Wednesday 10th June
Seriously. Pharmacy haven’t even got my second box of drinks in despite having said it would be delivered today at 11am. Had to call my dietician to re write the script so my GP can write a CORRECT script tomorrow. Arseholes.
Why is so complicated to do some maths or even call the patient / prescriber to confirm the dose?
Talk about stressful. I’m already anxious about doing this whole six weeks without any food, this isn’t helping.
Thursday 11th June
New script came in. Was still wrong. Got it corrected so I had 10 boxes ordered, totalling 180 drinks.
Start my new job tomorrow. Terribly nervous. Hope this passes soon.
Friday 12th June
Collected all my drinks. Storage is a problem, no real room in the house. All twelve boxes are now in the downstairs loo; eleven in Summer Fruits, one in Orange & Pineapple. Goodness knows what happens when I need a repeat script done. I’ll deal with that next week after I’ve done a full week at work (40 hrs!!!)
Today was mostly made up of nerves about driving to and from work. Managed it though.
Saturday 13th June
Slept in. NOT!
Had a relaxing day. As much as I could before going out to the Crohn’s event.
Realising that this week will be work and trying to get my head around only having my drinks. For six weeks. Madness. Making my mind boggle.
Getting a bit anxious about it. But I know it’s going to help. Trying to being positive. Trying to ignore it and just get on with it all. Including now the creeping in feeling of driving to work again. I really hope this stops happening. I’d love to fast forward through it. I’d love to fast forward though being “new” and “unsure of my job role / duties” but I know I can’t. Hopefully it’s not like being in the school and I actually am appreciated. Or I at least feel more confident about being competent. I know I am complicated by my disease and how it affects my mind and body but I really need to separate it from who I am. I wish it could go into remission and stop bothering me so much.
Sunday 14th June
Making my last dinner. Homemade meatballs and pasta. Hope its okay. It’s really hitting home that everyone else will be eating and I won’t be. I don’t feel that sick.
I have had a really bad belly this weekend – constant noise and abit of pain and no BMs! – which I could do without. But I know it’s probably because the Infliximab is really low in my system, even after just a week. This is why I need the diet. I know that much. Just got to stay focused. Right?
Monday 15th June
Started my drinks today. Four to get through.
It’s hard going. I miss food. The drinks aren’t too horrible but six weeks of this? Or at least until July 9th when I go back to the Nutrition and Diet Team.
I’m allowed one meal today, so it’s dinner. Rice and tomato sauce left from yesterday with cheese. Yum!
I’m in bed watching HIMYM and finishing my chocolate buttons from the cinema last night; pain in my tummy not long after starting them, then an exploding butt spell.
Unbelievable abdominal pain when going. Or when trying to go. Can I blame the popcorn?
Tuesday 16th June
Went to work with six drinks, all gone. Felt ridiculously full by the time I left to come home. Not dehydrated but my eyes were all funny from all the work on the PC. Good to be busy though.
When everyone had lunch; that was really tough. It’s the smell of food, as much as the taste that is slowly killing me. I hope this passes.
Came home and had a really small dinner. Finished it but felt really full. Not hungry at all on our trip to Tesco which is a good plus. Did seem weird being there not going to get food or anything. Very weird.
Wednesday 17th June
On eight drinks today. Managed 6 at work. Feeling very full but not hungry.
Am noticing I’m not really peeing a lot. And I only have a BM in the morning but it’s usually 6am then again before I leave for work.
Feeling the pressure behind my eyes but unsure if it’s just staring at a PC all day.
Having tea alongside my drinks, just for something different.
Thursday 18th June
Woke up with a headache and feeling really sick. Probably didn’t drink enough water yesterday.
Managed six of my eight drinks at work. Have sorted out my schedule of it for the next three weeks until I get back into see the dietician. I already want the end to be coming. I’m hoping I can show massive progress so that they can start reintroducing food. I can’t wait.
Received my letter from Mark (my Gastro consultant) regarding my last clinic appointment and that really puts it into black and white how I actually am, even if I look and feel well. I know I must do this and do it well so it can be recorded that I’ve tried and still no progress (like before on just Infliximab)
Regarding my butt; had to go for a BM at work today (my first one there!). I usually go before work; which I did as normal today. Felt really awful and cranky beforehand. It was really painful too, but I know there is hardly anything there. Could this just be the last meal I ate?
Will see how I am feeling tomorrow and if this improves.
Trying to drink more but not really peeing more. This is concerning me mostly of all.
Home now and I’m watching TV. Food programmes. This might be the hardest part, giving up my food programmes I adore.
Weight today; 86.3kg a massive .8kg loss from yesterday. Weird.
Noticing the white film on my tongue (attractive) and the bad breath I used to get when I was really sick and my Crohn’s was flaring quite badly, back in 201 (wonderful eh?). Know that this is a wonderful side effect of the drinks and nothing else, but still doesn’t stop me feeling it’s something else; wonderful psychological battle. Added to that, so much reflux it hurts. Need to keep an eye on it and report back to Jenna (the dietician) next week at some point.
Friday 19th June
Didn’t manage all my drinks today. Taken so much Rennie for my acid reflux and mints to freshen my breath.
Everyone at home had dinner and I just sat in the living room and cried. I’m fed up. I don’t feel any benefit of being on this. I’m sore from going to the loo 8 times a day; it’s painful and has no warning whatsoever and I could do without shitting myself or having an accident at work or in my car, thank you, body.
So I need to speak to the dietician on Monday. To really see if all this is really that necessary. If I can come off it because the side effects are making me miserable; more miserable than I expected and much more than I can bear, even at this early stage. I miss food and I miss the feeling of something in my mouth. I’d even go and do the low residual diet properly this time if it meant some actual food.
They can’t keep me on a “medication” that is harming my health instead of helping it, can they? I know she will try her best and pursued me to try it for longer but I really can’t. I can maybe do drinks and some food but not only liquid. It’s too much. It’s making me feel horrible. Even more than when I wasn’t eating and feeling rubbish (end of May time)
Saturday 20th June
First full weekend on liquids only. After yesterday I’m going to try my best to do my drinks today and tomorrow but I know I will be really miserable. Going shopping to ease my mind and waste some time; so I don’t have to eat or think about food for a while.
Going to read and blog and then go to my Crohn’s Coffee Afternoon with the girlies from the OT. I hope I don’t say anything horrible there. I need some advice from them. I hope they understand. They should, we have this… Common ground.
Ate half a jacket potato for dinner. Got full really fast and the texture of food in my mouth was strange to begin with. Definitely can’t do these drinks for much longer. Really bad strong acid reflux. Took quite a few Rennies to combat that, didn’t help much.
Despite that, I managed my full amount of MXT (20mg)! Goes down without a problem once I get going! Finally, some good news right?!
Doesn’t really make feel sleepy straight away anymore, but I do still get a full night of uninterrupted sleep.
Sunday 21st June
Decided it’s time to come off these elemental drinks. Had a long chat with Ben last night about what to do – and because he wants to remain out of the decision making process (sounds like refusing to have an opinion to avoid upsetting me) it was left to me. I had to decide if I wanted to try and progress knowing that the side effects might not last much longer or just come off all together.
We went over to the Brown’s for dinner – a family BBQ for Father’s Day – and that really sealed it for me; there was food there! I just can’t do the drinks. It is too difficult and I’m not strong enough. Mom and Dad weren’t particularly thrilled when I explained this and my reasons behinds it, but said they weren’t disappointed in me but the situation – probably because this is something else that isn’t working like it should be / planned and I will need that White Cell Washing treatment in Nottingham now, regardless of my MRI scan and forthcoming Infliximab infusion next month.
What I did realise that I do need to plan better meals and eat better. That’ll be what I do instead.
Monday 22nd June
Rang Jenna at the hospital to update her and ask for some advice. Considering all the side effects and my miserableness, it isn’t worth staying on them. But I do need to wean myself off them and then stick STRICTLY to a low residue diet alongside a good meal plan. Mom and I will try to do this in the evenings this week after work. Sounds like fun actually!
I managed a small lunch and two of my three drinks; honestly, can’t be bothered much.
Then had salad and some pie for dinner. Then out to Odeon for a film, it was a good day.
Last day with Amie (new line manager) before she goes on leave for three weeks, going to be weird tomorrow. Work will be different for the next month.