bladder /bowel problems

[dorisdaydream]

hi anyone out there with pbc , systemic sclerosis, sjogrens or raynauds have bladder/ bowel problems ?

[TaraBella]

I have Sjogren's which gives me autonomic neuropathy. This causes urinary hesitancy and retention, and slow bowel motility. It also gives me postural hypotention and tachycardia. I saw many specialists before finally finding a Sjogren's specialist who was able to put it all together and start treating me. I tested positive for anti-neuronal antibodies. My symptoms improve with prednisone and immunosuppresants and IVIg. A urologist gave me Bethanechol which greatly helps the urinary hesitancy.

Good luck in finding a specialist who understands this.

[paulineemily]

I have all 4 conditions and do have bladder and bowel problems, after many hospital visits I am no further forward. Your post has given me some hope and intend to talk to the specialist again at my next appointment.

[Hidden]

I only have PBC that I know of dorisdaydream but I have noticed since starting on urso Dec 2010 that I tend to find myself 'weeing' a lot more than I used to do. Usually during the night.

I know that my urine is what would be classed as normal in sight, early morning a bit darker due to not having anything to drink for about 10 hours but then it becomes rather clear during the waking hours.

I can't help wondering it due to the urso. I have noticed in the past on this site, other posters have also mentioned this especially during the night.

Now I itch at night so I think maybe also it might but be habit of getting up and going to the loo simp,y because I know that when I get out of bed I suddenly feel relief from the itch temporarily until 5 mins after I get back in bed.

[liver-bird in reply to Hidden]

I also find if I am awake in night I pee more. I find the cooler I am the less I itch and consequently the better I sleep. You say when u get up the itch subsides for a while, perhaps because leaving a warm bed cools you?? Just a thought - hope it helps.

[Hidden in reply to liver-bird]

Hello liver-bird.

Sorry but I had a giggle at your mention of 'leaving a warm bed'. I say this because I've lived in a house with no central heating for over 30yrs and was raised in a house likewise. I find it doesn't seem to make very much difference.

My husband I treat like a leper during the night, I cannot do with the body heat. Everything is normal around 5a.m!

I tend to find that even later in the day the more I am on the move the less I feel any prickles starting up. It is when I am sat down that I start to feel prickly.

It's said with the itch that it is more prevalent when one is either laying down or still.

Thanks for your input, you never know between us all we might one day crack this itch business.

[Bogeeman]

YES!!! My life the past ten yrs is trying to function a normal high stress working life - while dealing with embarrassing and always untimely bowel events- my Dr. Is zero help-

[Hidden in reply to Bogeeman]

Well I am lucky there I suppose. Not much change in the other - bowel habits - since PBC diagnosis. I have found with the urso though that for me it did cause constipation but I can easily deal with that myself. I tend to eat more fibrous foods than I did pre-PBC diagnosis.

Diarrhoea is one thing that taking urso in some can cause.

[liver-bird]

I also get diarrhoea most days - it is my most troubling symptom of pbc. Have tried reducing fruit and fats in my diet which may help a little. Imodium stops it immediately but I am not sure I should be taking this in case my body is ridding itself of harmful acids so I only take Imodium if I am going out somewhere far from a toilet. Any pearls of wisdom re this WD be v welcome.

[Hidden in reply to liver-bird]

When my son suffered diarrhoea badly back in 2009 and ended up having the camera to check out his bowel, he was informed not to stop eating certain foods. Fruit was actually one funnily enough. (His was thought to be a temporary gluten-allergy, wheat was said due to over-use of antibiotics (for a patch of psoriasis). Thankfully over time and a re-indtroduction to wheat products but not an over-usage he is back to normal.)

When I was growing up my mother used to get out some cornflour and milk and make a white sauce to eat if anyone in my family had diarrhoea. Don't know if it helped as I can't remember now or if it was one of the "Old Wives' Tales".

[lonnie1 in reply to liver-bird]

Hi Liver - bird, I get diarrhea too. Apart from trying avoid fat intake. My acupuncturist said my spleen is very week. So he did some needles on me to strengthen my spleen. My diarrhea stopped at the second day. Hope you are able to look into Chinese acupuncture option to help you. Also my bubbles in urain has gone too.

[butterflyEi]

Is there a specialist continence nurse in your area that you could get a referral to see? In the depths of my mind somewhere I seem to remember bladder/bowel continence nurses can be very knowledgeable about managing problems. I do hope this helps.

[judyt]

I have Scleroderma,Sjogren's, PBC and Achalasia and I am hopelessly incontinent. Have had an SNS for the past 3 years and it makes not a bit of difference. Yes my Nurse Specialist friends at the hospital are very helpful but in the end. I don't have diarrhoea and I do take a bowel bulking preparation (OTC everybody knows them) and that helps enormously with consistency. I am about to ask again for an Ileostomy because I am at the stage that I can't go for a walk for more than 200 or so yards or go round the supermarket. My husband has to do all shopping trips unless we take my powered scooter and that is a bit of a hassle. Sometimes we take it and certainly if we want to go out with friends for a walk in a park or visit a garden I have to have it.

[liver-bird]

Thank you all for your helpful suggestions. I will try cutting gluten from my diet and if that doesn't work, I'll look for an acupuncturist. Its good to get some suggestions of things to try as my GP just dismissed it as part of my pbc condition. Thanks again.

[kandiepat]

Hi TaraBella, I have pbc and sjogrens, I cant take the Urso because it really screws up

my bowel. I was bad before but the urso just topped it and so I came off the urso and changed my diet completely, drastically. Four days Im perfect and 3 days Im

constipated. I havent an appointment until next month so I will have to live with it

till then. Im thinking Irritable bowel, blockage, all sorts of scenarios! I dont know if this helps. Pat