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Ulcerative Colitis
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Posted 6/27/2011 8:21 PM (GMT 0)
Hello everyone,

For the last 5 months I have been convinced that I have Ulcerative Colitis. I have been to the doctor, but because of wait times to get in with specialists, I am still 2 months away from seeing a gastrointerologist. It started with rectal pressure and pain the in area of my sigmoid colon, but bowel habits were fairly normal. In the last week or so, my knees started hurting and now I am going to the bathroom very frequently. I cannot imaging waiting 2 more months to get some help. Should I go to the ER? There if very little blood in stool.

Posted 6/27/2011 8:27 PM (GMT 0)
When I went to the ER, they gave me vicodin and sent me home with a $5000 bill twice. Call your specialists office and tell them you're having massive discomfort and going to the restroom with blood in stool multiple times a day and see if they can atleast put you on something or rush your appointment.

Its probably UC but you wont know for sure without a colonoscopy.
Posted 6/27/2011 9:08 PM (GMT 0)
Thanks. I just called my future GI doc's nurse. Hopefully there is something they can do. How do people handle the mental side of this? I am not sure I am prepared to deal with this for the rest of my life.
Posted 6/27/2011 9:12 PM (GMT 0)
hopeful, it is very difficult to deal with at first but things do get easier. Especially if you find a treatment that is reliable and works for you. It could be as simple as taking a couple AsacolHD pills each morning. I hate dealing with this, the worst part for me is the unpredictability but I Have to take things one day at aa time and try to think positive.
Posted 6/27/2011 9:18 PM (GMT 0)
hopeful04,

I would definitely keep calling and asking about any cancellations and tell them how much pain/distress you are in so you can get in earlier to see the GI.

Good luck, and I hope you feel better.

Posted 6/27/2011 9:36 PM (GMT 0)
Is this knee pain typical - it just a constant burning sensation. It does not seem to matter if I am just sitting around or if I am up and moving. I have read that about 25% of people with UC have peripheral arthritis. Are most people able to continue working?
Posted 6/27/2011 9:43 PM (GMT 0)
Keep bugging them. Tell them you can absolutely not wait two months to see a dr. That's crazy. Make enough noise and they will see you sooner. Can't tell you how many times this has happened to me.

Posted 6/27/2011 10:08 PM (GMT 0)
hopeful04,

Yes the knee pain could be what's called "Reactive Arthritis" which sometimes comes with UC.

I suffer from terrible pains in my joints, and bones as well - it starts in my neck, goes down my back, and into my legs and feet (all the bones in my feet hurt when I walk too) ... haha lots of fun having UC... confused

When you finally get in to see your GI guy, make sure you tell him about the knee pain too.

Posted 6/27/2011 10:21 PM (GMT 0)
The joint pain and mental stress of this disease is very normal and takes time to learn to deal with. I use exercise as a way but I understand in your situation exercise will probably be impossible. Breathe and try relaxing as best as you can. I used computer games and movies to get my mind off the UC too. Basically anything that can help you zone out..
Posted 6/28/2011 3:49 AM (GMT 0)
Thanks everyone. Seems like a good group of people here. I am nervous, but I guess there isn't much I can do until I get a diagnosis. Which I am still hoping not to get, but it seems pretty likely based on my symptoms. It is hard not to think back and wonder how I would feel if I didn't let myself get so stressed out a few months ago.
Posted 6/28/2011 11:53 AM (GMT 0)
hopeful04,

Good luck with getting an earlier appt. and with seing the doctor.

Don't forget: you're the patient and bring a list of questions to ask him.

Let us know how you're doing.

Posted 6/28/2011 12:02 PM (GMT 0)
InSo, I think you are confusing Reactive arthritis with Peripheral. Reactive arthritis is primarily due to post bacterial infections and the body's auto immune reaction. Peripheral is typical for Uc, it wax and wanes with flares and is non-destructive.

www.medicinenet.com/reactive_arthritis/article.htm

That's not to say that Reactive arthritis can not be seen in Uc, because with Uc it is not known exactly what causes it; it can be from a bacterial infection - or perhaps triggered by one.

Hopeful, be the squeaky wheel. Definitely try to get in sooner. But don't blame yourself in the event you have it. It is NOT your fault. Some research has found that a certain faulty gene is the culprit and all it takes is a trigger to activate it. The research is still ongoing, so hopefully if it IS a faulty gene, they can find a way to switch it off. But do not place blame on things beyond your control. We can do the what if's if we are blue in the face and all it gets us is going in circles chasing our tails.
Posted 6/28/2011 12:20 PM (GMT 0)
Red_34,

Thanks Red for clearing that up, and for the info. I went to see my gastro yesterday to tell him how bad my joint/bones pains are and he told me that typically, when the uc symptoms calm down, the pains go away. I guess the operative word is" typically" ?  That hasn't been the case for me. The pain is constant :(

Posted 6/28/2011 12:31 PM (GMT 0)
InSo, have you seen a rheumatologist? If the pain is not going away, even after your flare has ended, you may have a more serious issue going on such as RA.
Posted 6/28/2011 1:45 PM (GMT 0)
Red_34,

No, I haven't seen a Rheumy. Frankly I am afraid to go, because I don't want to be put on Humira, Remicade and all those high power guns.

Do you think I should go?

Posted 6/28/2011 1:50 PM (GMT 0)
I would, even if it's just to get checked out. Because if by chance you DO have RA, even though you don't want those medicines, the meds can help stop damage. I went to a Rheumy because I was having constant joint pains as well. But luckily I have no sign of RA or other destructive forms of arthritis. He is ruling it as Peripheral right now even tho my Uc is in remission. I also have some mild OA in my right hip (found this out by CT scan).
Posted 6/28/2011 2:11 PM (GMT 0)
Red_34,

Ok Thanks for th advice. How were you checked out and diagnosed? Another reason I am putting this off, is I don't want the $big bill that comes with finding out.

I have sucky insurance and had to pay everything out of pocket when I was diagnosed with UC. Bill came to $4-5K after everything was done... and I'm still paying it out :(

Posted 6/28/2011 2:36 PM (GMT 0)
InSo, how long have you been off Pred?

My diagnosis was by the process of elimination. I had every test imaginable and when they all came back negative, that is when I had the ruling of Peripheral.

Sorry Hopeful....didn't mean to hijack your thread.

InSo, if you care to discuss this further you can create a new post or contact me via email. :)
Posted 6/28/2011 2:43 PM (GMT 0)
Red_34,

Thanks Red.

Posted 6/30/2011 5:51 PM (GMT 0)
RED, I dont mind the hijacking. I actually just put some things together and think that I am actually dealing with chrons. My throat and esophagus are a wreck, and I had some pretty serious gastritis about 5 yrs ago that went away on its own after 7 months of testing. Nobody ever mentioned chrons to me. I even went to the Mayo clinic and they said, it is probably nothing serious, it should go away with time. And it did. I think it was an upper flare of Chrons. Who knows. Still not having any luck getting in to see anyone sooner, but my GP gave me some pain meds so I can function. Do most arthritis flares hurt worse in the night?
Posted 6/30/2011 6:05 PM (GMT 0)

wrxBRAH said...
When I went to the ER, they gave me vicodin and sent me home with a $5000 bill twice. Call your specialists office and tell them you're having massive discomfort and going to the restroom with blood in stool multiple times a day and see if they can atleast put you on something or rush your appointment.

Its probably UC but you wont know for sure without a colonoscopy.

I feel sorry 4 u.. My son went through same way..
Posted 6/30/2011 7:07 PM (GMT 0)
hopeful04,

You have to keep calling and make a fuss, so they'll have to give you an appt. Keep up the pressure on them so they'll see you sooner. You certainly have to be seen and evaluated properly.

Do most arthritis flares hurt worse in the night?

I don't know about other people, but mine at night is the worst.

I hope you'll be able to update us soon with an appt date with your GI.

Good luck.

Posted 7/3/2011 4:04 PM (GMT 0)
I am not good at making a fuss. I am very good at worrying myself sick though! I think I did a pretty good job at getting some attention. I got ahold of the GI docs nurse and promised that I wasnt a crazy patient, but that I am in so much pain that I cannot wait. I even offered to take a week of vacation and camp out in his waiting room just hoping that someone no shows or he finds an extra 20 min for me. She said she would talk to him and at least get some testing started so that the ball could get rolling. I still think this might be chrons instead of UC.

In an unrelated note. I read a post about the pro surgery mob. I dont want to bring this back up again because it sounded like a heated argument, but I did want to give some input from a brand new, probably soon to be diagnosed uc or chroanie...

This is a scary disease for a newbie. I have never heard of entocort, rowasa, humira, 6mp, remicade, natural cures, etc before but it all seems daunting. The thought of none of those working for me seems even scarier. I actually find it reassuring to know that some people have great luck with surgery. Its like - if all else fails, I could handle that. It is just another option that I am glad exists. Everyone is different and it seems as though everyone finds a unique way of dealing, I am thankful to see all of the options and success stories with a variety of treatments. It makes me feel like my life is not over, because I have so many options that may work.

Thanks everyone for your support while I patiently (ha!) wait for testing and a diagnosis.
Posted 7/3/2011 5:08 PM (GMT 0)
@InSoFia

RA and UC rarely come together. I've never heard of one case ...

But AS and USPA (undiferentiated spondyloartropaty) are common for UC and CD.
Go see a rheumy - your telling that your pain is worse at night, i can relate that to my experience and to many other experiences i've read on this forum and elsewhere.
you can refuse the medication, but a diagnose would be welcome.

anyway - LDN - should work for such thing too....
Diet works for sure.
Posted 7/3/2011 5:19 PM (GMT 0)

hopeful04 said...


This is a scary disease for a newbie. [ clip] I am thankful to see all of the options and success stories with a variety of treatments. It makes me feel like my life is not over, because I have so many options that may work.

hopeful,

Because I recall exactly how scary it was for me four decades ago, when there was nil information out there, I've spent a couple of weeks here trying to tell newbies that the hope and options exist - this is not the end of life. I'm happy you gleaned that out of here. As to the surgery, I felt the same way first learning about it. People spoke about their experiences like it was the best thing that ever happened to them, and that gave me also peace of mind.

My suggestion is to take it easy and not to stress out, because like you said, the options are out there. The more you educate yourself about your individual situation, the better you will be off. Little by little.

Hopefully you'll get the help you need soon and get back to your life.

Take care.
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