Night time BMs

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Maya142

Maya142

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In the last couple days M has been getting up at night to go to the bathroom. Sometimes she doesn't make it on time. She's supposed to be in remission, so I don't get why she has to go to the bathroom at night? Nothing has changed. Any thoughts? Is it possible that she's beginning to flare?
 
We were told by GI that nighttime BM's are a red flag as that function of the intestines is supposed "to go to sleep" at night. It is one of the first questions Jack's GI asks. He says if you are going at night something is wrong. In most non IBD people it is a virus or such.
I would make a call and just update the GI.
I hope it's just a minor bump and can be quickly brought under control.
 
I agree with Jmrogers. I was told by one of my "old school" docs that that is how they distinguish between IBS and IBD initially...if you awaken at night to use the bathroom. I hope it's nothing, but probably best to get things checked out.
 
Shoot:voodoo: will let the GI know.

She had Remicade just yesterday and her joint pain gets a lot worse when infusions are due, so maybe it's just that?

Thanks!
 
Oh no... red flag in our GI's book as well. He asks at every appt.

Could she have eaten something? Stomach virus?

I hope it's nothing :ghug:
 
Same here, GI always asks and right after dx, before meds, C did have this issue. It hasn't occurred since then.
 
GI ordered Fecal Calprotectin and a bunch of other stool tests.

M has been going to the bathroom a lot today (6-8 times) and had bad stomach cramps :(
Not sure what's going on...
 
Last edited:
No night BM's here but she's a constipated kiddo.

I hope it's a virus and she's back to normal soon.

HUGS
 
Still miserable .. up at night to go to the bathroom twice, and cramping and diarrhea in the morning.
Hoping for a virus but this is the third time this has happened in three weeks, so I really doubt it:confused2:
 
Probably a week or so. Her GI wants to see her next week, so I guess we'll go from there.
 
It becomes a vicious cycle when they wake up at night to go. D has been facing it for a long time & I think a big reason there are other effects for her. When you don't get sleep your body can't fight things off. We are happy for a full night sleep (6 hrs straight without waking up for the bathroom is a rare things for us) I hope all goes well at the doc Appt. next week
 
Still getting up at night (but not every night) to go the bathroom. Some days she's ok with only some joint pain and stomach pain, and some days she's absolutely miserable, goes to the bathroom 8-10 times, bad crampy stomach pain and joint pain that's through the roof. It's on and off though, which is confusing me.

Seeing her GI tomorrow! So far CDiff is negative and blood work looks fine (but it's always fine). Waiting for fecal calprotectin.
 
Oh I hope they find some answers for her soon! Maybe the FC will giver her some answers! Sending HUGS!
 
FC is 486 -- not terribly high but higher than this winter (67) last summer (36!). M's GI wants to add Imuran.

Any tips? M reacted quite badly to Methotrexate (been on it 3 separate times and each time she got very nauseous and dizzy for almost two full days after the shot) so she's quite nervous about Imuran.
 
I don't have any advice or tips on the Imuran as C hasn't been on it. I hope it doesn't cause the issues that the mtx did. I can understand her wariness. Hugs!
 
Jack had horrible reaction to Mtx but Imuran was fine. I would give it to her as bedtime dose for the first few weeks that way if she does get nausea she would sleep through it. Sounds like Jack's FC's before remicade. Not high enough to raise most GI's flags but when compared with previous baselines definitely needs to be considered.
 
Well sadly it validates what M has been suffering with.
I hope the new med works well with no side effects.
 
No side effects on Imuran (Azathioprine) here. DS did take it with a snack and before bed because I'd read about possible nausea. Unfortunately, it was basically a placebo for him and didn't stop his disease at all.

Be sure to get bloods checked regularly!
 
Brian'sMom - my sentiments exactly! Stupid Crohn's!

I'm so glad to hear that some of your kids didn't have side effects with Imuran. I'll definitely tell M.

She'll start Imuran tomorrow and we'll do it before bed after a snack! Thank you everyone for your help! I'm hoping this is all she needs to get back on track.
 
486 :ymad:

We took the 6MP at bedtime. I know it's not Imuran but it's close. :ylol2:

No nausea!

J.
 
Ditto to close to bedtime, with food and monitor bloods closely. :)

My two have not had any issues with Imuran and have been on it for quite some time.

Good luck!

Dusty. xxx
 
We're doing weekly blood work for a bit -- does that sound right?

So far so good, no nausea last night. Just curious, did any of your kids have hair loss with Imuran? M is worried about it.

We're starting at 25mg for a week or so, then 50mg and finally 75mg. Doesn't that seem like a high dose for her weight (88 lbs, roughly 40kg)?
 
Weekly blood - Yes in the beginning.
We did not experience hair loss. I have heard of it happening but doesn't seem common place, kwim and Jack's hair is pretty thin so it would have been noticeable.
Jack went up to 150mg and we were not at theraputic levels so we backed down to 50mg added allipurinol and still weren't at theraputic so we ended up at 75mg along with allipurinol and he was at best 77 pounds while on Imuran
 
A had significant hair loss with mtx but not 6mp. Her friends at school actually asked her if she had cancer. Now that she's off mtx her hair is growing back. She looks like a fuzzy little hatchling.
 
Maya my daughter had a bit of hair loss, but nothing noticeable. Tell her not to worry everyone is different.

M takes 125mg and she is 60kg.

Good luck l hope it works.:ghug:
 
Thanks, funnily enough M didn't have much hair loss on MTX but did lose a lot on Arava, which is a similar drug used for arthritis.

Personally, I think she has enough hair that no one would notice, but she's worried.
 
I didn’t notice hair loss with Sarah but Matt definitely. His hair really thinned out and changed colour, but that may have been an illusion due to the thinning??

I also felt that Matt’s case his very poor physical health, weight loss etc, may have been a contributing factor too. It was hard to tell as it all happened at once.

Dusty. xxx
 
DS did have some hair loss, but you couldn't tell from looking at him. I'm probably the only one who noticed since I do the housecleaning. It mostly showed up on the bathroom counter, his pillow, and the shower floor.

His labs were weekly for a month, then bi-weekly for a month, then monthly. After that it was supposed to go to every three months, but we never made it that far.

Hope it works for her!
 
So far so good -- no side effects! She's up to 50mg now, hoping it stays that way!
 
M's bloodwork from last week just came in -- her hemoglobin was 9.6 (range 12.1-15.1). It was 11.6 (that's normal for her) last month (we only just started doing weekly bloodwork now that she's on Imuran). Would Imuran affect her hemoglobin? She's only been on it 2 weeks or so.

Everything else, including WBC, was normal.
 
I think it more likely that the Crohn's is lowing the hemoglobin rather than the aza.

But yes aza can lower hemoglobin:confused2:

When is the next blood test due?
 
Today! Neither her GI or her rheumatologist called, so I'm assuming they're not worried about it.
 
Hemoglobin keeps falling -- now at 9.4. WBC is normal. Is this from Imuran? Rheumatologist says it's from inflammation and to talk to her GI. GI hasn't responded yet.

Any ideas? She does have a multivitamin with iron every day.
 
Do you have levels and ranges for ferritin, B12 and folate?

How is she feeling?

Because the drop is only 0.2 this could be normal variance in blood tests.

When the next blood test?

If the haemoglobin level is due to low iron the multivitamin would not contain enough iron to help.
 
She's completely exhausted and had almost fainted the other day in the hospital lobby (they had to call paramedics and her BP was very low. She was given fluids and got a little better).

The .2 I'm not so worred about, it's that she's gone from 11.6 (which is pretty normal for her) to 9.4 in about six weeks.

Ferritin is always very elevated last time (above upper limit, always is) but Total Iron was normal . B12 and folate haven't been done in more than 6 months, I'll ask for them to be added but she isn't having blood work again until the week after next.
 
Maya

I wouldn't be happy with 9.4 either. The fainting and low bp are mostly like symptoms of anemia.

If the ferritin level is always above the upper limit I would be careful even using a multi vitamin containing iron.

The ferritin level is most likely acting as a marker of inflammation.

I would be calling her GI as her quality of life sounds poor. I would also ask for blood work next week.
 
^^^^ yeah that
DS needed iron pills at more than 5 times what would be found in a multivitamin plus the extra he got from peptamen jr.
The iron pills take months to start working
 
GI wants her to see her hematologist, so that's next. We know she didn't tolerate iron supplements last time this happened, but I hope we don't have to go straight to infusions this time.
 
Sorry she had to see another specialist but hope the hematologist can give you an answer. :ghug:

Maybe a dumb question but why would you want to avoid the iron infusion? I've heard others make similar comments but don't understand why as an infusion would simply be the easier and quicker fix (especially as supplements do take a while to make a difference)??
 
Tess- I wouldn't if that's what she needs! I actually think it's easier than trying the supplements again but M is so sick of doing medical things (though she will of course, if she has to).

Patricia - She's on a high dose of Remicade (15mg/kg every 4 weeks) and we've just started Imuran. It's just going to take a while to work I guess. I've been trying to convince her to do EEN but so far it hasn't worked.
 
Totally understand! S has been so lucky in that he's needed so many fewer apptmts/tests compared to lots of others here - I realize he doesn't appreciate/know this but, even with his relatively few apptmts, tests and infusions, I hear the odd complaint... I can imagine his 'agreeability' would quickly diminish after a period of continued testing, apptmts and med changes.

So sorry things aren't yet stable for you and M! :ghug:
 
As she has high ferritin giving iron may not necessary work it could actually do more harm that good.

Although inflammation is the most likely cause for the high ferritin. There are other causes for high ferritin.

Hopefully the hematologist can work out what is causing the high ferritin and you can move forward with a treatment plan.
 
That's true, last time she had very low ferritin and then was given iron infusions.
Every doctor we have seen so far has said it is inflammation (been high for almost two years now, but her arthritis has been flaring for about that time), I really hope that's all it is.

Tess -- M is keeping track of all the appointments she has to go this summer LOL. You can show the list to your son when she's done ;) She's had 11 already.
 
DS only has 19 planned until the beginning of school .
I forgot to count testing as appts or allergy shots so I guess the number is higher .

Hope M gets some help soon
 

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