Grr I'm so frustrated!

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Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 3/14/2008 11:29 AM (GMT -6)   
I'm not frustrated with my Uc because for once it's actually behaving!  Well sort....I have been having a slight increase of symptoms but I think it's because my body is saying I am due to start my period (technically I haven't had one since October).  But what frustrates me now is some of the other things that are going on with me now and my inability to take NSAIDs.  I think I could finally be painfree if I was just able to take an anti-inflammatory.  It seems once I get a step up from one thing another steps in and takes its place.  I normally just roll with the punches but every now and then I like to throw a pity party - makes me feel better in the end.  Want to join me at my pity party - I'll bring the cake?  :-)
 
I now have to go see a neurologist because my pain doc thinks that I may have a disc problem in my lower spine.  I will know for sure when I go for a MRI on Monday.  But now I'm beginning to wonder (since a friend brought it up me yesterday) if it is possible to get a cyst on your spinal cord.  I am HIGHLY prone to cysts and get them in the most unusual places.  But it's just speculation on my part - I don't know if I really do or not.  Or even what the heck is going on.  But many of my other pains would much easier to take and bear if I could just take anti-inflammatories. *sigh - darn that Uc!* Oh and forgot to mention - I know I lost my reflex in my right knee but had reflex in my right foot a month ago, now that is also gone.  I'm basically losing feeling and reflex on the right side of my body.  I also have fine tremors in my right arm.  I feel as if I'm going downhill ever sooooo slowly - one thing at a time!
 
Ok, random pity party is over (for now tongue )
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Fibromyalgia-'06~Sacroiliitis-epidural injections
To help Healingwell - click here: DONATE
 
 
 
 

 
 


munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 3/14/2008 11:38 AM (GMT -6)   
I'll come to the pity party if the cake is chocolate, lol.......So sorry to hear the trouble you are experiencing. I know that ibuprofen can take care of alot of pain, if only we could take it. I hope you have a good doctor's visit, and find nothing disturbing. Best of luck........

Donna
diagnosed with uc 27 years ago.  Enojoyed 10 - 12 year remission
 
asacol 400 mg 3 tabs 3x a day, didn't work
was on prednisone, doc took me off.  Asacol didn't help.
 
currently on Sulfasalazine 2 tabs 3x day. Folic acid,mesalamine enema every other night, Omega 3, Probiotics, multi vitamin, cacium supplement, Biotin....


jano437
Veteran Member


Date Joined Jul 2005
Total Posts : 1614
   Posted 3/14/2008 6:00 PM (GMT -6)   
Sherry, Sorry to hear you are going through all this. Just when you think you can take a step forward, you take 2 steps back. Well, at least your UC is not acting up. Hope everything goes ok with the MRI. And of course I'll join your pity party. Can I bring anything?
Janice
Diagnosed July 2005 with Pancolitis
Asacol 4 tabs 3 times daily
Pro-Bio
Forvia
calcium
Diosmin(for leg and vein support)


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 3/14/2008 6:29 PM (GMT -6)   
Sure, you can bring ice cream to go with the chocolate cake, Janice and I will bring the Lactaid pills :)
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Fibromyalgia-'06~Sacroiliitis-epidural injections
To help Healingwell - click here: DONATE
 
 
 
 

 
 


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 3/14/2008 7:24 PM (GMT -6)   
Sherry
I am so bleeding sorry
You are going thru so much and still here supporting all .....you are truly special in my books

I wish you all the best in MRI on Monday and my heart thoughts and prayers are with you ......Luvs.......LYN
  DX With Crohns,Pyoderma Gangrenosum, Anxiety/ Panic and Other Disorders
         Mod for Alzheimer's, Anxiety and Panic and Co Mod for Crohns
    www.healingwell.com Donate today to keep HW helping others
 
                     
 


tjf
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Date Joined Dec 2005
Total Posts : 3238
   Posted 3/14/2008 7:39 PM (GMT -6)   
Chocolate cake? You don't have to ask me twice! You hang in there. Let us know what the MRI says. Is there any other option medicine wise?
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

http://www.healingwell.com/donate
Co-Moderator UC Forum


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 3/14/2008 9:28 PM (GMT -6)   
Sorry your body is ganging up on you, Sherry. Eat some cake for me, will you?

It actually is possible to have a cyst in your spinal cord, but as far as I know, they're congenital, forming before you're born as the cord develops. Hopefully it will be something curable (isn't it a shame that we're reduced to wishing for curable diseases?) and you'll soon be feeling better.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


quincy
Elite Member


Date Joined May 2003
Total Posts : 30687
   Posted 3/15/2008 1:08 AM (GMT -6)   
cake??? I LOVE cake! must have ice cream and coffee to make it official...thanks for the invite Sherry!!

Well, here goes....OMG!!! What you're proposing that's going on is most scary! I do hope the MRI will reveal all and that it's something that can be taken care of. The fact that changes are happening so quickly could be because of the 6-MP??
Have you considered that?
I have a friend who was on Imuran and she couldn't walk from the extreme pain and loss of function in her legs...very scary indeed!

If nothing shows on the MRI..I'd lean toward the 6-MP.

They're doing your head/neck and your lower back..right?

Sherry...did you know that you can purchase a copy of your MRI? You have to request it for personal reference...but it might be good to have a copy considering all you're going through and might have to in the future.

Healing thoughts sent your way....I sure wish you didn't have to go through so much all the time.

quincy xx
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 3/15/2008 10:46 AM (GMT -6)   
Cool - cake, ice cream, coffee and Lactaid! A gal can't ask for more! :)

No, unfortunately there is no other med available to me for pain. I can always resort to narcotic pain meds but I don't want to go that route. They constipate me majorly. Every once in a while in a blue moon I will take a Naproxen but only one because if I take more then that I start bleeding. I guess I can always start back on my Neurontin or even my Skelaxin. Skelaxin (I'm not sure if I'm spelling that right) is a muscle relaxer and I'm having the issue of leg muscle weakness so I don't want to collapse when I'm walking! Once I know what I'm facing then I'm sure we can take other medicinal routes.

Hmm just thought of something - I think I may go and try Bee Propolis again. Couldn't hurt anyway.

Q - yes I thought about the 6mp but I don't think it's that. Why would all of a sudden would I have these issues especially after being on 6mp for 1 1/2 years??? But if nothing shows up on the MRI - I guess I can raise the possibility to the doc.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Fibromyalgia-'06~Sacroiliitis-epidural injections
To help Healingwell - click here: DONATE
 
 
 
 

 
 


NMcP
Regular Member


Date Joined Mar 2008
Total Posts : 212
   Posted 3/15/2008 11:22 AM (GMT -6)   
Have you tried any type of alternative therapy for the pain? My aunt had horrible arthritis and used bio-feedback to control the pain. Another friend of mine broke his arm clean thru and now uses acupuncture for the pain. They both totally swear by their chosen therapies.

I used to suck up advil like there was no tomorrow for cramps, heaches, tooth pain, etc. That probably contributed to the UC. Now I don't take any of it (aspirin either). I take tylenol. I wrenched my back last year doing yard work lifting landscaping rocks like a big dope (I know I know..lift with the knees, not the back). The tylenol didn't work. But midol did. Go figure.

Good luck with your tests! Hang in there! Sooner or later things HAVE to get better!
Age: 48
location: Seattle, Wa
Diagnosed with UC in June 2006
Medications: Lialda 4 pills once a day, Canasa supps as needed
Supplements: vitamins, probiotics
No. of colonoscopies: 1
Originally diagnosed with moderate UC, pancolitis
No flares since Jan, 2007


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 3/15/2008 6:22 PM (GMT -6)   
Ah Sherry! Dang that all... I'm there for cake and ice cream! So, it's chocolate cake - what ice cream? Mint choco chip? yum... or even just a good vanilla - I'm licking lips as we speak...

I would really suggest consulting with a chiro about the disc issue. I've gotten a lot of relief in the past few weeks from doing just that. I really wonder what an MD would do for the problems I was having... I'm sure pain meds and muscle relaxers and then I wouldn't be able to function at all... Then the people at work would think I'm really loopy - or they could just blame it on being a yankee...
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
 
Asacol 12 per day,  Azathioprine 75mg, Aciphex, Effexor XR, Forvia and a Probiotic
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


Susiebuddy
Veteran Member


Date Joined Feb 2005
Total Posts : 1373
   Posted 3/15/2008 11:54 PM (GMT -6)   
Hey Sherry~

Sorry to hear about all your difficulties going on, it must be in the air.... I have a list I could bring to the pity party if you are still having one... LOL.... I'll even bring my own Chocolate Cake and even some ice cream (lactose free of course) to share with everyone else..

Anyhow, I hope they can figure out what's going on and give you some relief soon. You're not suffering alone here and thank God for this forum so you can vent and have as many pity parties as you want... I'm sure here you'll find lots of people who will have times they want to "Party" with you... hee hee... Just let me know what kind of cake to bring and I'll be there!!!!!!
Diagnosed with U/C January 31st, 2004, IBS on July 21st, 2006 
Meds: Rowasa enema's- Been off them since leaving Montana, praying I stay off them.
         Bentyl 10mg. As needed - Nexium 40mg. 
         Xanax .5mg as needed - Effexor 37.5mg. - Culturelle 1x a day
 
    Matthew 11:29   Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. http://www.myspace.com/77016897         


shoegrl2
Veteran Member


Date Joined Nov 2005
Total Posts : 675
   Posted 3/16/2008 5:36 PM (GMT -6)   

Sherry,

OMG you are blessed with so many issues! This one surely calls for a big pity party. I'll bring the party hats and the balloons. I really hope that the MRI shows something conclusive that they are able to treat. There are some great suggestions on here too. My Mom resorted to accupuncture when the Dr.(s) could not help her with her chronic back pain. She saw neurologists, chiropractors, pain clinics, therapists, had cortizone shots in her back, etc. The accupuncture really gave her some relief and now she is off of the tinge unit (pain unit) and is pretty much pain free. I'm not suggesting that your symptoms are even the same, but just to illustrate that my 70 yr. old Mom got relief from alternative therapy.  I'm sure that it will be a while before your MRI results are in but keep us posted. Good luck at your appt. I'll be thinking of you!


Debbie
pancolitis. Osteopenia. multi-vitamin, calcium, omeprazole, benefiber, boniva, align.  Remicade since Dec. 2005. www.myspace.com/dmbarris
 
"The secret to my own happiness, my own good future, is within my own hands, I must not miss that opportunity"
 


~ChristieAnn67~
Regular Member


Date Joined Dec 2007
Total Posts : 151
   Posted 3/16/2008 9:46 PM (GMT -6)   
Sherry,  I am so sorry you are going through this!    It must be scary,  but my prayers go out to ya.   Hope you find out all the answers to whats going on,  and hope its curable.    plz keep us informed. 
                                          ~Christie
41 yo RN, happily married, with 2 beautiful daughters, Tianna(14 yo) and Alyssa(10 yo).   Diagnosed L sided Ulcerative Colitis in Jan '04 and Diabetes type 2 in June '05.
                                         Medications
Remicade infusions ~ 11/6/07, 12/6/07, 12/20/07, 2/14/08,  6-MP 100mg daily, Pentasa 500mg twice a day, prednisone 20mg 10mg 5mg daily, Nexium 40mg twice a day, Lantus insulin 45 35 25 20 units daily, Novolog 10 8 5 units with sliding scale at meals, Amaryl 2mg daily, multi-vitamin daily, Calcium daily, B complex vit daily,  and pro-biotics daily.


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 3/17/2008 5:55 AM (GMT -6)   
Oh it's mint chocolate chip ice cream of course! :)

I think I will give a chiro or accupuncture a try if the MRI shows nothing. It may help with the pain however that still won't give me the answer of why I'm losing nerve function on the right side of my body. I'm only saying this if the MRI doesn't show anything. But who knows maybe it will show something - not with my luck though! lol I don't hold much hope in the MRI showing anything really.

Joan, my primary wanted to try Celebrex on me but my GI adamantly said no. I am highly sensitive to anything that can cause bleeding. I can't even take aspirin without it making me flare. I'm in a happy place with my UC now that I'm not sure I want to rock THAT boat! :)

Susie, of course you can bring your own list to the party! Heck we all can bring our lists :)
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Fibromyalgia-'06~Sacroiliitis-epidural injections
To help Healingwell - click here: DONATE
 
 
 
 

 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30687
   Posted 3/17/2008 1:01 PM (GMT -6)   
Just don't let Wilma bring any bronto legs for snacks!!! bwahahahaaaa..groan! Pity parties are awesome if there's great company. Sounds as though yours could be a blast!!

q
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 3/18/2008 6:03 AM (GMT -6)   
Well I had the MRI yesterday and it wasn't toooooo bad. I should get the results sometime this week. What sort of freaked me out was when they first put my head in that head case with bars and then being place in the chamber. I was starting to get scared but made myself calm down. After that, it was a piece of cake. The contrast they used wasn't the same warming stuff they use in CAT scans. In fact, I didn't even feel a thing. So overall, even though it wasn't my most favorite test - that is reserved for the bone density test (now thats cool!), it wasn't my worse either (that being the sigmoidoscopies!).

And umm what are bronto legs????


 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Fibromyalgia-'06~Sacroiliitis-epidural injections
To help Healingwell - click here: DONATE
 
 
 
 

 
 

Post Edited (Red_34) : 3/18/2008 10:29:36 AM (GMT-6)


quincy
Elite Member


Date Joined May 2003
Total Posts : 30687
   Posted 3/18/2008 9:36 AM (GMT -6)   
Wow..happy it went smoothly for you. You never mentioned how loud it is in the chamber even with the headphones on.

Wilma (Susiebuddy)...bronto legs (turkey legs that made her sick).

Has your face rash disappeared Sherry?

q
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 3/18/2008 11:31 AM (GMT -6)   
Oh most definately loud! It sort of had rhythm though lol. I think the table shaking a little and the machine gun sounds were not my favorite thing out of the whole thing. The other bangs were like being at a rock concert :)

Yes my face rash went away! Something as simple as toothpaste who would've thunk it!
 
And Susie can keep her bronto legs too btw! tongue
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Fibromyalgia-'06~Sacroiliitis-epidural injections
To help Healingwell - click here: DONATE
 
 
 
 

 
 


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 3/18/2008 1:32 PM (GMT -6)   
Toothpaste!??! Wow. So, what kind was it that set off the rash?
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
 
Asacol 12 per day,  Azathioprine 75mg, Aciphex, Effexor XR, Forvia and a Probiotic
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 3/18/2008 1:40 PM (GMT -6)   
Crest Professional. I switched to an all natural paste and my rash started disappearing. I had that rash for 6 months and it was probably my toothpaste all the time!
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Fibromyalgia-'06~Sacroiliitis-epidural injections
To help Healingwell - click here: DONATE
 
 
 
 

 
 

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