Imodium daily after reversal?

Hi natasha

i had my reversal just over two years ago and still take loperamide at least twice a week and ‘softeners’ at ,east twice a month.  I’ve found that if I eat healthily, fruit, veg , proper meals etc I am always in the loo. If I eat cakes, white bread  and pasta then I’m pretty much ok. It’s nit possible to sit down to a full size dinner so I eat little and often.  Nobody has an answer to this problem and I’m just learning to adapt my life to it but it does disrupt any sort of socialising out of the house.  I’m sorry that you’re having the same problem and really sympathise, I was desperate to get a reversal as I assumed life would get back to normal and nobody mentioned that it would not.  However, I have to say it’s all much better than the alternative which would have meant not being here at all and I consider myself pretty lucky when I see what other cancer sufferers go through.  I hope you Manage to get your tummy under control soon and wish you well

Hi natasha it's over 2 years ago since my reversal I take 2 loperamide every day I find this helps me I just watch what I eat now 

Hi Natasha

I take 2 loperamide before breakfast and 2 before tea and I’m 8 months post-op. My surgeon told me before my reversal that i would probably have to take loperamide and it would be quite acceptable to take them for life. My doctor (who is normally really good) queried my last prescription as I think the NHS is trying to cut down on prescribing things like this but I’ll have to go back to work full-time if I have to start paying for them myself! We compromised with me agreeing to come off the ‘instants’ and going onto the capsule ones which are cheaper.

He also told me that things can take up to 2 years to settle down and I seem to have had a marked improvement after about 7 months - still get the odd dodgy day though and still have a very sore bottom! I have introduced a bit more fibre in the form of weetabix and that seems to hold off my toilet visits until later in the day.

Hang on in there - you sound to be doing really well

Take care

Karen x

I’m 5 weeks post op and don’t take anything, but I do eat a little pot of jelly every day. We make a batch and put it into 6 little pots - recommended by the hospital. Apparently jelly babies are also good and fruit juice isn’t. Hope it improves for you. 

Thank you all so much for responding!  It helps to know that I’m not the only one taking imodium or something similar. 

I do feel that things are improving each week. But I still have some challenging days. I will try the jelly and weetabix.

Natasha

Hi Karen

You may recall that I made a post on the prescribing of Immodium a few weeks ago.

I had another look at this and operative word is GUIDELINES and the issue of prescriptions is still left to the individual GP.

The GUIDELINES refer to infrequent episodes of diarrhoea but should not be restricted or applied to patients with long term conditions that required the medication to be taken.

So far I've only had one drug withdrawn from my prescription list but I was told when I started it that I should purchase it over the counter and was more than happy when my GP issued it and I got it on prescription for over a year.

One of the comparisons made was on the issue of prescriptions for paracetamol where the report states that a box over the counter would be 94p but on prescription the cost to the NHS IS £34 yes £34 the majority of the charge is made up of GP and PHARMACY  costs.

Stick to your guns and keep asking for your prescription for IMMODIUM to be issued on the basis you have a long term condition.

Ian

Hi Ian

Yes I was glad I’d read your post as forewarned is forearmed. My doctor is really good but no doubt under pressure to cut costs as most ‘businesses’ are nowadays. I was shocked by how many paracetamol I was given to take home after my original op but at least they get used up whereas I have a cupboard full of dressings that I didnt use - perhaps I should suggest a trade off at the doctors for some Imodium! 

I must admit I do feel a bit pressured to see if I can manage without the immodium but I’ll wait till I see the consultant in January and see what he says.

Hope you’re keeping well

Karen x

Hi Karen

Re: paracetamol

In Bristol (North Bristol NHS Trust) they no longer issue paracetamol. When I had my first resection in 2016 I was prescribed a load to go home with, but the subsequent two surgeries they've just told me to get my own.  At 65p for 32 caplets in our local pharmacy it seems a sensible decision.

Haven't yet asked my GP about imodium prescription, as since going over to my colostomy 2 weeks ago I seem to have the opposite problem of sticky output and pancaking so I'm following Ian's advice re extra fluid. When I start re-introducing fibre to my diet I think that will help too.

Camelializ x

Hi Natasha

How time flies nearly two months for you. Still early days for your bowel to settle though. Everyone is different and I don't take any medication at all however have some days where the bowel is more active than others! I don't have diahorrea so just accept the frequency is more on some days. I am 8 months post op now however everyone's body is different and found when I had my ileostomy even 8 loperamide wouldn't stem my output so it has to be what works for you.

Take care and shame we don't live closer since I have a stock of loperamide that will just be destroyed if I give them back to pharmacy! Such a waste!

Panda,

It's so nice to hear from you! Thank you for responding. I have been cutting back a bit on the Imodium. I am about 10 weeks out now and things continue to improve. 

I still feel a little wary of too many raw fruits and vegetables. Cooked fruits and vegetables are okay. 

xo Natasha