My name is Jennifer and I'm hoping that someone out there can be a support to me and my family. My dad was diagnosed with UC in the fall of '02. It has been a downhill battle ever since. He is only 52 yrs old and recently retired from his job as Chief of Police. He expected to enjoy an early retirement to its fullest, but sadly, he has been so sick with UC that he is barely able to do anything.
He was on asacol briefly, but it began to cause problems with his kidneys. Now he is on basaliside (sp?), 6MP, prednisone, an anti-cramp med, and i believe one other med. As each med has been added or upped, promises have been made that this is finally the one that will help him regain an active life. His entire colon is ulcerated at the time of his last colonoscopy.
I was at my parents house tonight and he isnt even able to leave the bed. He is experiencing severe cramping, urgent bowel movements which have included blood the past 2 days. It feels as if all efforts are only worsening the problem. I found this site and am posting as a last resort to find some support.
My best friend was diagnosed with UC in '97, but she too finds herself feeling without much support or adequate information. Her UC is limited to the lower regions of her colon and seems to be a bit more manageable. However, she was recently diagnosed with fybromyalgia in connection with the UC. Is this common?
If anyone has any advice concerning doctors, meds, treatments, or just encouragement...it would be GREATLY appreciated.
hi, i have UC, but i can't really answer your questions because fortunately i haven't had any major problems with mine so far. it started out as blood in the stool and some mild/moderate cramping... but i started taking asacol back in january and i haven't had any problems at all since then... so i'm afraid, even though i have the same disease, that i can't really offer much support or information because i've never gone through what your dad and friend are going through. however, the reason i wanted to post is to wish you good luck and i hope everything turns out ok for you and your family. i know it's hard to get support from people who don't have a disease and have no idea what you're going through, if not physically, definately mentally. i recently decided to participate in a clinical trial for a new UC med and i had a hard time trying to get my family, in particular my mom, to understand why i wanted to do it. it's hard to explain to someone how you are feeling when they really have no idea. but hang in there, and i know there's some other people on this board who have UC that can be more helpful to you.
thank you so much for taking the time to reply. its good to hear that you're uc is currently under control...its an encouraging thing. i pray that things go well with the clinical trial. keep posting and keep us all updated.
Your dad has a tough road ahead of him. There are options such as what he's using at this time, but surgery is also another that he might want to consider if he's had no improvement. From what I've read and heard, it gives back quality of life. Yes, there's an adjustment, but I've never heard regret. Interesting, because that's what I fear for my future...surgery...but it's comforting for me to know that's the consensus out there.
My UC is in the rectum/sigmoid....I've been on Asacol and Salofalk retention enemas (varying scheduling depending on flares and remissions) for over 15 years. It to me is a miracle med and has controlled my UC well (meaning it hasn't spread farther up the colon). I tolerate it very well. As of my last colonoscopy, no cancer...so that's good. I'm also on Effexor XR for depression...has indirectly helped my UC methinks.
Remember also that it takes time for the meds to kick in and the flares to quiet down. It's not a fast process at all.
There is definitely a correlation between UC and other physical symptoms. I don't know if fibro is directly related (I thought it may be Herpes related...but I think that of UC as well)...meaning if one's colon was removed whether the symptoms of fibro would still be there. But, there are many UC and CD sufferers who have severe body aches, arthritis, joint aches, fibro, eye problems, skin problems, liver disease, kidney disease.....etc.
I'm sure I've had fibro most of my life, long before UC. I have asthma as well. Who knows how it all is connected....they are all autoimmune disorders and quite definitely a struggle to live with all or any. I have good days, almost no body pain at all, other days I'm dragging my butt and feel as though I've been run over by a truck. Sometimes they correlate with flares, other times not...the weather certainly seems to affect my pain level. Exercise, stretching, yoga...etc are all good for fibro and UC. Antidepressants are also an option since they seem to have an effect on the emotional/gut relationship. Seems to work for some with depression and UC.
You're right that the distal/lower area of UC is more managable because it's the most accessible from oral/rectal meds. What med is your friend using at this time?
I really feel and understand the frustrations you have now knowing your dad is really suffering with his UC. There are other preparations that people have tried. Many have used as supplement to meds....prebiotics and probiotics, AMP, acupuncture, SCD (specific carbohydrate diet), whip worm therapy, even take up smoking because there seems to be a connection with UC (not sure about a nicotine patch)...
Other immunomodulating or immunosuppressant meds used are imuran, remicade, 6-MP. If remicade is used, one has to be tested for TB in the system.
Has your dad been checked for clostridium difficile (c. diff)? Make sure that has been checked as well, it's difficult to treat, but can be at the same time as UC, or confused with UC. It's treated with antibiotics...interestingly enough it's caused by antibiotics as well. Talk about a puzzle for sure.
I do hope your dad is able to get his symptoms relieved and soon be on the road to recovery. Your support is definitely important to his well-being, but I believe you already know that or you wouldn't be here.
Best to you all,
quincy
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It's all a matter of perspective!
I was just diagnosed with UC today , yep 37 years old and I have a feeling I've had it since my early 20's but doctors kept telling me I'm too young to have stomach probs .Every time I showed concern about blood in my stools they said to increase my fibre intake , which I did , and my symptoms would seemingly go away .
Even today , just before the doc started the colonoscopy he said''you know , I bet you its just hemmorroids'' .I said , ''well , I disagreee and I bet we'll soon find out wont we ''
Sure enough , I'm in his office 30 minutes later and he's telling me I have UC (and like I say , have probably had it since age 22 ish)
they took biopsy as well , so he said to come back and see him when results arrive etc..
I dont know what to say to help your fathers situation as I dont think my UC has ever really taken on that serious of a problem just yet .I did however have a 4 week span in which I had alot of blood in stool back in June (which told me to tell my doctor to stop scrweing me around and send me for a colonoscopy)After four weeks of constant blood in stool /irregular bowel movements I started loading up on METAMUCIL 3 times a day and within two or so days my bloody stools started to ease up and go away .
Has you father ever tried metamucil + a few fruits (apple,orange) after dinner ?
I find it makes a big difference with me as far as keeping myself regular
to boot , I have arthritis (severe , bed ridden w-out celebrex) and after doing some research I see that arthritis is a condition many with UC have ...
Ulcerative Colitis 
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