Managing a Liquid-Only Diet with an Ileostomy - Need Advice

Hiya,

I have had my ileostomy since 2012, and 5 major ops later I'm still here. It has been very difficult the last few years because I kept getting blockages and my doctors/surgeons told me, "Don't be so ridiculous, that cannot happen." Anyway, in the end they admitted they were wrong and I was told that because of all the adhesions plus stoma hernias, I have to live on a liquid-only diet.

It's driving me crazy because of the cravings. Sweet stuff is fine, but it's trying to get the savory cravings under control, and I'm a savory person by nature. If I eat normally, I block, and it's terribly painful or a trip to A&E. Has anyone got any ideas that could help me? Also, I have been a vegetarian for 15 years +, but I have succumbed to eating meat because of the cravings and being anemic. To be honest, I'm totally disgusted with myself for eating meat.

Any suggestions would be greatly appreciated as I feel so alone on this, and I don't know anyone else with a stoma.

So if anyone can help or suggest anything, I will be totally thankful.

I would switch doctors immediately.... Just my opinion sounds like you're not getting proper care and they aren't listening. I hope you feel better. Have you tried any type of nutrition shakes? Instant breakfast, Ensure, Boost?

Yikes, sounds like you have been through a lot. Sorry you are having so many issues with food. I can understand where sweet is not necessarily a problem but savory is a totally different story. My first question would be can you eat baby food? If you were once a vegetarian, it seems like many veggies can be liquefied - also meat. Does baby food consistency pass through okay? Hope you can find the answers you are searching for.

If you're using NHS, do you have much of a choice with which doctors you can see? Is private an option (if not already that route)? I wish I could switch cravings issues with you. I rarely have a craving and have to make myself eat. A friend on here suggested I mix those instant (carnation I believe) powders into ice cream and now I'm craving it with ice cream from a chain called Dairy Queen- which is a good thing for me to even remotely want something.

Hi Ozzyb,

I'm with Beth on this one... you need to find better... much better... doctors! Whatever is causing your blockages isn't going to get better with time... only stay the same or get worse... and it's usually the latter. Being anemic means you need to supplement with iron, with ferrous gluconate probably your best bet. When I was waiting for my stoma revision, I'd block very easily, so the last few weeks before the operation I put everything I ate in the blender first. You get used to the weird texture of your favorites, but you do what you have to do. I also drank a lot of nutrition drinks like OWYN (Only What You Need) and Kate Farms sole source nutrition formulas. But get you some better Docs!!

;O)

Words of Encouragement from Ostomy Advocates I Hollister

Hello Ozzy
Sorry to hear about your problems with food.

I wondered if you have looked into the possibility of  pre-prepared meals made for people with special needs.
I work in a kitchen where these types of meals are served up for people with all sorts of dietary needs. They are labelled as ‘normal’ through to levels 4-5 & 6. Levels 5&6 are  presented to look like the things they are made of but in fact, are semi-liquified, so do not cause digestive problems for the customers.

There is also a range of level 6 vegetarian options.

I do not know where in the UK you live but our meals are provided by an organisation called HILS (Hertfordshire Independent Living Service ).
I believe there are other HILS throughout the country which are Called Health & Independent Living ) 
It might be worth looking into!

Best wishes

Bill

That sounds rough. I haven't eaten meat in decades and I can only imagine what you're going through.

I use SPIRU-TEIN as a shake, although it's not technically a liquid, it's thicker. It gives me tons of energy.

Best of luck.

A note of perceived availability and resources available to doctors and patients within the UK... primarily for info for those outside of the UK [and within too!]:

[From a non-medic but an experienced patient who has experience of both NHS and private health care - and loss adjustment management of insurance on behalf of group med tech companies for private care resources too.]

 

On this particular post, much has been said about the inadequate treatment here in the UK...

 

 

• Under NHS rules - protocol allows anyone to request a second consulting specialist clinician's clinical examination and second opinion.

Given NHS waiting lists - following COVID - the waiting list is exceedingly long for some/most specialist referrals in most regions of the UK - irrespective of what your GP is prepared to do.

 

HOWEVER, where one's GP suspects a cancerous condition - the 7-day rule applies - i.e., within 7 days one can have access to a first consultation with a specialist clinician.

 

[Sometimes a locum GP is a more accommodating option where GP's appointments are hard to schedule.]

And there is always the ER of any hospital within the UK - but again, dependent upon what level of examination or subsequent bed stay one is given at the outpatient emergency room - then equally one can be 'unlucky' and get sent home inappropriately.

 

It can come down to pure grit and perseverance in holding firm, retaining one's own inner 'knowledge' of being able to accurately report the symptoms - from a journaled diary of actual symptoms/timeline - and insist on seeing a superior if dissatisfied with the initial examining intern/doctor/health care professional.

If one is already an inpatient within an NHS hospital - usually one's own lead specialist nurse or clinical lead clinician may be seen BEFORE DISCHARGE IS ACCEPTED BY THE PATIENT - but so often the on-call doctor is the one to sign off - and sometimes inappropriately - especially in an emergency admission.

 

Generally, most medics give of their best and although severely overstretched, the NHS does do its best - but ALL employed clinicians within its service DO have strict protocol guidelines and are unable to SCHEDULE TREATMENTS INDEPENDENTLY - in fact, the multidisciplinary meetings are a stage to try and safeguard actions - and also to help regulate the overstretched, overburdened list awaiting theatre calendar for surgical interventions.

 

Private medicine is a different matter - but what may surprise some, is the actual fact, that whilst a lot of excellently highly qualified practicing clinicians - often at the peak of their experience - HAVE LEFT THE NHS AND CURRENTLY WITHIN PRIVATE PRACTICE [often due to the fact they were severely challenged by the constraints within the NHS whereby they were unable to treat their patients] - amazingly - to some - but a logical situation which is resultant, THERE IS STILL A NEED TO ACCESS THE RIGHT TYPE OF CARE WITHIN A TIMELY MANNER WITHIN THE DUTY OF CARE... so insurance or money is not the golden road to excellent care!

 

So I figured I would just share these thoughts as those outside of the UK may not necessarily understand how dire the situation is over here - even for those where money is not the obstacle.

 

 

 

It seems to me that INVESTMENT within health care comes not only in hospital physical equipment [a lot of imaging systems and other resources are in breakdown/prop-up mode at present] but also in recognition of TRUE VOCATION - for when it gets to the point where doctors are unable to proceed to help their patients - then naturally they feel their training and vocation is best deployed in areas and locations WHERE they can HELP THEIR PATIENTS - and this inevitably means letting go of their NHS contract of employment - and in order to use the best resources to work in conjunction with their own skills, joining clinics and running their own private practices within and often outside of the UK altogether - or moving to use the best possible private healthcare resources available within the private sector and thus enabling the treatment of those patients it is possible to help!

 

Quietly, but I believe truly expressed here.

J.