hello and a question about mornings

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Lavas Laerk
New Member


Date Joined Apr 2013
Total Posts : 4
   Posted 4/26/2013 10:14 AM (GMT -7)   
I just registered here and it's really comforting knowing that there are other people with the same issues as myself.

I thought maybe I could ask for some advice about dealing with mornings. Often I have to go a couple times in the morning, and don't always get a lot of warning before I go into a state of extreme discomfort, until i can get to a toilet - something I know you are all familiar with. Usually this isn't a big problem since I work at home but sometimes my family wants to do special trips and for some reason these always involve getting up really early, stressing out, and hitting the road ASAP. This is a worst case scenario for me. Any advice for dealing with these special situations without searching for bathrooms on the road in a panic?

Some things I am thinking of:

- try not to each much the day before
- avoid spicy, rich foods
- could Imodium help? I haven't tried it before and I wouldn't want to experiment on the day I have to go, in case it somehow backfires.

Any other advice?

thanks a lot!
Ulcerative Proctitis for 20 yrs, but learned Dx Feb 2013
Canasa on/off

dontscopeme
Regular Member


Date Joined Jun 2012
Total Posts : 284
   Posted 4/26/2013 10:15 AM (GMT -7)   
I don't like taking more meds than I need so no pepto, imodium, etc. I would just try sleeping earlier and waking up earlier.

Michelejc
Forum Moderator


Date Joined Jan 2011
Total Posts : 2011
   Posted 4/26/2013 10:20 AM (GMT -7)   
Welcome to the forum.

On the days when the family wants to do special trips, I suggest you get up earlier just to make sure that when you are ready to go on the road, all will be ok.
MODERATOR-UC FORUM
54, female - diagnosed with ulcerated proctitis/mild colitis
Canasa - once a day
Lialda - once a day
VSL#3 DS - 1/2 pack a day
Zocor - 40 mg
Boniva - once a month
Calcium with Vitamin D
Glucosamine
Magnesium
Herbs -
Valerian - when needed for sleep
St. John's Wort, Black Cohosh, ginger

Lavas Laerk
New Member


Date Joined Apr 2013
Total Posts : 4
   Posted 4/26/2013 10:25 AM (GMT -7)   
I suppose getting up earlier makes the most sense! I usually feel very crappy when I do that but it's probably better than the alternative! Thanks for giving me the hard truth!
Ulcerative Proctitis for 20 yrs, but learned Dx Feb 2013
Canasa on/off
currently experimenting with HLC Mindlinx probiotic

quincy
Elite Member


Date Joined May 2003
Total Posts : 29952
   Posted 4/26/2013 10:56 AM (GMT -7)   
You're being undertreated for your UP...ask the doc for rectal retention enemas (Rowasa or the generic mesalamine).

You're flaring it seems....the enemas will help.

No to the Imodium and certainly as well to the Pepto.

What exactly is the consistency/look of the stool? any diarrhea?

q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma);Effexor XR 37.5 (depression)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care+Primadophilus Reuteri capsules @ bedtime)
~Metamucil capsules 6 twice daily with meals; Vitamin D 4500 IU
~URSO for PBC(or PSC?) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!!

sherbear46
Forum Moderator


Date Joined Jun 2011
Total Posts : 3316
   Posted 4/26/2013 11:11 AM (GMT -7)   
I agree with the eating lighter the day before and getting up earlier the next day.
Co-Moderator UC and Breast Cancer forums
Sheri-40 years old

Diagnosed UC/IBS April 2009-Left sided Jan 2013 Endo showed gastritis and Colonoscopy showed only 2 cm of rectal inflammation
Diagnosed in Jan 2013 with Chronic Uticartia

Meds-2 Lialda, Protonix, Allegra, Singulair, Xyzal, Vitamin D3, Hydroxyzine (as needed), probiotics, Rowasa twice a week

Little Buddy
Regular Member


Date Joined Jun 2010
Total Posts : 52
   Posted 4/26/2013 1:51 PM (GMT -7)   
I agree that getting up earlier is a good strategy. I don't work from home, so now that I'm in a flare I get up quite a bit earlier and do a quick, gentle workout to get things going (I have some 10 minute Pilates videos). I drink coffee as early as possible and try to encourage at least 2 bathroom visits at home. This still usually means one more once I get to work (sometimes RIGHT when I get there), but it really lowers my anxiety and makes me feel more in control. What sucks is that I love to sleep, but I actually feel better all day doing a little exercise / movement in the AM.
38 YO Dx 9/2009 with left-side UC. Last scope 11/12 downgraded to UP.
Flare since 12/12. Started Uceris 3/2 and Rowasa. Lialda x 3.
Alt Treatments: Folic Acid, Calcium, Vitamin D, Olive Oil, Melatonin, Align, Zyrtec,
Diet = heavy on the Spinach + Resistant Starches

Canada Mark
Veteran Member


Date Joined Jan 2013
Total Posts : 3482
   Posted 4/26/2013 5:14 PM (GMT -7)   
Honestly - the truth is this:

It's time for your family to realize things are now different. YOU... don't need to change or do anything. If a trip is planned, well, it needs to revolve around you to some degree. This is just the way it is now.

All you need to do is talk with them about it.

Things will be different.

It took me a loooooong time to clue into this. Once I said look, things are just different now - early mornings are the worst possible time for me... Everything changed and they became very supportive. There's always a way to work around the issue with support and understanding. But that all starts with a simple conversation...

garylouisville
Veteran Member


Date Joined Aug 2012
Total Posts : 9088
   Posted 4/26/2013 5:45 PM (GMT -7)   
Mark has a good point. Also, getting up earlier than the others is helpful. I wouldn't do Immodium unless you have diarrhea. If you do then that can help.
Asacol 400mgs 2 pillsX3; VSL#3 112.5mgs 1 pillX2; Prescrip Assist Probiotic 1 pill X 2;Vitamin D3 5000 ius 1 pillX2;Bentyl;DAO;Folic acid

Discontinued: Robinul; Natural - peppermint oil, Inflaguard (Boswellia), Pepto Bismol, Omega 3 fish oil, Imodium, Beano, Lactaid;Zymactive, Renew Life Probiotic 80 billion, Florastor, DGL, Monolaurin, slippery elm;black cherry concentrate

Lavas Laerk
New Member


Date Joined Apr 2013
Total Posts : 4
   Posted 4/26/2013 8:35 PM (GMT -7)   
Thanks everyone for the advice.

quincy: I hadn't heard of rectal retention enemas, thanks for that, I will go in and see my gastro doc. I am just starting to learn about this disease and I might need a new doc - this one prescribed the Canasa suppository but didn't really give me any other advice or direction. The stool lately is kind of loose, not well-formed, but not really diarrhea.

Canada Mark: This makes a lot of sense. I have been avoiding the issue to some extent because it's embarrassing to talk about it. I will give it a shot. Thanks.
Ulcerative Proctitis for 20 yrs, but learned Dx Feb 2013
Canasa on/off
currently experimenting with HLC Mindlinx probiotic

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 4/26/2013 9:38 PM (GMT -7)   
For me, getting up extra early doesn't solve any issues....I still have to go, it just starts earlier and I end up going more in that day of being up earlier....I used to think I could trick this IBD too, but I haven't been able to...even if I eat lighter than usual the day (or even days) before, I still will poop frequently...but that's just my experience...everyone is different....best of luck to you, hope all goes well!
bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~

canadagal
Veteran Member


Date Joined Jan 2011
Total Posts : 599
   Posted 4/26/2013 10:53 PM (GMT -7)   
yup mornings have never been the same...

on typical day while in remission I always give myself minimum 2 hrs before out the door for work.
Regardless when I get up however my body has a clock of it's own and 8 am seems to be a given.... Work has been very understanding in giving me grace with my arrival time within a 15-20 minute window....

trips and special activities (say: appointments, hikes, etc... ) have HAD to change. I never book flights in AM, and work social events around it.

Often peace of mind goes a long way - have a cleanup/change bag in the car (i've never needed it but knowing it is there helps). Keep a bucket handy when toilet not always available, consider adult diapers, know where toilets will be.

When NOT flaring I can usually tell when my body is done for the day... and dont' worry much after that point. When flaring.... life as I know it has to "change" at least temporarily..... THAT is the new reality for me since UC diagnosis.
40yr old female
1st symptoms 2006, UC diagnosis 2007.
1st flare - 1 year. Solid remission with Mesalamine for 3 yrs.
2nd flare - 1 year (Jan 2010 til 2011). steroids (dependant -didn't work) Eventually 4.8g mezavant and 4g salofalk enema and sunflower/spinach got me into remission.
3rd flare - Mid-Aug 2012 – 6 good weeks in Dec/Jan but now battling round 2 with Mezavant, Salofalk enemas, mutivitamines, probiotics (and spinach/sunflower)

InSoFla
Veteran Member


Date Joined Jan 2011
Total Posts : 4691
   Posted 4/27/2013 6:08 AM (GMT -7)   
Lavas,
 
Welcome to the forum.
 
You've gotten some great advice, I especially agree with CanadaMark.
 
Let us know how the talk goes with your family.
Rx meds didn't help me. But 4.5 mg LDN +Paleo diet +supplements=REMISSION.Protein shakes w/almond milk,Maca powder,L-Glutamine,D-Ribose,chia seeds.VSL#3,K2,VIt. D3,slippery elm bark powder.For more info,my protocol is the 11th post at this link: http://www.healingwell.com/community/default.aspx?f=38&m=1666318
If you have any questions, you can find my email address at my profile.

London Lurker
Veteran Member


Date Joined Feb 2013
Total Posts : 1045
   Posted 4/27/2013 9:51 AM (GMT -7)   
I agree with enemas and talk to the family. I went for years without realising that all UCers pretty much have urgency in the mornings unless completely in remission, and even when in remission, what we have been through when in flare means that anxiety that increases urgency will come at the need for a BM for most of us because of all the memories of misses or near misses that our body is carrying. Once the internet arrived it was such a relief to know I was not alone and I have had to speak up about it at work and elsewhere otherwise others can have you down as too lazy to push yourself to be places early.

Leaflets about colitis usually also mention that things are worse in the mornings so try to get some for your family to read maybe?

The advice I have had from medics is don't get into regular use of immodium, it carries a risk for UCers.
Proctitis 1984
Pan Colitis 1988
No major flare ups since, many well years between mild to moderate flares, some years without meds
No special diet other than low fibre and rare alcohol
Currently Mezavant XL x 2 per day
Salofalk Enema x 1 per day
B complex sublingual
Vit D (ceased K2)
Probiotics sometimes - started Mutaflor, VSL#3 March '13, good results so far

March '13 10 days on Flagyl
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