Newly diagnosed.
Posted , 4 users are following.
hello,
So I have recently been diagnosed with distal ulcerative colitis after a private Colonoscopy and a few visits to a GI specialist.
It explains the majority of my complaints which is great because I can finally move forward and start treatment options. Apparently I am pretty inflamed (reading was 540 of calprotien) and have been bleeding a bit.
The frustration is for the past year or two, i have not been taken seriously at all. I have constantly been told the fatigue, aches and pains, stomach pains and general toliet issues are all just anxiety. I have had 3 therapists telling me the extreme tiredness is low mood regardless of what i say or do and tried countless anxiety meds under pressure to get better, which have done nothing.
The problem is my last year has pretty much been spent surviving day to day dealing with the horrible routine we all know. Its made me pretty depressed and anxiety is now as big of an issue. Its impacted my job significant and I have had to drop positions and my wife who has to tolerate me.
I am starting Mazevant XL tomorrow and hoping to see some improvements finally.
Suppose I just wanted to rant more than anything, but can anyone else relate.
0 likes, 9 replies
Joel53242 thomas44921
Posted
That doesn't sound fun! I only got diagnosed a couple of months ago, and I still haven't had a full colonoscopy so I still haven't had a proper diagnosis yet, just 2 flexi sigmoid ones.
I can understand your stress as I've been passed around from GP to GI to consultant to IBD nurse, all who give me completely different advice and recommendations on what to try or do.
If it makes you feel better about your CP reading, my calprotectin came back at <1800! - I felt rough but not awful. I think i'm 'mildly/moderately active UC' as diagnosed so far through my flexi sigmoidoscopys.
Don't give up, i know its easy to get stressed out, but I think stress makes a lot of us worse anyway!
I know its all easier said than done, but you gotta keep your hopes up as much as possible
ro77360 thomas44921
Posted
I've had UC for 25 years, my husband longer than that.
The key to getting into remission and staying there -for us - has been having a top gastroenterologist.
Ours is head of an Institute at a major hospital and is considered one of the best in the U.S.
Until we found him we were foundering.
Now we are both in remission for years, although, due to life's stresses, we each have temporary flares - maybe one a year.
Good luck.
helen50937 thomas44921
Posted
I was diagnosed with UC in February. Previous to that my stomach had often been 'off' but I thought it was IBS. I didn't go to the doctor until I was literally crawling the walls with pain, had terrible diarrhea (sorry can never spell it) and bleeding. I was fortunate that as I had a private health plan I was able to see a consultant the following week and have a colonoscopy the week after which confirmed UC. After prednisalone I moved onto the Mezevant and am now in remission. What did help my anxiety was doing a mindfulness course (and I am not a person who I ever thought would do one) - it helped me to look at things differently, not a magic wand but did help.
However, I am still very fatigued which is a real strain as I have a full time job, have to support my parents as well. My husband is now very frustrated and I feel continually guilty. The consultant hasn't given up and has now ordered an MRI. So I am pretty low, but stay positive as there is an improvement and life is OK with Mezevant 😃
ro77360 helen50937
Posted
i had a really terrible first attack too. not to be gross but to be accurate I was pretty much filling up the toilet with blood. also severe pain and throwing up plus a fever of 103.
A small suburban hospital wanted to rush me into surgery (what a nightmare story that was) at 6 in the morning to remove my colon.
thats when I did an emergency transfer to a major research hospital in my city
There I found the doctor who saved me.
20 years later I still have my
colon. The daily med I take is Delzicol.
kathleen98766 thomas44921
Posted
I am happy to see you are getting help . I am not on any meds .I can't deal with the nasty side effects.I take slippery elm all natural it is great. And i eat healthy. keeping a diary of. every thing I eat and eliminating the food that causes problems
wishing you well
kathleen98766 thomas44921
Posted
I suggest that you go on the internet and look up customer users on that medication
some of these meds can have nasty side effects.I. take slippery elm and eat healthy it had kept me in remission everybody is different .I wish you well
thomas44921 kathleen98766
Posted
Thank you for the replies.
Apparently diet has no baring on UC. Just the usual to avoid, alcohol and spices! Its an autoimmune condition.
I am on day 3 of Mezavant and I seem to be doing better "touch wood". I have seen some differences. Some bad, some worse.
I have got some strange colon pain making it very uncomfortable to lay down now. Kind of feels like a pulled muscle but a stabbing throbbing pain. Its only started since taking the medication. I am also breathless and dizzy, though not sure if new meds or increased anxiety.
On the upside, I haven't had the urgency to run the loo every 5 mins and bloating has decreased which is nice. Going the toliet once, when i am used to 5-9 is a godsend.
Going to stick with it for another week and see what happens.
Normally I am against medication as well however the specialist really stressed the importance of getting this into remission. Really want to avoid getting more ill!
Once in remission, i will research natural remedies 😃
ro77360 thomas44921
Posted
Oddly, my husband and I both have UC and for many years.
We both have the same doctor.
Our triggers are dairy and carogeenan (you have to check the labels for that one.)
We still drink red wine every night. Relaxes us.
We just have to watch out to keep our stress level down (we are both hyper) as we live in a very dense city neighborhood -lots of noise, etc.
We try to offset that problem as we run/jog every day for one hour (3.25 miles) and meditate for half an hour.
Also sleep is uber important!! I do Buteyko breathing (low level intake, mouth closed) to fall asleep and listen to an Audible book on earbuds - something sweet and calming like a Harry Potter.
Oh - we are vegetarians. Lots of good ethnic dishes with spices, garlic, etc.
thomas44921 ro77360
Posted
Thank you very much!
I am hoping that I finally know whats wrong I can work on fitness.
I was hoping to start this couch to 5K app and go from there. I have just started a desk job which doesn't help at all!
Stress has been an issue for a while. I am hoping to improve things with a meal plan and exercise. I have just started this headspace program which is brilliant too.
Interesting about the wine. I thought id have to stop that. I do drink more than I should.
Thanks for the help 😃