What is a typical day like?

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Regular Member

Date Joined Feb 2006
Total Posts : 261
   Posted 12/9/2009 9:49 AM (GMT -6)   
I know that people all have many different degrees of Crohn's disease. Many symptoms and varying severity of disease.  So, what is a typical day like for you?  Do you have pain every day? Do you have diarrhea every day? Urgency everyday?  Etc etc etc, you get the idea.  I'm just trying to see what Crohn's disease is like for someone besideds me!! lol
33 year old female
CD of Terminal Illeum and Rectum Diagnosed 12/04
Unable/Unwilling to use immunosuppressents due to Melanoma history in 2000.
Illeocolonic Resection 1/08  (18 inches of terminal illeum, illeocecal valve, right colon and appendix)
Current Meds: Pentasa, Fosomax, Iron, Vitamin b12 injections, Vicodin as needed, Entocort 6mg for maintanence.
November'09 colonoscopy shows reoccurance at anastamosis and active disease in sigmoid and rectum

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 12/9/2009 10:04 AM (GMT -6)   
Well I am currently in remission with the Crohns. I have always suffered with more C than D, so take stool softners every night to keep things soft and easier to pass. But when I wake up in the morning I usually have to hit the bathroom within 15 minutes of waking. I usually have alot more joint pain first thing in the morning too, so I take my pain meds first thing. After I get up and dressed I am able to go off to work no problems. Even though I am in remission, I still have bad days here and there, usually because something I ate didn't sit well. Hope that helps a little.
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Elite Member

Date Joined Feb 2004
Total Posts : 20552
   Posted 12/9/2009 2:04 PM (GMT -6)   
I've only ever gotten daily lower back pain during severe flaring (I'm always flaring to some degree, have been the entire 18 yrs of having this DD), but my main issues are frequency and urgency, if it wasn't for those 2 major issues I'd be fine.


Regular Member

Date Joined Dec 2007
Total Posts : 414
   Posted 12/9/2009 2:27 PM (GMT -6)   
A typical day for me is usually urgency and diarrhoea as soon as I've had breakfast, I then take codeine to stop this and ta da the rest of the day I'm fine and can do normal activites, occasionally I have to take a second dose in the evening to see me though until the following morning.

Thats my typical day in remission anyway - which I am most of the time (my remission periods can last 6months-3years) when I flare its severe and a typical day in a flare I will be vomiting and having diarrhoea up to a few times an hour can barely even keep water down and pretty much will be sedated with painkillers for 3 hours out of 4, painkillers wear off after 3 hours usually and will then spend an hour in the bathroom until I can take the next dose and pass out til they wear off and the cycle keeps going. Fortunately the doctors can usually get me an infliximab infusion within a couple of weeks (thats what they use as emergency treatment for me as I can't take steroids etc) so I don't have to suffer for too long but those couple of weeks are the longest of my life! And take such a toll too, I lose about 6kg a week when I'm like that and it takes a good month or so after to rebuild my strength. I really feel for those who have it severe every day, at least so far mine can be treated well and I only have to suffer a few weeks and I spend the majority of my time in remission.

Regular Member

Date Joined Oct 2007
Total Posts : 390
   Posted 12/9/2009 6:33 PM (GMT -6)   
I like this question!  I have 3 modes, totally fine, kind of sick and deathly ill.  This post has a bit of TMI so you are forewarned. 
I am on Remicaide, so most of the time I am fine.  I eat what I want, I run 6 miles every day, I sleep well, I go for cocktails and dinner with my friends and generally enjoy life.  I feel healthy and great!!
When I am kind of sick I have to watch what I eat - I can't really drink alcohol or anything spicy or too much dairy and I wake up several times a night with urgency and sometimes pain.  I feel bloated and my stomach is distended and I have (this is such an embarrassing word to describe it but it's the only one that works: powerful) gas and I find myself running to the loo with watery diarrhea that is filled with blood and mucus.  It's like my insides are shredded and falling out.
When I am deathly ill (this has happened 3x since originally being diagnosed) I have gotten sick to beyond the point of coming back by myself and am in the hospital on IV prednisone and morphine, on medical leave, sleeping most of the day and in general life is on hold.
I was diagnosed with Crohn's Colitis 3 years ago but the signs for ulcerative colitis were there for years (occasional blood in stool, anal tags (fun), occasional pain and diarrhea).  It was like all of a sudden when I was almost 30 there was a switch that flipped and I was sick.  I have other girfriends who have some sort of autoimmune disease and it seems the same story for them, signs along the years then one day late 20's/early 30's, boom.  Why is this happening to us girls when we turn 30?*
*sorry to the boys here :)
32 yr old Female
Crohn's Colitis
DX 12/06
Currently on Remicade, Oxycodone, Protonix, trying to remember to take Multivitamin and Calcium, need to start taking Probiotics and Omega 3-6-9
Presently healing from a flare and 2 week hospital stay, during which abcess was drained by surgeon

Veteran Member

Date Joined Dec 2005
Total Posts : 1768
   Posted 12/9/2009 7:52 PM (GMT -6)   
Along Wednesday's thinking...

My fine doesn't need much explanation. I eat what I want and feel great.

My "kinda sick" involves urgency and D, but no blood. I have a lot of gurgling and can feel when food hits the surgery area. I typically wake up and have to hit the bathroom, and just when I think all is out...there's more to come. It makes it hard to get going when all you're doing is going. Usually after the morning spell, I'm ok until afternoon, and I have a spell of everything wanting out. Usually there's another before bed, and rarely it wakes me up at night. I don't take pain meds very much at all. Occasionally if my belly's upset at night, I'll take a darvocet, but nothing stronger. I do have a lot of nausea, so phenergan is my best friend. I can deal with pain, but not nausea, so when I feel it, I pop a pill for it. I also am very fatigued.

My "deathly ill" is because of obstructions. They can hit so fast, which is the most annoying part of them. In the morning I can feel pretty ok, then it usually hits in the evening and by night I'm in the ER all drugged up. I base my decision on whether or not to go to the ER from whether or not I can sleep. If I can take percocet and sleep it off, I try that first. If it's keeping me up, it's time to visit the ER. Sometimes they keep me there, sometimes not, depending on how I'm dealing with pain. If I am admitted, I'm in la-la land most of the time I'm there from all the pain meds. I watch tv and drift in and out of sleep. It's usually about 5 days of mental vacation.

From 1997 after my first surgery until 2005 I had very minor symptoms, no diarrhea, no nausea, but things changed at about 30 for me as well. I've been in what I consider a flare (though my dr thinks stress from losing my job is causing my symptoms) for the past year. Before being diagnosed, I don't remember having the symptoms I have now, but that was so long ago...

31 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D, sublingual B12, Coumadin

Veteran Member

Date Joined Nov 2007
Total Posts : 4053
   Posted 12/9/2009 8:07 PM (GMT -6)   
I'm in remission now. But even in remission I have IBS. Mornings are toughest. I have formed stools but have to get up early and go to the bathroom to have 3-4 bowel movements over a 2 hour period. I have a lot of pain and pressure before I go, and it's tough to go anywhere early in the am. That means if I have to work at 9:00, I have to get up around
6:00AM! Most days, I'm fine the rest of the day, unless I eat something that causes indegestion, gas, etc. I can't say I ever feel as "normal" as the rest of my family without Crohn's, who don't spend their lives worrying about pooping!

When I have been sick, I get severely anemic. I get bleeding ulcers in my small intestine. I also went through severaly months of salmonella, which was hell, but that is over now!!
50 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007. Also have IBS, and had Salmonella Dec. '07
currently taking Pentasa- 4 500mg pills per day, Metamucil and colace for constipation, probiotics

Elite Member

Date Joined Feb 2004
Total Posts : 20552
   Posted 12/9/2009 9:33 PM (GMT -6)   
wednesday2007 said...

I was diagnosed with Crohn's Colitis 3 years ago but the signs for ulcerative colitis were there for years (occasional blood in stool, anal tags (fun), occasional pain and diarrhea).

signs for ulcerative colitis do not include anal skin tags, those are directly related to crohn's disease (especially when CD is affecting the colon) and when crohn's is affecting your colon (crohn's colitis) then bleeding is common as it is with ulcerative colitis. D happens with either CD or UC.


Regular Member

Date Joined Oct 2009
Total Posts : 253
   Posted 12/9/2009 9:50 PM (GMT -6)   
This is a really interesting topic! Nowadays I usually get up, pee, take a million pills, eat some breakfast and go about my day. Not so last week! I was in bed a bunch... but now I'm back on prednisone and it's really doing good things!
I've only had crohns for about a year and 3 months, and I've never experienced remission but I have lots of good days. I'm able to be in school, commuting, taking 3 courses this semester and I just spend the rest of my time lying down studying and relaxing. So my life is pretty normal with a bit more bowel action then the average and alot more downtime :)
So I guess I concur with the others! On days when I feel good, my life is pretty normal and I just do my thing. When I'm feeling sick or in pain, I spend most of my time in bed! And when I get "deathly ill" I'm sure I'll be in the hospital... such is the life!
female 19, diagnosed crohns december 2008
erythema nodosum
currently taking 40mg prednisone, then imuran or remicade when i taper
feeling scare about side effects but will be happy to feel better :)

Regular Member

Date Joined May 2009
Total Posts : 201
   Posted 12/10/2009 12:26 AM (GMT -6)   
Since having this DD I haven't felt normal except for when I was on Prednisone. Best days, which are most days, I have some rectal pain and pressure and mild occassional pains in my abdomen. If I eat well, this is how it usually is, unless I'm flaring...
Bad days, lots of gas, mucous and the pain and pressure is worse and I can have urgency.
Worse days, same as bad but add bloody mucous and my restroom trips can be every 10 to 15 mins. for just a small amount of bloody mucous. With more yucky gas and more pain.
Very worse, pain in my lower right abdomen which put me in the hospital. Now I'm afraid to get that bad again...
Eating according to the SCD has helped. Staying away from the carbs makes a big difference for me.

Sorry if this was too graphic.
Diagnosed with CD 3 years ago.  Refused to take meds until recently started Colazal. 
 Currently on Prednisone 40mg. Tapering down, now on 20mg.
Colazal 3xday, Antioxidant strips
 Off of the Prednisone!!
I live by faith and not by sight....

Regular Member

Date Joined Sep 2009
Total Posts : 90
   Posted 12/10/2009 3:16 AM (GMT -6)   
Yup, well I can relate to all your comments. During the day its usually pretty good for me. Other times its like: kill me now & donate my good organs to those who need them. ;o\

Early mornings, evenings and a few times at nite are when I go the most. 15-20 per day.
Pain - yes, usually I have some kind of pain everyday - whether its rectum pain, headaches, stomach aches or naesuea [sp].
It does ... of course ... have a lot to do with what I eat - for all of us [what goes in, must come out!]
I barely eat anything. I am small and weigh 100 pounds soaking wet.
I always say: If I could I would live off of sunshine and water, like a plant.
Maybe in my next life.
praying for a good night's sleep and a happy bottom!! :o]
1998: Colitis - removal of colon, temp. ostomy 10 mths.
2000-07: disease free & doing well with j pouch.
2007-09: rectal pain & discomfort, loss of bowl control. diagnosed with Crohns March '09 currently on: Emtec, Azathioprine [Imarun] & Remicade. Med History: steroids, predizone, cipro, loperamide [imodium], gravol, previcid, cholestramine, xylocaine jelly, zinc oxide creme, etc.

Veteran Member

Date Joined Oct 2009
Total Posts : 1054
   Posted 12/10/2009 7:14 AM (GMT -6)   
If I am in "remission" (I don't consider this remission, but my GI says I don't show symptoms, so I guess it must be...), I have about 2-4 episodes of diarrhea within the first 3 hours of waking (HATE having to get up so early to get going in the morning--makes it so hard to be normal cuz I have to go to bed so much earlier than everyone else), and sometimes have a hard time feeling "normal" for a few hours after that. I am usually ok for the rest of the day. Then I just have to watch what I eat (like no fresh fruits/veggies, not a lot of fiber, etc).

If I am in a flare, it usually includes blood/mucus/pain with my diarrhea. Instead of just going in the morning, I'll go a LOT in the morning (maybe 6-10 times) and if I'm not careful, I'll go other times during the day as well. I get to the point where I'm on an almost all-liquid diet. I lose a lot of weight quickly. Ugh.
28 Year old Female
Diagnosed with Crohn's Colitis March 2000
Recent possible diagnosis of IBS-D
Tried Meds: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Rowasa Enemas.
Currently on: 30mg Prednisone (Tapering from 60), 100mg Imuran, Align, Psyllium Seed Powder, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D/Calcium, Flomax (for urinary retention). 

Regular Member

Date Joined Nov 2009
Total Posts : 26
   Posted 12/10/2009 12:25 PM (GMT -6)   
Intersting answers to the question. I have been living with Crohn's since 1990. In 1990 I had a resection and basically have never had a formed BM since that time. Since the D was my only symptom I just thought that this is the way life was going to be. Within the last 5 years my Crohn's has been giving me much more grief. I have anywhere from 3 -8, sometimes more, loose bms a day, rectum pain and itching that drives me crazy. Pain in my lower left side which can be very sharp at times. I deal with a fair bit of loss of appetite and it still amazes me how many pounds can drop off in a day. Recently I have been having really bad joint pain. I have been having cscopes every 6 months during which he dialates 2 areas of narrowing from inflammation. At my last scope he found another area of narrowing which will be dialated at my next scope in January. We are in the process of going to be changing up my meds but my dr wants to do it after the next scope. Thankfully I do not have a lot of urgency issues. Extreme tiredness is another one that I find hard to deal with.
51 year old woman, married 30 years.  27 yr old son married to a wonderful woman.  7 year old grandson with new baby due the end of June!  24 yr old daughter living with her fantastic boyfriend.
Diagnosed with Crohn's in 1990 following resection surgery.  Put on no meds on discharge.
5 years ago put on salofalk.  Early 2009 taken off salofalk put on entocort 3 tab/day, mezavant 2 tabs/2 x's day, methotrexate inj once a week.  Folic, Vit D, calcium, vit c, multi vit, tylenol arthritis.
Will be taken off methotrexate after next dialation (scheduled for asap) and put on IV drugs, just not sure which one yet.

Veteran Member

Date Joined Jan 2007
Total Posts : 3200
   Posted 12/10/2009 4:25 PM (GMT -6)   
Right now everyday is lousy...

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis and lupus.
B12 Shots bi-weekly

Laughter is the brush that sweeps the cobwebs from our hearts...

Regular Member

Date Joined Feb 2005
Total Posts : 421
   Posted 12/10/2009 5:07 PM (GMT -6)   
2 continuous rectal draining fistula's since 2000, mornings are BAD, wake up 2-3 hours before I need to be somewhere to get in bathroom time, usually multiple stops along the way always making me late, no black pepper or spicy foods allowed, lots of pain in my tummy area all the time, afternoons and evenings are usually fine. That was my life before Nov.23. Had surgery to remove the entire rectum and a permanent colostomy, part of my colon was removed (fistulated and turning hard...scary) some small intestine removed. Now, 17 days later, a little pain from the drain sites (packing, ick.) but eating everything, no longer am worrying about where a washroom is and starting to feel like a functioning human again. Currently on Imuran.
RX Crohn's 1999, over 30 surgeries, 3 strokes, permanent colostomy and rectum removal.
"The most unfortunate thing that happens to a person who fears failure is that he limits himself by becoming afraid to try anything new."

Regular Member

Date Joined Oct 2009
Total Posts : 111
   Posted 12/10/2009 6:55 PM (GMT -6)   
I range from okayish to fairly sick to 'get me to the ER now'.
Okayish days I generally have to go to the bathroom immediately when I get up.  Repeat several times over the next 2 hours.  I almost always go a minimum of 5 times before noon every day.  Then things usually calm down until early evening, and then I'll have another round of multiple bathroom trips.  I almost always have some degree of urgency, especially in the mornings.  Usually some pain, mostly in the left side, but bearable.
Fairly sick - which is where I've been floating since mid-September - is everything above, but add more gas, a lot of mucus, some blood, constant nausea, and a lot of pain, almost always in the left side, although I do get some on the right.
Get me to the ER now is the horrible days where no matter what I do, I have constant pure water D.  Once I pass 30+ trips to the bathroom, I have to go in for dehydration.  Anything I drink goes out just as fast as I put it in and I'm usually pretty incoherent by the time we get to the hospital.  They drip a few bags of fluids into me, painkillers, etc.  I haven't been admitted yet, thankfully.
I don't like to take painkillers, but I will take Darvocet occasionally if it's unbearable.  I also have Diluadid, which does a great job if I'm in major pain.  I almost never take those though.
Also, Lomotil is the best thing ever invented.  Sometimes that's the only thing that lets me get out of the house.

chronic active colitis/possible Crohn's - unspecified IBD
Lialda 2x/day
Entocort 9mg 1x/day
Darvocet or Tramadol as needed

Regular Member

Date Joined Dec 2007
Total Posts : 414
   Posted 12/11/2009 8:14 AM (GMT -6)   
Interesting to see how many of us have that 2 hour period in the morning, If I have to leave at half 8 I get up at half 6 - 7 absolute latest to allow time to go and have codeine kick in! I'm always so envious of people who can just wake up roll out of bed and straight out the door. Over summer friends would always make plans to do something during the day and I'd always be like "OK well if its in the morning please give me a couple of hours notice!" My old job was brilliant though, they let me start half an hour later than everyone (and finish half an hour late though) as it was just always way too close if I'd make it in on time or not, I really really hope future employers will be as understanding!

Veteran Member

Date Joined Feb 2009
Total Posts : 529
   Posted 12/11/2009 6:12 PM (GMT -6)   
Right now I'd say I live a pretty normal life. I'm not in remission but I'm not flaring really either. I'm pretty much normal except I get a lot of pressure/pain in my LRQ and some burning pain around my belly button. My waves of pain are usually an hour or two apart now, which is a lot better than it was before (used to be like 5 mins apart...). When I'm really sick, I'll only be able to stay awake for like 4 hours a day, but now I can get by on 5-6 hours of sleep a night even though I'm severely anemic (2.6 ferritin, yay!). I also get nausea in the morning and at night. I throw up sometimes still, but nothing compared to what I was at, I used to throw up like 10-15 times a day minimum. My BMs are normal for the most part too, I went from about 20 times a day to once a day. I really feel my best in the afternoon, but I can still survive in the mornings, I just tend to complain. haha.

I did have about a 3 month period where I felt 100% normal though once! (I got sick just under 2 years ago). Other than that, I've never felt totally normal though, unfortunately. Hopefully I will soon.

Veteran Member

Date Joined Apr 2008
Total Posts : 1753
   Posted 12/11/2009 9:25 PM (GMT -6)   
Life is mostly normal right now. Like everyone else, I have to be up earlier because of how busy my system is when I first wake. Things are much better after morning has passed.

I generally don't eat much, I have to take a nap almost every day, and I sleep more at night than I used to.
I'm able to cook, clean, study, and play music. During school I have some trouble because of all of the work due, but I'm generally okay about getting it done in the end. I work better in the evening so this past semester I had been up until 4 a.m., going to class from 9-1, and then taking a nap until about 5 or 6 in the evening (repeat process ad nauseam).

It's break now so I'm able to get everyday things done as long as I have the bathroom open. When I know someone is taking a shower I do things that require sitting like reading or computer work until they're finished because I'll have that "have to go NOW" alert if I'm up and about in the morning.

When I'm kind of flaring, I have to take immodium every day, painkillers as needed, and at least 20 mg of prednisone. I don't eat anything really except for ensure and chicken with olive oil if I can manage solids.

And when I'm really flaring, I sleep approximately 20 hours a day, go to the bathroom 10+ times per hour while I'm awake, but it's generally just blood and sometimes debris mixed in. I can't get water down, but ensure seems to work fine. I have to go to the hospital for IV steroids and liquids, and the doctor will usually prescribe percocet or something along those lines. I have to be really careful with diet and exercise for a couple of months after that, and then I return to semi normal.

It's just kind of a cycle it seems. I was pretty strict on the SCD for a while, but I'm slipping because I can't afford a lot of the materials. Olive oil and chicken are about the extent of legal foods I'm able to obtain at the moment. I've also been off of humira for several months, but things seem to be going well so we'll see.
Diagnosed with Crohn's in May of 2008.
Currently taking: Prednisone, pentasa, omeprazole, and humira. Using probiotics and a multivitamin.
Learning how to live again.
"He who has a why to live for can bear with almost any how."

Regular Member

Date Joined Aug 2008
Total Posts : 351
   Posted 12/19/2009 12:44 AM (GMT -6)   
lilcrohnieUK said...
Interesting to see how many of us have that 2 hour period in the morning, If I have to leave at half 8 I get up at half 6 - 7 absolute latest to allow time to go and have codeine kick in! I'm always so envious of people who can just wake up roll out of bed and straight out the door. Over summer friends would always make plans to do something during the day and I'd always be like "OK well if its in the morning please give me a couple of hours notice!" My old job was brilliant though, they let me start half an hour later than everyone (and finish half an hour late though) as it was just always way too close if I'd make it in on time or not, I really really hope future employers will be as understanding!

That is so funny you have said this.  I thought I was the only one with this logic.  If I know I have to be somewhere at let's say 9 am I wake up at least 5:30 or 6:00 so I am SURE I will not have to go by 9 if I'm lucky.  It's so weird that the consensus is that everyone seems to have a lousy morning.  After I wake up I usually go within a half hour to 45 min after.  It's so weird and annoying.

Regular Member

Date Joined Nov 2009
Total Posts : 205
   Posted 12/20/2009 12:40 AM (GMT -6)   
On good days, I have energy.
On bad days, I sit around, find it hard to motivate myself to do anything.
On really bad days, I sit on the toilet a lot.

I'm floating between the first two at the moment.

(Oh, and the morning thing happens to me also. Usually right in the middle of breakfast I end up running to the toilet.)
CD since July 2007 - prenatal vitamins + extra vit. D, vit. C and iron, fish/flax oil, probiotics

Following excellent Omega-3 diet as per James Scala's 'The New Eating Right for the Bad Gut' - got me out of a flare.

Regular Member

Date Joined Oct 2005
Total Posts : 428
   Posted 12/20/2009 11:19 AM (GMT -6)   
Hmmm, this is a great thread. I'm kinda sitting at the same place as wednesday2007 way up there, that is when I'm feeling good, I forget I have this DD, but when it's bad I'm usually in the hospital. I was in over Thanksgiving and I'm not back to normal yet. The remicade is helping a lot, and I'm very careful about what I eat. Stools lately have been formed (which is never the case usually) and the urgency has subsided. My doctor has me on medical leave until after the new year. . . which is a double edged sword :) No mall over the holidays= good, but no moooo laa either lol
35 year old Female

Entocort EC 9mg per day and Remicade

Tried Remicade 2 yrs ago for about a year and a half and loved it, got off it due to costs, tried Humira and it just didn't work for me so now back on Remicade.

~Trying to avoid surgery as long as possible~

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