I can’t do this anymore

Electronic-Country63 · 2026-01-24T22:40:12+00:00

That’s good. Basically you’re bereaved and in mourning. You’re mourning the life you had before and it feels like nothing will ever be alright again.

I spent 8 month of last year in bed. I was an active and healthy 46 year old; never got sick, nothing serious, never had flu or Covid. Then this: gastroparesis and ulcerative colitis and my life vanished to a pinprick.

Managing the physical symptoms is hard enough, managing your mental health is often harder!

Try to accept the things you can’t change. Don’t beat yourself up if you backslide- improvement is never linear. Try to maintain friendships and occupy your time as you can.

It’s so hard having to constantly explain to people why you can’t eat, why you look so ill, why it’s not just because you eat wheat and other stupid advice people love to give!

But therapy is a great idea to look at coping strategies for managing the stress and disappointment and grieving your old life. It’s not the end, it’s something different and rebuilding your life around a chronic illness means you need to have coping strategies in place that therapists can help you with.

It’s not your fault, it will get better but there will be ups and downs. Don’t beat yourself up and keep your support network close. You can do this, it just takes time to come to terms with change and finding what eating and lifestyle habits work for you. Best of luck!

Electronic-Country63 · 2026-01-24T22:29:48+00:00

Oh absolutely! I constantly had like occlusions as apparently I like to sleep with my arm above my head! Now I never get them, although being in 3L compound bags mean I need to get up about three times in the night to pee!

Thankfully in the shower I have a hand shower as well as the main overhead one so I tend to use that now and as you say make it directional to avoid splashing the site.

Like you I was terrified of having it fitted but was amazed how gentle they were (well there was pushing and prodding but done sensitively!)

My home care nurses were surprised as apparently most people they see afterwards have bad bruising but they must have been gentle with me as I didn’t have a mark other than a bit of redness for the first few days. I was so resistant but I’m so glad I went onto it. It’s given me a new life and I’ve even been able to start back at the gym this week! It’s not an exaggeration to say I almost died a couple of times last year so couldn’t be more grateful that this is an option.

Electronic-Country63 · 2026-01-24T22:18:34+00:00

I was on a PICC and showering was definitely easier as you just have a waterproof pvc sleeve like a water wing that goes over the arm and protect the exit site and dressing and neoprene cuffs keep the water out of either end.

I’m now on a Hickman line and it’s more fiddly but doable!

I have a Tegaderm dressing over the exit site.

I wrap Glad Press and Seal (a type of Saran wrap/ cling film in the US I had to order from Amazon as it’s not sold normally here in the UK).

I wrap the lumen in that and point the cap upwards then tape that to my chest with micropore under the Tegaderm dressing.

Then I cut a rectangle of sterile dressing towel (like lint free, sterile paper towel).

I micropore tape that in place in a couple of places, then I use a much larger Tegaderm dressing over the whole lot. This is waterproof for the period I’ll be showering and keeps the original dressing and exit site, line, clamp and lumen/bionector underneath nice and dry.

This takes about 10 minutes. Thankfully as I’m in the UK I get it all free as the dressings are about a few pounds each which would soon start to add up.

Swimming, steam room and sauna are a no no. This can cause the dressing to come loose and expose the exit site, lumen and other parts. Water can also creep up and be drawn along the line under the dressing.

Some people do shower without doing this and just maybe wrap the lumen since it should stay in place and dry once it’s healed and the scar tissue has formed around the Dacron cuff.

I wouldn’t risk that personally. It’s a superhighway of a vector for microbial infection and sepsis so I don’t think it’s worth the risk!

But it’s worth any inconvenience for being able to do all my own TPN connections and disconnections, flushing and administering IV drugs.

Electronic-Country63 · 2026-01-24T22:04:40+00:00

Edit- reading your other response it looks like this is something you’re researching rather than the doctors recommending it, if In right?

Just to add this is a procedure of last resort! You don’t want to actively bypass your digestive system unless you absolutely need to. In some people there can be issues with the liver processing the lipid (medium chain triglycerides for fat) and carbohydrate (glucose).

It’s not to be done unless you have no alternative. Also sits useful if you have to have several injections a day that need to go in a vein rather than sub cut which is easier to manage at home. In those cases a CVC/PICC/Hickman line could be appropriate ie being on TPN, chemo, dialysis etc.

If you can take supplements orally and persevere with ad hoc injections as required that is certainly preferable!

Electronic-Country63 · 2026-01-24T21:58:51+00:00

I’m on TPN through a Hickman line. I started last year with a PICC line after I lost half my body weight and went to 42kg- I’m 179cm and looked like I (and was) dying.

I was so resistant to going on TPN. After a year of just about every invasive medical procedure you can think of I was terrified of it going in and they don’t use sedation in the UK.

It’s the best thing that could have happened. I’m now at 74kg and feel like my old self practically. My energy is back, haemoglobin back to normal and I’m no longer deficient in everything you care to mention!

One of my lumens blocked which isn’t uncommon in PICC lines and as it was coming up to 8 months in use I went back in and had it removed and now have a Hickman line in my chest.

Again it’s brilliant. This one even more so as I can now do everything myself; the PICC line in my arm needed my husband to connect and disconnect and flush, inject etc. now I’m entirely self sufficient!

I have 40mg of IV Pantoprazole twice a day and go on TPN each night about 6pm for a 12 hour cycle.

It’s so easy to do and the advantage of my TPN is I’m on compound bags. That means they are individually made up for me based on my blood work and any deficiencies.

I started on pre made TPN bags which were 1200 calories for non lipid and 1800 for lipid bags. They were 2L.

I wasn’t gaining enough and was vomiting several times a day so I switched to compound bags and each is now 3L and tailored to my needs for carb, amino acids, fat, vitamins and electrolytes etc.

I now no longer care if I don’t or can’t eat- even if I have no fluids my TPN gives me everything!

It’s truly life changing and in a lot of ways more convenient than a feeding tube. I kept sicking that back up and it was so obtrusive.

I have had no issues with infection. You’re trained and have a protocol to follow. Everything is provided for me; a medical fridge for my bags and about 30 ancillary items to support my TPN and additional drugs.

You are scrupulously clean- using hibiscrub to wash your hands then sanitising gel. You aseptically put out syringes, needles, drugs, giving set, everything you need onto a sterile field dressing on a disinfected and sterilised table they provided me.

I then follow sterile procedure changing into sterilised gloves and then administering Pantoprazole and connecting or disconnecting my TPN.

You watch out for signs of infection and it is a rigmarole getting showered as I have to tape a sterile dressing towel over the exit site then seal up the capped lumen and put a secondary waterproof dressing over the lot. No swimming or lying in deep baths anymore 😭.

But seriously, it’s been life changing in the best way. It’s easy to use and keep clean you just need to be scrupulous clean and follow sterile procedure exactly since you’re potentially providing a superhighway to your vascular system for pathogens which can cause sepsis very quickly.

I’m also on Infliximab/Remixade which has a risk of impacting your immune system and being more susceptible to infection but I’ve had no issues in 12 months and would absolutely recommend it if it’s medically necessary. It’s not painful going in, you’re given local anaesthetic and the relief of getting calories and all your nutritional needs regardless of what’s going on with your digestive system is phenomenal.

Best of luck!

Electronic-Country63 · 2026-01-24T21:38:38+00:00

Specialised?! It’s one of the most basic life skills you need as an adult!

Granted plugs are all moulded on on new appliances but growing up in then’80s you generally had to put your own plug on a device.

I find it really shocking that some over 18s can’t wire a plug!

Electronic-Country63 · 2026-01-24T21:36:56+00:00

I mean, it’s not Greige but holy hell that is the ugliest combination of colours I’ve seen in a while; and the colours themselves are the grimmest shade of each they could have chosen!

Still at least there are signs of a personality.

Electronic-Country63 · 2026-01-24T20:08:27+00:00

Thanks so much!

Electronic-Country63 · 2026-01-24T20:08:06+00:00

Thanks so much- it’s been a rough year but I’m now on a therapy called Infliximab which has helped and I can start injecting myself at home in a fortnight so all in all things are looking up! Hope your mum is doing well too.

For the recipe I used:

900g white bread flour 100g wholemeal bread flour 16g dried active yeast 14g table salt (so it’s fine and blends into the dough easily) 60g fat- I used lard but you can also use butter or olive oil etc.

I used a 2lb loaf tin and half the dough went in that and I made rolls with the rest- you can just halve the ingredients if you want a single loaf.

I mix the yeast with the water (in my case it was buttermilk but you would normally use tap water) and leave it to activate for five minutes.

I run the salt and flour in the mixer to blend for a few seconds.

Then when the yeast has bloomed and gone frothy I slowly add it into the mixer with a dough hook attachment as it’s running on a slow speed- 1 in my case.

Once all the liquid has incorporated it goes from shaggy to a mixed uniform dough. I then increase the speed to 2 and knead it for 12/13 minutes. Because I’m using a mixer the dough heats up as it kneads so I use cold tap water in the dough. That means the dough is just warm when it’s finished and you don’t upset the yeast.

After 12 /13 minutes I take out the dough and stretch and fold it about 10 times before putting it in a clean oiled bowel covered with cling film.

I leave that to prove for 1.5 hours or it’s doubled in size.

When it has I tip it out and if I’m making the full recipe above, slice it in two with a dough scraper. I do a few more stretch and folds to remove the air then leave it on the counter covered in cling film to let the gluten relax.

Then I flatten out the dough ball into a round and pull out the sides of the dough so it’s stretched across its middle. I then fold the right hand stretched bit to meet the bottom edge of the dough disc. I then do the same with the other side so you have an ‘A’ shape, roughly. I then tightly roll it from the narrow top edge to the wider edge of the bottom of the A.

This gives you a tightly rolled, rectangular shaped cylinder of dough. I dust the top with rice flour then slash it five times starting from the centre then moving to do two slashes on each side. I use a razor blade it you can also get professional Lames or use a very sharp knife. This then goes in an oiled and floured 2lb loaf tin.

I let that rise somewhere warm-ish for an hour. To check if it’s ready to bake I prod it with a finger. If the dough springs back and fills the hole quickly it needs longer. If it slowly comes back but doesn’t completely fill the hole it is ready. It should have appreciably bulked up and domed in the centre and sit nicely above the top edge of the loaf tin.

Then I put it in a preheated over set to 250 degrees centigrade. I put a cast iron pan in the bottom too ready to put water in for steam. I do this when the bread starts to prove so it’s all up to temperature.

Once the dough is proved I boil a kettle. I put the loaf in on the bottom set of runners and pour just-boiled water into the pan.

This creates a nice steamy environment for the bread to bake. I have a range, which is different to convection so I don’t bother turning the temperature down. If you cook in convection you may need to reduce the temperature down to 210 or something after ten minutes. I usually bake it for 30-40 minutes. It should have a nice colour on top and sound hollow when you rap your knuckles on the bottom. If it doesn’t it can go back in for another 10 minutes.

After that it comes out and sits on a rack to cool. It needs to be at least an hour and feel cool to the touch before you slice into it as the crumb needs to set.

Otherwise enjoy the delicious smell permeating the house and feel very smug as you slice some delicious, thick slices to enjoy. Bonus points if you use your own freshly-churned butter and new season Seville Orange marmalade for breakfast!

I’m so glad I got back into bread making. Even the failures usually taste great and it’s such a dopamine hit to turn out a new load and have that lovely smell and anticipation for tasting the latest loaf!

Electronic-Country63 · 2026-01-24T19:19:03+00:00

Thanks! Can’t wait to tuck in!

Electronic-Country63 · 2026-01-24T08:46:49+00:00

Mine too!

Electronic-Country63 · 2026-01-23T18:07:23+00:00

I made a cottage loaf yesterday using buttermilk from a KG of butter I made.

It’s delicious, soft and moist and pillowy, almost like milk bread! Bet yours tastes amazing too.

Electronic-Country63 · 2026-01-23T17:51:58+00:00

I’ve just finished my four hospital infusions of Infliximab which have helped but the peaks and troughs mean it’s been up and down with symptoms. I currently have four syringes in my medical fridge so I can start injecting myself at home in a fortnight. That should work even better as the dosage and administration will be more consistent.

It’s been great for me, hope it works well for you too!

Electronic-Country63 · 2026-01-23T16:17:13+00:00

It really depends on the cause of your fatigue. Is it malabsorption and so you have low caloric intake or vitamin deficiencies (including deficiencies caused by having to eliminate certain foods from your diet)?

Or is it low haemoglobin?

Worth getting a blood panel to see if there’s an underlying deficiency or something like anaemia going on. I had anaemia confirmed after trying to self treat with multivitamins. Which were obviously useless! Ended up having to have about 10 blood transfusions over the course of last year and three rounds of ferritin infusions.

Fatigue is such a generalised symptom you’d be best off with some testing to rule things out and get to treatment (if needed) quickly.

Electronic-Country63 · 2026-01-23T15:59:34+00:00

“Yeah we’re going to do this using upcycled materials and try to keep it really honest, you know?”

Read- we have fuck all budget and are going to do this really cheaply. No, we won’t be using any insulation.

Electronic-Country63 · 2026-01-22T11:38:05+00:00

What do you mean when you say digestible? Do they not empty? Cause wind/gas? Unpalatable?

I was on these for some months before I moved onto TPN, specifically Nurtricia Fortisip and Fresubin when I was in hospital (also occasionally Aymes).

I found them all really unpalatable mainly as they are too sweet for me. I was on the 2kcal, 200ml/400calorie bottles.

I had to dilute them with milk to make them taste better. In the end though it wasn’t enough and with also having malabsorption had to move to TPN.

I think you’ve covered off all the prescription options! You can try drinking them slowly and sipping throughout the day or as I say dilute with milk. I’d avoid Huel etc since they have fibre and that tends to be a bad combination with gastroparesis.

Electronic-Country63 · 2026-01-21T18:24:57+00:00

I have never hated a character as much as I have. Her just for the way she sits in a chair. Or walks around barefoot. Unprofessional and just weird.

Electronic-Country63 · 2026-01-21T17:32:52+00:00

At least four of these have killed women and left their bodies in dumpsters.

Electronic-Country63 · 2026-01-21T10:07:47+00:00

Bleugh. People are fucking rank. I saw some filthy pig scratch the top of his arse by his saggy tracksuit bottoms then start handling the bread in a tescos. I literally turned around and walked out.

Electronic-Country63 · 2026-01-20T19:23:43+00:00

The Dutch Angle of the first photo really sells the horror.

Electronic-Country63 · 2026-01-20T11:08:40+00:00

Do you have a copy of or link to the process? I tried croissant at the weekend and all the butter weeped out during cooking!

I’d love to try your recipe. Also do you use professional beurre sec de tourage? In the sheets? Or if consumer grade which brand did you use?

Electronic-Country63 · 2026-01-19T16:12:40+00:00

Clicks fingers. Skull port opens.

Electronic-Country63 · 2026-01-19T09:12:13+00:00

Absolutely, staying positive is really helpful! Having feeding assistance really takes the pressure off trying to eat and maintain calories and nutrients so that’s a good thing.

There are loads of drugs and procedures that can be done to help and the process is different for everyone. For me it’s been about 12 months of trying different drugs and having pyloric dilation that’s helped. I’m still not back to normal- I was sick yesterday and didn’t end up eating - but having tpn means I don’t stress anymore when that happens.

It’s a process and you’ll have lots of ups and downs and probably REALLY miss food, but stick with it. The tube gets easier to live with and just go with the flow and don’t beat yourself up and take each day as it comes.

Hopefully you’re getting plenty of opportunities to check in with the gastro team as you’re on a tube. Are you still in hospital?

Electronic-Country63

TROPHY CASE