Your personal tips and advice for coping with UC.

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Regular Member

Date Joined Aug 2008
Total Posts : 46
   Posted 11/5/2008 5:20 AM (GMT -6)   
I have been reading through a lot of posts here while stuck in hospital on drips and stuff, and although i think that the emotional support that everyone gves each other is fantastic, I also think that this site could benifit from a few simple tips and easy advice.

Please can you add any advice for ways of coping, or imporving your quality of life with UC, no matter how big or small. I'm sure that different people have worked out different things that help them, and although everyone is different, my hope is that some of the suggestions and ideas will help people who are perhaps struggling to cope, even if they only help a tiny bit, I think it is worth trying.

so I guess I'll go first, with my small suggestions:

Try to remain as active as you can. Be it a walk round the block once a day, or something more adventurous (I realise that sometimes a UC flare up can stop you leavig the house, so even just be more active in the house, maybe do some DIY, or clean things. Not only will being active hel maintain some level of fitness, but it will also distract your mind away from your UC, and keep tension in your abdominal muscles, and in my experience has resulted in me needing to go to the toilet less.

This one is really simple. If like me you find yourself getting up multiple times at night to go to the bathroom. Don't sleep on your left hand side! Ideally sleep on your right hand side. (although on back is also better than being on your left). I have fud that sleeping on my left hand side means that my poo just runs straight through the last part of my colon and I have to go at least twice as often. We all know that sleep is important especially when trying to fight illness. so give it a shot tonight and see if this works for you.

Please could everyone throw in ideas and suggestions, no matter how silly they may sound, ha my second one sounds daft, but it makes a big difference to me. If we all share our little findings and ideas, then hopefully we can all benifit from them.

Thanks in advance!

Post Edited (builttoride) : 11/5/2008 4:32:27 AM (GMT-7)

Elite Member

Date Joined Apr 2004
Total Posts : 23551
   Posted 11/5/2008 8:19 AM (GMT -6)   
I think the most important tip of all is to stay on your medications even if you are feeling better. That is the #1 complaint of GI's that have patients with IBD. Many of their patients don't stick with their medication regimine and end up flaring even worse then before which in turn takes longer to get under control. Nobody likes taking all these medications and even if you feel that it is doing nothing, most likely it is - you just can't see the results like you would for lets say by having an illness and taking antibiotics.

Secondly, another important tip is listen to your body. It's hard for a newly diagnosed person recognize the signs of a flare but in time, once you realize that your body is getting ready for a flare, the quicker you can be proactive and stop the flare in it's tracks.
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis(?)~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3rd epidural injection 9/4, Neurontin and Skelaxin
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Veteran Member

Date Joined Aug 2008
Total Posts : 5975
   Posted 11/5/2008 9:25 AM (GMT -6)   
     I agree with both of you.  I have finally come out of a seven month flare.  Builtoride...I was hospitalized for ten days in May...and when I was discharged, felt horrible still.  My family doctor was so sympathetic.  He prescribed hydrocodone for the pain because the pain I was experiencing was so intense it traveled from my colon down into my legs.  The medicine worked but I only took it whenever I really needed it.  At the time, I thought I would NEVER feel well.  It took a very long time, but I kept thinking...this too shall pass...and it did.  I was on prednisone for most of that time.  Whenever I was weaned off the pred for longer than two weeks...wham, the bleeding would start all over again.  My GI doctor has increased the 6MP to 75 mgm and along with the prednisone, I believe I have finally regained remission.  Hopefully it will last a LOOOONG time. 
     Are you being fed through a PIC line?  That is what they had in me and I was scared to death I would pick up an infection.  Make sure you wash your hands several times a day.  I also would sanitize everything I picked up, phone, etc.  Too  many people contract infections while hospitalized, especially us with compromised immune systems.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/ see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.

Veteran Member

Date Joined Aug 2007
Total Posts : 2204
   Posted 11/5/2008 9:47 AM (GMT -6)   
My tip is to take a proactive approach and educate yourself about IBD, how a healthy digestive tract is supposed to work, and what your treatment options are beyond what your doctor offers. Get a second opinion. If you're not happy with the care you're receiving from your GI, find another one. Read everything related to UC you can get your hands on and talk to other IBDers who've learned how to successfully manage their health. Consider lifestyle changes that will improve your health overall and will support healing.
Diagnosed with ulcerative colitis spring 1999.
Maintenance dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Long-term remission with only minor blips.

Elite Member

Date Joined Mar 2003
Total Posts : 10407
   Posted 11/5/2008 10:13 AM (GMT -6)   
Since fatigue is a fact of life with UC and some of our medications can cause insomnia, learn to sleep when your body tells you it needs sleep. An after-work nap can be a wonderful thing when you're pretty sure you won't be getting more than a few hours sleep that night.

Keep a change of clothes in your car, your office and any other place you spend a lot of time. Even if you never need them, it will give you peace of mind.

Carry wet wipes with you. In addition to their intended purpose, they can be helpful in removing the evidence of small "oops" on your clothing.

Come clean with those close to you. Tell them about your condition, then don't dwell on the subject. They want to understand and help, but don't want your UC to become the focus of the relationship.
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
"My life is an ongoing medical adventure"
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.

Veteran Member

Date Joined Aug 2008
Total Posts : 5975
   Posted 11/5/2008 10:24 AM (GMT -6)   
     Here's one for ya....we have an Astro van.  My husband removed the middle seat.  Guess what I put in there....a port a pot...yeppers.  Have port a pot, will travel.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/ see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.

Regular Member

Date Joined Dec 2007
Total Posts : 354
   Posted 11/5/2008 10:52 AM (GMT -6)   
Keep stress down as much as possible!!!!!!!!!!!!!!!!!!!!
Jessica 27/F
Lialda 2.4GM
Citalopram 40 MG
omeprazole(for acid reflex)
Tried (Entorcort EC 9ml/day and Prednisone, Asacol ,colazal, Culturelle, dicyclomine)

Veteran Member

Date Joined Nov 2005
Total Posts : 2045
   Posted 11/5/2008 10:53 AM (GMT -6)   
Like tat one Christine, lol. I think a positive mental attitude is the most important thing to have when dealing with a chronic illness and then a good doctor!!:)



Regular Member

Date Joined Apr 2007
Total Posts : 194
   Posted 11/5/2008 11:34 AM (GMT -6)   
Keep a positive mental attitude (not the easiest thing but keep at it), a sense of humor and learn to listen to your body. I could always tell when a flare was building and more and more I listened and took action before it got too bad.
diagnosed with UC in 1962
regualr meds:
Asulfadine (500mg tablets, 6 daily)
Folic Acid
Zantac as needed
open heart surgery in 2005 for removal of aortic root aneurysm

Veteran Member

Date Joined Jul 2007
Total Posts : 2148
   Posted 11/5/2008 12:51 PM (GMT -6)   
for me, if I am having a bad day, I let myself feel horrible and have a pity party, then I deal with those feelings and pick myself right back up again.

I also have kidney disease and tell myself that worst case I end up with a J-pouch and it could be a lot worse. I think too, what if I had 3 diseases or 4 diseases or 20 or something. I try to think about all the good things in my life and think this must just be karma b/c I have it so good in other area's, family, friends, work etc.

This is just how I cope. I also keep thinking I need to go to therapy, I went once before and it was great.
Beth, 33 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07.  Flare May 08 (from aspirin?).
UC dx'd 03/00 Proctosigmoiditis; Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07. Close to remission since 9/08.
Prednisone 10mg 1xday, Lipitor 10mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!

Regular Member

Date Joined Aug 2008
Total Posts : 469
   Posted 11/5/2008 2:21 PM (GMT -6)   
I agree a positive attitude always helps not just w/ our UC but emotionally as well. If we're positive then our health will be in much better shape. It is truly a frustrating disease and I for one admit that there are days I have a pity part - but then I know I have to keep moving forward.

Diagnosised 8/25/08 GRRR
Started flare mid-May/feeling better but still flaring
Canasa 2x a day
Multi Enzyme
Mega Probiotic
Fiber Wafer
Nictotine Patch
Fish Oil Pill
Multi Vitamin

Veteran Member

Date Joined Mar 2008
Total Posts : 2855
   Posted 11/5/2008 2:22 PM (GMT -6)   
Do whatever you need to do to be comfortable and give yourself peace of mind.
Don't put up with people who get exasperated with your needs.

Use the restroom before you get into a car or or before you have to go into a meeting or before you are in any situation where you might not easily be able to get to a restroom. But if you find you still need one anyway, stop the car as often as you need to, leave the meeting, do whatever.

Take 1/2 an immodium when you will worry about needing to use the restroom, to calm your gut but not block it up. If you know you will be without access to a restroom, take a whole one, or even two!
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete probiotic first, then Forte pills. 
Achieved remission for the first time in many, many years!? Seemed so, but colonoscopy Oct. 6 proved not so, heavy inflammation in ascending colon & will be using Rowasa again. But I AM better.

Regular Member

Date Joined Jun 2008
Total Posts : 20
   Posted 11/5/2008 2:49 PM (GMT -6)   

If you're lucky enough to have someone who cares about you, understands what you're dealing with, anticipates what you need, deflects as much stress from you as possible, kicks your butt when you need it, reminds you about your meds, places a box of Depends where you'll find it (without a word to anybody) etc....

...then you better demonstrate your appreciation as OFTEN AS POSSIBLE!

She's how I cope. I hope you're all as fortunate.

Darryl, 58, Male, FL
Dx w/ moderate left-sided UC in 1999
Colazol, 6 per day / Methotrexate, one 25mg injection each week /  Prednizone, 10mg per day / Calcium, 1200mg per day / Zocor, 40mg per day
Probiotic = Culturelle HS
Good news? Never seem to have complications from any meds.

Regular Member

Date Joined Aug 2008
Total Posts : 46
   Posted 11/7/2008 10:00 AM (GMT -6)   
I definately agree with all those who say you have to keep your spirits high. Mind over matter! If you let your mood slump, everything else follows!

tooth fairy
Regular Member

Date Joined Jan 2008
Total Posts : 98
   Posted 11/7/2008 12:36 PM (GMT -6)   
Really LIVE on your good days. Take a hike, go to the museum, swim in a lake...tickle your kids to tears, volunteer in your community.

When my flares keep me close to the bathroom, I have my laptop handy to flip through my most recent pictures. Seeing me hanging upside down from our tire swing, or running in a 5K, or on a cliff in some state park is always a great reminder that my flares do not last forever.

And find ways to live during the flares...I always have 4 or 5 must-reads handy for my darker days.
Erica, 31
Pancolitis, diagnosed July 2006, at age 29
Imuran, Asacol, Rowasa*(new!)
Experimenting with diet, live culture yogurt and probiotics

Regular Member

Date Joined Jul 2008
Total Posts : 298
   Posted 11/7/2008 1:03 PM (GMT -6)   
When in a flare and using the restroom often, be very judicious when choosing toilet paper quality. :)

I have made this mistake and paid the price. Too cheap turns into sandpaper after a few days, too nice usually crumbles and gives you dingleberries!
Diagnosed w/ Ulcerative Colitis in 1995
32 years old
Living med free  
Currently in remission  

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