What is wrong with me for crying out loud?!

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Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 8/22/2008 7:48 PM (GMT -7)   
Sorry I haven't been posting much lately... been in and out of the hospital... I saw a rheumatologist...

My hip MRI scan appears to be normal... The rheumatologist does believe me about having pain, though... She gave me some medicine... Lyrica to try.... She's talking about getting me into physical therapy...

I have really shaky hands, now... I thought it was my sleeping medicine (which I haven't taken for a long time now)... and I take this medicine that's suppose to help stop shakiness.... but it doesn't seem to help much...

I can't hold down food... which is why I have been in the hospital... The hospital believes my nausea is coming from these two masses on my right ovary... (Going to see an OBGYN Monday)... They gave me some medicine to help me eat without throwing up... but it appears to have stopped working for me...

Maybe its a side effect of one of the medicines I'm on... but my skin is really dry and itchy... particularly my chest, back, and legs....

And I'm sick and tired of UTIs... I must have had three or four UTIs these past couple months... its ridicilous...

And one of the medicines I'm on makes me so exhausted.... *The medicine that's suppose to help me not throw up* I get so tired so easily...
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 8/22/2008 7:55 PM (GMT -7)   
The dry itchy skin sounds like dehydration..mine is from that anyway and all the lost liquid.
God though I am SO sorry that's happening. I had no idea from your previous posts that anything like this was going on. Is there nothing more the doctors can do in the mean time to improve your quality of life even a small amount?
I feel for you about tiring easily. I can't function without my medicine, but when I take it it's like I'm barely there. Fatigue and drowsiness are really underrated by too many people..
Let us know how things progress please..that's really worrisome, and I hate that you're having to go through this. I'll be thinking about you!!
20 years old, Diagnosed with severe Crohn's and colitis in May of 2008.
Currently taking:
Prednisone, pentasa, alinia, bentyl, prilosec, tandem plus, and the occasional ultracet
Surgery for ectopic pregnancy(very possibly due to Crohn's inflammation) in July of 2008.
Due to start Imuran September 17 depending on blood results.


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 8/22/2008 8:12 PM (GMT -7)   
Celey - I am so sorry! Gentle hugs. Are you still away at school? That must be so tough. Are you close enough that your family can visit you in the hospital. I know you had been waiting to see a gyno. Have you still not seen one or will this be a different gyno? Have they started you on birth control? Sorry for the 20 questions I just need more info to give advice. Just know I am thinking of you and pulling for you.
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 8/22/2008 8:19 PM (GMT -7)   
Yeah... still at school.... *It's been rough... I may have to drop a class already* I was putting off seeing the gyno... *Didn't want to hassle with making an appointment and trying to find a ride* Not on birth control...

Man... I'm so tired...

Oh... and I was having trouble peeing... but that's stopped now... a doctor at the hospital widened my uretha a little bit... *Hurt, man* Said it had been really narrowed.... Asked him what causes that... he says it just happens sometimes..... Meh.... //@.@\\'
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 8/22/2008 10:53 PM (GMT -7)   
There are so many possibilities here. If you are on cortisone, prednisone or something like that, that may be the cause of the tremors. If they have you on cortisone and something to stop the tremors, you are being over-medicated. The hip pain and possibly the UTI symptoms could be from Crohn's. Essentially it is an inflammation that happens as a result of the gut inflammation. Did you actually have positive identification of bacteria in the UTI, or did they just go on the symptoms? The dry itchy skin could also be from the same cause. It is essentially an allergic reaction in all three cases, caused by agents of inflammation circulating in the blood. You could try antihistamines to get it under control (sorry I don't have a recommendation, but a quick search of HW will turn up some). You could also try vitamin E if you don't have bleeding problems or surgery in the near future. Vitamin E has fewer side effects and actually inhibits the production of the IgE that triggers allergic reactions. The other possibility is deficiencies. If you are throwing up/nauseous, you may be seriously short of the normal dietary needs. That also can be triggered by Crohn's as a result of strictures or reduced peristalsis from gut inflammation. Have they reviewed your Crohn's situation recently? One other thing - if you have been treated for several UTI's recently, you will have had lots of antibiotics. Make sure you take a probiotic: one with no FOS and several species of Lactobacillus, preferably one with L. casei as one of the species. A brand that needs refrigeration is preferable, since it helps preserve more viable bacteria. One undesirable possibility of antibiotics is the potential to trigger IBS on top of the Crohn's. You might also try avoiding regular milk and get Lactaid milk (lactose in it broken down by lactase already) and avoid gluten as an experiment.
One final note - you must be under a lot of stress just now and stress is a known trigger for Crohn's. You need to deal with the stress. Breathing exercises or - i hate to say this - more medication. I don't like to suggest it because there are so many drug interactions and individual reactions and side effects. If there is any other way, I would say choose that other way first.

Post Edited (Keeper) : 8/22/2008 11:59:00 PM (GMT-6)


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 8/23/2008 7:20 AM (GMT -7)   
Celey - you have to make seeing a gyno a priority over everything. Why didn't they have one see you in the hospital???? Sometimes all it takes to get rid of those nasty cysts is a birth control prescription. I don't want to scare you but I think you need a wake up call. You have masses on your ovaries causing you to be hospitalized!!! What if it was a cancer and you could catch it early, have them removed, and avoid chemo! What if they burst like poor Navy's did and you need surgery! What if all it is is a cyst and you can take birth control and have them go away in a month. I had a 6 cm cyst that dissolved w/ one month of BC. Please put your health FIRST. You may have something very serious going on. I know you are probably nervous about going to the gyno for the first time but really it is not that bad. We had made a deal a long time ago about both of us making our gyno appointments. You had booked yours before me. What happened? Well I finally went and got it over with. Yes I had to leave work early and it was a pain in the arse but its done. Get it done!
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 8/23/2008 8:09 AM (GMT -7)   
Hi Celey I know your not feeling great but I agree you need to try to make sure you get to your app. Monday. Your not going to be able to help yourself without seeing one. Gee I wish I had a magic wand to wave about at times. Call the hosp. maybe and tell them your not able to keep foods down . How long have you been out of the hospital? I was hoping things were better for you by now. It could be your ovary giving you so much grief. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 8/23/2008 8:23 AM (GMT -7)   
Celey - sorry, I didn't see that you made the appointment. I don't care if you wear a diaper and are puking in a trash bag GET TO THAT APPOINTMENT!
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/23/2008 9:37 AM (GMT -7)   
((((CELEY)))) I sure hope they get you feeling better soon. I am wondering if you have a fistula/abcess inside. I wonder this because of the many UTI's and possibly the mass. Could be the cause of the hip pain maybe?? I hope you make it to your appt and they are able to help. We love and care for you Celey, so be sure to take good care of yourself and see the doctor as needed.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 8/23/2008 10:01 AM (GMT -7)   
I'm sorry, Fitzy.... I did go to my first appointment with the gyno... and they were talking about a laproscopy the next appointment... and... well... I just never made the next appointment....


My Crohn's inflammation is under control right now... My white blood cell count is in the normal range... and I don't have as much pain as I did... I still have bathroom problems... but doctors said they can't do anything about mine... *I seem to fluctuate back and forth from constipation for several days... then diarrhea for several days... and back to constipation again...*


I actually went to a new GI doctor... liked him because he talked to me and everything... He didn't want to repeat a colonoscopy since I had one in May.... He did a small bowel series (everything looked okay) and an endoscopy to look at my stomach... my stomach looks okay (if a bit small due to not being able to hold anything down and lack of appetite...)...

Had a cystoscopy... an abdominal ultrasound... and a pelvic ultrasound....

So, I think the only thing that is giving me problems must be those masses on my right ovary... *And my joints still bother me, too... the medicine does help a little bit...*

And if I could just get off that nausea medicine... maybe I'll feel less tired, too....
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/23/2008 10:19 AM (GMT -7)   
What did they give you for nausea? Phenergan? If so, although I take it nightly I am now able to function on it, but only becuz I have taken it for so long. It made me really tired at first too, I could sleep forever. Maybe you could ask your doc about Zofran, that works well for the nausea, without knocking you out. Dramamine is over the counter usually used for motion sickness but helps with nausea, but it can make you a little tired too. Good luck Celey, hope they get you feeling better soon.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 8/23/2008 4:10 PM (GMT -7)   
They gave me metoclopram.... Don't know what its generic for.... and I'm beginning to doubt it... I threw up my pizza last night... and I took the medicine at the right time... thirty minutes before I eat... The day before that I threw up my cereal.... The only thing I've held down this week is some yogurt and a piece of cantelope...
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 8/23/2008 5:09 PM (GMT -7)   
((((((HUGS)))))) Celey

yellowroseoftexas
Regular Member


Date Joined Jun 2007
Total Posts : 45
   Posted 8/23/2008 5:14 PM (GMT -7)   
Celey,

I don't know if this will help, but before I got the Mirena coil and stopped my periods and the like I did the same thing swing from const to D almost overnight. I really think that once you get your hormones under control and everything back as it should be I bet that swing will stop. Maybe a little more incentive to make sure you make the appointment.

Let us know how it goes.

All the best,

Amy

Post Edited By Moderator (ivy6) : 8/24/2008 4:45:01 PM (GMT-6)


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 8/23/2008 9:46 PM (GMT -7)   
Don't apologize Celey. I am just worried about you. Feel better.
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


Marie-Claire
Veteran Member


Date Joined Mar 2007
Total Posts : 900
   Posted 8/23/2008 10:16 PM (GMT -7)   
Dear Celey.... thinking and praying for you honey! Hang in there.
Hope you are feeling better soon. !
Mary
51 yr.old retired RN,Crohn's D for last35 yrs..severe esophagitis, migraines,strictures,urethral stricture,depression,probable MS.,RLS, arthritis, PTSD ,general anxiety disorder.
 
 


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 8/24/2008 9:26 AM (GMT -7)   
Celey,
I've only just got to see your post... I wanted you to know I'll be thinking about you hon...
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis

Laughter is the brush that sweeps the cobwebs from our hearts


Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 8/25/2008 6:42 PM (GMT -7)   
Have another rheumatologist appointment... tomorrow.... Gotta call my OBGYN tomorrow... ask him what I need to do... *He's retiring soon apparently and doesn't want an operation done on me without some kind of follow-up...* And he's ordered blood work for some reason....
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6049
   Posted 8/26/2008 12:54 AM (GMT -7)   
hang in there!
randynoguts 



     http://www.geocities.com/randynogutsweb/

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