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Ulcerative Colitis
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Posted 9/15/2012 6:45 PM (GMT 0)
My honey has been diagnosed with uc since 2005. He takes sulfasalizine and folic acid and about every three months he has to take prednisone. He CONSTANTLY has to go to the bathroom. He does not miss his meds and goes in and out of the hospital about 2 x a year. He hsnt had a solid bm in I dont know how long. He is 29 and is wondering about options for a surgery so that his bathroom visits can be less frequent ( 20-30 x a day is too much).
- will getting some of your colon removed help?
- Is there some kind of work that you can do where bathroom breaks wont get you fired?
- what is a real remission like?

Thank you.
Louies girl
Posted 9/15/2012 6:49 PM (GMT 0)
Wow thats nuts. His GI is ok with him going to the bathroom that many times a day? If so I suggest a new GI. Sounds like he needs to try some different meds including some rectal meds. Where is his UC located? Has he taken any other meds in the past? A real remission is only going to the bathroom once or twice a day with no bleeding, mucous or pain. At least that is remission from symptoms, your colon could still have inflammation.
Posted 9/15/2012 6:49 PM (GMT 0)
Depends on how much of the colon is inflamed. I hardly hear of partial removal. A colectomy can bring relief, yes.

I work in an office and I have spoken to my boss. He was ok about it.

In remission he'd feel like everybody else.
Posted 9/15/2012 7:05 PM (GMT 0)
I agree, if he is communicating his symptoms with his GI and the GI hasn't suggested some additional or different kind of med, get a new doctor.

There are other drugs that can be tried.
Some folks have tried supplements that help, as well as probiotics.
Some of us have improvement by changing our diets.
Everyone responds to different drugs/supplements/diet changes differently. Some things help, some things don't. There isn't an easy answer but at least he could try some different things.

Check out The UC resources sticky at the top of this forum to see what other options are out there.
Posted 9/15/2012 7:17 PM (GMT 0)
It is hard for us to change his GI doctor due to insurance purposes, other GI dr's are far away. But now that I have been reading the other posts on here we are def going to go no matter what. When we told his dr about his bathroom use he shook his head and said "Thats the way this disease is and there is generally no relief and that is how he will be from here on out. It is normal for uc". On a good day he will only need to use the bathroom about 8-10 x a day. He works at a fast food company and they have been understanding of it so far, but its hard for him he gets weak and dehydrated and feels bad. Thank you so much for the help I really appreciate it. So glad to know we are not alone.
Posted 9/15/2012 7:18 PM (GMT 0)
Differant mesalamines , rectal meds , antiinflammatory diet,gaps diet or paleo diet, probitics, fecal transplant etc
I feel bad fOr your hubby and going 20x is too life consuming!! Hang in there u guys
Posted 9/15/2012 7:21 PM (GMT 0)
Thank you. DO you have the option to get the ilestomy surgery or does it have to be a last resort?
Posted 9/15/2012 7:22 PM (GMT 0)
I can't believe his doctor really said that. When I needed to switch my GI I went to mr GP having him refer me to someone else. He made sure my insurance company will accept him.

If the ostomy is an option or not is completly up to him. To me it's the last resort.
Posted 9/15/2012 7:31 PM (GMT 0)
SHERBEAR- Hey what do you mean when you say "where is the uc located?"

louies_girl
Posted 9/15/2012 8:29 PM (GMT 0)
Most doctors don't have much of a clue with this disease but I must say this doctor wins the grand prize. One way or another you need to change doctors, even if you have to get a general practioner. Surely they would know more than this guy does.
Posted 9/15/2012 8:37 PM (GMT 0)
Yes we will def change our dr. My honey came home on his break and he was soo happy that I found this site. He can't wait to come home and read all about other peoples experiences and learn about uc from other people that have uc! Thank you to everyone!

louies_girl
Posted 9/15/2012 8:38 PM (GMT 0)
P.s. I told my honey what remission was and he couldn't believe it!

louies_girl
Posted 9/15/2012 9:04 PM (GMT 0)
The ulcers can effect different parts of the colon. You should look up an illustration of a colon. In my case the inflammation is from the bottom all the way up on the left side. When the whole colon is inflamed we speak of a pancolitis.
Posted 9/15/2012 9:07 PM (GMT 0)
He's at the very top of the list for treatment, there is much more down the list like other forms of mesalamine then on to 6MP or Imuran, then on up to Remicade or Humira.

I haven't been in remission since 2010. I worked in retail and it's amazing I kept my job! I go maybe 10-15 times a day, but now I have a desk job with no customer facing situations and I am free to go to the bathroom as much as I like during my work day. The only hard part of working is getting there and back, but immodium helps me with that.
Posted 9/15/2012 9:18 PM (GMT 0)
I am outraged by what his Dr. said.  Totally unacceptable.  I am very glad you are changing this guy.  Uggh!  Moving on....there are many other things to try first ie: different oral mesalamines and rectal meds (honestly this I think helps so much even if the UC is throughout the colon) Than, things like Imuran and Remicade.  He may want to add some fiber (ie: Metamucil and probiotics)  but add them slowly. 

Anyway, read through this site, learn what you can..change that ridiculous "g.i." and let us know.  Welcome to the forum!

B

Posted 9/15/2012 9:27 PM (GMT 0)
Life's way too short to deal with worthless doctors. While there's no guarantee your guy will be healed, it seems logical that his symptoms CAN get better with better treatment. One does not have to suffer without reason. Get a new GI...trust me, it'll be worth almost any hassle if your man gets better. Good luck and God bless you.
Posted 9/15/2012 9:33 PM (GMT 0)
We were told that my honey has moderate to severe coli***, but he is on sulfasalizine, and from what I see that is like one of the first drugs they start you on, maybe for like a mid case. WHY haven't they suggested something else?, anytime it gets too, too bad to bare with my love gets put on prednisone, but he tries to take the aggravation as long as he can. He has never had remission with prednisone, but he goes to the restroom about half as much as he usually would( like 10X a day) But he needs a stronger long term medication. What do you guys think of remicade? He was give suppositories about 4 months ago and he said that those have given him more relief than anything else, but its not always poss to use them when you are going to the restroom so much!
thanks!

louies_girl
Posted 9/15/2012 9:43 PM (GMT 0)
Remicade was the best drug I have been on but now I have anti-bodies. I've been in remission with it for 2 years. The only reason I stopped was because I lost health insurance when I moved from Germany to the US. Otherwise I'm sure it would have continued to work.
Posted 9/15/2012 10:02 PM (GMT 0)
Your honey should get mesalamine retention enemas. It's great that the suppositories helped him a lot, but they only treat the rectum. The retention enemas will treat the rectum and sigmoid colon, which is about the last 8" of the colon. They should give him a lot of relief.

There is no way that taking prednisone every 3 months is good for him. When was the last time he was scoped?
Posted 9/15/2012 10:16 PM (GMT 0)
Thank you for the blessings. He has got a colonoscopy about 1 x yr. All of this info has really helped!
thank you all again!

louies_girl
Posted 9/15/2012 11:07 PM (GMT 0)
The best advice I can give is to get educated.

Here is a place to start.

Old Mike

http://www.ccfa.org/

Posted 9/16/2012 12:33 AM (GMT 0)
louies_girl, welcome to the forums. Sorry to hear of your partners bathroom trips and troubles. I would really advise seeing a new doctor, thats an unacceptable statement for a doctor to give you.

A lot of us here deal with Ulcerative Colitis /Crohns in our own ways, but one thing is for sure, there are endless options to try before making any decision about surgery.

Ask the new doctor about food allergy testing, stool testing and probiotics. All of these are beneficial to ruling out any infections or anything bacteria related that could be causing such massive symptoms.

As Old Mike suggest, get informed on the CCFA, and look up specific diets your partner can follow as well as supplements and of course meds! Good luck to you both.
Posted 9/16/2012 12:47 AM (GMT 0)
Agree agree agree with everyone here ! SO glad u found this site !! Knowledge IS power !! Goodluck !!
Posted 9/16/2012 1:23 AM (GMT 0)
     Yes, surgery is usually a last resort for us.  It was for me.  I was just so sick of being sick.  Lots of people are able to attain remission with medications, let's hope your honey is one of them smilewinkgrin .
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