Meet & talk to fellow OstoMates Support | Friendship | Relationships


Tue Jan 26, 2010 3:55 pm
This is a great community. Consider joining.
The lyrica does make me very tired.  I had no idea that sweating was part of the fibro. Thanks for that information.
These are the top 5 issues ostomates face:

1. Dating and relationships
2. Concealing the pouch
3. Foods to eat and avoid
4. Losing or gaining weight
5. Pouch ballooning

Check out this video from MeetAnOstoMate.
Tue Jan 26, 2010 6:05 pm
Txgirl wrote:
i wonder if it isn't a side effect of meds Rachel?
I would call ur doc and ask, maybe.
Sometimes it can take a while to develope side effects, even after being on a medication for years.

Hi Hannah - apparently it is gastric reflux, more medication to take! I think this hernia needs doing sooner rather than later .......
Tue Jan 26, 2010 6:41 pm
Greetings Fellow Ostimates, seeing as most of this forum appears to be dealing with other than ostomys I thought I might jump in, especially after hearing some of the remarks concerning Fibro/Chronic Fatigue symptoms. For the past four days I've been getting this foul tasting (almost like copper) though I've never tasted copper but I'm sure some of you will understand, also for the last six months I've woke at night just covered with sweat and the sheets so wet they had to be changed. I thought I was coming down with pneumonia but the doc said it was from my spinal problems getting inflamed and taking a deep breath made it feel like that, man what a boost that was, so now we finally get to my new hernia. another boost, more like a kick in the ass. By this time I forgot what the hell I was going ask him about my stoma, oh well I have another appointment in four weeks and there will be something new to try to get a grasp on. Thanks to these forums I have learned more than I ever have from any medical entity. I guess I've babbled on enough for now, thanks for your patience. Ed
PS: has anyone ever heard of a hernia repairing itself, sans doctors?
Wed Jan 27, 2010 3:24 am
For the past four days I've been getting this foul tasting (almost like copper) though I've never tasted copper but I'm sure some of you will understand, also for the last six months I've woke at night just covered with sweat and the sheets so wet they had to be changed.

Hi Ed - thats just what mine tasted like to begin with - it is now tasting fetid and rotten - the doc said it could be one of three things .... teeth, sinuses or gastric reflux - and he has opted for the latter because of my recent history of indigestion, nausesa etc - reckon it's all hernia related, sorry about that!

As for the sweats - thats a symptom of the fibro too..... as is IBS which is probably what I have and I didn't have a bowel problem at all until this nonsense started!

Take care, Rachel xxxx
Sat Jan 30, 2010 3:51 pm
I am a certified wound, ostomy, continence nurse as well as a hospice nurse.  I have a pt who is suffering from severe fibromyalgia.  We have recently started pt on new fibromyalgia medicine called Savella.  It starts out as a titration package of 30 days and then the dose can be adjusted upward to 100mg twice a day.  It has done wonders for this pt where nothing else has been able to help.  After finishing titration pkg pt is now taking 75mg twice a day.  I don't know if pt will continue to get relief from this medication but currently it has added a tremendous amount of quality back to every day life.  The only side effect reported by this pt has been increased sleepiness for 1-3 days each time dosage increased.  Pts must be very careful and monitored closely for severe adverse reactions when taken with some antidepressants.

I appreciate the response who took time to list symptoms.  I was surprised to see how many similar symptoms are in common with my pt.  The most notable are the sleep disorder and anxiety/panic attacks, extremely dry skin.

The pt also takes 300mg lyrica, 50 mcg fentanyl, Norco 5/325 prn, citalopram 20mg, ativan 0.5mg prn and trazodone 50mg.  

pt previously had been on fentanyl 300mcg, oxycodone 6 x a day, amytriptlyline 100mg, celexa 20mg.

My thoughts and prayers are with you all.  I hope this info can help another.

Sun Jan 31, 2010 7:04 pm
Rachel, i think you're right. Are you going to get it done soon?
Mon Feb 01, 2010 3:23 am
Txgirl wrote:
Rachel, i think you're right. Are you going to get it done soon?

Who knows - not heard a thing from the London hospital as yet and have deferred Oxford for 6 months to allow for that - so suspect will only get it done if an emergency, but don't need that either! Arrrrrrrgh...............
Rachel xxxxxxxxxxxxxx
Wed Jul 14, 2010 9:53 pm
Was looking for cymbalta and ileostomy and there you were from last year. Rheumatologist (sp?)thinks Fibromyalgia,hip bursitis, psoratic arthritis?? Took lots of blood and x-rays go back in 2 weeks--said take cymbalta? Well after recent things in news about cymbalta?? I have not tried yet? Did it help you? Are your hips still hurting? Is your ostomy from ulcerative colitis? Just wondering if all this stuff is tied together having had UC for like 17 years befor ostomy and all the medications taken back in late60-70s causing joint ect pain now? Or old age? Anyway just wonder if cymbalta helped? The cortisone injection in hip did help for now? Any thoughts? Thanks
Past Member
Thu Jun 23, 2011 3:11 pm
I see this is from awhile back but is a part of my life at this time - so it may also be an issue for others.  

During the past 35 years, I have been diagnoised with arthritis, Lupus, MS, and all the things you mention in your various posts - plus Durcums (adoposis doloroso).  I don't really care what it is called.  But I sure would like some relief.

I haven't found any solutions.  I am withdrawing from everything and anything - except thyroid (mine was removed when I was 17- Hashimotos).  The Cymbalt withdrawal isn't fun.  I was never addicted to the narcotics but won't take those either.  Lyrica made me violently ill.  

Pain is bad - very bad.  Ostomy has been a non-issue for me (Aug 2010) so far -  well pretty minor comparatively.  So many things you shared were important to me.  One thing especially stayed with me .... "you don't look sick".  I am glad I don't appear to be ill but I am almost completely house bound / bed bound.  Almost all activities triggers an acceleration of pain.  I feel a bit guilty for looking well and I wonder if 'they' think I must be faking it.

Once again, it helps to know I am not alone.  I didn't find any answers.  I hope some of us share if we do discover anything that helps.  Having all that ... PLUS - seems like overkill.
Past Member
Fri Jun 24, 2011 12:52 pm
"Thoughts" - you all know I think too much.

Wouldn't it be strange to discover that fibromyalgia was both caused (or triggered), and treated by the same substances.  

This is just a personel opinion / question.  I have no data or research to back up my thoughts.  

For ME... I am beginning to think that my multiple-year treatment has kept me 'down', and out.  I was on Cymbalta about a year before I had to go on disability and leave the job and home (and people) that was my joy in life.
Wed Nov 09, 2016 2:55 am

yes fibromyalgia is one of the things I have , my son 36 ad hubby also have it ,  plus the colostomy...... for me ,

Mon Nov 21, 2016 2:32 pm

Thanks for continuing on this post about Fibromyalgia. I have also had it for a very long time and was diagnosed FINALLY in 2010.  I am 61 years old and had planned to work until 65.  There is no way that I can make it that long. I have tried all of those medications and have been with a great pain management doctor since 2011.  He monitors everything very closely.  I have tried Lyrica, Cymbalta and Suvella and could not take any of those medications.  Gabapentin is helping and pain medication.  I tried to get off of everything a few years ago and did it for over six months.  It seemed like the flare ups became vicious.  I had to go back on the pain meds.  I wish more doctors and nurses (thanks for your post above dadobi) believed that Fibromyalgia is really a disease.  It is very frustrating going to a doctor who thinks I am crazy.

With regard to my colostomy, I had mine in September of 2013.  I was so very fortunate to have it reversed in January of 2014, but I am still a follower on this website because if I can help someone, I want to be here for them, even if it is just one person.  Thank you all for always being so honest and sharing your stories.  You are all incredible.



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