lupus with an ileostomy and supra pubic catheter

[raelene]

hi just wondered if any of you have lupus and have an ileostomy or supra pubic catheter. i have lupus and both of these and i am eager to speak to anyone the same as me

[Hidden]

Hi raelene, I am 65 and have SLE and APS, and have had a supra pubic catheter for 4years. It was put in to stop the constant infections I was getting, but I still have constant infections! My bladder problems started about 20 yrs ago when I couldn't empty it properly, always leaving approx 50ml of urine in my bladder, which then got infected. I then went on to self catheterisation, but couldn't manage it at night, so was spending half the night in the bathroom and was exhausted!. I then went on to a urethral catheter with a locking mechanism on, I liked this because I joined it to my night bag and didn't have to get out of bed all night. However I still had constant infections and was admitted to hospital

twice. It was then suggested I have a supra pubic catheter, or have a urostomy which I didnt fancy. My bladder is now classed as Atonic and won't empty at all on its own. My bowel is beginning to play up, I have had an obstruction and resurgence of diverticular disease, of which I had my descending colon removed in 1996 I then got a fistula between my bowel and bladder and the surgeon said I would be looking at a colostomy, fortunately it healed itself so I am very relieved. My s/p catheter is always leaking out of the hole in my abdomen and I have to wear tena pads across the front to catch the drips, not very convenient! I am sorry to rant on so much,but its nice to let it all out. You seem much more unfortunate than me, I would love to hear how you cope. best wishes

[raelene in reply to Hidden]

Hi teapot65 Thank you for replying to me, i was beginning to think iwas the only one with lupus and an ileostomy and supra pubic catheter, have you ever been told your problems have ever been linked with your lupus because the doctors will never answer that question when i ask them. i will tell you a brief history about myself. i was diagnosed with lupus in 2003 and put on prednisolone and have been on them ever since i then was told i have fibromyalgia and ME. i was admitted to hospital with problems with my heart and had to have catheter ablation for arrythmia, meanwhile started to get problems with my bowels at the same time about 10years ago with severe incontinence, i suffered for many years with this and constipation until about 3 years ago they gave me tests and said i had slow transit througout all of my colon basically my colon decided it didnt want to work anymore so they gave me an ileostomy since then i have had lots of surgeries on this for blockages and strangulations and hernias and am waiting for more surgerynow. My bladder started playing up the same time as my bowel i was having loads of infections and was in hospital then i had several dilations on my urethra but didnt work by this time i was self catheterising because was retaining urine in my bladder but still having loads of infections so they then decided to put in a supra pubic catheter but im still having problems so im seeing the urologist tomorow. also i have pancreatitis so i am deficient of enzymes and have to take them with every meal again i dont drink so that didnt cause the pancreatitis but when i asked them if it was because of the lupus they said they didnt know. The only thing my incontinence nurse has said is that i have what they call a neurogenic bladder and bowel. Anyway i apologise for blabbing on so much iwas just so relieved to hear from someone else having these kind of problems too. Hope to hear from you again. Best wishes

[Hidden]

Hello Raelene, it would be nice to keep in touch, as its comforting to hear about the same problems, and the fact that its not just affecting me. I went to the opticians yesterday, and by the time they had finished putting drops in my eyes and all the

concentration needed, I was exhausted today, and had to sleep to get over it

I am diabetic due to steroids, and this does appear to affect my sight making it very blurred at times,although they seem to be ok at present thank goodness. I also have cataracts, one has been done, and I am waiting for my other eye to be done. but I have to say my eyesight is not brilliant!

The only thing the Drs have admitted to me is that I have lupus related connective tissue disease in my lungs which keeps on giving me pneumonia, and I have low oxygen saturations, needing oxygen at home.

I think you have been through so much surgery, I am surprised you still feel cheerful enough to talk about it.

I started to have rashes especially in the sun when I was 18yrs old, ( I had just started to take the pill, so I blame that)

I was always tired and had achey joints, but these were growing pains according to my Dr.After my two sons were born, I had a cyst removed from my ovary, I couldn't seem to recover from that, I was a complete wreck.

As time went on I had a hysterectomy , both ovaries removed and a cyst on my bowel removed

Then in 1996 I had an abcess in my decending colon and it obstructed so I had a second operation in 10 days.

I was a nurse, but couldn't go back to work as I was too weak. Everything up until then was put down to age or stress

untill 2000 when I could hardly walk, I had some bloods taken and was told it was sle and aps, sicca syndrome and ,angina, .Things have gone steadily downhill since then with constant steroids, but I have just started Rituximab, and it does seem to make me feel a bit better, so I am optimistic.

I seem to recall that having an ileostomy makes you more prone to pancreatitis, due to the enzyme deficiency.

you could try looking it up on google. I feel very sympathetic towards you as you have suffered enough, I hope you get enough support from your family. I look forward to hearing from you again, good luck