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BigLucy
Regular Member


Date Joined Mar 2007
Total Posts : 413
   Posted 4/29/2008 9:31 PM (GMT -7)   
I have ulcerative colitis, IBS, GERD, CP, Chronic fatigue/headaches--all, I believe interrelated. Also, often will have muslce/joint pain. O.k., the reason I mainly stick to the CP forum is b/c my biggest challenge is my CP and when I cruz the UC or IBS forums, CP is discussed but people seem not to be bothered by pain to the levels I am--I'm starting to wonder if I'm alone here w/these sx's in IBD(s) land. I saw a post on the IBS site recently about what people do for pain, 15 people replied hot water bottles, messages, baths, stuff like that, for me, that would be an adjunct to the pain meds I'm on. I've been DX w/UC for 10+ years, the first 6 I didn't require pain meds but seems to be getting worse/chronic--CP--as time passes. It's been little over one month since I returned to work FT and this week I'm having a tough time, very fatigued, maybe it's got me thinking/worried. After all these years still wondering what's wrong w/me, even though I know what's wrong w/me b/c I've been DX, but still can't believe I can feel this bad all the time. Know what I mean?

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 4/29/2008 10:01 PM (GMT -7)   
Hi, Lucy,
I'm not sure I can be of a lot of help. I don't have IBS, etc. so I don't know how much actual pain that causes. I've know people with IBS and they certainly get quite uncomfortable with periodic pain from cramping and such. You mention muscle/joint pain, plus chronic fatique. Could your pain have other causes - possibly fibro? Or even arthritis issues, spine, etc.?

I can relate to fatigue, as that's one of the major obstacles I feel in my way of possibly getting employment (although my age isn't going to help either!). For me the fatigue is either from the pain or meds. Could an adjustment be needed in your meds to make FT work eaiser? I know I've got to take a look at a longer acting med to see if maybe that eases some of the fatique and mental fogginess, but I've got to get a PM doc to prescribe it!

These are just some thoughts....

PaLady

BigLucy
Regular Member


Date Joined Mar 2007
Total Posts : 413
   Posted 4/29/2008 10:54 PM (GMT -7)   
Thanks for the post PAlady. The current epistemological belief of IBD diseases is that it's autoimmune, which makes sense to me and I've noticed a lot of us have co-occuring illnesses, such as fibro (as you mentioned). I've brought up my sx's to my GP and GI, but both don't seem to concerned or want to run additional test, they give me the impression that it's all interrelated. It took almost two years to DX my UC--looooooong story, many doctors visits and mis-DX's, so needless to say, I tend to have "PTSD" when it comes to any SX's I'm experiencing. I also have a HMO and I've discovered over the years that the last thing doctor's want to do is run another test or send you to another specialist--they get bonuses at the end of the year for how many things they don't do. I have a very good GP and he's managing my pain very well, so I'm satisfied on that end--I'm a researcher by nature and trade so I've looked up SX's for fibro, have a lot of the sx's but not enough to give me concern. The chronic fatigue I absolutely have and not much more I can do for that. I think I have one of those invisible diseases, not many people know what it is, so hard to get recognition from people. I have this co-worker who knew about my years of struggle w/UC. Two years ago she started to get colitis-like sx's/pain and a GI actually told her it was most likely she was developing UC, but later they discovered she had colon cancer---after her surgery and return to work (in remission now) she came up to me and had a nice talk about my struggles; she said she was told that the pain she was experiencing was similar to UC and she couldn't believe I have to suffer from it chronically with no cure in sight--it was a depressing talk but nice at the same time, does that make sense?

Freya
Regular Member


Date Joined Apr 2008
Total Posts : 164
   Posted 4/29/2008 11:13 PM (GMT -7)   
Lucy- Just wanted to let you know that your not alone, although I dont share any of the same conditions.
When I read the posts on an endometriosis forum there is little talk of chronic pain in the way I experience it and sugestions are very similiar, Hot baths, heating pads..etc. That is why I decided in joining HW.
Sometimes it has left me feeling either completely alone or just plain crazy.
I try to remember that pain is dififferent for everyone and that the things that work for them wont work for everyone.
I hope your able to find what has been making you so tired so that you can feel better at work. I wish I had some suggestions in what could help.
But I just wanted to say Hang in there, UC and IBS can be extreamly painful. My father had UC many many yaers ago(I'm not even sure they knew what it was back then) and could not function at all with the pain leaving him no other choice but to have the surgery. Your completely validated in how you feel about your pain.
Many hugs
Freya

shannon1
Regular Member


Date Joined Feb 2005
Total Posts : 369
   Posted 4/30/2008 5:35 AM (GMT -7)   
hi biglucy! I have UC and DO indeed have severe pain related to my uc. Tho, for me it is not constiant, it can come and go, and usually happens w/ my flares. I have been known to pass out from the pain when trying to go to the bathroom and fall right off the toilet! lol

I also have alot of other illnesses/symptoms and i feel that they are all connected to. You should see a rhumatologist asap. They would be better versed in all the autoimmune stuff.

If you KNOW that something is going on, then i assure you, something IS going on. We know our bodies better than anyone. I searched for years and over 50 doctors before being dx w/ my immune deficiency. I also have two blood clotting disorders, severe arthritis, fatigue, rashes, sensitivity to sunlight (all leading my doctor to believe lupus) but we have been unable to prove it....

anyways, cp is something that others who don['t deal w/ can NOT understand. i hope u find your answers! ps, my gi does not feel that i should have the level of pain that i complain of either...

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 4/30/2008 3:52 PM (GMT -7)   
Lucy,
You always make sense to me! Shannon seems to have some good points. Is it your insurance that keeps you from going to other specialists - and by that I mean your doctors' unwillingness to refer you? I thought that stuff was no longer acceptable - the bonuses at the end of the year thing, although I suppose there are loopsholes people have found to get around it. That's pathetic and leaves any of us with chronic illnesses out in the cold. But it seems like you may need more exploration in the autoinmmune area.

One thing I also thought of - when you returned to work you weren't sure how your body would take FT. Could that be part of it? Are you symptoms increasing since you returned to FT as compared to PT? Perhaps your body will tell you when enough is enough. And I can't imagine your job is low stress! LOL

Keep in touch...
PaLady

BigLucy
Regular Member


Date Joined Mar 2007
Total Posts : 413
   Posted 4/30/2008 6:53 PM (GMT -7)   
Thanks for the replies.  Yeah, FT work has been really hard this week, VERY fatigued, feel like I'm living under water, slow moving, etc.  I did get the flu last weekend, which always increases my UC sx's so that's another issue--hey, have had the flu seven times in the past year and a half, it's been loads of fun.  Had to take three days off this past week, so not feeling good about that.  I'm sure if I asked my GP would send me to a Rhumy MD, but, at this time, just don't want any more tests or DX--I may feel different next week--I just threw that bit about the HMO b/c, although the bonus thing is true, I get very weary about why or why not is the MD not exploring my additional sx's further; 10 years ago, I was initially told that the blood that was streaming from my anus for six months was just hemorrhoids (had never heard of UC before and so didn't want it to be cancer, so I went with what the MD said until I couldn't ignore it any longer).


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 4/30/2008 9:12 PM (GMT -7)   
Ahhhh, being weary. That word describes a lot, doesn't it? I completely understand not wanting one more dx., to see one more doc. Sometimes it would even be in our own best interest, but the energy it takes to even think about what you want to ask someone new, what questions you even want to ask your current doc, to push for a referral, etc....weariness of it all!

And our immune systems are under such stress it's no wonder we get sick more often, but your having had the flu so many times really does speak volumes. So for now sounds like you just need to give yourself lots of TLC.

Snuggle up with Big Lucy!

PaLady

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 5/1/2008 2:24 PM (GMT -7)   
Hi Lucy,
I can relate to some of your medical issues. I have crohns and have had one resection, then in June of 05 I was dx'd with UC. Fun, huh. Last year a rheumy dx'd Lupus. I told my gi I just didn't think my body likes itself, it stays in a constant battle.
 
Are you on any medication for your UC? My gi immediately put me on Lialda and I have been on it ever since I got dx'd. For the cD I am on 100mg of Imuran, Entocort. I just recently went back on Remicade for an abdominal fistula.
 
Are you not being followed up by a gi dr? I am sure you know your UC can cause joint pain, fatigue and many other problems, just like the crohns can. I know you don't want to see another dr, but Shannon is right, you really need to consult with a rheumy/ just do it and get it over with,lol. Lots of hugs coming your way. Susie  


BigLucy
Regular Member


Date Joined Mar 2007
Total Posts : 413
   Posted 5/1/2008 6:40 PM (GMT -7)   
Straydog--do have a GI, seen her for 10 years now.  I'm on asacol #3X3/day, rowasa, prilosec, rx'd bentyl (but makes me dizzy, so don't take it that much), proctofoam (when bleeding increases), and prednisone (off/on).  Had a major flare 11/06 and was hospitalized for two weeks, just haven't got back to pre-hosp. baseline.  For the first six years of UC DX was very managable, but things have been progressively worse and now just seem to be a constant pain in the rear--figuratively and literarlly. Thanks for the UC empathy, BTW are you on any pain meds? what's your pain like?  Thanks.
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