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Does this sound like a flare?

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Ulcerative Colitis
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Posted 12/29/2019 4:18 AM (GMT -7)
Hi everyone,
I hope you all had a happy christmas. Just need some advice as still fairly new to all this... So I've been essentially in remission for quite a few months now (still some symptoms but no blood and formed stools once a day). However two days ago I woke up with randomly bad cramps that I had on and off all day. I've actually been struggling to go to the loo and have a bad fissure which isn't helping. Anyway I eventually managed to go despite it being very hard and a lot of pain. I thought this would help. But I then got the worst cramps and pain I've ever had so my husband took me to the hospital. I had blood tests etc which all came back normal and doctor examined me and I had relatively little pain when he pushed on my stomach. So they sent me home saying it's constipation.

I definitely still feel constipated but what's bothering me is I'm waking up with bad cramps like I used to get so I'm finding it hard not to panic that I'm flaring.

Has anyone else had a similar experience or got any advice?
Posted 12/29/2019 7:38 AM (GMT -7)
What I hear people say in this group is that this may or may not be a flare. When we have IBD we are so anxious that any symptom could be a flare (rightly so... we’ve had some horrible experiences) and we forget that normal people also get stomach aches and whatnot often.

I have pain on and off. My symptoms have been pretty mild lately but the pain reminds me that there is still inflammation in my intestines (confirmed by my colonoscopy). I think for me, the best advice I could get is to stay in touch with my GI, be mentally prepared for stronger medical intervention, and carefully monitor what I’m eating to avoid painful episodes. I have a standing order for blood tests and stool samples every three months for the next year. It helps a little that I will be receiving information all year. I hope this helps.
Posted 12/29/2019 8:32 AM (GMT -7)
Ribbon23,
We can all experience pain like this at some point with or without flaring. The advice I have is...try not to panic and self diagnose too much. I tend to do this and ultimately stress out over what "might" be happening.

That being said, I suffer with constipation mostly. With that is rectal pain, pain in the entire Gastro track where i could feel the stool crawling through (pardon the graghics), bloody mucus, and exhaustion. At that point, i eat cooked fruit and vegetables, very little fatty foods, and lactose free yogurt for a few weeks.

In fact I have just gone through this over the holidays and started eating some raw Vegas again
Posted 12/29/2019 8:37 AM (GMT -7)
Ribbon23,
We can all experience pain like this at some point with or without flaring. The advice I have is...try not to panic and self diagnose too much. I tend to do this and ultimately stress out over what "might" be happening.

That being said, I suffer with constipation mostly. With that is rectal pain, pain in the entire Gastro track where i could feel the stool crawling through (pardon the graghics), bloody mucus, and exhaustion. At that point, i eat cooked fruit and vegetables, very little fatty foods, and lactose free yogurt for a few weeks.
In fact I have just gone through this over the holidays and started eating some raw Vegetables.

Take care and best wishes for the new year
Posted 12/29/2019 8:47 AM (GMT -7)
Constipation like what you are describing can cause the symptoms you have listed. Consider getting on a stool softner & drinks lots of water. The colon needs a lot of water to keep things moving through.

Take care.
Posted 12/29/2019 3:57 PM (GMT -7)
I would call your GI and ask for a calprotectin stool test. That will tell you if there is inflammation. You could also try Miralax for the constipation (that's what my GI suggested when I was very constipated recently due to taking anti-nausea meds). Has anything changed in your diet/lifestyle to cause the constipation other than a potential UC flare? That is a question I would be asking myself to try to figure things out. If you're waking up at night from pain, that usually means I'm flaring. I can't remember that ever happening to me while not in a flare. Severe pain is my worst UC symptom. If it's bad enough you had to go to the hospital, don't be afraid to ask your doctor for something for the pain. Also, my bloodwork has oftentimes been normal and it barely ever hurts when they push on my belly, lol. I always wondered why they did that because even when I'm super super SUPER ill, it doesn't hurt when they push on it.
Posted 12/29/2019 4:23 PM (GMT -7)
Probably not a flare. The hallmarks of a flare would be blood and non-formed stool.
Posted 12/29/2019 7:51 PM (GMT -7)
Some of us sometimes have constipation as the first sign of a flare.
Posted 12/30/2019 3:31 AM (GMT -7)
Thanks everyone for your replies. I was so hoping this was just a constipation issue but sadly I think it's a flare. Last night I had a loose-ish bm and I thought there was blood in the toilet (couldn't see properly as had put bleach down toilet so it foamed up...). Every morning I'm waking up again with cramping and I noticed that gas smells bad again like that awful pungent rotten eggs type smell...
I don't really know what to do. My hospital team here in the UK are pretty useless so I don't have anywhere to turn. I added in a budenofalk enema last night as that's all I have extra in the house right now. Any suggestions?
Can a flare really just start overnight? How can you be in remission and then suddenly get inflammation?
Posted 12/30/2019 7:06 AM (GMT -7)
Yep, symptoms can appear out of nowhere overnight.

"How can you be in remission and then suddenly get inflammation?" That's the nature of this disease, unfortunately. Periods of remissions and periods of flare-ups and we don't know the cause.
Posted 12/30/2019 7:42 AM (GMT -7)
you really need to get on some daily (or twice daily) butt meds - soon ! make a fuss if you have to cuz you've been struggling for a while it seems -

good luck smile

btw, what is your diet like ?
Posted 12/30/2019 7:49 AM (GMT -7)
I just started the budenofalk enemas, I don't tolerate mesalazine enemas. I just spoke to my consultant who said I've developed low levels of antibodies to humira after only 7months sad I literally have no luck. He didn't offer any suggestions just said he'd call me back in a few weeks.... Helpful
Posted 12/30/2019 11:37 AM (GMT -7)
Sorry to hear that. I was hoping Humira would work for me but it doesn't seem to be doing anything. Your doctor didn't give you any advice at all? That's terrible. I'm in the U.S. so I am not real familiar with the healthcare system over there. Is there anyway you can request to talk to someone else or get a new doctor?
Posted 12/31/2019 3:37 AM (GMT -7)
Did you have a test to check the Humira levels? If not, how does the doc know it's antibodies and not just low levels? If it's low levels you could go to weekly shots and since you had good response before that would likely be exactly what you need. I don't get why the doc said he will get back to you in a few weeks. What are you supposed to do until then? And what if he forgets to get back to you? Are you just supposed to suffer until the doc decides to get around to treating you?

Sorry for so many questions. I hope the rectal meds can help until you can get further treatment.
Posted 12/31/2019 4:18 AM (GMT -7)
Thanks for your reply. Yes test checked both levels and antibodies. He said levels were good but low levels of antibodies showing... He just said he didn't know what to do and has to speak to his colleagues so I am left not knowing what to do. He didn't even say whether to continue humira or not so I assume I do. I've added in budenofalk enemas myself and increased my mesalazine to maximum daily dose but besides that don't know what else to do.

I can get referred to a different hospital but that will take weeks. I just feel in limbo not knowing what is going on sad
Posted 12/31/2019 6:09 AM (GMT -7)
Ribbon, I would not stop the Humira until a different plan is put in place. If you stop it, there is potential for things to get worse. Keep doing what you are doing until this dr comes up with a different plan.

Take care.
Posted 12/31/2019 8:21 AM (GMT -7)
Thanks for the advice. I will do it as normal on Friday. Just worried no point if I have antibodies?
Posted 12/31/2019 9:12 AM (GMT -7)
Low levels of antibodies can be countered with more medication (either higher dosages and/or more frequent injections/infusions). Having antibodies makes you/I more prone to getting side effects: joint aches, rashes,headaches, flu like body temp, etc. If you start experiencing those, then switching makes sense (could be to remicade/simponi which are different enough that antibodies you have are irrelevant).
Posted 12/31/2019 9:27 AM (GMT -7)
Thanks John, I’m really not sure why my GI isn’t just upping the dose or making me try it weekly - surely it’s worth a shot? Instead I’m just stuck waiting for him to get back to me...
I don’t think I’m getting any really adverse reaction because of the antibodies - my skin is a bit itchy but I am prone to skin issues anyway. Thanks for your help and positive to know I won’t necessarily get antibodies to the other biologics. How are you doing these days?
Posted 12/31/2019 9:52 AM (GMT -7)
In a remission, so all smiles for the moment.

Good to hear that you're not experiencing any side effects. I'd inquire about weekly humira as that would be the best recommendation for where you are at.
Posted 12/31/2019 10:34 AM (GMT -7)
Glad to hear you're well. Is that on remicade? Thanks I will try to do that.
Posted 12/31/2019 10:51 AM (GMT -7)
Yup, remicade, 6MP and rowasa currently.
Posted 12/31/2019 11:04 AM (GMT -7)
Brilliant. Glad you're well smile
Posted 1/8/2020 10:16 AM (GMT -7)
So I found out yesterday that my consultant has taken me off humira without telling me! I spoke to him last week where he indicated I had developed low levels of antibodies and said he wasn’t sure what would happen yet but would call me back. He hasn’t called me back and yesterday my humira delivery didn’t arrive. I phoned the company up and got told my account was terminated the day after i spoke to my consultant. I’m kind of appalled that he’s done this and not informed me and without telling me what my next treatment will be... presumably none. I’ve tried to contact him but have got nowhere sad has anyone else ever been treated like this?
Posted 1/8/2020 10:44 AM (GMT -7)
Wow, that's pretty crappy. Did you call and mention this to him?
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