Friday, 23 September 2011

Surgical options for gastroparesis

I had my appointment in Durham yesterday to discuss my surgical options. We went through step by step listing the interventions along with a few pros and cons. The options for me were as follows:

1. Botox into the pyloric valve in roughly two weeks time. Done via endoscopy and minimally invasive. My help relax the valve and allow the stomach to empty faster. Roughly 20% effective.

2. What tube? Endoscopically placed gastrostomy tube (into the stomach) with a J tube extension. No need for general anaesthetic but would cause trauma to the stomach (my consultant advised against this option). / Or surgically placed jejunostomy (avoiding the stomach) tube. Surgical procedure, so slightly greater risk. Avoids damaging the stomach. Less problems with blockages and movement of the extension.

3. Biopsy, If I choose the Jejunostomy tube it would be a good opportunity to take a full thickness biopsy from the wall of the intestine. This could help to identify better treatment in the future and some would go to medical research to help learn more about gastroparesis.

4. Both the jejunostomy tube AND fixation of a gastric neurostimulator. It is similar to a cardiac pacemaker and works by sending electrical impulses to the wall of the stomach. This is said to reduce the nausea and vomiting associated with gastroparesis. Gets everything done in one surgery. Could help with the nausea enough to enable me to eat again. More invasive as it involves a laparotomy. 50% success rate. The unit will protrude from under the skin and may be very uncomfortable due to my low body weight. Could make things worse by creating scar tissue, especially if it is not successful.

5. Do nothing. Not really an option for me, I would simply starve to death.

An awful lot to take in in a short space of time, but that's where being an informed patient becomes invaluable! I had to make a decision that day, as the tube placement is essential. It will take at least 6 weeks to arrange any surgery so time is of the essence. So, hubs and I went off to have a chat about it and I also rang my mum for advice. The last thing I want to do is make myself worse in the hope of getting better, so I really struggled with my decision. In the end we decided that, if there is any chance that something will help me eat again, then I have to take it, 50/50 or not. So we decided to go with the jejunostomy tube, the biopsies and the gastric neurostimulator all in one go. It was very scary agreeing to have all that done and I may change my mind yet, but for now it is in the pipeline and my options are still open if I do have a change of heart. I will also be having the botox in couple of weeks time.

Medtronic are the company who supply the gastric neurostimulator worldwide. Here is a  link to their site and a map of hospitals in the UK who perform this procedure: www.medtronic.co.uk 

I would love to hear from anyone who has had these procedures, your advice would be invaluable to me. You can only get so much information from the medical journals, I want to know what it's really like for patients...so if you have one please contact me by leaving a comment below or email me at: helpmeminx@yahoo.co.uk

Sunday, 18 September 2011

No water!

Wouldn't it be nice if the systems that are put in place actually work! I have had some major issues with the company that provide all the kit for my feeding tube. I was supposed to get a delivery of sterile water on Tuesday this week. It didn't arrive but I had enough to keep me going and the dietitian ordered it again for me on Thursday when she came to visit. They promised to have it to me by Friday....it didn't arrive. So I rang them myself and they apologised and told me they would send it on express courier and it would be here by 10:30 on Saturday morning. Yes you guessed...it didn't arrive! I don't have the 24hr number to ring and they don't deliver on sundays so it's going to have to wait till Monday for me to sort it out. In the mean time I'm left with the problem of no water to irrigate the tube with. I had to trek out to the chemist to ask them if they had any but they don't stock it. They suggested I go to the little minor injuries unit at the local hospital and ask them. So, off I went, with my pump (I still don't have a backpack for it!) and two kids, to find some water. They did have some there which was a huge relief but its in IV (drip) bags, so I really did look like a hospital escapee when I walked out of the building with my drip stand, a tube in my face and two bags of IV fluid under my arm! I was just missing the hospital gown with the split up the back lol. The kids found it very amusing!

Thursday, 15 September 2011

Demon Days

Sometimes in life you really do have to question your very existence on this earth. As much as you try to get back on your feet...something always knocks you back down. This is the way it has been for us for as long as I can remember. So, what do you do? Pick yourself up, dust yourself off and start again. It's just what you do right? That's what the world expects. But what happens when you get tired of the knocks and scrapes and too frail to get back up again and again? My baby girl decided it was time for drastic action, so...she decided to write a letter to God. We are not a religious family but allow the children the freedom to make up their own minds about such matters. Here it is:

Dear God,


Thank you for the world, even though people do bad things, you have to stop people being bad. I want the world to be good!


From E. 
Aged 9


Nothing quite like the sheer straight forward sense of a nine year old eh! She gave me the letter and then promptly asked me if I knew Gods email address ha ha well this is the 21st century lol.

Those are the moments in life that keep us going. They may be few and far between sometimes but they are just enough to get us through the darkest of those demon days. When life keeps knocking you down...go ask a nine year old what they would do!



Sunday, 11 September 2011

Face Ache!

OK OK that will teach me, never speak too soon!

I have the most excruciating pain in my nose, face and throat. I have had 4 tubes in total now so I know roughly what to expect these days...but this is something else! I started with the mega sore throat yesterday so I went to the chemist and stocked up on over the counter anaesthetic throat spray. It helps a little but it soon wears off. So, step two was to try and eat some ice-cream to soothe it. Bearing in mind I have not eaten ice-cream since a bad experience over 8 months ago. It was brave, but hey, I was having a good tummy day so why not?

Today I know "why not"....vomiting your guts up is not a good way to soothe a sore throat! Especially when you have a tube to contend with too. What on earth was I thinking????? In shear desperation to soothe my throat I managed to aggravate every nerve in my face, to the point where I'm struggling to speak or even swallow and my eyes are streaming with tears from the pain in my nose. 

What a plonker!

Friday, 9 September 2011

Home Sweet Home

Friday 9th September 2011

Hey folks, I'm back!

Everything went according to plan, I went into hospital on Tuesday to have the naso jejunal tube fitted. It was a bit of a painful experience this time round, the medazolam (sedative) started wearing off just at the worst possible time. Needless to say it was not a pleasant experience and my nose and throat hurt like hell...BUT I don't care...I'm finally getting some food. I would put up with anything for that and at the end of the day it was only 5 minutes of pain in exchange for months of agony and starvation.
I'm so grateful to everyone at Durham for helping me to get some quality of life back after all these months of uncertainty.

The treatment...

I had a few days on IV Pabrinex (Vitamins) which has made me feel much brighter in myself. I have also been able to give my body a real rest this week with plenty of quality sleep and NO FOOD yipee!!! I am so relieved not to have to face the cycle of eating and vomiting every day, I can now get the calories I need virtually pain free! Yes my nose and my throat hurt and people stare a little but to me it is SO worth it!

I started on 15mls an hour for 24 hrs will be gradually increasing the dose every few days so that eventually I can just connect to the pump overnight and not have to cart it around with me everywhere. At the moment I am on 40mls an hour for 24 hours so it has to go everywhere with me. Meaning that I'm a little housebound at the moment because I don't yet have a carry case for during the day. Hopefully that will arrive next week and then I will be able to get out a bit more. I was sent home with 7 days supply of syringes, giving sets, sterile water (to flush the tube with) and the bags of feed. At the moment I have a Z stand to hang the bag from which I can carry around the house but the tubes do get in the way a little and a few times I have stood up to go somewhere and forgotten to pick it up (which really helped the sore nose!) so I think it's going to take a while to adjust to having it around.

If I have any problems like the tube getting blocked or dislodged they said just to go straight back to the ward. The staff are all lovely there and so much more organised than my hospital here at home. The community dietitian is coming to see me on Tuesday next week and I have a written plan of what to do until then, with all the contact details I need etc. Believe me after months of dealing with illusive Drs it is so refreshing to be given all this information without having to ASK for it! What can I say? What a team!!!

So all in all it went very smoothly and I'm back in my own comfy bed with very little pain and a belly full of food...yay! Maybe NOW I can start getting my life back!?

Oo and just to say thank you to the anonymous lady who sent me a wonderful message earlier this week, I have posted it at the bottom of the "your stories" page. I hope things improve for your daughter soon, but feel free to contact me any time, I'm always happy to help in any way I can.

You can email me at helpmeminx@yahoo.co.uk

Love and hugs and a big happy smile from Minxy xxxx

Sunday, 4 September 2011

Tips for Hospital Trips!

Only 1 full day left before I finally get my feeding tube. I have had no bad news from the hospital saying it's been cancelled or anything to suggest that it won't finally go ahead.  I have been packing my bag and thought it might be useful to post a list of essential hospital packing.

I won't go through the usual stuff like toiletries and nightwear, we all know that...but here are a few extra things that may help.

MP3 player
Laptop (and mobile dongle!!)
Warm blanket (so you can have a little piece of home with you!)
Scissors (always handy!)
Surgical tape (for those pesky tubes and cannulas)
DAY Clothes (so you can feel a bit less intimidated when the Dr comes round, plus it helps you feel human again! But be sensible and choose easy loose clothing)
Lip balm
Hair clips/Alice band (you never know how long it will be before you can wash your hair!!!!)
Sweets (For the nurses, they will come and talk to you more lol)
Cotton buds
Perfume... but don't take your favourite one, it will forever remind you of hospitals after!

If you are on an NG or NJ tube:

Soda water (to clear blockages, they never have any on the ward)
Throat lozenges (it always takes a day or so for your throat to settle into a new tube)

Quite a list I know but if you do it right you can fit all that into one medium rucksack which will fit into most hospital lockers....and oooh Don't forget your toothbrush lol!