Help and Advise requested please.

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Joie1
Regular Member


Date Joined Oct 2008
Total Posts : 376
   Posted 5/27/2010 4:28 AM (GMT -7)   
Okay. So I've had three hospitalizations in the past few months (March 29-April 2, April 23-April 26, and May 13-May 17). They keep me almost from the moment the labs come in due to my potassium levels. I keep going in for pain (center of chest directly below ribs and continuing in a straight line along my bottom left rib) and vomiting I can't stop after a day at least has passed. The doctors at the hospital have already told me it would be best if I went to KUMed next time since they have a Crohns specialist there and can run more tests if this round of prednisone doesn't work. This last visit, I made sure I could eat before I left which I didn't do when I left April 26. What's kind of funny is that the doctors keep asking me if I'm SURE I have Crohns (this is the same hospital that diagnosed me LOL). I've had a two CT's with and without contrast, an upper GI, a colonoscopy (where they had to put me down like an elephant 'cause they said I kept trying to get up and walk away), X-rays of my entire chest and abdomen as well as my left knee, and finally a gastric study which they said was sort of strange since its usually used to diagnose a diseased gallbladder and I no longer have one.
 
Okay, so that's the background. Here's the medications that I'm currently on:
Carafate 1GM/10 ML Suspension-Take 10 ML by mouth four times daily
Metoclopramide HCL 5ML/5ML Solution-Take 5ML by mouth four times daily (generic Reglan)
Pentasa 500MG CR Capsules-Take two capsules by mouth three times daily
Prednisone 10MG Tablets-3 week taper, 3 first week, 2 next week, 1 last week by mouth every day
Prenatal vitamin (this doesn't upset my stomach), one a day
Hyoscyamine 0.375MG ER Tablets-Take one tablet by mouth twice daily
Lyrica 150MG Capsules-Take one capsule by mouth three times daily
Cymbalta 30MG Capsules-Take one capsule by mouth at night (they changed to this from one capsule by mouth every morning and two capsules every evening when I left the hospital the last time)
Promethazine 25MG Tablets-Take one tablet by mouth every six hours as needed for nausea (generic Phenergan)
Oxycodone 5MG IMM REL Tablets-Take one or two tablet(s) by mouth every four hours as needed for pain
-- and when I finished that pain prescription, I was given
Hydrocodone/APAP 10MG/325MG Tablets-Take one tablet by mouth three times daily
-- and when I was on the Oxycodone I was also allowed Acetaminophen 500MG by mouth every 6 hours as needed for pain
-- also allowed to by OTC Colace as needed for constipation (which I still haven't experienced LOL)
 
Okay, now that THAT'S out there what am I asking for help for? First of all, does anyone else have pain in the center of their chests and following along their left rib constantly? It's a burning pain like someone set me on fire inside in that area. It sometimes is exasperated by certain foods but its always there. Pain meds help and it feels like the prednisone is slowing beginning to work as well but I'm wondering if anyone else is experiencing or has experienced this. They said I have some inflammation and mild ulcers in my colon but not so that my pain level is on constant 8-9 before the pain medicine and it only seems to last about 2 and a half to 3 hours only.
 
The second thing I'm seriously nervous about is what they said I seem to be showing signs of: hypokalemia. "When your potassium levels are too low." This last hospital visit, I was being given those potassium horse pills with every medicine feeding. They took blood every five hours and returned about an hour later each time with more potassium. I wasn't on IV potassium chloride because my veins kept collapsing from all the dehydration and from the previous two hospital visits I'd been on constant potassium chloride IV fluids. The doctors and nurses said that its pretty hard on the veins and was probably responsible for not being able to handle an IV the last visit. Still though, I'm thinking of having my regular doctor check my B-12 and potassium levels when I see him for the follow-up visit on Friday.
 
So, I guess that's the help and advice I'm asking for. It's not super important. I'm not in need of the ER or anything, just curious if anyone else might have had these experiences or pains or this hypokalemia stuff.
 
Oh, and 'cause my body LOOOOOOOOOVES me...the pain and stress has caused a super-myalgia in my left knee while I was at the hospital last time and 'cause it REALLY loves me, I now have it really bad in both knees. YAAAAAAAAY. I'm actually trying to be upbeat because with the lowered dosage of Cymbalta, I'm getting more depressed and I'm trying my best to fight it until I talk with my doctor about my options.
 
So thanks for whatever you all can tell me and I hope you're all feeling the best you can feel. Also, seriously sorry that this post was so un-needfully long.


27/f
Allergies and Asthma my whole life: Benadryl
Depression and PTSD after surgeries and illness of 2003 (turned out to be Crohns)
Crohns Dx'd: February 2008: Pentasa, Hyoscyamine
Fibromyalgia Dx'd: July 21, 2009: Lyrica, Cymbalta, Hydrocodone, Prenatal Vitamin


Joie1
Regular Member


Date Joined Oct 2008
Total Posts : 376
   Posted 5/27/2010 7:18 AM (GMT -7)   
Er....doesn't anyone feel like this? Anything please. Just anyone's thoughts. I know vomiting and constant D cause potassium to be low but each time, they kept me because my potassium levels were so low they told me they were afraid I'd have a heart attack. I'm only 29. Goodness but please...anyone...am I the only one to experience this like this? I'm nagging. I'm sorry. I'm actually I suppose afraid of the whole potassium thing.
27/f
Allergies and Asthma my whole life: Benadryl
Depression and PTSD after surgeries and illness of 2003 (turned out to be Crohns)
Crohns Dx'd: February 2008: Pentasa, Hyoscyamine
Fibromyalgia Dx'd: July 21, 2009: Lyrica, Cymbalta, Hydrocodone, Prenatal Vitamin


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/27/2010 9:11 AM (GMT -7)   
Sorry Joie but I haven't ever had pain like that. I have had pain in my upper ribcage area, but nothing on the left side. Mine was always from Acid Reflux/Gerd. Sorry not much help.
Gail*Nanners* Co-Moderator for Crohns Disease 
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"*

WriterMum
Regular Member


Date Joined Apr 2009
Total Posts : 166
   Posted 5/27/2010 12:51 PM (GMT -7)   
I was actually thinking GERD too. I went to the hospital once a few years ago with what I thought was a heart attack!! They sent me home with no answers. I had the same thing happen after my Crohn's diagnosis and the ER doctor said go to your GI because chest pains are very frequently digestive system related. I had a scope down my throat and I was then diagnosed with a hiatus hernia and GERD. I have been on Nexium on and off and it really helps. The pain was definitely up there and pain pills didn't really help. The Nexium really did, and eating carefully for a while does too. A low residue diet that doesn't create a lot of acid etc. is very helpful.

Good luck, and I hope you feel better soon.

Oh, and the prednisone did not help the chest pains either, so when I was flaring and having GERD I needed both medications.
45 years old. Diagnosed with moderate to severe Crohn's in April 2005. Hiatus hernia diagnosed in 2008. Had Crohn's under control until March last year when I had a major flare up and ended up in hospital. Diagnosis is now CD and IBS. Getting it under control again.
Currently taking: Salofalk 2000 mg, Nexium, Calcium and Vitamin D, Matamucil, Yogurt for probiotics, Salofalk suppositories as needed.


leysa
Regular Member


Date Joined Oct 2009
Total Posts : 111
   Posted 5/27/2010 1:18 PM (GMT -7)   
This sounds VERY familiar to me.

I have been suffering from chronic left-side pain for well over a year now - I get some in the center of my abdomen as well, but it's mostly along the left side. Like, trace the ribs all the way down my side, and at the bottom of them is where it's the worst - it feels to me like something is twisting/pressing in there constantly. I too was hospitalized about 2 months ago due to the severe pain and - you guessed it - low potassium levels. However, I don't get the vomiting, I get the diarrhea to the point that I end up passing nothing but mucus and blood. I have had severe nausea with it, but I usually don't throw up. In my case I think the nausea is caused by the pain....when it's bad it feels like something is being twisted to pieces in that one spot.

While I was in the hospital they also had me on the potassium drip AND the horsepills because my levels were so bad. My calcium was apparently through the floor as well.

I'm currently diagnosed as chronic active colitis and unspecified IBD. I'm on a prednisone taper at the moment and just started Remicade in hopes of getting off the prednisone soon. Every time I dropped below 10 mg of pred I started having bad diarrhea again.

I don't really have any insight for you, but it's nice to find someone in the same boat, eh? :)
30/f
chronic active colitis/possible Crohn's - unspecified IBD - waiting on a PillCam
Lialda 1.2 mg 2x/day
Prednisone 20 mg taper in progress
Darvocet or Lortab as needed for pain


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 5/27/2010 3:20 PM (GMT -7)   
YES! Talk with Dr. Grisolano, I am also a KCVA farm out to him. He is pretty good and he was trained at Mayo Clinic. You might want to think about the next time you get a scope, that they do the long endoscopy (the 18 foot one) and colonscopy, the hydrogen breath test, and a pill camera!

In the meantime I would see if you are having esphogeal spasms, and you can get a gi cocktail (generally made up of maalox, oral lidocaine, and benadril<or some other med, etc>) and it might take a couple shots but oh it really helps!
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


Joie1
Regular Member


Date Joined Oct 2008
Total Posts : 376
   Posted 5/28/2010 12:17 AM (GMT -7)   
THANK YOU THANK YOU THANK YOU ALL!!!

tsitodawg, they checked my liver enzymes pretty constantly since I was on such high pain medication at the hospital. Usually its a bit high by the time I go to the ER and it levels out by the second day of the hospitalization (I'm always careful of my liver since I had some liver damage from when I was a teen and I ALWAYS look to see if there's any yellowing in my gums, eyes, and skin...I won't give up my liver to science if I can help it).

I'm going to hope for the best with this set of prednisone and medications. HOWEVER, I'm definitely going to print this thread out for when I see the GI next week. I was more than willing to try Remicade/Humira/Imuran...anything this last time I went to the ER. They didn't want to change the medications.
 
Ahhhhhhhhhhhhhhhhhhhhhhh!!!
Because I'm not stressed at all, my mom had to go to the ER tonight. The bug bite on her back is NOT a bug bite at all. It's a skin abscess. Cultures show she's got MRSA (antibiotic resistant staph). So, before I go over there again, I have to buy gloves and Clorox. It's going to be a REALLY bad weekend cleaning and I'm not even sure I SHOULD go over there when she's so contagious to folks with weakened immune systems. So, guess I have another begging for advice moment. What would you do in my shoes? Go and help clean the entire house for my mom while wearing gloves and a face mask or don't go help at all?
 
Alas! yeah I refuse to give up my good mood tonight/today.
27/f
Allergies and Asthma my whole life: Benadryl
Depression and PTSD after surgeries and illness of 2003 (turned out to be Crohns)
Crohns Dx'd: February 2008: Pentasa, Hyoscyamine
Fibromyalgia Dx'd: July 21, 2009: Lyrica, Cymbalta, Hydrocodone, Prenatal Vitamin

Post Edited (Joie1) : 5/28/2010 1:22:33 AM (GMT-6)


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/28/2010 1:27 AM (GMT -7)   

Joie1
Regular Member


Date Joined Oct 2008
Total Posts : 376
   Posted 5/28/2010 9:45 PM (GMT -7)   
Merrr? Chest pain with fibro...Oh.. Okay. Yeah, I've had a loverly bad time with with the fibro lately. Myalgia's definitely in both knees although left is worse then right.

tsitodawg- Believe me, I've had pancreatitis. NEEEEEEVER gonna forget that pain hehe. So, I know that one. No liver biopsies needed yet but I do always check my liver.

My doctor told me not to go to my mom's for about a week and even then I'm to avoid the bathroom and the kitchen. She's at home and taking oral Bactrim. She's got a skin lesion or skin abscess that she was given bandages for and told how to take care of it. What's weird is that they didn't keep her. But I suspect its the hospital. Instead of going to the closest hospital, she always goes to this other hospital that would've let me die years ago if I'd gone to the ER. North Kansas City Hospital sucks. My aunt actually was surprised too. She said that when her BIL (bro in law) had MRSA, they put him in isolation for three weeks. My mom doesn't have a spleen so she's even going to have a harder time of fighting it off before you add in the heart damage from a heart infection AND then COPD. If she starts feeling sicker I'm going to tell her to bite her lip and just go to KUMed. It's a teaching hospital for one so its costs are a bit cheaper but the other thing I like is that they REALLY want to fix you. All those residents and interns.
29/f
Allergies and Asthma my whole life: Benadryl
Depression and PTSD after surgeries and illness of 2003 (turned out to be Crohns)
Crohns Dx'd: February 2008: Pentasa, Hyoscyamine
Fibromyalgia Dx'd: July 21, 2009: Lyrica, Cymbalta, Hydrocodone, Prenatal Vitamin


Joie1
Regular Member


Date Joined Oct 2008
Total Posts : 376
   Posted 5/28/2010 10:11 PM (GMT -7)   
Ohhh, and before I forget. The hospital doc also had given me something called Protonix which I couldn't afford. Told my regular doc that today and he gave me Prilosec. LOL, if I'd known that's what it was...I would've just gotten the OTC version. Actually, I just want all the sick sick of it all to go to normal sick...I can live with the normal sick. :-P
29/f
Allergies and Asthma my whole life: Benadryl
Depression and PTSD after surgeries and illness of 2003 (turned out to be Crohns)
Crohns Dx'd: February 2008: Pentasa, Hyoscyamine
Fibromyalgia Dx'd: July 21, 2009: Lyrica, Cymbalta, Hydrocodone, Prenatal Vitamin


mdf34
Veteran Member


Date Joined Feb 2010
Total Posts : 925
   Posted 5/28/2010 11:17 PM (GMT -7)   
protonix is a higher level/different medicine that does the same job as nexium and prilosec.
 
As for the rest of what you wrote, I felt like, ummmmmmmmm................what?!?!?  That's a full plate you got there.  Best of luck in getting through it.
Diagnosed (FINALLY) UC Sept 09/Diagnosis amended 5-3-10 to Crohn's
Taking Pentasa 500mg/8x/day
Entocort 3X/day
Bentyl as needed
1000 mg Vitamin C
Prilosec 1X/day
Flonase
 
 


Charlee
Regular Member


Date Joined Apr 2010
Total Posts : 72
   Posted 5/29/2010 2:26 AM (GMT -7)   
Hey, full plate all right. Central and left radiating chest pain/burning definitely sounds like reflux. Are you burping heaps? Anyway, would'nt hurt to be on a PPI (protein pump inhibitor), they reduce the acid in the stomach. When you take it though, take it regularly, like daily or twice daily for a few weeks at least. I was on nexium, now on pariet. I definitely get that same sort of pain and discomfort. They tend to work straight away, so the tempation to stop them after a day or two is there. But remember, when the acid is reduced is when the stomach and oesophogus has time to repair and heal, that's why you need to be on them for a while, but check with the doc just in case. Given the potassium is low, you need to keep an eye on the heart. I am wondering if you are getting any heart palpitations, or shortness of breath? This may indicate the heart. Check with you doc. Sounds like you definitely need a gastroscope to have a look see at that oesophogus and stomach to be sure. My doc. tells me that GORD or (GERD) pretty much goes hand in hand with IBD's. But a PPI sure makes life a little more comfortable. I agree with you in looking after the liver - keep an eye on it!! As for your mum, you say she is on Bactrim? Is that the only anti-biotic she is on for the MRSA? I thought vancomycin is the one to have for this. Anyway, as hard as it is to stay away, I agree, at this time you need to, especially with the way you are feeling. If someone else can take care of the cleaning, you need to get them in. Bathrooms and kitchens are notorius for harbouring the bactera. I do have a cleaning product to use. Whoever is in there, get them to clean the bathroom, toilet and kitchen with milton. Its known to kill the MRSA bug and the VRE bug. Putting milton into the washing machine for clothes and bed sheets is also a good idea. Use it diluted. Hope you and your mum have a positive turn soon. All the best.

Charlee
37y/o female from Australia
Dx: crohns april 2010
Meds: Currently : prednisone, calcium, vit d, nexium, probiotics, fish oil

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