Freakin out and worried

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Nick9011
Regular Member


Date Joined Jul 2009
Total Posts : 27
   Posted 7/14/2009 6:26 AM (GMT -6)   
alright im going to just ask this question becuase i am very freaked out.  I was wondering how worried do i have to be about a terminal illness right now after having colitis for 5 1/2 years or so. 
 
I had blood work done but no results yet, as well as a stool sample.  I guess i am just trying to find that peace of mind because i hate waiting.  I hate putting myself through this massive worry.  Is anyone else like that?

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 7/14/2009 7:21 AM (GMT -6)   
UC is not a terminal illness and is only linked to colon cancer. However, your risk for colon cancer is low up to 10 years with the disease and then increases after that. A few things you can do to protect yourself is always stay in touch with your GI. Your GI will screen you for colon cancer periodically. Also, try to maintain remission. Keeping inflammation down will reduce the possibility of colon cancer down the road. I also suggest that you get more familiar with UC; knowledge is power and right now you could use some information to help you cope better.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 7/14/2009 7:23 AM (GMT -6)   
Hi Nick9011, and welcome to HealingWell. I'm assuming that you have been dx'd specifically with Ulcerative Colitis? And what is the reason you are having a stool sample and blood work done; has the doctor given you reason to believe it's something more than UC because of other symptoms? I've had UC for about 5 years, and I have no reason to believe that I will get a terminal illness from it -- but then I live each day for...each day. What meds are you currently taking? Have you had a colonoscopy? I know, lots of questions, but it helps us know you better and maybe ease your fears. Take care, and again, welcome!
Carol

Remicade - will have my 29th infusion on July 8
Vitamin B-12/Biotin, Probiotics, Vitamin D-3 (2000 IU)
 
Co-Moderator for the UC Forum
 
 


Nick9011
Regular Member


Date Joined Jul 2009
Total Posts : 27
   Posted 7/14/2009 7:31 AM (GMT -6)   
Lonielane
there was no specific reason for the stool sample is what im guessing. I've had the UC for 5 1/2 or 6 years. and the only meds i am currently taking are 400mg tablets or assacal. 2 pills three times a day. i had a colonoscopy about 3 1/2 years ago and they said at that time things were pretty mild. After that, for a two year period which is until now, i was in remession. not doing the best of things probably, beer, some smokes, and very spicy food. ( i love or loved spicy food too)

in the doctors apointment i was given a rectal exam too. No blood to the naked eye but there was some that was tanish he said. Which he believed it was a sign that things were slowing down.


Also i was in a motorcycle accident a long time ago that resulted in a broken arm in 4 places a femur in 3 places, a shattered knee cap, broken rib and a fractured vertebre, fractured nose. I had surgery and all that junk with hardware and all in me. I was prescribed any pill antibiotics but was probably given IV antibiotics.


What are some coping methods that one would suggest, im sure im starting to drive my wife crazy. I can't say enough good things about her. I love her to death.

Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 7/14/2009 7:39 AM (GMT -6)   
Well, it's a good thing that the doc said your UC is slowing down, and that you don't have any blood that you can see. Were you in a flare with blood and urgency? How many times a day do you have a bm? It sounds like the Asacol is doing a fairly good job, but maybe if you are having urgency you might want to try enemas. Did the doc say where your UC was located in the colon?
Carol

Remicade - will have my 29th infusion on July 8
Vitamin B-12/Biotin, Probiotics, Vitamin D-3 (2000 IU)
 
Co-Moderator for the UC Forum
 
 


Nick9011
Regular Member


Date Joined Jul 2009
Total Posts : 27
   Posted 7/14/2009 7:52 AM (GMT -6)   
it was primarly located on my left side. my BM's are 1-2 times a day. Usually one in the morning and one in the afternoon. This morning i just had a lose bm with no apparent blood. And a bad day now i would 3 at the very most.
But when my flare 1st started there were periods in teh day were i would go 3 times in an hour. But that was on tuesday of last week and apparently its gotten better, in terms of frequency anyhow. I don't see blood all the time but sometimes its there. I know what your thinkin, im a wimp probably lol.


do you think my accident a few months ago and taking all those meds, even percocet and vicodin and muscle relaxers (robaxin) had anything to do with it? I was also taking ibuproben and aleve other days.

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 7/14/2009 7:57 AM (GMT -6)   
The stool sample is to check for blood. This is a routine test for a GI and shouldn't have you worried. No one knows why UC flares when it does and you can spend a lifetime cogitating over this one aspect of the disease. Stress can have an impact on UC; it doesn't usually cause a flare but can make one worse.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 7/14/2009 7:58 AM (GMT -6)   
My UC is located on the left side too. I'm currently in Remi remission, and have as many movements that you have per day, so I'm thinking you are doing pretty well right now...but everyone has a their own perspective of what feeling well and remission is. I think I'd just stay in touch with your doctor if you have symptoms that worsen and it sounds like your doc is on top of things by doing a stool and blood test. 
 
As for the accident, I'm sorry that it happened, but I cannot say for sure if the stress and meds from that could have caused the UC. I'm not sure any of us know what the cause really is!  
Carol

Remicade - will have my 29th infusion on July 8
Vitamin B-12/Biotin, Probiotics, Vitamin D-3 (2000 IU)
 
Co-Moderator for the UC Forum
 
 


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 7/14/2009 8:12 AM (GMT -6)   
Nick, it may help you to know that the life expectancy for people with UC is no different from the expectancy for people who don't have UC.

I've had UC for almost 8 years now, and my mother had colon cancer (but not IBD.) I get my scopes every two years and know that even if I do develop cancer, it will be caught early when it's almost 100% curable. I also have a variety of hardware in my body from multiple orthopedic surgeries (thank you, Prednisone and Entocort), the most recent being a total knee replacement.

Nick, it's hard enough to live with a chronic health condition; adding anxiety makes it infinitely harder. You may want to consider some short-term counseling to help with stress management and anxiety. It's very common for people with chronic illness to become depressed and/or anxious, so never be afraid to ask for help.
Judy
 
Ulcerative colitis forum co-moderator
 
Moderate to severe left-sided UC diagnosed 2001.
Flared for 5 years, finally in remission with Remicade since March 2006.
Avascular necrosis in both shoulders is my "forever" gift from steroids.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. 
"My life is an ongoing medical adventure"
 


Nick9011
Regular Member


Date Joined Jul 2009
Total Posts : 27
   Posted 7/14/2009 8:26 AM (GMT -6)   
Judy,
thank you so much for that. I think i might wanna talk to someone. This year has been the worst. Between my accident and dealing withe mental aspects of that, my wifes young uncle passing away, my sister getting divorced i have a lot of my mind.

So thank you. And yes i guess it is time for a colonoscopy last one was a little over 3 1/2 years ago, I guess because i was in remession for 2 of those years.

are there any tricks you would recommend to cope while i look for a counsler?

quincy
Elite Member


Date Joined May 2003
Total Posts : 30610
   Posted 7/14/2009 9:43 AM (GMT -6)   
Hi Nick...I too would suggest a counsellor or therapist who can help ease your way of thinking regarding all you've been going through and all that's happened to you. Sometimes it's near impossible to even have any areas left in the brain for coping when so much is going on with healing, etc.

Firstly, you need to be on rectal meds.....UC starts at the rectum, and that will help keep things in check and ease your worry that it may get worse, etc.

Are you going to physiotherapy to help you recover from your accident?

I don't believe the meds started your UC, but considering what you've been through at this time, I know if it were me....I'd be flaring for sure.

The fact that you're having small #bms could mean your flare is limited to the lower part of the rectum...as well, the vicodin will slow the bowel a bit and lessen the transit time of the bms...which is helpful for this time considering the amount of pain you must be in and running to the bathroom, etc.

Do the rectal meds to deal with the rectal inflammation. The mindset is really what will help you cope with your issues, and learning the process is better than someone saying try to change your focus.

You have a legitimate reason you're anxious...recognising how your thinking process works will be helpful in intervening and allowing yourself alternate thinking options. It'll be helpful in all your life events, not only UC.

Did I mention rectal meds??

Keep us posted as to how you're doing.

quincy
*Heather* Status: maintenance Asacol 6 daily + Salofalk enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


Nick9011
Regular Member


Date Joined Jul 2009
Total Posts : 27
   Posted 7/14/2009 10:29 AM (GMT -6)   
Are you going to physiotherapy to help you recover from your accident?
-- yeah im pretty much done with this since the insurance caped out with therapy. Im to the point where i have a schedual to follow from a therapist to do it at something like a LA Fitness

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 7/14/2009 10:48 AM (GMT -6)   
For me, knowledge is power. It helped me a LOT to learn as much as I could about UC as quickly as I could. Now, I'm perfectly comfortable with the idea of having UC. I know that there are still many more medications I can try that many, many, many people have great success (in terms of staying in remission for long stretches of time), and that if it all gets bad enough, I can have a colectomy and chances are VERY high that I'll go on to lead a completely normal life. So, I'm at peace with my UC.
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Apriso (4 pills ONCE!! daily), Rowasa twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 7/14/2009 10:59 AM (GMT -6)   
Remember that we keep a closer eye on our guts (via scopes etc) than most people so, for example, we find that precancerious stuff early and nip it out!

Other people don't get colonoscopies and find out too late they have some problem that could have been stopped if caught early.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol maintenance for 20+ years; used prednisone & Rowasa for flares.  Probiotics (Ultimate Flora, 50 billion), salmon oil (omega-3) when I can remember. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet.
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ learning what normal is~ wow


Nick9011
Regular Member


Date Joined Jul 2009
Total Posts : 27
   Posted 7/14/2009 12:13 PM (GMT -6)   
all very good advice and points. I am definitly going to get more educated on my colitis. I also take some sleeping aids such as unisome, i want to look up tonight if that effects the asacol or the colitis at all.

any other sites people recommend to get more education?

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 7/14/2009 12:20 PM (GMT -6)   
The Crohn's and Colitis Foundation of America (www.ccfa.org) has the best basic information. I started out there, and then did google searches on things that interested me. But, I think it covers most of the stuff you need to know, especially the different standard treatment options. If you want to know more about surgery, there's a great j pouch site. Even though I'm a long, long way from needing surgery, it still helped to learn about it.
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Apriso (4 pills ONCE!! daily), Rowasa twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 7/14/2009 12:20 PM (GMT -6)   
Nick, if you go to the top of the UC page, there is a locked thread called UC Resources, and also the home page for UC which has many good resources. Also, HealingWell's newsletter this month just came out and it is highlighting UC.


Carol

Remicade - will have my 29th infusion on July 8
Vitamin B-12/Biotin, Probiotics, Vitamin D-3 (2000 IU)
 
Co-Moderator for the UC Forum
 
 


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 7/14/2009 12:26 PM (GMT -6)   
Carol, how does one get the newsletter? I probably overlooked it when I signed up, but if you could help a girl out, I'd greatly appreciate it! :)
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Apriso (4 pills ONCE!! daily), Rowasa twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 7/14/2009 12:28 PM (GMT -6)   
Hi Fruitgirl; if you go to the top of the screen under HOME, click on the newsletter underneath, and you can subscribe to it. It's very informative! :-)
Carol

Remicade - will have my 29th infusion on July 8
Vitamin B-12/Biotin, Probiotics, Vitamin D-3 (2000 IU)
 
Co-Moderator for the UC Forum
 
 


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 7/14/2009 12:31 PM (GMT -6)   
Thanks! :)
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Apriso (4 pills ONCE!! daily), Rowasa twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).


Nick9011
Regular Member


Date Joined Jul 2009
Total Posts : 27
   Posted 7/15/2009 6:34 AM (GMT -6)   
i want to thank everyone for replying and sharing their advice. Yesterday I had no apparent symptoms of my UC at all. Everything was normal. I wanted to keep it going so i ate extremely well ( so I thought), chicken for lunch with corn, and steak (done medium) with steamed broccoli.

Felt great and slept well, alarm went off, had the usual morning urge and went to the bathroom, and there it was again, blood in the BM.

I am still waiting to hear back from my doctor too, i had blood taken last week on thursday. I dunno if they have the results yet, but i really hate the fact that some office don't call you unless there is a problem.

im emotionally doing better i think, i've come to terms and accepted that i have UC and will always have period flare ups from time to time. But when i do its about the maintenance and mental state to stay in that i need to focus on.

Feel free to reply, just keeping ppl updated.

Nick9011
Regular Member


Date Joined Jul 2009
Total Posts : 27
   Posted 7/15/2009 8:00 AM (GMT -6)   
BTW i was meaning to ask how long do poeples flares last? For instance how long do you go with seeing blood in your stool to not seeing blood in your stool then back to seeing it.

How much is a lot? and what does a blood clot look like in your stool? I'm not sure if i ever had one.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16288
   Posted 7/15/2009 1:33 PM (GMT -6)   
I was flaring for over a year but it was not severe, just a blood on the paper. I think if your flare is hard to treat, it can continue with no end until you find the right treatment option. I am sure I would still be flaring if I weren't taking drugs. I think they can last for a year or for a week depending on how aggressive you are with treatment. I have heard of people going into remission without drugs but I haven't had any luck going that route and I've tried a lot of herbs, vitamins and diets. I guess we are all so unique, what helps one doesn't help another.
Diagnosed with mild proctitis in March 2007: Treated with Canasa (as needed)
December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
May 09: Off Canasa, taking Asacol (9/day)
Back on Canasa every other night + Asacol (9/day) + Probiotics + Iron
Reducing to 6 Asacol/day + Canasa + Probiotics + Iron - So far so good!!! -SPOKE TOO SOON! Back to 9/day...


quincy
Elite Member


Date Joined May 2003
Total Posts : 30610
   Posted 7/15/2009 1:45 PM (GMT -6)   
Nick...take the improvements and know that if you are bleeding...that means that the tissue is very fragile and will take a while to heal. I bled with every flare for the first three years and some flares lasted months.

But, in saying that....improvement was continual with using both oral and rectal 5-Asa meds....so please do request the enemas.

Ive been at this for over 20 years and each flare symptoms are very minor .... ones that others would consider nothing based on the magnitude of what their flares are.

Hang tough, and try not to think of blood in the toilet as a failure. You will have urgency in the morning....most of us will with flaring and I still have it sometimes if I have gas behind stool...no biggie...it is what it is.

Awesome you've accepted having UC...doesn't mean you like it. It means you have to learn how to deal with it.

You could also ask the doc for dicyclomine which migh help ease cramping if you have it during the day or at night time....

Keep us posted as per the results of your tests. As well....request a copy of them be sent out to you or available for you to pick up.

quincy
*Heather* Status: maintenance Asacol 6 daily + Salofalk enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 

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