Im new here

[Goldengirl1995]

I am a student and my student life hasn't been normal. I got diagnosed with crowns where I was rushed in to hospital in an emergency with severe abdominal pain. Th at same day I was told that I would have to have an emergency surgery. This caused me to have a temporary stoma. Its been a year now since I had my emergency surgery ad a few months since I have thankfully got my stoma reversed. However, I am still dealing with the repercussions of everything that happened the last year. My health has been up and down for as long as I can remember but this experience has really affected me in more ways than one. Since my experience, I have more anxiety and depression than I have ever experienced. I try so hard every single day but sometimes my exhaustions is a lot to handle. Not having any who actually understands what I go through makes me feel very lonely because no one I know has been through the things that I have so have no way of relating. It makes dealing with my symptoms a lonely process. I don't know what I really want from this group but hey ho, I guess I just want to talk to someone can actually understand and not just "imagine" what I'm going through - and think that they know what I should do to get myself better. Just some one who actually understands.

[Valbaty54]

Hello,

You have had a traumatic time, having to go from diagnosis to surgery to reversal in a fairly short space of time. Most people have such things spaced out over a longer period so more chance to get your head around what's happening. Are your family and friends sympathetic and supportive? Hope so. Your body has been through a lot so exhaustion is not surprising. Are you on any meds now? If you are on Facebook do look for Crohns groups to join where you will get instant help and info. X

[ywiggan]

Hiya

Crohns 41 years now no surgery but its planned for coming months as most meds have stopped working for me.

My son is 23 also has crohns believe me i can completely understand the need to talk about things its so needed with this ilnness.

Contact me if you just wanna let of steam or chat.

[SORRELHIPPO]

I do know some of this, diagnosed with Crohn's in 1986 when 34, ended up not working for 5 or 6 years, as took ages to find a medication that not only worked but also did not have side effects that stopped me living a reasonable life. Pain and some Meds will contribute to your fatigue, and have you had steroids (prednisolone)? these are invaluable but with me contributed to both anxiety and depression. I ended up keeping numerous lists like diaries, needed to know how foods affected me, certain Meds, when my fatigue was worse etc. gave ammunition when dealing with consultants. Also helped me return to work. I proved I could work 18 hours a week, but if I inceased to 20hours for more than one week, fatigue kicked in, always started to relapse when I allowed the fatigue to take hold. I found my biggest problem was other people!! they were fine when I had relapse and in hospital or having surgery, but most could not cope with the concept of a chronic illness. There is this view that you are ill, Drs get you better, then it is all over!! the idea that you will always have the diagnosis, and need to protet yourself, is alien to many who think the NHS is a miracle worker. Speaking as someone who has had this for 30 odd years I can say I have some understanding of what you are going through, but still can be surprised by the directions that this illness will decide to take, just have to roll with it and not beat yourself up when you need to rest, I worked 3 shortish days a week, but at least 2 of the others were spent sleeping, in order to ensure I could continue to work. Wishing you well

[Crohniehound in reply to SORRELHIPPO]

I can certainly relate to a lot of this. I was diagnosed in 1983-84 aged 14 or 15 (the docs don't seem quite sure any more looking at my copious notes - need a library just to store them!). I went through hell to start with, on steroids, in and out of hospital, then having what should have been an emergency right-hemicolectomy which the local hospital totally botched, before demanding a referral to St. Marks. They sorted me out and I seemed well again for a few years - off meds, went to college etc - but then the Crohn's hit me again, so I needed another surgery. That's pretty much how it continued for most of the 1990's for me, a couple of years or so at a time between surgeries, before going back on low dose steroids and pentasa. Trying to work self employed has not been easy (private tuition). There's little or no support if I need to take time off (including financial). I developed major complications and needed more surgery in 2007 which has left me with a fairly short small bowel (approx 1 metre). Still not right after that, so started Azathioprine and all fairly okay until last year, when my hospital wanted me to change to Methotrexate. All seemed to go smoothly - except I could tell the Crohn's was still there. Now MRI results from July show the Crohn's is still active and I've developed a stricture again (only found out last week!). Not had any major symptoms this time, but in hindsight I have been getting more and more tired, mentally and physically, probably through trying to push myself and worrying about other things this year. One minute we can feel like we're on top of it and then this can happen to bring us back down again to the depths. We can't take Crohn's for granted even when it feels like it's quiet. Other people definitely don't understand this. In the blink of an eye it can ruin plans and just totally gets in the way of leading a 'normal' life, whatever that is. Just have to keep taking each day as it comes.

[nancynancy]

i had severe crohns a few years back had 3 surgerys so id understand