anyone else have encouragemnt for remission of left sided uc

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jayce
Regular Member


Date Joined Nov 2007
Total Posts : 382
   Posted 12/29/2007 11:00 AM (GMT -7)   
wow, i need to hear somehting different! i once asked my dr about another chronic disease if any of his patients had success with the various treatmnents and he said that it's hard to know because when people get better they don't call in to report. he only hears from them when they are sick. so maybe some move onto another dr or they don't call in or come to message boards when they are well. i hope that is the case for left sided uc. i'm not the sick one here but my heart can't take it. sorry i'm just lost.
Mom to 19 year old daughter diagnosed 11/07.


TheLori
Regular Member


Date Joined Aug 2007
Total Posts : 277
   Posted 12/29/2007 11:08 AM (GMT -7)   
Thats pretty much the same here, we get on and talk about our pains and problems but not about how we feel good too. I was diagnosed at 2o when i had a terrible flare, and i have gone the last 16 years with minor problems. The last few months have been rough again but I keep holding on to the fact that I went so long with no problems and am looking forward to that again! Hang in there. I bet it is even harder being the mother... But if you have a positive attitude around her it will help.
Lori
38/F
UC diagnosed 1991
Asacal, zoloft,levoxyl


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5136
   Posted 12/29/2007 11:35 AM (GMT -7)   
Maybe you should go for counseling yourself, or to a parent support group. It sounds like your daughter is going to do well: taking the right meds, managing stress, eating a healthful diet, and getting enough rest, plus she already exercises. If she is your only child, you may fixate on her problems and even obsess, which is not good for either of you. Take it from one who has been there! I was diagnosed with UC at the time toxic shock syndrome shook up the medical establishment & got heavy media coverage. My mother could not shake the idea that TSS was what I really had-- for more than a year. That kind of thinking is not helpful to coping with a chronic ailment. It's not that you don't mean well. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily for maintenance of remission)

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 12/29/2007 1:04 PM (GMT -7)   
I have left-sided UC. Colazal, Imuran and Entocort each made my symptoms better, so that with all three I was able to keep up my daily routine fairly well, but I was still feeling bad. Remicade brought on my remission, and I'm doing really so much better. Have stopped the Entocort and am almost off the Imuran. (Tapering gradually because I'm totally scared of going back into flare.)

Remember that the rest of your family still needs you. Also know that your daughter knows when you are "mentally hovering" even if you're not physically hovering over her. This may raise her own anxiety, and could disrupt your relationship with her.

Simply put, you're grieving now. Perhaps some grief counseling or general counseling would be helpful. It's an awful thing to have a sick child and feel powerless, but something that has to be come to terms with.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Intolerant to Asacol and rectal mesalamine preparations.
On Prednisone then Entocort 2001-2006 with only short periods off. 
Current meds are Colazal, Azathioprine and Remicade.
In remission since April, 2006. Remicade has been my wonder drug.
 


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 12/29/2007 1:10 PM (GMT -7)   
Hi PLEASE - the doctor is right that this forum suffers from "selection bias," meaning that the population who posts on this forum is very skewed and not representative of the illness at large. those of us writing are writing because we're struggling. those people who aren't struggling are just out living, even though they have UC, so they aren't writing. you have to remember that there are tens of thousands, even hundreds of thousands people with this disease, and probably only a few hundred on the forum. so most people are out and about and well, and the stories you hear here do not reflect all those many many people doing fine. rest assured that your daughter will do ok. I am relatively young, recently diagnosed, and also still sorting out my medical therapy, so my mom worries a lot too. but, finally my mom understands that the worst case scenario is loss of the colon, and that in the big picture that really isn't that awful. I mean, it would be a hard adjustment, but she knows I would adjust. this isn't terminal or fatal, rather just a lousy disease that requires lifestyle changes. but your daughter doesn't have pancolitis, she has left-sided, so that;s good, as that is a slightly less severe version of the illness. just give yourself and her some time for it to set in and remember the posts here are not the norm. but I will add that when my mom was freaking out about my diagnosis I was much more stressed and upset than when she was calm about it, so I strongly suggest you show a tough face in fron of your daughter, as it is so much harder to eb the child when the parent is upset. this will get easier.
29/Female/NC
Pancolitis dx 3/07
12 Asacol/day
150mg Imuran/day (steroid dependent)
Various vitamins, a probiotic and fish oil.


julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 12/29/2007 2:10 PM (GMT -7)   
It's really true that you hear a lot more online about people who are suffering. Honestly, I've had UC for 10 years and until I found this board this year I had never heard of some of the symptoms that people have reported!

In the 10 years since I've been diagnosed, I've been able to hold jobs, run my own business, travel, write, and keep up my friendships. Having UC is not necessarily a life stuck at home in the bathroom! Sometimes I have 6-10 months when I'm completely flare-free. I think the number of months is increasing each year.

Like everyone here, I would rather be healthy than have UC, but I've developed "a relationship" with my disease. My life is what it is and I don't spend time thinking about what my life would be like if I didn't have UC. It's a survival mechanism. You do the best you can and you go on. I've never met a person who wasn't sympathetic to my problems. If I have to ask for special treatment (shortened hours at work, for example) I just do it.

And, as I posted a while back, there are a lot of amusing things you can do while stuck in the bathroom. I started studying a foreign language and now that I'm healthy, I'm kind of sorry I don't have all that study time anymore! :)

We make the best of it. I know my mother feels bad too, but I always tell her to stop worrying. There are reasons to be optimistic. Treatments are always getting better. And there really are people who have been in remission for years!
-------
UC for the last ten years
Current Meds: 6MP
Past Meds: You name it; I've tried it.


Sideshowbob
Veteran Member


Date Joined Sep 2005
Total Posts : 698
   Posted 12/29/2007 7:51 PM (GMT -7)   
Hello PLEASE,

Keep the positive attitude, and have confidence that this disease can be managed! I have had TERRIBLE flares, but managed to work through them. And with knowledge comes the tools to fight the flares and get over them quicker and easier. Heres my story from 10 months ago:

http://www.healingwell.com/community/default.aspx?f=38&m=737408

I was off work for almost 4 months. Today, I was at the gym, ran the treadmill, hit the weights, and felt like a million bucks. We will all have low times, sometimes very low, but we can bounce back and have good, and extremely good times too. Finding what works for us individually is the key. For me, i am currently using 4000 mg of 5-ASA a day orally, and 4000 mg of 5-ASA rectally. Its a lot, but in my opinion better then the prednisone. But if it stops working, I cannot discount pred again.

Keep the faith, and just keep learning about UC as there are so many things that have worked for so many people.

And if I haven't already, welcome to the forum! :)
35 year old Male, Husband, Father of the best three kids in the universe.
First Flare was February 2005. Diagnosed June 2005-left-sided Colitis, suspect it has since spread. Started 4000 mg Oral Salofalk June 2005-stopped January 2007. Remission until November 2006. Been in a flare to various degrees since November 2006 to February 2007. Currently in remission.
Presently on 0 mg Prednisone-down from 60 mg!
Weekly 4000 mg Salofalk enemas.
Daily 4000 mg Salofalk oral.
Started Omeprazole 20 mg February 2007.
Co-Moderator-UC Forum


theklep
Regular Member


Date Joined Nov 2007
Total Posts : 75
   Posted 1/2/2008 1:33 AM (GMT -7)   
I was suffering from a flare about a month ago and I am now in a remission. It really just takes time and figuring out meds. Some people just have it worse than others clearly. But I have only experienced two flares in 2 months since being diagnosed. I don't know enough about my body just yet but like everyone here you must imagine people live their lives outside of being sick with UC. I don't check the boards as often but I try to keep it up to let people know you can be in remission and be active. Good luck and keep the attitude positive and it will get better.
Jeff, 23, Diagnosed July 2007 probably had it since 2005 but no real symptoms till July 2007 *Left Sided UC*
Lialda - 2.4mg 2x Day
Rowasa 1x (for spot treating and flare ups)
Centrum Multi-Vitamin 1X Day
Lexipro- 1x Day 10Mg
Ambien- 1x Day 10mg
Omega 3 Fish Oil- 2x Day

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