So is this what flaring feels like?

[AgB621]

I was diagnosed fairly recently, and the diagnosis isn't even really "official" yet, so I wanted to share what's been going on the past few days to get people's opinions.

It started last Tuesday with some mild symptoms: rumbling, gas, which I attributed to some whip cream I'd had with dessert (I have whip cream so rarely I kinda forgot that I'm mildly lactose intolerant). That continued for a couple of days, and I developed some nausea and a sort of feeling of "unrest" in my stomach...a kind of liquid sensation I often get that's sort of like nausea, where I feel like if I were to jump up and down, I would get sick.

On Friday, I had some diarrhea, which I attributed to the fact that with dinner, I'd had both strawberries and dried apricots which were acting like a laxative. My stomach continued to bother me Saturday, I think I had some loose stools and nausea. Then, Sunday morning I woke up at 4am intensely nauseated, shaking uncontrollably, with diarrhea, cramps, and chills. It only lasted about half an hour (the worst of it anyway) so I assumed it was mostly an anxiety attack. I finally fell back asleep and woke up feeling like I'd been pummeled in the stomach (which I guess I sorta had). More loose stools, diarrhea, cramps and nausea Sunday, and then today everything got really bad. I called my GI doc first thing in the morning to let him know what had been going on over the weekend, and he suggested I take Pepto Bismol 4x a day for 3 days and check back in with him. At the time, I only had some mild pain, so taking his advice of a bland diet, I went to the store and bought some oatmeal. Halfway through eating, I started to feel nauseous. Sometimes that happens and what I usually do to feel better is, strangely enough, continue eating to get something starchy and soothing in my stomach. The diarrhea started again soon after I finished eating, it was fairly mild comparatively speaking, but the nausea and stomach cramps were awful. I called my GI doc again and, when he didn't call back after a couple of hours, I called my primary care who said I could come in immediately. When I got there, the stomach cramps became overwhelming...I was gasping and crying, and when the doc pressed on my stomach I gave such a yelp he decided I should get an ER eval. My white count was a little elevated (13.7 or so) and all my other bloodwork was normal so they decided they wouldn't do a CAT and just sent me home after giving me some fluids and Phenergan (the nausea was some of the most intense I'd ever experienced). The Phenergan helps so much but I'm gonna feel it for 2 weeks At the time it felt really worth it, but it feels awful now to keep taking naps and not feel any less tired. My stomach still hurts and I'm afraid to put anything in it. The GI doc said to keep on with the Pepto and go on a liquid diet and we'll touch base in a couple of days.

I start school on Thursday. I know I'm stressed about that, could that have caused all of this? If this is a flare-up, I'm terrified about what this year is going to be like. I have to take the GREs (graduate school entrance exam), write my senior thesis, defend it against 5 professors in a public forum...If just the thought of going back to school made me this sick, what will it be like when I have to take a 4-hour exam whose results could keep me from getting into graduate school, or to discuss a paper with dozens of people watching for an hour when I already have terrible stage fright? Maybe my GI will prescribe some medication, right now all I am taking is Nexium and it's not really helping...

So is this a flare?? Sorry this thread is so long-winded!

 

[Sojourn]

I was never able to distinguish between a flare or just getting progressively worse. I think it varies for each person. But I can relate to what you are going through as far as all the symptoms and going to the ER and being sent home with no real solution. I've had a couple of ER trips like that.

About the food you mentioned. Generally, for me, nuts and raw fruits and vegetables are a no-no. And oatmeal has a lot of fiber which also doesn't sit well with me. Apple sauce might be a good breakfast choice with graham crackers. And rice and mashed potatoes are good for lunch and dinner with maybe some turkey or chicken, steamed vegetables (fully cooked). And not too much of any of the above. Small servings are key.

For getting through your exams, I would recommend Immodium but ask your GI if that's okay. Also don't eat much if anything before the exam.

Unfortunately, this is a similar story I've heard many times here. Doctors won't do much until things get really bad. Of course we think they're pretty bad already. But I'm surprised you're not on any medication.

 

[AgB621]

I took Asacol for several weeks after my initial infection, but after a clear colonoscopy, my doctor said I could stop taking it. When we spoke yesterday though, he said we may need to just "bite the bullet and get me on some long-term medication". I don't know why it's such a big deal, I've been taking meds every day (for different reasons) since I was 9, I'm fairly used to it.

Are the food restrictions you mentioned more during flaring or all the time? I love fresh fruit, giving it up would be awful

I should be seeing my doctor tomorrow or Thursday, I'll post in here what he says.

 

[Aenea01]

Chrons leaves you feeling ill quite often. Its not uncommon to have 'some days are better than others' for quite a long time.

My docs always are specific about flares though. They consider a flare to be when your actual immune system is actively working against you (causing one or several noticieable symptoms). Anything less than that is just the sucki-ness of living with Crohns.

 

[AgB621]

So, since my white cell count was not overly elevated, this is likely just the suckiness of living with Crohn's?

 

[teeny5]

So, since my white cell count was not overly elevated, this is likely just the suckiness of living with Crohn's?

My white cell count is never very elevated but my ESR or sedimation rate is always really high. Was 80 last month and 58 today so I guess I still have inflammation. My GI said it is normal to have some good and some bad days. I had thought the Asacol wasn't working, but he said he thought it was and it won't get rid of all the symptoms just hopefully make the good days more frequent...currently I have about a week or two of good then a week of bad and then it starts all over.

Hope you feel better soon. Sounds like for the most part you have better days so maybe you are just having a flare...it will pass.

 

[AgB621]

I saw my doctor and he put me back on the Asacol. He also wants me to see a different doctor who is a specialist with Crohn's. He's still not absolutely certain what the problem is, if it's Crohn's or some variant or what. I brought up the fact that in addition to the GI symptoms, I also have a chronically elevated white count, chronic fatigue, bladder inflammation, and joint pain with the question of whether they were all related, and he said that Crohn's could cause all of that so it's just more evidence pointing him in that direction. As for this episode, he said it could be a flare or a mild infection that was made much worse by the Crohn's.

Anyway, I'm allowed to have solid food again, as long as it's bland, which is nice but I'm still getting nauseous. And the Phenergan......man that stuff is powerful, and it feels like it makes me more fatigued every time. Classes start tomorrow, I'm really hoping the fatigue will be a little better by then, I'm so tired I can barely see straight. It will be a solid two weeks before it works its way out of my system entirely though.

 

[Isla]

Phenergan can also be prescribed as a sedative. That is why I am going to my docs tomorrow. I am going to try to figure out my nausea and to get off phen. I can't function the stuff at all.

 

[AgB621]

I know what you mean Isla, it doesn't even make a good sedative really, it makes you tired for far too long. It's actually kinda worked out for me though, it's made me so tired that I fall asleep really early and then I wake up earlier, which I needed to do for school anyway. Same thing happened when I got mono. Let me know what your doc says about the nausea, that's been my main complaint too. I took Phen. a lot when I got sick the first time but I'm willing to suffer through a lot of nausea before I'll take it again. It takes 2 hours to kick in anyway...

 

[Isla]

It only takes about 45 mins - hour for it to kick in for me. Mainly because I wouldn't have eaten for most of a day before I will take it. The main problem I have with it is I am a single mom who owns and operates a business. I don't have time to sleep my days away. I put my daughter on the bus at 8:30am and then slept til 1:30pm, after a full night's sleep. Ya, I didn't get any work done.

This is not working out for me very well

 

[AgB621]

I don't know too many people who can afford to take a medication that makes them as tired as Phenergan does! How long does it take to get out of your system? The worst of it feels gone, thank goodness, but I won't feel back to normal (by which I mean, my normal level of fatigue) for another 10 days or so.

I start class tonight at 8, and I feel pretty lousy. I've had diarrhea several times, I've been nauseated, even just chicken and rice made me feel sick...and I was even hungry when I ate it. Doesn't bode well for a good class this evening, not sure what to do about it though...Maybe more Pepto, my doctor told me to take it for 3 days, but if my stomach's feeling bad, an extra couple of doses couldn't hurt, right?

 

[Isla]

Pepto shouldn't be taken long term but a few extra days shouldn't hurt you. My doctor said that we need to find a cause since my Crohns symptoms have greatly reduced, i.e. my medication is working but my nausea hasn't gone away. I will first get an upper endoscopy, if negative I will go get a brain scan, and thirdly other specialties like ENT's.

He wants to make sure I don't have inflammation in my stomach, ulcers, or an acid reflux type disease. Then he said the brain heavily regulates nausea so we should check my brain as well. He put me on Zofran twice a day (i.e. 60 pills / month) but my medicaid only pays for 15 pills a month? The stuff apparently is super expensive and is used primarily for severe nausea from chemo or surgery. So I am trying to get approval for more a month.

Doubt my experience helps you, but thought I would let you know what he said.

 

[AgB621]

Well, the brain angle is one I hadn't thought about. What kind of scan would they do? What exactly are they looking for?

I had an upper endoscopy fairly recently, and it was clear, which honestly surprised me considering the nausea I have so frequently.

Does it make sense to say that I have different kinds of nausea? Like, sometimes I feel it in my stomach, right below my ribcage, and other times I feel it more in my throat, behind my tonsils, in that indentation directly above the sternum. Zantac sometimes helps when it's there, which makes me suspicious of reflux, but my boyfriend has very bad reflux and none of my other symptoms seem like reflux, and the Nexium doesn't seem to do very much for either type...The stomach nausea I feel very regularly, the throat I only feel when things are kind of bad. I guess these are all things to bring up with the specialist I'm going to see in October.

I made it through class okay, but I'm typing this in the bathroom...the diarrhea just won't stop, I've taken 8 Pepto a day for 4 days now. It stopped the second two, but came back today so I started taking it again, so I don't think the Pepto caused it to come back but it certainly hasn't stopped it.

 

[Isla]

I would assume they would do an MRI of the brain. I kind of don't like this idea mainly because my sister had a brain tumor discovered and removed this past year. The last thing I need to hear that there might be something wrong with my brain The chance though is like a million to one - so the chance it is a lesion or brain tumor is way low.

My nausea seems to be about the same as yours. It's not a sour stomach per se, it is more like a focal point of nausea. Then when it gets bad I feel it in my throat and sometimes I cannot prevent it from coming up into my mouth - but no actual vomiting (YAY!.) I have had heartburn before, really bad heartburn - when I was pregnant. This doesn't feel anything like that. It wouldn't make sense for acid reflux to make you feel THAT nauseated. I could still eat and function, but now it is so hard to wake up in the morning and feeling utterly sick.

October seems like a really long time away from now. I hope you can get some kind of relief before then!

 

[AgB621]

Me too. I just had a supremely awful night. I'm missing my first full day of classes but what am I supposed to do? When I got home from class last night, the diarrhea started again, and it didn't slow down enough to let me sleep until 4 Immodium and 4:30 am. I've gotten maybe 3 hours of sleep. I feel utterly depleted, like there's just no nutrients in my body whatsoever. I feel dehydrated, too. I put a call into my GI doc but still waiting to hear back. I'm hoping he'll let me come in and get a bag or two of fluid. And my stomach still refuses to settle, it's gurgling constantly. I've only had diarrhea once this morning so far, but I feel like I still need to and maybe just can't because of the Immodium...I don't know if that can happen or not.

I emailed the assistant dean of my college at a 3:45 this morning and told her what was going on, and she wrote back a very supportive email so I'm hoping my professors will be supportive as well. This is a school that values attendance very highly, and I value it too, but I couldn't possibly make it to class under these circumstances. I keep trying to go back to sleep but my stomach's gurgling is really distracting. I just wish I knew what was going on.

Isla, I hope the news from your MRI is good! I'll keep my fingers crossed for you, and if my own nausea continues and we find no other source, I'm glad you have pointed me towards one other direction I could look in, thank you!