Update....still feel icky sicky.

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Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 1/24/2009 8:21 PM (GMT -6)   
Sorry to be a Debbie Downer, but I still feel aweful. I don't think it has anything to do with my blood clot, but how should I know, I didn't even realized that was what it was to begin with.
It might just be the stomach bug still. I'm still having diarrhea. I'm emptying about every 1-2 hours and it's liquid (my husband is also still having diarrhea, but he doesn't have an ostomy, or dz). the only thing that has been able to slow it down is corn chips and pain meds. The immodium isn't doing a thing, but it never did with u/c either.
I've had a really bad headache for a couple of days now too.
I'm really afraid I'm going to become addicted to pain meds. Could my headache be withdrawl, b/c it comes about 8 hrs after I take pain meds. Then I take more to get rid of it. and oddly, they HELP with my nausea, WHY?
I'm so paranoid I'll keel over from this clot too.
I have no energy, I can barely eat. (But on the bright side, it's a good diet....not a healthy diet, but it works LOL)
Last week, I was finally getting the hang of things again and feeling good. My output was good.
I'm so scared it won't be normal again and I'll have this diarrhea forever.
Plus I'm getting gastritis from prednisone.
I just felt like complaining a bit. Sorry. I'm starting to get depressed, and I don't want these set backs to "beat" me.
Thanks for reading
Chassity
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 1/29/08 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
pred. taper, zofran, immodium, lovonox, coumadin, carafate, prenatal vit., and pain meds
(ileostomy temporary....not so sure?)

"Things turn out the best for those who make the best of the way things turn out."


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 1/25/2009 3:14 AM (GMT -6)   
I can see why you're in a Debbie Downer mode, and that's okay! It's funny you named your attitude b/c I do mine as well. I have my Debbie Downer days too...Negative Nancy...and then I force myself to be Happy Hatti b/c I refuse to allow my disease to take control of everthing. I also have Pity Parties for 10 minutes and one a day...I time them. I have clients that like to focus on the negatives in their lives, which normally are not nearly as bad as they feel they are, and I am very strict with them having timed 10 minute parties too. : ) But that's just what I do...I also tell people I'm Negative Nancy that day just to give heads up. : )

Anyway, are you dehydrated? My nurse told me that fatigue and headache are some of the first signs...I get confused and overwhelmed with my symptoms and side effects b/c so much is going on. I started trying to drink more, which does not normally always happen, and then I down Ensure. I know our situations are still very different b/c I haven't had my surgery yet, but our bodies could still be reacting the same way to similar things. But I am so sorry to hear of the blood clot and that would very scary and I wish they could so something about it as of yesterday. However, I started feeling better after drinking Ensure 2-3 times a day and really trying to push the fluid. I'm sorry you are having trouble with consistency and whatnot. I haven't experienced that yet, but I know that Immodium doesn't really work for me either. That was another reason I want to throw in the towel...it used to buy me a few hours of doing something normal, but when it quit working I was like 'why not? If Remicade and prednisone don't work anymore why the heck should Immodium?!' : )

Anyway, it's good to vent and talk about your feelings...journaling is an amazing tool...and that's what's wonderful about online supports such as this is that you journal and get response. : ) So it's hopefully a win-win situation!

I hope you start feeling better soon!!!

: ) Robin
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-5 Tx
Paxil-40mg  Prilosec-bid  Multivitamin  Moderate/Severe Pancolitis
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.
Surgery is scheduled for February 6th!!!  : )   Yea!!!!!!!!!!


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 1/25/2009 3:19 AM (GMT -6)   
Ooo...I just wanted to clarify that First, I don't have Pity Parties every day...just when I need to. : ) Which, really only occurs mabye once a month...but here lately maybe once a week...I have my moments of hating the fact that UC exists and that I have it...but not for long!!! : )

Then Secondly, my nurse thought I could taper prednisone very rapidly after surgery...she said I could go down 5mg every 3-4 days. I'm still going to work on getting down to 5 or 10mg for the surgery, but why is it that you're tapering so slowly? Do you have added complications?
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-5 Tx
Paxil-40mg  Prilosec-bid  Multivitamin  Moderate/Severe Pancolitis
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.
Surgery is scheduled for February 6th!!!  : )   Yea!!!!!!!!!!


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/25/2009 4:15 AM (GMT -6)   
Tapering slowly helps to avoid the terrible side effects associated with Prednisone. I had the hardest time going for 10 mg to 0. It took me several weeks and I actually was shaving a little off of 5 mg pills to decrease it a little at a time. My body just did not start producing it's own steroid-like drug again when I began taking away it's supplement and I went thru horrible withdrawals. I was also taking 60 mg/day orally, steroid suppositories and also steroid enemas prior to this last surgery with no response. (Remicade, Humira didn't exist for me then.) But after surgery, over time I got off of it completely. Keep in mind, my surgery was probably at the lowest point in my health, I was on a lot of pain meds, and on top of that, was having hormone issues.... even tho the Prednisone was a pain, it was manageable once I realized what I needed to do to get off of it. Tapering is necessary for some people to avoid going thru withdrawals which can have flu-like symptoms. It eases the body into producing it's own again too.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 1/25/2009 7:36 AM (GMT -6)   
Chassity--I definately agree with the thought that it is the dehydration! Your pain meds are probably just wearing off when you get the headache. My bet is your dehydration is the cause of them.

Do you have Pedialyte? That might be a good start for rehydrating...its lower in sugar than say Gatorade. Sugar can actually make the D problems worse.

As far as thickening your output...I use Potato Buds. They're the instant potatoes that aren't full of artificial things...and just one small serving can do the trick (at least for me).

RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 1/25/2009 8:07 AM (GMT -6)   
Yummy! Potato Buds...I'm learning from you guys what I should try in the future. I happen to adore instant potatoes anyway. : )

Cheese normally causes constipation if consumed in access...do you all find that it can thicken your output or does it just cause blockage?
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-5 Tx
Paxil-40mg  Prilosec-bid  Multivitamin  Moderate/Severe Pancolitis
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.
Surgery is scheduled for February 6th!!!  : )   Yea!!!!!!!!!!


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/25/2009 10:22 AM (GMT -6)   
Cheese is not an issue for me at all.  And I have problems with respect to how much and when I eat roughage.  So, maybe it's just an individual thing?  But no problems with cheese for me.

Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 1/25/2009 11:06 AM (GMT -6)   
Thanks for the advice.
I've never been a good drinker and my husband is always lecturing me on it. However, I'll really try to drink more H20. I've laid off the gatorade b/c it was going through me within 2 hrs. So I'm sure it made things worse, even though I needed those electrolytes. Pediasure I do have, but that stuff is NASTY. I have a hard time making my 14 month old drink it. She hates it too. I love ensure! They got me hooked on it while at the hospital. It's so good for you too. I try to drink one a day at least. Good snack.

Robin,
They put me on 40mg of pred with a fast taper after my original surgery (colectomy). My slow pred taper is b/c of my second emergency surgery. B/c I had so many abscesses and so much infection (the result of poor blood flow to stoma/intestine and my intestine started dying and separated from abdomen-causing a leakage into my abdomen), they thought there would be lots of inflammation post-op. They were right which is probably why I got the blood clot.
P.S. I think you're going to do great after your surgery! You have such a great attitude towards everything! And I know you'll feel better.

I have no problems with cheese, or anything really. My ET nurse told me that the thing she notices that causes the most blockages are corn chips and chinese veggies. I do notice that corn chips slow things down. But I can only eat so much, especially since I don't feel like eating. I had a baked potato with ham and cheese for dinner. It didn't hit the spot. I felt sick after dinner too.

Yesterday was lousy, but I hope to have a better day today.
Chassity
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 1/29/08 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
pred. taper, zofran, immodium, lovonox, coumadin, carafate, prenatal vit., and pain meds
(ileostomy temporary....not so sure?)

"Things turn out the best for those who make the best of the way things turn out."


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 1/25/2009 12:31 PM (GMT -6)   
I hope today is a better day for you too. : )

I've been taking Mucinex every chance I get for both the sinus and cough, and I feel like my lungs are being ripped apart each time I cough. OUCH! It's so funny b/c with all the pains and discomfort I have with UC I am the biggest whiny-butt when it comes to coughing...I don't like it!

Is there a difference between pedialyte and pediasure? I know that Parent's Choice pedialyte isn't horrible...at least not the grape. I downed at least two of those a day after I had nursed my son for awhile and was becoming dehydrated. I'm going to stock up on those as well for when I come home from surgery. We put my son on it for a couple days because he had the same cold I do...but his Mucinex worked almost immediately and he's all better. : ) Darn my immune system!!!

Chassity, I do hope you start feeling better soon!!! Isn't it difficult having such an active child and not be able to keep up with them?! I feel extremely fortunate b/c my son slept through the night till 8am!!!! AND we took a nap from 9-11am!!!

: ) Robin
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-5 Tx
Paxil-40mg  Prilosec-bid  Multivitamin  Moderate/Severe Pancolitis
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.
Surgery is scheduled for February 6th!!!  : )   Yea!!!!!!!!!!


Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 1/25/2009 1:36 PM (GMT -6)   
Oh I wish Elliott (yes it's a girl) would sleep until 8 a.m. ! She's a 6:30-7 a.m. girl. UGH!
And my Dr. has me taking the pred twice a day, so at her nap time (now) it's kicked in, so I can't nap and at night around 2-3 a.m. it's kicked in so I'm up then too.
It's been hard to keep up with her while recovering from so much. She's such a mommy's girl that she always wants me over everyone, but I have my husband and mom who've been a huge help!
And I know it's going to get better. We actually danced to Barney today (once my pain meds kicked in LOL) and that was fun and exhausting.

I don't know about Pediasure. The Pedialyte that we've tried are the cherry (red) and bubble gum. I can't stand them. BARFO! Is pediasure maybe like ensure, except for kids?

Good thing you're getting the cold b4 surgery, so you'll have a bit of immunity post-op to something like that. B/c coughing hurts more after your muscles are trying to heal!
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 1/29/08 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
pred. taper, zofran, immodium, lovonox, coumadin, carafate, prenatal vit., and pain meds
(ileostomy temporary....not so sure?)

"Things turn out the best for those who make the best of the way things turn out."


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 1/25/2009 1:51 PM (GMT -6)   
I was thinking the same thing about getting my cold now instead of later. Also, I'm glad Jackson's only last a couple days but that he did get it b/c I'm okay with him getting a little sick so his immune system can strengthen. I love your daughter's name! I've always like the name Elliott for a little girl ever since Scrubs came out. : )

I am working very hard at getting motivated to do a few projects around the house, as my time window to get things completed before surgery is becoming smaller. However, it's just so difficult to keep any kind of energy for more than 30 minutes right now. I get excited b/c I'll feel okay for a while so I take advantage and play with my son...but a little later I'm worthless again. We're Mickey Mouse Clubhouse people here at our house. : ) Jackson has always adored that show and currently we're watching a recorded episode and it gives me time to just sit and chill. I was at first against having him watch any TV but when he was in the bouncer stage still I would prop it on our bed and turn on Playhouse Disney and it would give me a chance to eat, lay down, breathe! So, he's become addicted to Mickey Mouse and I think at least three episodes from the DVR are played every day. Not saying he'll sit and watch the entire episode, but it does calm him down.

: ) Robin
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-5 Tx
Paxil-40mg  Prilosec-bid  Multivitamin  Moderate/Severe Pancolitis
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.
Surgery is scheduled for February 6th!!!  : )   Yea!!!!!!!!!!

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