Hi
Was wondering if anyone on here suffers with IBS or symptoms relating to it .
I have ET and take hu . I've had IBS several years ago but seem to be suffering similar symptoms again for the past few weeks
Some tips or advice would be appreciated. Thankyou .
Hi Pippa, feel really sorry for you as over the years I to have suffered with IBS, also diverticulitis, and boy they are both awful. When the bouts of IBS flare up usually it is because I have got stressed out about something or other, I drink mint or ginger tea, and get mint capsuals and I do not go overboard with the fibre although many say you should increase, but for me makes it makes it worse, stick to very bland foods and fish, plenty of water no fizzy drinks, and most of all I do some mindfulness, you can get a book that has a cd called Mindfulness for dummies, this helps me chill out a bit more and really does help.
I have ET and take Hydroxy and have so far been really well on it, so do not think it could be that, maybe the Asprin is upsetting your tummy is it Enteric Coated as this helps, I had an ulcer many years ago and the pain is very similar.
Speak with your Doctor if you think it is IBS and maybe they can prescribe Merbevrine or Colofac, but also ask him if the Asprin could be upsetting your tummy.
Know it’s not that helpful, but feel your pain.
Jean
Thankyou Jean . I am on enteric aspirin and have seen my doctor who suggests more tests . I will try a bland diet and see if it helps .im seeing my heamotologist tomorrow so will mention it too .
Hope your well .
Hi Pippa
I have ET and have had IBS for years. I am only on Clopigadrel (spelling?!) as I reacted to aspirin so can’t say if the hu is the cause of your recent troubles. I agree with Jean and do almost exactly what she does when the IBS flares. I too cannot have a high fibre diet and take Normacol (soluble fibre) which keeps things fairly stable for most of the time and stick to easily digestible foods, avoiding too much fruit, especially the skin (sob, as I love fruit!) and sticking to root veggies plus other non cruciferae (broccoli, cabbage etc). It’s a pain of a diet but reduces the flares quite a bit. I’ve also heard the onion family can be a trigger. I find stress/fatigue can bring it on which is hard when MPNs seem to live side by side with both.
I hope you find something to calm things down and can get to the bottom of your recent flare.
Gill x
Thanks Gill ... I will look into normacol and see if it helps .
Hope your still keeping yours under control
Christmas, New Year and three family birthdays this month rather weakened my resolve and reminded me why I shouldn’t indulge! Now back on a slightly steadier path and feeling improvements. I’m my own worst enemy at times!
I get the Normacol on prescription. I do have a ‘slow’ digestive system so it helps with that in higher doses (4 sachets a day) and when things are normal I drop to 2 sachets a day. Good luck with it.
Gill x
Thanks for the info on normacol. I will ask my doctor
Oh yes know what you mean about onions, love them but my tum does not 🤪
I’d never thought about onions until my sister in law was diagnosed with IBS and the dietitian gave her a list of the common foods that cause trouble, with onions being one of the major culprits.
I have a veggie patch and sadly nearly all the veggies I grew were on the list. You try to do the healthy thing and grow your own only to find you’re making things worse! Most of the patch is now flowers which I can pick to brighten up the house and the veg are enjoyed by the rest of the family.
Gill x
Hi Pippa, I have had IBS for over 20 years. Over this time I have tried all sorts of concoctions, usually to no avail! I eventually worked out some of the food triggers and by avoiding these and eating a well, I manage symptom free for much of the time now. Like Jean and Gill say, fibre, which is always recommended, just makes things worse and onion for lots of people, including me is a killer. So if you can find some of your triggers and manage the stress and fatigue _ easier said than done _it may help. Hope youre feeling better soon. Denise
I sure have, and recently also started randomly barfing every few days. I think that Hydrea is just a huge irritant to my stomach.... Calling my doc today as it happened more than once yesterday.
I have PV and colitis and currently have a colitis flare up..my consultant said just double my asacol but I think asacol and Hu may be the reason the flare is still active...have a doctors appt soon....anyone else with PV and colitis?
best wishes
Richard
I have ET Jak2+ and also mastocytosis. Have been on HU for about 2 years and have recently been getting stomach cramp, very rumbly stomach and similar!. I had diverticulitis about 20 years ago and wondered about IBS. I have recently had endoscopy and colonoscopy to see if anything more serious is going on - and heard today, all clear.
So maybe just a function of the medication. I have been lucky to have few other side effects and still work hard, so if this is the only problem, have to live with it and get on! Agree stress doesn't help though.
I am lucky that found ET early and bloods under control now, so happy days.
Stephen (age 67)
P.S. forgot to say, I was prescribed Lanzoprazole to calm stomach, but doesn't seem to have much effect. Mint green tea is better
Stephen
Thankyou all. Stephen , I'm going to get some mint tea and try it as lanzoprazole isn't doing much for me either .... I did read that sometimes stopping the stomach producing acid is bad for IBS so I've stopped the Lansoprazole for a few days to see if it helps .
I had heard that too - too much tweaking can cause our systems to be too alkaline which then causes more problems! It’s a minefield out there 😱 Hope you find your perfect path soon.
Gill x
Hello
I've had IBS for 24 years. I'm on the "constipation" side of the fence! I've been on HU since January 2016. I can tell when I'm due a flare up by my skin and eyes. Since I started a strict healthy eating regime back in November 2017, which includes gallons of water daily, I rarely have side effects or flare ups. If anything the HU has improved my bowel movements!! My last resort is laxatives, but I've not had to take one for a very long time.
Angela
24 years! That's a long time , I had it for a couple of years way back but thought it had gone for good! I'm trying the healthy eating but not much of a result yet but I will persevere as I'm still looking for the lol all the time. Thanks for your input and hope you remain IBS free .
Hi Pippa
Thank you and you're very welcome. I feel for you having to look for a loo all the time! Your perseverance will pay off trust me, don't give up!.
Take care
Angela
Blood levels fine but still symptoms
Is this ET related Pruritus?
Still getting PV symptoms...
