Longest flare up, now worried if ill ever gain bowel control back
Hi,
This is my first ever post.
I got diagnosed with UC around 8 years ago (im now 37 years old)… over the first 4/5 years i had 2 flare ups that lasted around 3/4 months each time…
This current flare started over a year ago now, iv tried all the drugs and had all the camera procedures and it just seems like im going round in circles, during this time iv had period where its “better” but never been 100%… my worry now is i feel like this has now gone on so long will i ever re gain normal use of my bowels… im a man and work on building sites and when i get the “urge” i have around 3 mins to get to a toilet or its coming whether i like it or not.
Has anybody else ever felt like this or am i alone on this 1?
Thanks
Alex
So sorry you are going through this. You are not alone at all. I have experienced similar. I was diagnosed in 2011. For the first couple of years I dealt with chronic constipation. Then it switched to diarrhea and urgency. I also thought to myself, will I ever be able to "hold it" ever again. It was scary. Whenever I had the urgency, it was a now thing. I had to run to the toilet if not I would have an accident. All I can say, is this diagnosis is a journey. Things do change and improve. I now don't deal with this nearly as much as I used to, so I can say I wasn't like that forever and I feel like that will happen to you as well. Be mindful of what you eat before work so that you can try and calm your digestion to help relieve you of any urgency. Also of course, stress is a big factor to this as well. Are you on any treatment from your GI at the moment? -Elizabeth (team member)
Hi, yes managing the urgency is a real real issue, i get about 2 minutes warning… at the minute im on prednisilone but thats not helping at all… iv had an email 2day and they are starting me on the iv drip treatment asap, ill try anything to just get back to a normal life as its been so long now.
Thanks for your reply
Alex
Hi
, I can only imagine how difficult this is for you. When I have been in that situation, it has made it hard to work or have a social life and I know that can take a big toll as well. You mentioned you've tried all the drugs, but that you are also going on an IV drip. Do you know what will be in the IV? Are you being put on biologics? Though each person is different, biologics helped me a lot when I was in your situation and now I am in remission with Remicade/Infliximab. Thanks for sharing and hope to hear from you soon! -Eshani (IBD Team Member)
Hi, yes they are putting me on infliximab so fingers crossed that works for me.
Thanks
AlexI really hope so too! And know that there are definitely different kinds of biologics, so if the Infliximab doesn't make a difference, there are still other options for you. There is still lots of hope. <3 -Eshani (IBD Team Member)
You are definitely not alone on this, and I know it's very difficult. I am sure working on a building site with the urgency can be especially stressful. I have been in a flare now for over 6 months and still the urgency is there which affects everything I do. I was hospitalised and put on steroids and Infliximab infusions in December. Then after tapering off steriods a few months ago flared again. The doctors now saying they will have to try another biologic as it's not working, or else surgery which I am not ok with. I know its so individual for everyone in what combination works. I really hope the infusions help you and allow you to find some sense of balance for work and life. Its a challenging time, so be kind to yourself and have faith that you will find a way through it! I'm so sorry to hear that the Infliximab doesn't appear to be helping. I'm glad they are trying you on another biologics - and know that you can always get a second opinion before approaching the idea of surgery. As you said, it's not for everyone and it's worth talking to a few doctors before making that decision. In any case, I hope it doesn't come to that and that this new biologic works well. Do you know what they are thinking to start you on? -Eshani (IBD Team Member)
