I am Back !!!!

[jentilly]

I have been pretty good, my platelet count has been OK, actually going up a little all by itself (well, I am on 10mgs pred.), so I suppose that is the reason I haven't been visiting. I know it is a weak excuse but life takes different turns for us all.

Actually, I feel embarrased about posting when I am relatively OK and others are most definitely not...................for that I am sorry.

I have a question that I hope someone may be able to provide an answer to. On Monday of this week just gone, I experienced some nasty lower, then upper abdominal pain. The lower I put down to ovulation (am having doubts now though as it is lingering) but what really had me baffled and concerned was the upper abdo pain. It was under my right ribs. I do not have a gall bladder so it had nothing to do with that. X-Rays and Ultrasounds in hospital showed no abnormality. I was kept in overnight and discharged, relatively pain free, on Tuesday afternoon. I saw my Rheum (normal appointment) and she suggested that it might have been 'Intestinal Vasculitis'. She thought I had recovered pretty well but then I had IVI Hydrocortisone and that could be why.

Has anyone here ever had this condition as part of their Lupus? How do you deal with it.........I know I cannot prevent it as Lupus does what Lupus wants. Was it a one off 'attack' for you or has it become a regular thing?

Sorry for so many questions...............

Thanks so much for for reading.

I wish you all well. Even though I do not get here very often, I think about everyone.

Jenny.

[hurley]

Hi Jenny and welcome back ;)

I'm sorry that you were so ill to have spent a night in the hospital. We all know how distressing that experience can be. I'm glad that the pain had improved a bit by the time you were relesed.

I am not familiar with intestinal vasculitis but can only suggest that you and your doctors keep an eye on it. You're right about lupus doing whatever it darn well pleases. I hope that this turns out to be a one time occurence.

I am a bit confused about the pain under the upper right rib. Did the IV take care of this as well? My understanding of liver problems (which would be in that area) is that they do not cause pain. Just a thought, though - many years ago I had a duodenal ulcer that caused quite a bit of pain in that area. It cleared up with treatment.

I'm sure you will get more input from those more familiar with the intestinal concerns.

BTW, sweetie....nobody here plays the "my dog's sicker than your dog" game! :flowers: Don't minimize your health concerns. :)

Hugs

:love:

Julie

[smiley]

:D hi jenny can't help with the pain situation but glad ur back and believe me i know where your coming from... I am not half as sick as most on the forums... I try to pop in at times when I can to post a few.. but no matter what.. we do all have lupus in some form and have a right to be here... even if we did not have this nasty disease.. sometimes i feel terrible when I read others probs..and thank the Almighty that mine are not as bad.. but try to give comfort to those needing it.. so U see.. we have a use here also.. cos tis the ones who are not as ill helping to keep the ones who are ...bouyant and afloat....bless u smiley :D xx

[raggedyann1]

Jenny,

I am glad to see you posting and please don't feel guilty. When "regular" lupus patients like you post it gives many members here hope that they can feel better too.

A couple years ago I had upper abdominal pain that was so bad we went to ER. I also had lower pain at the same time. The ultrasounds and xrays didn't show anything so they pumped me up with anti-inflamms and pain meds and sent me home. The next morning the lower abdominal pain was gone and my GP dx'd the upper stuff as costochondritis. I had, had costo before but it was in a different part of my rib cage and hurt differently I thought. costo can radiate out several directions in our bodies but my GP said just push on your breast bone and if the pain is worse there then it is costo.

Anyways it was several months later when my lower abdominal pain was dx'd. It was endometriosis. It was so many months because other more serious and severe stuff happened in the middle and so I was just living with it when it happened.

Take care,
Karen

[flowergarden]

Jenny, Please don't apologize for coming here! I was in a therapy group where we decided that in the "big view", nobody's problem can be classified as worse than anybody else's. Everybody has their issues with their diseases. Maybe A's lupus is causing more physical problems, but B's family can't deal with her milder lupus, causing her more emotional pain. It's unfair to compare, as we don't know the whole story.

I like what Karen said, too. When people with milder disease come here it helps some of the rest of us to have hope. It also gives us a chance to share some of our experience (although I'm still not "official").

Please feel free to come as often as you like! :flowers:

[giblet]

Jenny

Know how you feel you log in when low but try on your own. I have had awful two weeks with glands etc. trying to work because have to pay mortgage and gastro problems something chronic at times. I had hyst because of endo give years ago ops for breast cancer and CT because of lumps but kidney in funny position, had to be different but in agony and just to finalise it throat been up, vomiting and now chronic ear problems so don't think that is part of it!

I look really attractive in the UK with chest lesions and now deaf so think heat and something must have something to do with it! Had ears syringed today and the ear causing the problem isn't blocked so that's where glands up, nurse says got to see GP and said can't mortgage to pay got to get back to work so interested to hear any ideas there about ears, never heard that one!

I look so fit and chuffed about that, won't let it beat me and won't go to GP's on Thursday so positive thinking but no doubt tell you girls something different on Friday if still low after couple of months away from site. He wants me to go on anti depressants to help me cope, saw it on nurses computer today again, and said about my lesions and also talked to me again about depressants but it is to coe with chronic pain thinks I needs help and I said no, don't believe in them so any answers on ears and depressants welcomed.

Sleep tight and God bless.

Giblet

[Anisah]

Hi Jenny,

I'm glad that you have been well and sorry to hear that you've had some recent problems.

I have had a lot of problems with vasculitis in my GI tract, including multiple ulcers and something called angiodysplasia which is when blood vessels burst and bleed in the intestines. I've required many blood transfusions. I honestly don't know what number I'm at now but I think it is close to 70 units of RBCs in about two years.

My experience didn't start like your's however, it involved painful diarrhea with bleeding. Usually vasculitis needs to be dx through biopsy or evidence of some sort. I imagine you might have to get some more testing done? When it effects the gut there is often blood loss from bleeding somewhere so please keep an eye on your hemoglobin.

I hope it doesn't turn out to be vasculitis. My experience has not been easy - the GI tests alone are not fun! :afraid: :sigh:

Vasculitis like this is not easy to prove or dx, nor is it easy to treat and it is potentially very serious. Hopefully whatever it was that caused you so much pain will pass with the treatment you are getting, or it turns out to be something other than vasculitis. It is sometimes called messenteric vasculitis (Dr. Wallace calls it this).

take care,
Anisah
:flowers: