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Crohn's Disease
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Posted 12/27/2016 3:51 PM (GMT 0)
I had an MRE with contrast last week (Wed) to try to see what's going on in my small intestines since I am still getting these blasted fevers. No results yet, of course, since Fri and Mon were holidays. But then last night at midnight, I woke up with excruciating abdominal pain and vomited forcefully for 2 1/2 hours (also with D, which was weird because I'd been struggling with C the last two months). It didn't feel like Crohn's, but almost more like food poisoning. My husband talked me into going to the ER (we tried a new hospital this time), and my WBC is 20!! They admitted me and we'll go from here. The neutrophils were elevated, so it's bacterial, whatever it is. I'm wondering if I had an abscess that finally burst or something. But I'm relieved to finally get some treatment. Even with zofran, phenergan, benadryl, and dilaudid, I am still in pain and throwing up a bit. It's not food poisoning because with all my siblings in town we've eaten together at my parents' for every single meal and no one else has gotten sick.

It's just kind of pathetic that I'm excited about this. The life of a Crohnnie. shakehead
Posted 12/27/2016 10:17 PM (GMT 0)
Glad to hear that you're getting looked after, and hope they get to the bottom of things soon. Terrible to be in hospital at this time of the year, but I'm sure once you start getting treated and feeling better, you probably won't mind so much. Keep us posted.
Posted 12/27/2016 10:29 PM (GMT 0)
It almost sounds like an obstruction but I don't know if that much vomiting is normal for an obstruction. Anyway, I'm sure the bloodwork means that it is bacterial, like you said.

Sorry that you're in hospital yet again, but hope you finally get an answer this time!
Posted 12/28/2016 12:39 AM (GMT 0)
You have been sick for way too long with these fevers. I hope they sort it all out quickly and get you some answers. I'll be thinking of you.....sending big hugs your way!!!!
Posted 12/28/2016 1:14 PM (GMT 0)
I am sorry you have to be in the hospital, and hopeful you will get some answers.

It does sound like a narrowing or stricture. I vomited for over 4 hours when I had mine...(3 hrs 45 min. In the ER) then they placed me on zophran every 4 hours. Watch the zophran though....someone said it slows down your mobility.

Please keep us updated. I hope you get the answers you need and feel better soon.

Clo
Posted 12/28/2016 9:23 PM (GMT 0)
This hospital is definitely much kinder than the other one I was going to. However, my body just does not want to cooperate. The MRE last week showed nothing. So then our plan with the ID dr was to draw blood, take out the white blood cells, put a barium-type tracker on them, then put them back into my body. Then 24 hours later take pictures of where they went, and that's most likely where the infection is. HOWEVER this morning my WBC decided to go back down to NINE!!!!! I feel so frustrated. Luckily the doctors believe me, etc. but they just can't do this kind of test with the low WBC. So for now, just wait until I can eat without throwing up, escalate the diet to soft solids, then go home. Why oh why can't my body just do what it's supposed to (or not supposed to, I guess) when someone is watching?!
Posted 12/29/2016 1:51 AM (GMT 0)
yikes! That's horrible! I have had several instances of that several years ago and know how frustrating it is. I am so sorry, they really have to come up with something to get to the bottom of it. Have you seen a rheumatologist? Maybe some other immune system issue? Idk
Posted 12/29/2016 4:50 AM (GMT 0)
Aaaaaggghh!!!! Sorry, had to release some frustration. My body does stuff like that to me all the time. Drives me crazy.

Maybe the WBC will go back up while you are still there. I hope your body cooperates and you are able to get some answers.

Last time I was in the hospital my GI and colorectal surgeon became so frustrated they laid in wait for one test while sitting in my room for the test results, I had been moved onto one of those temp beds you move people around on, and when they got the test results they each grabbed a side if the bed and started running down the hallway with me waving people out of the way with one arm and steering with the other. We looked like the three stooges! All to get me to the second test before anything changed. We all three still laugh about it. Hope it brought a smile to your face too.

Hang in there!!
Clo
Posted 12/29/2016 5:05 PM (GMT 0)
And wbc is back up to 14 again. I was throwing up last night with D (lots of urgency but I can't get anything out) after moving up to a full liquid diet. Last week's MRI came back normal, my GI said. Maybe having the WBC elevated today will mean we can do the test after all.

@labrodite - I do have a rheumy, but haven't seen her about this quite yet. Wanted to get scope, etc. all out of the way first. So we'll see what they have to say, first. They*think* the D/vomiting are NOT related to CD and just because I'm immunocompromised, But my legs have big bruises on them this morning that were not there last night,,,,,
Posted 12/29/2016 8:25 PM (GMT 0)
Oh man, something is definitely going wrong....I feel so bad for you! I hope they figure it out soon. Are your parents able to help with the kids? I'm glad you are at least in the hospital so you can be monitored. Do you have IV's for hydration at least? If you have netflix, maybe you can watch some good movies while you are stuck in there. Moonrise Kingdom is on netflix and it's great if you haven't seen it. Take good care.
Posted 12/30/2016 4:16 AM (GMT 0)
Yes, my parents have been able to help with the kids a little bit, so that has been a relief. My husband has been working just half-days, though. The kids are a bit traumatized with not having mommy at home. My 3yo daughter cried and cried when they visited this afternoon and I wasn't going home with them.

Thanks for the ideas on what to do! I've also been working on my website. It has been a lifesaver fro me. The signal is kind of crummy, so watching things is just more frustrating than relaxing! ;) But my website has plenty enough to keep me occupied. I'll having to look into Moonrise Kingdom - thanks gumby!
Posted 12/30/2016 5:40 AM (GMT 0)
scifi. I feel your pain as they say. if you can, maybe go back and check my posts from afew years ago under 'fevers' I used to get very high fevers (102-105) just about every 4 -6 weeks like clockwork. I had every test they could do and never really found the cause. then in 2012 when I had the fungemia and they put me on several anti fungals intravenously along with antibiotics I have had relief mostly for the better part of 4 years until this past November. I had a 103.8 on 21nov. and a 103 in early dec. so we did some more blood cultures and low and behold there is bacteria in my bloodstream. so started on IV vancomyacin a week ago. luckily I have all the IV plumbing already installed ! ;oP

so if they have not done so yet, maybe ask for a blood culture set to be done. when they used to do them on me before they never grew anything. the standard grow time is only about 3 days. but the fungus I had in my blood 4 years ago took almost 2 weeks to grow. but the ID dr must specify the longer time or it will get tossed early. this time the bacteria (staph. warneri) grew in 1 day.

good luck and good health.. randy
Posted 12/30/2016 2:10 PM (GMT 0)
Scifigal2k,

I am so sorry you and your family are going thru this. Is anything showing up in your blood cultures? Are you on an IV and are they giving you anything for the nausea? Antibiotics?
Posted 12/30/2016 3:02 PM (GMT 0)
Just wanted to send you my best wishes. You've been such a help to me over the last few months. I thank you for that.
Posted 12/30/2016 10:20 PM (GMT 0)
Sci-fi, sorry you are having such a hard time.Hopefully you can get that test so they can pinpoint the problem. I am keeping you in my prayers!
Any chance this could be from the Remicade?

I wish I had more to offer .
Hugs!

Post Edited (pmedic) : 12/30/2016 3:24:00 PM (GMT-7)

Posted 12/31/2016 7:36 PM (GMT 0)
Oh no! What a holiday celebration! I don't have any insights but am sending LOTS OF GOOD wishes and STRONG hugs your way. You have been such an inspiration to me (and so many others). I am glad you are in competent hands and that there are answers SOON! This disease seems so elusive. Let us know how it is going!! Stay strong smile!
Posted 1/5/2017 12:06 PM (GMT 0)
Scifigal2k,

How are you?

Clo
Posted 1/7/2017 3:13 AM (GMT 0)
Hey everyone, sorry I went MIA. I was released Saturday night and then spent a few days with dilaudid withdrawals and helping my kids adjust - they really struggled with mommy being gone for a week. Apparently there was a very nasty stomach virus that went around, and even people who are regularly healthy were being hospitalized with it. I feel a LOT better now. I saw my infectious disease doctor, and she said that she thinks the fevers are related to the antidepressant for post-partum depression that I started. She is really awesome and says she doesn't want to just chalk it up to that, so she's running a few more tests and going to see if insurance will approve a PET scan (cancer screening) because of the weird bruising on my legs. But apparently she had a patient a few years ago who was on the same antidepressant as me and developed fevers like mine but not until about 3 months after starting it (like me), so it took forever to realize that's what it was. She doesn't want me to stop it until I talk to my PCP and we can see about switching to another one. But I missed it a couple of days and really struggled emotionally, so I'd rather deal with fevers than PPD.
Posted 1/7/2017 3:58 AM (GMT 0)
Scifigal2k,

I was so very happy to see your post! You sound like you are feeling better. I was concerned and ready to put out a mia on you.

Your little ones will need lots of love, attention and reassurances from Mom. Remember to take care of your needs too. (My daughter is 30 and she still needs that reassurance when I get out of the hospital! Lol)

Wow on the meds causing a fever. Why that suprises me I am unsure. Its important for others to know this so they watch out for it. You sound like your doctor and you have a gameplan.

Please check in so we know how you are doing.

Clo
Posted 1/7/2017 5:21 AM (GMT 0)
SO thrilled to hear that you seem like you have a doctor you can work with and will get to the bottom of all of this and glad you are back home with your family!
Posted 1/7/2017 12:41 PM (GMT 0)
scifigal - Glad to hear you are better now. This must (through no fault of your own) be tough on your children as well; they are way too young to understand yet why you have to leave them.

Do you mind if I ask what antidepressant you are taking, as I never heard of antidepressants causing fever as a side-effect before. I'm on duloxetine, which is the generic version of Cymbalta. I missed a dose on the day of my pill cam test and by the evening felt like I was going crazy - not sure how much of that was caused by the gruelling effects of the prep though :-/
Posted 1/7/2017 2:15 PM (GMT 0)
Scifi...glad you checked in with us and are doing better. I was worrying about you! The stomach bugs are going around bad where I live. My son and husband had it along with my son's girlfriend's whole family, but somehow miraculously I dodged that bullet! I've also never heard of antidepressants causing fevers, but I think any med can do things to individuals. I hope you continue to feel better!
Posted 1/7/2017 5:18 PM (GMT 0)
Thanks guys, you're so great, all of you. They're just so little, they don't get it. Lizzy gets it a bit better since she's 3yo, but it brought her night terrors back, which we hadn't had since I had Jared 9 months ago and was gone for 4 days with the c-section.

NCOT, I'm on Effexor. Not a high dose, just 37.5 mg. It's made a world of difference. And now that I'm done pumping, I was going to suggest going up to 75 mg. We started slow since with Lizzy they gave me Prozac (when the PCP insisted Crohn's was all in my head and really ppd, the moron) and it made me hallucinate (because I did NOT need it at the time. I was septic, had c. diff., mastitis, and influenza in a two month period. Of COURSE I felt rotten!). Anyway, I was a bit skeptical about it causing the fevers, and the ID doctor was really good about my skepticism. The fact that she said she still wanted to do more tests, and that she said she would not have considered it at all other than the fact that a patient had it happen a few years ago and it took months and months to figure out made me feel a bit better. And that she doesn't want me to stop it to test until I talk to my prescribing doctor first. But since every single other test has come back negative - multiple blood cultures, stool samples, every dang blood test out there, the scopes, and the MRE and CTs make me really hope that's all it is.
Posted 1/7/2017 9:43 PM (GMT 0)
Scifigal, glad that you returned home and that they could figure out the source of your fever. Four months ago after I had one of my infusions, I noticed bruises on my shins. I informed my GI, who ordered a panel of all clotting and bleeding tests you can think of. These were to be performed a week after the following infusion and to see him once results were out. To our surprise, results were all normal. I had like three infusions afterwards and nothing happened and my GI didn't know what had happened and caused that bruising.

Did they perform these tests while you were in hospital?
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