trace of gluten so I absolutely understand how important it is to know what's in everything you put in your body. In the UK, all potential allergens have to be clearly marked in the pharmaceutical...
  12. valleysangel92

    Azathioprine Experiences

    Hello and welcome to the forum I was on azathioprine for a short while about 6 years ago. Yellow urine is actually a very common side effect and usually nothing to worry about, blotchy skin can be a sign of a small allergic reaction though, so I would agree with your GP that it would be wise...
  13. valleysangel92

    Questions to ask when newly diagnosed

    Hello, Sorry I'm a bit late on this but I hope I can still be helpful. I was only 19 when I was diagnosed and I went to a lot of appointments alone so there were a lot of questions I didn't think to ask. Ask where your disease is and how severe they think it is . Ask if you have any...
  14. valleysangel92

    Hamster or mouse.

    I definitely see why people find it difficult to come to terms with the fact that some medications for Crohn's disease come from animal sources and contain animal ingredients. Unfortunately, every medicine currently in use in the US and UK will have been tested on animals at some point, there is...
  15. valleysangel92

    Modulen drink

    I think the drink in itself is safe to drink, but I think if you're planning to use it as a replacement for food you definitely need to let your medical team know. I was on modulen for 6 weeks as an adult and had to be very closely monitored. If you just plan on using it as a supplement you...
  16. valleysangel92

    Hello again

    It must be so hard having to fight insurance to get what your kiddo needs. Makes me ever more grateful for our NHS. Thankyou I will ask for a referral. I think in the UK GPs can do some allergy testing etc so that might be the place to ask first as specialist appointments are taking a really...
  17. valleysangel92

    Hello again

    I have only been given infliximab (inflectra) but because I already have issues with asthma and some issues with my heart beat plus I seem to have developed a sudden tendancy to allergies (I developed allergies to 3 drugs in one year 🙃) my consultant and main ibd nurses have said they would be...
  18. valleysangel92

    Newly diagnose late teen son

    Hello, Not a parent but I started getting Crohn's symptoms at 15 and was diagnosed at 19 so I hope you don't mind me chipping in. I mainly wanted to let you know what I've found helpful from a symptom management point of view.. Heat is one of the things a lot of people, I use a heating pad...
  19. valleysangel92

    Unfortunately I am currently having what we think is a flare up of my Crohn's. Hopefully a...

    Unfortunately I am currently having what we think is a flare up of my Crohn's. Hopefully a simple course of steroids will be all I need to get back on an even footing.
  20. valleysangel92

    Exciting new vedolizumab injections!

    I understand your hesitancy, but unfortunately for a lot of us just changing our diets won't cut it. Before I started vedolizumab, I had 10 hospital admissions in two years, all at least a week long, I did EEN, very low fibre/low res diets, I did azathioprine, mercaptopurine, surgery, NMB with...
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