Advice needed please
Hello, can you please offer me some advice? I’m currently awaiting a colonoscopy but due to corona virus this has been delayed. I’m 23 year old female in Birmingham UK. Based on my research I believe I have Crohns but obviously I cannot know this until after the colonoscopy. Whatever this is, it’s really getting me down, making me anxious and I can’t live a normal day to day life.
For the last 12-13 months I have been experiencing diarrhoea minimum 5 times a day. Sometimes up to 9 times. waking up minimum once sometimes up until three times. I understand that people with Crohn’s disease have flare ups with the disease, but that most of the time they can go on to lead normal lives. Though there are times which have been worse than others, particularly after travelling or when I’ve been particularly stressed, I feel that I am constantly for the last 13 months on edge around what I have been experiencing.
Over 1 year since solid poo. Have had accidents when outside and have had to go home to clean up. Too embarrassed to tell anyone that.
Effects daily life. Can’t even take walks without panicking if there’s going to be a toilet near by because of the anxiety and because of the previous accidents. So embarrassed to go into detail with people.
Experienced loss of appetite for months now suddenly over eating in the last 2 weeks.
Also anaemic and have an over active thyroid, and taking carbizimole and iron supplements. I was also given a supply of propananol to ease the anxiety which did work for a while but I am now feeling worse after a “flare up” and with the corona virus situation.
Rarely have blood in the stool but most of the time quite mucasy.
I’m really struggling with coping with this as I feel like I can’t go anywhere even to a shop too far away, especially with most places being closed and no toilets near by. Please can anybody offer me any advice?
Hi Caitlin! I am so sorry to hear you are struggling so much but please know you are not alone. It seems unfair to be left without answers during these uncertain times when our anxiety is already so high.
Is there anything else specifically you are looking for some advice on? Please be gentle with yourself during this time and please reach out if you need anything. Sending hugs and comforting thoughts. Erin (InflammatoryBowelDisease.net team)
Hi
, thank you for reaching out and for having the courage to share some of your journey and struggles. We know it certainly is not easy, especially right now. Everyone here understands what you're going through- as Erin says, you are not alone in this! I just wanted to piggy back off of Erin's comment and supply a resource as well that I thought might be helpful. https://inflammatoryboweldisease.net/treatment/complementary-and-alternative-therapies , https://inflammatoryboweldisease.net/living/restroom-anxiety I hope you're able to get to your doctor and find some answers soon. Please keep us updated on how you're doing, and come back anytime to connect and ask questions, vent, etc. Warmly, Pam (team member) 
Really sorry to hear about your struggles
. I totally relate to the issues you are having, and as the comments above have said - you're not alone!
I know the virus has caused so many issues, even for those who are already diagnosed due to tests, procedures, surgery and routine appointments being cancelled etc.
You're right, IBD can flare and then go into remission, but the remission is usually achieved with the help of treatment, which I understand you cannot start until you're actually diagnosed.
In terms of advice, it's very difficult because everyone is so different. For me, it was a case of just having to be prepared for every situation. So if that meant wearing incontinence underwear and carrying spare clothes everywhere (leggings can be super light), then that's what I would do. In the UK, you can purchase RADAR keys, which give you access to the accessible toilets that you need a key for - check out Amazon! My main issues were often just pain and urgency, so I always had painkillers (prescribed) and loperamide (Imodium) with me!
I hope your colonoscopy can go ahead soon!
- Sahara (team member)
