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New, trying to get a grip on this curse...
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Ulcerative Colitis
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rthompson
New Member
Joined : Aug 2014
Posts : 5
Posted 8/10/2014 6:19 AM (GMT 0)
Ulcerative Colitis is no fun as we all know. I have finally got up and made an account on here and just have a few questions. I understand this disease can be completely different per person.
Backstory
I have been dealing with this for 3 years now, It all started with a run of bronchitis and then BAM. At the same time I developed a chest pain, that is more annoying than pain, but seems to make sense its in correlation with UC, which they quickly said costochondritis and still never have looked into further. The first two, well I was stubborn, and never tried to seek medical advice, I just managed with Immodium. When I did, they set me up with a GI and got my colonoscopy, inflammation and all that good stuff...Stubborn me still didn't want to accept it. So since the end of May 2014 I am now hopefully on the road to remission.
Things we have tried are Lialda, which I got a whole year free through shirecares.com, but it seemed to give me loose stools, almost was better without. 1.5 months on that along with Uceris 9mg.
Now they switched me to Apriso and it doesn't give me a negative reaction. I am also on day 4 of 30mg dose of predsnisone.
My doctor has told me I am "lucky" and have done well managing on my own with just immodium, and continue to work full days at my job. I dont ever have pain. Maybe once a month I can have blood when I "go" and then the next stool, no blood. My main symptom is the "gotta go" now one. Worst times are mornings and afternoon. I've tried a few diet changes but no positive effect. Lactose does not trigger it either. I noticed alcohol wreaks havoc for some, but when I do have a drink, which is maybe once a month, I do just fine. I dont know if this maybe relaxes my system, or what.
I was wondering, how long does prednisone take to go into affect? Does anyone have any recipes/ideas on weight gain?
Does anyone have UC with zero pain at all?
Does anyone have this chest pain in the middle of your sternum?
Im a very easy going and positive person, but does it get to you deep down when people say things like "I think its just in your head", etc.?
I just want to get my life back and be able to go out and about
, and not worry about
having to go to the bathroom all the time, any feedback or questions would be greatly appreciated. Thanks for taking the time to read this
arizonahiker
Veteran Member
Joined : Oct 2009
Posts : 772
Posted 8/10/2014 11:54 AM (GMT 0)
1. I have UC with no pain
2. I don't have any pain in my sternum (I'm not even sure what that is)
3. Nobody has ever said to me "it's all in my head." I suppose if they did I'd show them a picture of my colonoscopy.
4. Yes you can go out. Just know where all the bathrooms are, wear extra underwear, take kleenex/water. Most people are truly good and if you ever had an accident they wouldn't point, laugh. That's only in the movie Carrie: "they're gonna laugh at you...they're gonna laugh at you..." Remember that's only Hollywood!
Good luck.
malaika
Veteran Member
Joined : Feb 2014
Posts : 524
Posted 8/10/2014 12:07 PM (GMT 0)
You are indeed very lucky that you have UC without pain.
Pred should be working by now if it's day four.
By ideas on weight gain, do you mean that you want to gain weight or lose the pred weight? If you need to gain, pred should help no end.
I've never heard anybody say it's all in my mind, don't understand why they would. I do get conscious of people just presuming I have a dodgy tummy or something silly like that though, so I always try to explain it in vaguely scientific terms so they know it's serious. So I'll say it's autoimmune, a disease, intestine inflammation or something.
Dairy and alcohol are the obvious things to try eliminate first, but for most people we have to search harder to find out what foods are causing us to be sicker. I'm fine with dairy and alcohol as well but have noticed other food triggers.
It sounds like the anxiety about
being ill is getting to you more than the illness itself. Relax. It's not all that bad, you'll learn to live with it. You should think about
stress relief techniques, that's helped some people with their urgency symptoms massively.
Good luck on your journey and hope you feel better soon!
TroubledTurds
Veteran Member
Joined : Jan 2004
Posts : 8717
Posted 8/10/2014 12:27 PM (GMT 0)
welcome to the myassisablast club !
your life is forever changed - stick around and we'll hopefully be able to help you get through it -
good luck RT
garylouisville
Veteran Member
Joined : Aug 2012
Posts : 9088
Posted 8/10/2014 1:50 PM (GMT 0)
I have never had pain with my UC, even when at my worst. Taking prednisone usually makes you gain weight.
kazbern
Veteran Member
Joined : May 2010
Posts : 8384
Posted 8/10/2014 9:01 PM (GMT 0)
Have you considered rectal mesalamine? Since the biggest issue seems to be urgency, the inflammation is probably limited to your rectum. Rectal meds are more effective there than oral meds, by a long shot. Rectal inflammation is also correlated with acid reflux, which maybe causing your sternum pain. I have no idea why these two are related but it seems a pretty common complaint.
Spartan4Life
Regular Member
Joined : Feb 2014
Posts : 136
Posted 8/10/2014 10:04 PM (GMT 0)
I have the pain in my sternum. I describe it to my doctor as a thick/tight ache...like a shelf is in there. It's not a piercing pain. It's the reason my pancolitis went undiagnosed for so long. I ended up with a cardiologist a year before my UC became more clear. Of course, no heart problem could be found after every test imaginable. Is your UC throughout your colon?
I tend to have issues with constipation because I lose motility when I'm severely inflamed. I think that's why it hurts in my sternum. By the way, you can be loose on the bottom and still constipated higher up. I didn't think it was possible, but it is. This is a crazy ride.
rthompson
New Member
Joined : Aug 2014
Posts : 5
Posted 8/11/2014 5:03 AM (GMT 0)
Thank you all for your responses. It is nice to be able to talk to people who are familiar with all of this.
My sternum pain is weird, sometimes it feels tight, and I can get a big stretch in and it pops.
My UC is throughout my colon, more inflammation was worse towards the bottom.
I haven't had any rectal mesalamine, but I can suggest it to my GI if things don't improve by my appt on the 29th
I am maybe feeling an improvement on the prednisone, but slowly. I'm just getting antsy now I'm on medicine hoping for remission, I admit I can get a little impatient.
So far I have a decent routine that keeps me ok through work by taking my mess with a 16oz glass of water, eating breakfast and then drinking a protein shake. This helps gets things moving and the protein shakes definitely make a positive difference, maintaining my current weight, and overall how I feel.
Once again, thank you all for your responses!!
kazbern
Veteran Member
Joined : May 2010
Posts : 8384
Posted 8/11/2014 2:25 PM (GMT 0)
The prednisone may be making you feel anxious - it does that to some people. Keep an eye on that.
Even if the pred does help you feel better, you should still talk to your DR about
rectal mesalamine. Using oral plus rectal mesalamine is the best practice in treating UC. Prednisone will do a good job (hopefully) of inducing a remission, but it will not last if you don't have maintenance meds on board once the pred is gone.
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