Itch same or worse after stent - Why?!

[InfoForMum]

Posting for my Mum with very immediate question. Biliary stent op yesterday 6 pm. Very harsh jaundice before with un-sleepable-with itch for last week. Bilirubin levels had doubled in week prior to that. Last count was over 300 (don't know how bad that is!?) Consultant said Op was a success. Pee looked lighter by morning. According to Mum, consultant was disappointed itch hadn't improved at all by morning. Didn't improve thru day and got a call at 8pm saying she'd woken up "burning" with itch. Reportedly worse than before.

Twigged she didn't have a thermometer (I know - crazy, but until 5 weeks ago she was fit as a horse and had never had need of one!). Shot round with our digital ear one and temp fine, but she's desperate for sleep after 8 days of no more than 3-4 unsettled hours.

Should this be improving by now? And if yes should I be calling her consultant? Regardless of all that what can help? Sleeping tablets? Pain Killers? Anithistamine (tried but didn't work last week). As a mum of 2 I know fatigue is debilitating, any advice appreciated.

Sarah

Edited December 20, 2013 by InfoForMum

[nikkis]

Hi Sarah,

I seem to remember that it took a few weeks for my husband's terrible itch to calm down after he had a stent fitted. His consultant had said that would be the case and that nothing would really help, and he was right, it just took time. You could try some calamine lotion (the stuff you use on children with chicken pox) to feel you are doing something, and if they have prescribed sleeping tablets they might be worth a try. Good sign that her wee it clearer,

Nikki

[InfoForMum]

Thank you for that Nikki. I couldn't find any source of information on the wider net about progress with resolving probs after stent. So it's sleeping tablets to be got from the docs tomorrow and hunkering down til this resolves. Unless my mum misinterpreted, adds up to a shocking lack of people skills on consultants part in terms of mismanagement of her expectations.

[karen17]

Hi Sarah,

My husband is currently in hospital waiting a stent and I think the worse thing for him has been the itching. He has now been prescribed Questran which comes in sachet form to add to water or juice. Supposed to be good. I think the symptoms may take time to resolve anyway but yes great news that pee is back to normal colour.

Hope that helps

Karen

[PCUK Nurse Dianne]

Hi Sarah,

Yes as the other ladies have highlighted, the itching will take some time to resolve. The itch is due to the high bilirubin levels, (greater than 200 is quite high), and even with the stent inserted it will take some time to resolve. As the other ladies have mentioned, Questran sachets can be good, Piriton also, especially if taken before your mum goes to bed, calomine lotion. Has she tried taking paracetamol before she goes to bed also? By increasing her fluid intake will also help to flush the system a little quicker. If she has temperatures or is feeling shivery at all, this is an important symptom to contact the doctor about, just to exclude any infection. Sometimes you will find with the build up of bile in the duct when there is an obstruction that this 'sludge' predisposes you to infection (called cholangitis), and can make you feel very unwell. Also signs of a high temperature are not always feeling hot, if you mum is feeling very cold and shivery this is often represents a high temperature and would need review. I am sure you will find that over the next few days she will start to improve, and it may just be post stent effect with the 'stirring up' of all that sludge that was sitting in the bile duct. I hope that all makes sense in lay terms. By all means feel free to be in contact if this is not improving and you need some guidance on how to manage, especially over the long weekend.

Regards,

Dianne

Support Team

[InfoForMum]

Karen, Dianne,

Many thanks for responses. I had wondered about that "post stent effect", but had joked about poo turning bright green instead of white thanks to bile flood gates opening. The potential for sludge to enter system and make worse instead of better makes sense. Hope that doesn't effect flow through the stent.

I honestly think 3 things were at issue here that we will guard against in future. 1) Mum withstands illness very very well and very stoically think the effects of the jaundice had been underestimated as a result. 2) Mum was almost elated to have had something done that would make her feel better and the resulting down has been quite bad. 3) We weren't given any guidance about aftercare or the fact that initial effects might be slow (quite the opposite). I've been complicit in building her hopes up so I feel dreadful.

The steer about Questran is fab. We'll persue. Perhaps with help sleeping and some calomine she'll cope. Sorting out a SPA day for both of us next Friday Hopefully itching will be a bit better by then and they can make her poor dry skin feel a bit better. Massage should also boost the circulation, so all round feels like a good plan.

Thanks again guys.

Sarah

[InfoForMum]

BTW Karen, I really hope his stent op goes well. I suspect Mum has been unlucky here (just in terms of being told things would resolve really fast. I suspect she's no worse off than most)and does sound like you're geared up to be patient. I wish you both well and have your private address now so I'll drop you a line offline.

Take care

Sarah

[InfoForMum]

One last post on this today as my sis recommended an alternative to calomine she said soothed her little boys chicken pox itching much better. Thought it might help someone else if they find the thread:

Poxclin. Sounds medical, but isn't. Can be found on the kids medicine shelf at Boots. Non-aerosol foam that cools and soothes. Meant for kids, but who cares.

Also, Spa day booked - Total relaxation full body and scalp massage + deluxe manicure for next friday - hopefully she'll be able to stay still for that long with the itch!

Pursuing Questran as another option (thanks for the steer folk) and some Nytol. She sounded exhausted when I phoned her so hopefully she'll sleep after some of this.

Sarah

[InfoForMum]

Great news. A good nights sleep had! She went for some holistic self-diagnosis and worked out what it felt like and decided it felt like acid on her skin, so she put some bicarb in some water and put it on when the itch got bad, then with Nytol she slept.

She can't claim any science behind it, but she woke up at around 9am feeling rested.

Thank you all for sympathy and advice.

Sarah

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[kwaitang]

Hi. My husbands billiruben count was 430 when he had the staent fitted. After that it climbed to 660 and he was driven absolutely crazy with the itching. He was given anti histamines and cream to rub in and neither helped unfortunately. Anyway after 12 days in hospital they let him home when his count had come down to 230. The doctor said that the stent that had been fitted was not long enough but now that it had started working he would leave it all the time the count was coming down and would only redo it if the count stopped decreasing. Luckily over the next few weeks his count continued to drop and the last one was 25. We could do nothing to stop the itching. Cool baths seemed to ease it for a while but only a while.

[Cathy]

Hi Sarah

Glad to hear your Mum had a good nights sleep.

The spa sounds like a fabulous idea. Something for you both to look forward to. Jonathan (my partner who has advanced PC) goes for a regular massage and reflexology both of which he finds very therapeutic.

Hope your Mum has a good day today after her good sleep.

Cathy xx

[karen17]

Hmmm we will give the bicarbonate of soda a try sounds good. Ive just come up with the idea of giving him a rough flannel to rub his skin with instead of scratching. He looks like he's been in a cat fight! Wonder if you can buy adult scratch mits!!

Sarah the spa day sounds just fantastic and I'm sure your mum will really appreciate both the treatments and the chance to spend quality time with you. Just lovely in fact I think we should all come too!!

[InfoForMum]

Just to close off this thread I started I wanted to share the progress made now. Itching and jaundice took some while to resolve. Diane's welcome steer feels like it was probably right as a cause for slow initial progress ("sludge" needing to clear out post stent op and Mum being run down generally with liver, kidneys and digestive system all being under heavy pressure from the severity of the Jaundice). To put Mum's case in context, Bilirubin was 277 on 13th August, which probably increased to well over 300 before the stent op on the 20th (given historical rate of increase), before reducing to 207 by the 27th August (still, as Jeni said, quite high)

The good news is that now the itching is much better and her jaundiced colour is mostly resolved (we were told the digestive symptoms and itching are typically the last thing to resolve and more generally our experience is that symptoms resolved in reverse order of them occuring - digestive probs, pale stools/dark urine, painless jaundice, itching - which may or may not be typical).

We had a hickup when she developped a rash. Came off Creon as a precaution in case it was an allergy, which led to a return of chronic indigention and upset stomach and did nothing for the rash (itchy chicken-pox like spots on back arms and legs). It was a very low point as added to constant discomfort and sleepless nights caused by the jaundice related itch.

After 2 days and sage advice from moderators confirmed that a rash is not a known side effect of Creon, so restarted that and resolved the digestive symptoms within 2 days. Rash cause was still unknown, but is now starting to get better.

Today we had the breakthrough. The jaundice looked much better and the totally insufferable itching in extremitities has resolved and the progress made was confirmed by today's bloods which showed bilirubin at 88!!. We feel the accelerated progress over the last week and a half is probably down to her being generally stronger and the rest of her system having to work less hard.

So to round up with the things we found helped most with the itch - bicarb in v cold or iced water applied to extremities (being cautions not to leave in for long as mustn't risk hyperthermia - yes that's a possibility we're told). Higher prescription doses of antihystamine. Magicool spray (the only thing she could get on her back herself!), generally keeping cool. Questran was started, but stopped as seemed to worsen diahhroea (not the experience of many others), so can't personally speak about effect of that, but worth looking into. Sleeping tablets in combination with one or more of the above when the lack of sleep just got too much.

I hope that helps someone else at some point.

Sarah

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[Cathy]

Hi Sarah

Thank you for posting such detailed information which I'm sure will be of great help to others.

I see you have posted on another thread so will reply to that but pleased to hear your Mum's jaundice has improved so much

Cathy xx