50 shades of UC
Posted , 5 users are following.
Okay so I think I'm a "newbie" to UC but I've been feeling isolated more and more and decided I needed to share my story to those who just might understand that it's not just "having the s***s":
I was diagnosed in 2015 after contracting CDiff at work in a skilled nursing facility. I continued to have symptoms after I was CDiff negative (diarrhea and blood, 10-20 bowel movements a day depending on the severity at any given time). I was given a formal dx of UC and thus began the mesamaline drugs one by one....every last one I tried..Unfortunately, one would work and then a month later, stop working. Then uceris.....To fast forward, after 2 years of hell, I ended up with CDiff again and in the hospital for a week. I think this was when I finally let myself acknowledge I have a disease and I allowed myself to grieve that my life would never be the same. (AKA I had a secret pitty party). Still, I think I'm the only person in my life who fully understand WTF is going on with my colon. Even my husband seems.....,confused. I would love to connect with others who simply understand. Period.
Also, anyone who understands the s****y effects of prednisone on your face and body and can relate?! I'm so f'ing sick of people trying to tell me I don't look different when I can look in the mirror and see my moon face staring back at me! Okay, I'm venting. I finally decided to reach out to find other people dealing with this.....so I hope this rant wasn't in vein
0 likes, 9 replies
Steve101uk sarah83556
Posted
Hi Sarah
There is no doubt that when you have a flare up it is all consuming, it really impacts on the quality of your life! Fortunately when i have flare ups they don't last too long ( a couple of months - i hope i am not attempting fate!).
But it is more than just diarrhoea, with the inflammation causing other ailments too. I found that the prednisone gives me low moods, so you are less able to cope with the flare up.
Difficult to know what to say to you, other than you are truly not on on your own. Sometimes it is difficult to see the light at the end of the tunnel when you are in an active flare up, but honestly based on my experience you will come out the other side and you will feel better, honestly, trust me!
As for your hubby, why don't you get him to read this forum so he has a better understanding of the impact.
Finally, i would say read this forum as there is lots of advice on how people manage and control their flare ups.
Also think about speaking to people at the Crohns and Ulcerative Colitis Charity, they have volunteers who manage the switchboard who you can talk to, they are are all people with an IBD condition themselves, so they can talk with experience. Whilst they are unable to offer medical advice, they can provide reassurance based on what other patients are going through. I contacted them a few months ago, i found just chatting helpful.
If you would like me to sort out phone for the telephone support service let me know and i will find it for you.
Big hugs - remember you will get better and feel better.
Steve
sue76365 Steve101uk
Posted
Hi Steve,
I can relate to all that Sarah has gone thru. I have had U.C. for 1 year now . all oral meds have failed,never worked. made symptoms worse. Finally got approval to take Humira. Started it in April,2017. Seemed like a miracle cure after the first month or so. Then symptoms returned. P.A. started me on steroid enemas which helped also at first , now not working again. Then told to take Humira once a week instead of every other week. See no improvement. In fact there is more bleeding now than before any Humira. It's been 5 Months on this drug. I have an appointment next week with the P.A. and think I should stop the Humira all together since it can do other harmful things to my body and it is not working any more. i am so discouraged, at this point. Should i see another Dr.? I surely could use telephone support or something , since this disease is all I am consumed with on a daily basis.
Thankyou for any help you can give.
Sue
Steve101uk sue76365
Posted
Hi Sue
Apologies for delay in responding, i have had difficulty logging on.
Details for the National Association for Colitis and Crohn's Support Line:
Telephone number - 0845 1303344
I have used this service on two occasions and found it very helpful. It is resourced by volunteers who have inflammatory bowel diseases themselves, they are extremely knowledgeable, and although they are unable to offer medical advice, they can point you in the right direction and share with you their experience.
Give it a go.
Hope it helps.
Steve
sue76365 Steve101uk
Posted
Sue.
Steve101uk sue76365
Posted
steve
lynn86118 sue76365
Posted
Sue,
I have had a lot of success with an oral prescription - Balsalazide. I have been taking this medication for 7 years with great results - maybe 3 or 4 flareups a year. This was a huge improvement from my daily battle of diarrhea, bleeding, spasms, etc.... As of January, I completely changed my diet/eating habits and I'm happy to say I have had ZERO flareups since. I realize everyone's situation is different but I hope you find this information helpful and HOPEFUL!
pyns65258 sarah83556
Posted
sue76365 sarah83556
Posted
Sue
lynn86118 sarah83556
Posted
Sarah - You are not alone in the battle of UC. I was diagnosed with UC about 9 years ago. At the time of my diagnosis, I was struggling terribly with the diarrhea, cramping, spasms, gas, bleeding, etc... The pain was so bad it would literally drop me to my knees. I learned that my entire colon was affected by this horrible disease. Fortunately, I have been able to keep my symptoms at bay with medication and DIET. I have been told by doctors that diet is not a huge contributing factor to UC flare ups - I DO NOT AGREE! I have had great success with a prescription called Balsalazide. I also changed my diet and eating habits as of January 2017 and I have had ZERO flareups ever since. Please don't feel alone. There is hope and I would be happy to help in any way I can.