Seen the specialist....

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dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 11/18/2008 12:29 PM (GMT -7)   
Wow what a morning. Firstly I'm officially given the lupus diagnosis. Then, we went backwards and forwards on how to treat
that and my "active" crohns... Well it seems, that my only treatment for CD now is surgery. I have to have a C/T done and
a colonoscopy. This will show where and how bad. If it's bad enough, we will hopefully get away with a resection., but he told
me to keep an open mind, as I guess an ileostomy might be needed...

For the lupus he's trying low doses 20mg of pred and Tramadol for joint pain. I wait and see if that helps with the inflammation..
It's all a wait & see game!!

Plus I'm not too sure about tramadol, I've been taking vicodin for so many years, so I'm a bit leary about a new narcotic
Vicky

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

Positivity, while not a cure, is positively far better than negativity.
"Mental attitude can move mountains" A message from my son.


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 11/18/2008 1:02 PM (GMT -7)   
(((((((( Vicky ))))))))))

I'm so sorry you have multiple dx's . . .but so glad they have identified your issues. I hope the pred works magic for you Vicky. It really can.

Meanwhile . . . have they started you on plaquenil ? Not sure if they will use that, given that you have stomach issues. It can be hard on the stomach initially (causes queezieness). But it really helps to quiet things and can be taken indefinitely (with regular eye exams to monitor occasional side affects). But it takes several months to build in the system, so the pred is used as a fire extinguisher and the plaquenil to keep things quiet in the long term.

I'm sorry you'll be facing surgery. It sounds, though, like it might be better than what you are dealing with now. I'll be watching for your updates.

Some hot tea for you sis!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


gemini kiwi
Veteran Member


Date Joined Nov 2006
Total Posts : 1136
   Posted 11/18/2008 1:06 PM (GMT -7)   
hey Vicky,
See how you go on tramadol but for me I just could not take the stuff, in pill form and liquid, made me very unwell . My sister took it for back pain and worked great for her, but it did nothign for my pain and made me puke..
hugs,
tess.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 11/18/2008 1:07 PM (GMT -7)   
Oh dunny I am so sorry for your newest DX ((((((((HUGS))))))))) and equally as sorry about the chance of having surgery for your CD...keeping you in my thoughts that ALL will be well and you will conquore.

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


kam#7
Regular Member


Date Joined Jun 2008
Total Posts : 125
   Posted 11/18/2008 1:34 PM (GMT -7)   
So sorry to hear about your diagnosis :-(

For what it is worth, I have taken the combo of tramadol and tylenol...they seem to work well together.
35 year old female (newly married) - Diagnosed w/Crohn's 2002 - Surgery 2004

Currently taking: Pentasa, Entocort, Imuran, Zoloft, Seroquel & Ativan as needed


conorconan1
Regular Member


Date Joined Oct 2008
Total Posts : 245
   Posted 11/18/2008 2:17 PM (GMT -7)   
Hi Vicky, I am sorry to hear that you got such bad news today. But you seem reather strong and I think that you will get the answer you want. Have some faith, whilst you got this board, you'll never walk alone!

Vicky Tramadol are a slice of cake. Easy drug to use. They help me for about 3 months then lost their effect. The come down from them was massive, be careful fo that when using them. I have been switched to a much strnger pain killer called Remedeine, which work wonders for my pain. Like all drgs, it will be hard to come down from them.

Be safe.

Conor
DX November 2008 - after years of searching for an answer
 
Prednisolone 50mg -Omeprazole 40mg for acid reflux - Buscopan 10mg (a daily) Remedeine 30mg-Probiotic


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 11/18/2008 2:41 PM (GMT -7)   
Sorry for the new diagnosis and the possibility of surgery. I am with gachrons on this, I can't take the Tramadol either, it just makes me want to puke. But I know others on this board who have done really well on it. I guess its one of those things that works for some Crohnies and not for others. Will definetly keep you in my prayers.

Giant Hugs,
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.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/18/2008 4:32 PM (GMT -7)   
Hi Vicky lets hope it will just be resection . I"ll be keeping my fingers crossed. Is this your first operation for CD?

Hi Nanners that's one med I never took but there have been others that had problems with it .I think Sierra did when she had surgery but not a hundred per cent sure of that.

When is your scope scheduled Vicky?I hope if you do have surgery it will bring you a long remission.We will be here for you..Best of luck with your med combo. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 11/18/2008 4:35 PM (GMT -7)   
Hi everyone, thanks for all your responses... As far as the tramadol goes, I'm not liking it. I feel sicker than a dog at the moment.
So I guess it's back to Vicodin & soma for me, I know some of the effectiveness has worn off, but that's better than this nausea!!

Conor, you said I sound strong, thanks for that, but I'm sure when this all sinks in, I'm bound to fall to pieces. That's when I fall heavily
onto my friends here. I thank God for that...

Hello Tess again, I'm so glad you're back.

Rosie, I wish we could all sit down with a cup of tea...I bet pb4 and Gail would join in. LOL
Vicky

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

Positivity, while not a cure, is positively far better than negativity.
"Mental attitude can move mountains" A message from my son.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 11/18/2008 6:02 PM (GMT -7)   
You bet soon be time for chat. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 11/18/2008 8:51 PM (GMT -7)   
Gail to answer your question about this being my first operation for CD, no, it'll be my third. Guess you could say I'm an old
hand at this....
Vicky

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

Positivity, while not a cure, is positively far better than negativity.
"Mental attitude can move mountains" A message from my son.


Joie1
Regular Member


Date Joined Oct 2008
Total Posts : 376
   Posted 11/18/2008 11:34 PM (GMT -7)   
Hey...they put me on the tramadol too. It doesn't do much. It makes me throb still and ache...and that's all I can do about it. I have to call and talk to my doc too about that. Sorry that it doesn't work for you either. Still, the surgery stuff seems super scary but it isn't all that bad. After I had one, we didn't know I had Crohns at the time and I still went five years without pain or constant meds. Now, I know I get surgery and constant meds. It seems to help a whole bunch of people so you need to keep that in mind.
27/f/CD. 4 CD related surgeries: 2 resections, 2 JP drains, 3 NG tubes, many absesses (including the one my most recent surgery scraped off my ovary) and fistulas.
Currently trying to figure out hip and knee joint pain.
Have lost in these surgeries: appendix, 8 in. intestine, R fallopian tube, gallbladder, 10 in. intestine
Dx'd: February 2007.
Pentasa (and much mental screaming)


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 11/18/2008 11:48 PM (GMT -7)   
Did somebody say "tea"???? You bet I'd be there...I missed chat tonight darn it but I'll try and remember for nest week.

hang in there dunny, there's something to be said about us crohnies, we must be pretty tough to deal on a daily basis with what's been thrown at us.


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


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 11/19/2008 4:26 PM (GMT -7)   
Just wanted to say thanks again.

Last night was a tough one for me, I had so much pain, and a lot of tears were shed. Today I feel exhausted, but a little calmer
thank goodness.

I want you all to know that you helped, also Rosie on the lupus forum. She kinda walked me through a few things I didn't know about...
She was an enormous help to me, as I know she's helped many others. I hope like her signature she remains AlwaysRosie!!
Vicky

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

Positivity, while not a cure, is positively far better than negativity.
"Mental attitude can move mountains" A message from my son.


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 11/19/2008 5:36 PM (GMT -7)   
Vicky, I just wanted to say how sorry I am that you have jointed our little club of Crohnies with Lupus. It is especially hard to swallow given the way we most likely got it. If you have been taking Vicodin, it is not likely that the Tramadol will help. I have been taking Tramadol with Neurontin for over 4 years to control the burning and numbness of my neuropathy. It probably helps some with the joint pain but I really can't tell because I have been taking a steady dose for such a long time. I have Vicodin for my joint pain flares. Fortunately I don't have abdominal issues at this time.

It's okay to cry and be angry about this. It took me a while to absorb the implications of all of this.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 


broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 11/19/2008 6:33 PM (GMT -7)   
Gee Vicky I am soooo sorry to hear about the Lupus and yet another surgery. Sometimes life just hits you hard doesn't it. I'm having one of those weeks too. A steamin' cup of tea sounds so good right now. If you were closer we could sob on each other's shoulder for awhile. I'm trying to find my "fight" again and I know it's just under the surface, maybe it will return tomorrow. I've been on the Tramadol for several months now and it's the only thing that has helped me with the joint pain. Could you're nausea be coming from the Vicadin withdrawal/emotional upset? I had some Percocet and Morphine in the ER the other night over the cellulitis in my face and it didn't even touch my pain. I think I've built a tolerance for both those pain killers. Ask the Gastro if you can have Dilaudid (spelling?) for pain after surgery too....it works real good! You can't take both the Morphine and the Dilaudid within the same 4 hr. period though. I'll keep you in my prayers and let us know when the surgery is scheduled. What therapy do you think brought the Lupus on and how long have you been on/off it? Hang in there girl...we'll be here for you.
Dx'd Jan'06, 1st Resection 7/06, Humira, Imuran, B12 injections, Nexium, Lexapro, Nulev, Glucosamine, Multi-Vitamin, Calcium Citrate, Ultracet. Secondary conditions: Psorasis, Osteoarthritis, Fibromyalgia, Lactose Intolerant, gallstones, kidney stones & peri-menopausal.


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 11/19/2008 6:50 PM (GMT -7)   
(((Vicky)))

Texan with Crohn's
Regular Member


Date Joined Dec 2007
Total Posts : 362
   Posted 11/20/2008 5:20 AM (GMT -7)   
{{{Vicky}}}} I am sending you positive thoughts and wish you the best.

-Leslie
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