Needing a little love & support

New Topic Post Reply Printable Version
34 posts in this thread.
Viewing Page :
 1  2 
[ << Previous Thread | Next Thread >> ]

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted Today 1:21 PM (GMT -7)   
Well guys I am not sure if you remember or not, but I just returned from vacation about a week and half ago.  I told you all that I had flared while on vacation and did a quick 10 day burst of Pred.  It stopped my flare, but about a week after I finished the Pred burst, my symptoms have returned.  I am so bummed right now.
 
I have alot of cramping, and have gone from 1-2 fairly normal stools a day, to already had 6-7 D events today.  Three of those were before I even ate breakfast!!  And the rectal spasms I am having after the D are horrible shocked   Any tips to help with those?  I have taken Donnatal to try to help it, but it didn't work this time.  Trying to stay bland in my diet hoping that might help some too.
 
I have almost had an accident twice already.  Called the GI this morning and left a message.  Guess this means more of the stupid Pred, but in this case it really is a necessary evil.
 
So if you have any extra love and support to share, I sure could use it.  cry
Thanks,
Gail *Nanners* 
 
 
Been living with Crohn's Disease for 33 years.  Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium.  Resections in 2002 and 2005.  Also diagnosed with Fibromyalgia and Osteoarthritis. Currently my Crohns is in remission.


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted Today 1:27 PM (GMT -7)   
Gail,

I'm sorry you are having trouble. I don't really have any advice. Unfortunately the evil pred is usually the miracle drug for me. I hope you can get things under control soon. Until then, be kind to yourself.
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


EMom
Veteran Member


Date Joined Aug 2007
Total Posts : 990
   Posted Today 1:29 PM (GMT -7)   
I'm not good at those long distance hug things, but I'm so sorry you're suffering... please know you're in my prayers!
Mom to 16 year old son diagnosed in June, 2007.
Omega 3s, digestive enzymes, probiotics, vit. C, calcium w/D3, a good multivitamin and SCD legal yogurt
Started The Maker's Diet in Sept. '07. Gradually learning/using more Specific Carbohydrate Diet (SCD) recipes, too! (cooking challenged)


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted Today 1:30 PM (GMT -7)   
((((((((((((((((((((((((((((((((Nanners)))))))))))))))))))))))))))))))
Forum Co-moderator - Crohn's Disease
...I will find a way, or make one. -Philip Sidney 1554-1586
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted Today 2:15 PM (GMT -7)   
Oh dear....I am so sorry!!!! Surely there is something your doctor can do to make this stop! I hope you haven't been putting yourself under more stress than all of us usually do. I'll be thinking about you...please, please get better. I know prednisone is horrid sometimes but at least it gives our lives a little bit more quality.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone(down to 10 mg), pentasa, bentyl as needed, prilosec, tandem plus, humira, and good probiotics
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
http://weblog.xanga.com/harlequin_garret


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted Today 2:41 PM (GMT -7)   
Just spoke with the doc and I am to start the Prednisone again. This time he wants me to start at 30 mg. and wean down every 4 days or so by 5 mg. If symptoms start up again, go back up. I am one of those that know the Prednisone works for me, so as much as I hate it, I will take it. Just want to feel better again and I know that's what will help me get there.

Thanks for your support. This flare has really bummed me out this time. I think I was in some false dream world or something thinking that it wasn't going to come back. I knew I would have occasional bad days, but I thought I was doing what I was supposed to and by doing what was right, that I wouldn't flare. But with this DD you never know, do you?

EMom sure wish there was someway I could get that hug, I sure do need it right now. This flare for some reason has really gotten to me. So to those that pray, please keep me in your prayers.

Thanks again,
Gail *Nanners*
Been living with Crohn's Disease for 33 years.  Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium.  Resections in 2002 and 2005.  Also diagnosed with Fibromyalgia and Osteoarthritis. Currently my Crohns is in remission.


survivor49
Regular Member


Date Joined Oct 2007
Total Posts : 241
   Posted Today 3:23 PM (GMT -7)   
this would be a time when i would use ensure and take a percocet while waiting for the pred to kick in. have you considered the biologics?

MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted Today 3:23 PM (GMT -7)   
Nanners I get those rectal spasms sometimnes too . . . it seems to be like a muscle spasm, and I have actually had some luck massaging it to make it relax. Sounds weird I know, but press a couple of fingers right there around the anus and push up and gently massage. Just don't do this out in public!

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted Today 3:24 PM (GMT -7)   
I'm so sorry nanners...and of course I'm sending you tons of support and big ((((((((((((((((((((((HUGS)))))))))))))))))

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted Today 3:28 PM (GMT -7)   
As much as we all badmouth prednisone, I'm glad that you know it will provide you some relief Nanners. I'm so sorry you're having such a rough time...

I did want to say one thing that might help with the rectal spasms... I always find that taking a hot bath right after the big D helps calm down my entire tract. Not scalding - just hot enough to be able to dunk right in and relax. Sometimes I even start the tub water before I sit on the toilet, that way it's ready to go as soon as I feel sort of "done"...

Sending happy thoughts your way, Nanners! The prednisone will get you on track again and you'll figure it out from there.
((hugs))
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
(miscarried at 13 weeks, now waiting to heal before trying again)
Stopped Humira August 22nd, 2008.
Went Gluten-Free, noticing some definite improvement.
Started LDN October 27th, and already LOVING IT.

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted Today 3:30 PM (GMT -7)   
Hi Nanners hope things improve soon for you and take good care of yourself. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted Today 4:16 PM (GMT -7)   
(((Nanners)))
Co-Moderator Crohn's Forum.


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted Today 5:12 PM (GMT -7)   
Huge <<<<HUG>>>>!
Sorry to hear it, Gail. Its just the cycle we all have to live with, up then down. Guess its back on meds. I get those Da**ed rectal spasms every now & then, esp. during colonoscopy preps! ( just a bit more fun, right?).
Hang in there, hopefully it'll be brief.


Sincerely,
Matthew

pix
Regular Member


Date Joined Mar 2008
Total Posts : 134
   Posted Today 6:44 PM (GMT -7)   

Gail, I'm with you , too.  You have been a support to me.  I think its common to believe that if you do everything "right" you can somehow beat the disease.  And this is the "bummer" thought--Many times we "blame" ourselves when we have problems, because we are somehow doing the "wrong" thing.  Does this make any sense?  I sure don't understand the ins and outs of all this mess, just take care of yourself!!!

Pix


belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted Today 7:10 PM (GMT -7)   
Hi Gail:

I'm so sorry to hear that your burst of pred wasn't enough to steer you out of a flare.

I used to use pred that way a lot. Use it in a short burst to shake me out of the worst of the symptoms. Relating one of these episodes to my GI once, he made an observation that I still remember. We wondered if I might be expecting too much from the drug. Taking it for such a short period. I'm not sure. I do think it sometimes can work, but I also think that it provided me a way of remaining in denial when the disease was starting to overwhelm me.

Now I have a GI who is reluctant to use pred in anything but the most dire situations and then, only as a very short term therapy until maintenance drugs can kick in. I sure do miss it, as it is the only drug that can provide me with complete relief from all symptoms -- even if only temporarily.

But do remain rooted in your reality Gail. And be prepared to consider stronger medications if the alternative means having to stay on pred for long periods.

Hugs from the heart
Belleenstein:

30+ years living with Crohn's.


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted Today 7:53 PM (GMT -7)   
Feel better! I wonder if an anti-spasmodic like hyosciamine would help w/ the butt spasm. By the way I am **** picturing us all massaging our spasming butt holes.
27 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.


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted Today 7:57 PM (GMT -7)   
(((Gail))) hope the dreaded pred does the job for you, it is a necessary evil. Good luck.
Jo

FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted Today 8:42 PM (GMT -7)   
hmmm interesting that I got censored there by the computer - just so no one thinks I said anything dirty I said I am laughing my butt off - but used the online acronym (that used an a instead of a b) but still an acronym!
27 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.


broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted Today 9:37 PM (GMT -7)   
shakehead  Oh no Nanners...(((((HUG)))))...hope you are better soon...keep us posted.

dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted Today 9:52 PM (GMT -7)   
You've got my love and best wishes Gail. We seem to be going down the same path right now (((hugs)))
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis and lupus.
B12 Shots bi-weekly

Laughter is the brush that sweeps the cobwebs from our hearts...


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/10/2008 7:54 AM (GMT -7)   
Thanks everybody for your support. I started my Pred this morning. You should have seen me trying to talk myself out of having to take it. I got woke up to go to the bathroom early this morning and it was more normal, so of course I was thinking "oh maybe it was just a bug". But of course when I got up for the day, the D quickly returned, so I gave in and took my Pred.

I would like to say that to folks who think being on a diet alone is going to keep your Crohns at bay, think again. I am taking probiotics, live faithfully on a low residue diet, and take Asacol as my maintenance med, and still I flared. So maybe you might get a little relief, but I will be surprised if it lasts long. JMHO

I wonder if there is anything we can do to keep the inflammation down.

And Bellenstein so wonderful to see you again. You have been missed!!! Thanks again for the support and hugs everyone.
Been living with Crohn's Disease for 33 years.  Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium.  Resections in 2002 and 2005.  Also diagnosed with Fibromyalgia and Osteoarthritis. Currently my Crohns is in remission.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/10/2008 10:19 AM (GMT -7)   
Oh and Bellenstein, I am sure doc and I will probably be discussing 6mp again when I see him next. I told him if it kicked up again, I would go back on it. This time I will stay on it as long as I can.
Been living with Crohn's Disease for 33 years.  Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium.  Resections in 2002 and 2005.  Also diagnosed with Fibromyalgia and Osteoarthritis. Currently my Crohns is in remission.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 12/10/2008 12:33 PM (GMT -7)   
It's the nature of the beast Nanners, but being allergic or non-responsive to traditional oral RX leaves me with no real RX to take and I feel I'm doing all the right things with diet, exercise and natural supplementation as well and still have not reached full remission....but I'm sure that I'm still better off with my current regime than nothing at all...stupid disease is what it is and even those who faithfully take their meds, alter their diets and so on can still have relapses, it's just the nature of the beast, it has a mind of it's own.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/10/2008 1:22 PM (GMT -7)   
You are so right PB4. My comment was meant to those who stop their meds and hope to be "cured" by diet alone, I just think many are ticking time bombs. IMHO I am strict with my diet, probiotics, and Asacol, but still got hit with another flare. And what sucks so much for me, is I did blood tests yesterday (before I started the Pred) and of course they are all normal. I hate how docs depend so much on these blood tests instead of being focused on our symptoms. Grrr!!!
Been living with Crohn's Disease for 33 years.  Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium.  Resections in 2002 and 2005.  Also diagnosed with Fibromyalgia and Osteoarthritis. Currently my Crohns is in remission.


dustspeck
Veteran Member


Date Joined Sep 2007
Total Posts : 565
   Posted 12/10/2008 3:04 PM (GMT -7)   
sorry to hear this nanners :/ i am so confused about remission. is this just how life is going to be for us forever now, even though we are "in remission"?

hope you are feeling some relief real soon. *hugs*
.: stephanie :.
33 y/o female diagnosed 8/8/7 with crohn's of the terminal ileum w/ stricture/scarring
meddies: 6mp, percocet, trazodone, ativan, iron, calcium, folic acid & some other vits

New Topic Post Reply Printable Version
34 posts in this thread.
Viewing Page :
 1  2 
Forum Information
Currently it is Friday, December 09, 2016 10:08 PM (GMT -7)
There are a total of 2,735,739 posts in 301,326 threads.
View Active Threads


Who's Online
This forum has 151429 registered members. Please welcome our newest member, terrance.
274 Guest(s), 8 Registered Member(s) are currently online.  Details
terrance, Tnmproject, Job_the_Phoenix, ks1905, joavila92, Sarakt, Octorobo, Csweeney1002


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer