Needing some validation

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?

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?

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...

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).

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