#tubieweek – The Spoonie Mummy Reviews – INGA Wellbeing

Good morning and welcome to another #tubieweek post.  Today I want to introduce you all to INGA Wellbeing.

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The Problem With What To Wear In Hospital

Anybody who has spent time in hospital will know the daily nightmare that is trying to be comfortable in what you are wearing.  Finding something that keeps you at a comfortable temperature, maintains your decency and that is functional – accounting for all the wires and tubes you may be hooked up to – can be difficult.  From a mental health point of view you also want to look half decent for when you have people visiting and for your own self confidence.

Hospital gowns are often only available in limited sizes.  They also tend to not fasten well, accounting for tubes and wires by exposing parts of you that you would rather keep covered, especially when you are in a multi bedded bay!  To keep covered you are often given two, one to put on front wards and one to go on backwards – this can result in you getting very hot.  I often prefer wearing my own pyjamas and nighties but when you are hooked up to IVs they aren’t always suitable.  You end up not being able to remove the item of clothing, or can’t put it on properly.

INGA Wellbeing

“INGA Wellbeing has combined personal experience, expert medical advice and fashion design talent to create comfortable, attractive and functional patient clothing solutions that really work for ALL medical conditions and throughout patients’ treatment journeys.”

INGA have come up with a fantastic range of clothes for patients which addresses all these issues.  Features include

  • Discreet openings for IV lines, drains, monitors, examinations, treatments and massages

  • Full arm opening enables independent dressing and undressing (for many) even with IV lines

  • Interior pockets to hold drains, syringe drivers etc securely & discreetly

  • Exterior pockets

  • Soft, gently elasticated fabric.  Made from natural fibres, washable at 40 degrees C

  • Wrap design and/or poppers to adjust size

  • No metal parts so can be worn safely during MRIs etc

#tubieweek

So how does this fit in with #tubieweek?  Well, this issue is not just one for in patients.  Some people, such as my boyfriend Ste, have to have IV’s running at home too.  People who are tube and TPN fed also have difficulties with finding functional and comfortable clothing they can use when hooked up to their feeds/treatments.

INGA Wellbeing kindly sent over one of their men’s long sleeved tops for Ste to try out and he was eager to give it a go.  The package arrived quickly (they offer worldwide, free shipping) and it was nicely wrapped in tissue paper so would be perfect if sending to someone as a gift.  I was immediately impressed when I took it out of the packet.  It was so super soft and the  soft grey colour was really lovely.  They also have navy option and a dusky pink colour in the women’s clothes. There are different options for men and women and they include trousers, long and short sleeved tops and dresses.

Ste’s Thoughts

I think they are brilliant!  Comfortable, lightweight, easily accessible for all my tubes.  I spend a lot of time in pyjamas or lounge wear but it can be a pain to have my TPN or fluids running in them, so often end up not having a top on which then makes me cold and uncomfortable around others who can see all my tubes and bag on show.  I also use my jejunostomy tube to take a lot of my medications and with the INGA top I don’t have to undress to do this as it just hangs out the side.  I really want to get a pair of the trousers too as this would make daily life so much easier for me.

Visit the INGA Wellbeing store

INGA Wellbeing have kindly sent me a code so my lovely readers can receive 10% off their order – just use spooniemummy18 when checking out for your discount to be applied (this is an affiliate code so I may receive some commission from people using this. It doesn’t affect your purchase in anyway apart from saving you money but I need to make you aware)

I hope you enjoyed our review.  Me and Ste were both really impressed and will definitely be shopping with them again in the future.  I really like the idea that you can buy gift cards too.  It is often difficult to think of how to treat a person who is ill or in hospital, and this would be perfect for them to get something lovely, but useful too!

NatalieThe Spoonie Mummy

Other #tubieweek posts

What Is A Tubie?

Video – Changing the port and setting up a TPN feed

#tubieweek – What Is A Tubie?

Good morning and welcome to #tubieweek here on The Spoonie Mummy!  This week I will be posting blogs and videos (check out the YouTube channel for The Spoonie Mummy) all about tube feeding and TPN.

What Is Tube/TPN Feeding?

Crohns disease has wide ranging effects on the body – it is not just a ‘pooing’ disease.  One of these can be malnutrition due to a severer flare, leading to severe weight loss and the body lacking vital nutrients it needs. If the flare cannot be brought under control by medication, and treatments such as liquid diets and supplement shakes are not helping, a patient may need to be fed through other means.

Enteral feeding refers to the delivery of a nutritionally complete feed, directly into the stomach, duodenum or jejunum via a tube.  This can include:

  • a tube that’s passed down the nose and into the stomach – called a nasogastric tube (NG tube)
  • Nasojejunal feeding tube (NJtube) – similar to an NG-tube except that it is threaded through the stomach and into the jejunum (the middle section of the small intestine).
  • nasoduodenal or ND-tube may be placed into the duodenum, the first part of the small intestine
  • a tube that’s placed directly into the stomach (gastrostomy) or intestine (jejunostomy) through the skin of the tummy

Total Parenteral Nutrition (TPN) may also be considered.  This bypasses the digestive system completely and a solution containing nutrients is fed directly into the blood through a tube in a vein.  This will be delivered through a PICC line, a Hickman line or a port-a-cath.

Does This Mean A Patient Is Stuck In Hospital?

Not at all.  Although these kinds of treatments are set up in hospital, patients can be taught how to do their feeds at home when they are well enough.

I Have Crohns Disease – Should I Expect To Have to Go Through This?

I have been suffering from bowel problems for over twenty years but Crohns Disease wan’t officially diagnosed till I was 26 and I have never had to be tube or TPN fed.  It was considered before I had my surgery, but they soon realised surgery and a stoma was needed urgently!  Ste has had to be both fed enterally and with TPN due to his Crohns Disease and his Gastroparesis.

I carried out some polls on my Instagram stories last week to find out about other people’s experiences of tube feeding.

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Twelve percent of those who responded were also currently being fed via  a tube or TPN.  I also posted a question for everyone to answer to find out who had heard of tube and TPN feeding before and 88% of respondents had.

Is This A Long Term Treatment?

Tube and TPN feeding can be short or long term.  Sometimes patients need a boost while a flare is gotten under control.  Sometimes, it needs to be a long term option.

What Other Conditions Are Treated With This Type Of Feeding?

Conditions including (but not limited to) cancer, premature birth, metabolic disease, malnutrition, gastrointestinal problems, genetic syndromes and renal problems may result in patients requiring feeding tubes or TPN.

Emma has Ehlers Danlos Syndrome and shares her journey on her blog.  She recently wrote a post about life, one year into tube feeding which you can read here.

The Pros And Cons Of Enteral and TPN Feeding

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I hope you have enjoyed reading this brief introduction to the world of #tubies!  Please feel free to ask any questions in the comments below and me (or Ste) will endeavour to answer them as best we can.  Obviously this post does not contain all the information as there is so, so much but I hope it gives every one a little idea and sets us up ready for #tubieweek nicely.

NatalieThe Spoonie Mummy

Disclaimer – I am not a medical professional – my blog posts are based on my own experiences of my chronic illnesses, things I have learnt being with Ste and my own research.  Any major issues should be discussed with your own doctor and specialists

An Interview With Rich Clarke

It has been a little while since I did an interview piece as I have been so busy but today I get you introduce you to a good friend of mine, Rich.  I asked Rich if I could interview him about life as a parent of a child with a chronic condition.  Rich’s oldest child, Josh, is nine years old and has a genetic condition (he explains better than I can later on).  Josh has had to spend quite a bit of time in hospital and I was interested on the impact this can have on their family, as well as seeing what kind of support there is out there for families in this situation and how the doctor’s treat Josh and whether they allow him to advocate for himself in as many decisions as is appropriate and possible.

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1 – Could you tell us a bit about yourself, and your family? My names Rich, I’m 34, live in Derbyshire. Been with my partner Amy for 16 years and have 2 children Josh who’s 9, Ellie who’s 6 going on 16!

2 – What condition does Josh have? What symptoms does this cause? He suffers from Mitochondrial DNA depletion of the POLG1 gene. Basically it’s a genetic condition which has formed from a defective gene.  There are varying severities of the condition, luckily for Josh he mostly suffers with muscle weakness. He cant walk and doesn’t eat nor drink so is TPN dependant. 
3 – What have school put in place to help Josh? He goes to normal mainstream school and they are brilliant with him. He has 1 to 1 care whilst he’s there. He has regular input from OT, Physio, and other professionals.
4 – Has Josh ever been a victim of bullying? Does this worry you? No never, all the children in the school know him, and they all think hes ace. It does worry me when he goes up to secondary school that he may suffer bullying more then. But only time will tell.
5 – How good are Josh’s doctors at talking to him about how he feels, as opposed to asking you? They’ll always ask him first how he’s doing whenever they see him and he’ll generally answer them correctly, unless he’s after sympathy then he lay it on a bit thick with his answers and they then look to us for an answer.
6 – How does Josh’s condition affect the family? Not as much as you may think. We do have to plan things more detailed, having to think when meds are needed and TPN will finish etc and obviously there’s things well never be able to do. But you have to adapt your way of life. Ellie misses out on some things, like places to visit as Josh would be bored or its not easily accessible in his wheelchair.
7 –  Do you think Josh would benefit from talking to/being in contact with other children with the same condition? Is this something which has been offered to you? At this moment in time no, maybe as he gets older it may do. Its been offered to us yes. 
8 – As Josh’s parents have you been offered emotional support? Do you speak to anyone else with children who have the same condition? There’s been mention of groups etc but we’ve never felt the need to go to these. No we don’t
9 – Is Josh able to make decisions about his own treatments. Obviously as his parents you and his mum will have the final say but do you both take his views into consideration? What about his doctors? No he’s not, he doesn’t understand his condition at all, to him it’s normal and all he’s ever known. The doctors mainly run things past us, ask our opinions, which a lot of the time they ignore anyway!
10 – I hear Josh’s sister is quite the little nurse! How does she cope with everything and do you ever feel that she misses out on things due to Josh’s condition? She really is amazing! Shes a whizz when helping set up his TPN and doing meds. She takes it all in her stride, we have tears when Josh has hospital stays as she doesn’t want to leave me or her mum. But as a whole she’s brilliant. She doesn’t miss out on all that much, she’ll go places with her mum while stay at home with Josh.
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Questions for Josh
1 – Do you enjoy school? What are the best and worst bits? Yes I do enjoy school lots, my best bits are doing Art, worst bit Maths as it hurts my head!!!
2 – Are the doctors you see friendly? Do they listen to you when you ask questions or want to tell you something? Yes all the doctors that come to see me are nice! There’s lot of them. Yes they listen to me when I talk to them.
3 – Who are your best friends at school? What do you like doing with them? My best friends at Mia and Alix, I like playing with them.
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Thankyou so very much to Rich and Josh for answering my questions.  I agree with Josh about Maths and I am really pleased that he is doing so well and enjoying life and school to the full.  He is a very inspirational little boy.  Good luck and lots of love to this lovely family!

Getting Ste’s ‘Tea’ Ready

Good evening, this is a bit of a late one but have finally had the last day of school today and we are officially on Summer break! Yay!

Some of you may know my boyfriend Ste, know that he also has Crohns Disease and know that he has jejunostomy feeding tube (PEG-J), for some this will be new information! He had surgery in January to create an opening and a tube was pushed through his abdomen into his jejunum (the middle part of the small intestine). A section of tube remains on the outside of his body which he tapes up to prevent it dangling when not in use.

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He uses this tube daily, both for medication and for enteral nutrition. The decision was made to place the PEG-J due to his malabsorption issues and the fact he can’t tolerate food and vomits almost everything he eats due to gastroporisis. He is actually sick without even eating too. He was on at home TPN on and off for 3 years but this led to eight bouts of sepsis in twelve months. He was then taken off this for his own safety.

Ste takes some of his medication orally in soluble form as they are absorbed better by his body this way. Any other tablets he has to dissolve in St Marks solution and inject into his tube to ensure he is absorbing as much of them as possible. It also cuts the risk of him vomiting them back up.

He is also fed through the tube. This means he gets the calories and nutrients etc he needs without having to physically eat. He sometimes fancies something and will eat a little, but this generally ends up with him repeatedly vomiting. This obviously isn’t pleasant at all as this already happens multiple times a day anyway due to his gastroporisis.

The feed is delivered monthly much like our stoma supplies. He sees his tube nurse regularly who keeps an eye on the tube aswell as making sure he is getting what he needs as she is able to amend the feed he has if need be. During his last appointment she has recommended changing his feed so he is taking more calories on but he won’t start this until he receives his next delivery.

Ste taught me to be able to set up his feed and now I often get it ready for him while he is in the shower or changing his stoma bag before bed. I thought I would take a few photos and try and briefly explain this so people have a little better of understanding of what comes with having a feeding tube.

For these purposes I’m setting him up a one litre feed (easier to describe and photograph), although he normally has one and a half litres which we have to make up into a larger bag along with 17.5g protein powder. First I get together the things I need which includes his pump and stand (this is left to charge during the day while not in use), the bag of feed and the giving set.

Next up I take off the cap at the feed bag end of the tube and the top of the bag of feed. Then you have to screw the tube into the bag of feed before turning it upside down and hoping you got it in tight enough! I then pop the bag of feed into the stand and strap it in place.

The next part of the tube runs through the pump and then back out again.

I have now got the rest of the tube gathered up ready and I turn the pump on. Now I need to fill the tube up so it is ready for Ste to attach to his PEG-J tube so I press the fill set button.

The tube fills, and fills, and fills, and stops just short of the end! I press the fill set button again until the liquid is right at the end of the tube before pressing it again to stop it.

 

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It’s now ready for Ste to screw into his JEJ tube and he will start the feed off. A one litre bag will take approximately 12.5 hours to run through for Ste as he has it on around 80ml/hr. Some people can tolerate it at speeds of up to 125ml/hr so their’s will only take around 10 hours. Ste has it running overnight to try and minimise the interruption to his daily life. If he gets up in the night he has to carry the stand with him to the bathroom as he is constantly attached to it while it is running.

The tube can be left in indefinitely. The tube part may need to be replaced at some point but as the major surgery work has been done this wouldn’t be a huge undertaking. The site of the opening needs to be kept clean and he has to advance and rotate the tube weekly. This means he has to push the tube about an inch further into his jejunum and rotate it around 360 degrees. This minimises the risk of scar tissue building up and ‘burying’ the tube which could cause issues and lead to further surgery.

I hope this has been an interesting insight into life as a tubie, particularly a PEG-J which isn’t used nearly as much as other types of feeding tubes such as NG’s (nasogastric) or PEG’s (percutaneous endoscopic gastrostomy).

Please feel free to ask any questions or share your experiences of feeding tubes below. Ste is also happy for me to pass on questions to him and will reply in the comments.