Struggling with IBD diagnosis
I have had a hellish time since late last September when my IBD symptoms started. I have had issues ranging from constant stomach aches, endless diarrhoea through the day (and getting up in the night), bleeding and a horrible swelling type feeling in my bottom. I have lost almost 2 stone and am now just above 6 stone :( . I had a colonoscopy on Monday which I found very uncomfortable as the sedation did not work on me. The report back showed my entire colon is inflammed and the doctor said it is most likely ulcerative colitis but could be crohns. I started on steroids and a maintenance drug on Monday evening but don't think it is working as am still getting diarrhoea (Although nowhere near as much) and my stomach/bottom still feels swollen. I am scared this is my life now and am terrified I will always be in discomfort. I am finding it hard to come to terms with that I have a chronic condition which could hospitalise me and cause a lot of problems through my life. Please can anyone offer some support? I worry this condition will consume my life :(
@Jenni855 You can join us in disability support. Chronic conditions are included there. I know some people with IBD where it's really well controlled and others where it became very serious. There are more treatments than there used to be, so there is at least hope.
I think many chronic conditions do get easier for people to deal with over time partially because of knowing what works and doesn't for symptoms after trial and error but also it starts to become more familiar to ourselves, with better coping techniques. That isn't to say that some days don't just really suck though, because that happens too.
I feel very depressed tonight. Stomach feels sore and aching and worry this is my life now. It's just horrible.
@Jenni855 I'm sorry, some chronic illnesses are really hard to deal with at times.
I just wonder how I got here from where I was. My health was so good up until Autumn last year, now I am spending Saturday nights crying, curled up in bed as the intestinal aching is so bad. I can't imagine living like this, it is draining :(
Feeling more and more depressed and fearful by the day
@Jenni855 Are you getting any help in dealing with this? It can be lots to handle.
I think I am going to have to get counselling. There are too many other things going on in my life alongside this. Everyone needs support from me yet I am starting to feel resentful. I am the one who has just been diagnosed with a chronic illness yet they all seem to forget that. I am sick of that and tired of the symptoms I still have. Mit is exhausting
@Jenni855 I think counsellors should really be part of health care teams when it comes to chronic illness. I have a social worker at the rare disease clinic, but it's not the same thing. I hope that therapy starts to make things a little easier.
I agree, the emotional side is as hard as the physical
When (IBD) is suspected based on symptoms and history, a series of tests may be used to confirm the diagnosis. In some situations, IBD may be suspected, but other causes for symptoms must be ruled out first through diagnostic tests. In some cases where IBD is the working diagnosis, it may be difficult to distinguish which form of IBD is present.
Its been confirmed. I have pancolitis which is a severe form of ulcerative colitis.