Geeky & kind of gross

But whenever people are listing the "pros" of having a stoma, I find it difficult not to suggest:

"Who else can watch and touch their intestines?"

:D

Managing sleep

I haven't posted in a while, but this is largely due to the fact that very little has changed with either my stoma or my lifestyle. Generally, things have been great: I'm back at work full-time, I don't have much trouble with food, and my stoma is now thoroughly normal for me. I couldn't pin-point exactly when it was, but at some point I stopped thinking about it so much and my affection for and appreciation of it has grown.

Unfortunately, one thing that hasn't gotten back to normal is my sleeping pattern. I just can't consistently sleep for more than five hours straight, which is a problem for me - someone who generally needs at least seven hours.

The result? I'm grumpy more often. I sleep on my commute, to try and make up the hours, but only end up being bitter at having to give up my valuable knitting or reading time just because my stoma decided to continue to be active well into the early hours. I've been having to work at home more at short notice, just to try and stay awake and get some work done. Not ideal.

A lot of the forums and websites that I looked at seemed to say that it was just something that you learn to cope with or work around. Well, I've tried that for a while and I honestly don't feel like I'm being the best that I be. I'm sure that this problem can be solved! And so I asked around, gathered various suggestions, and set about trying them out.

1.  Not eating after 7pm

I've noted before that this helps and it does. Ideally, I'd eat my main meal of the day at lunchtime, but that would mean having it away from my husband, which isn't great (or cost-effective). Unfortunately, it's not a guarantee that my digestive system is going to be done before bedtime. Since I've started eating more healthily (more vegetables, finally!), I've found that food can take anything between two and twelve hours to go through. Doesn't make planning bedtime easy!

2.  Eating a less adventurous diet

Mashed potato (not chips), bread and cheese go through my system in a very standard, easy fashion. They're predictable. Unfortunately, they're also not that great for feeling healthy; especially not if that's all you're eating. I - somehow! - managed to mainly eat this stuff for the past 18 months, but now I'm starting to crave vegetables and salad, and notice how much energy I have if I eat better (always chewing properly, of course!).

3. Loperamide/Imodium

My Occupational Health doctor and stoma nurse both suggested that I try taking loperamide or codeine to try and slow my digestive system down during the night. I avoid codeine, because I took lots of it during my big flare and don't like how it masked so many problems.

So, loperamide. Results were inconsistent and I found it difficult to match a dosage to whatever I'd eaten for dinner. One day I ended up with what felt like constipation after just taking two tablets, which was rather painful and - ha! - kept me awake!

4.  Changing to a 2-piece bag

This is my latest attempt and, so far, I'm pretty impressed. My stoma nurse originally suggested that I change to a 2-piece because I was having trouble fitting my bag to my stoma when it's longer, but then I realised that another benefit of having a 2-piece is that I can change the bag before I go to bed, thereby starting my night with a new filter and avoiding a build up of gas in my bag. 

Wow. I'm liking this system! Up until last night, when I had to wake up for other reasons, I had my first three consecutive nights of uninterrupted sleep (that's right - over six hours each!) in over a year. I really hope that this works long-term. If it does, it's just going to be a matter of finding the 2-piece that lasts the longest (my stoma nurse gave me the Dansac system; I'm currently trying one from Coloplast), because I'm aware that they're more expensive than 1-piece systems. Of course, another option is to try and find a pouch with a superior filter that could last for more than a day, which I'll also try.

Well, there we go - my quest for more sleep! Ongoing, but I feel like I'm making progress...

Last-minute bag change!

I thought I could manage to get four days out of my Dansac Novalife, but apparently not. Should have changed this morning, but instead am having to crack out the jelly babies... :)

I'll wait half-an-hour or so and hopefully that'll thicken up my output enough to not make this change a nightmare one!

Hair Loss - A Summary of Recovery

The other day, I came across a couple of posts from the summer of last year on the blog that I write with my husband. I was somewhat shocked to realise just how bad of a condition my hair was in; evidence below (the subject matter of our blog explains the glass of whisky in my hand in both pictures).

The picture on the left was from August 2011, so four months after my operation. The thinning had slowed, but it there wasn't too much left. I generally either let it be, like in the picture, or wrapped a scarf/hair-band around it to try and mask the gaps in my parting.

The picture on the right was from November 2011 (seven months post-op). Most of the hair had started to grow back, but those strands were only 3 or 4 inches long at the longest. As a result, I felt like a bit of a muppet, with tufts of hair along my parting giving everything a weird shape. At this stage, I'm sorry to say that I couldn't find anything in particular to hide this (other than wear a hat!), but I was encouraged by the regrowth and crossed my fingers that it wouldn't last too long.

By April 2012 (one year post-op), my hair was very nearly back to normal. Only the slowest-growing hairs (most at the centre of my parting) weren't yet long enough to sit flat. 

The above picture is from June 2012 (please ignore the messy do - it's finally about time for another haircut! My hairdresser recommended leaving it until those last few short hairs had grown long enough to lie flat). Interestingly, my hair's gone rather curly - drying naturally into ringlets if I let it - which is a nice surprise and seems like a hidden blessing after a year's worth of waiting. 

P.S. Please forgive the number of photographs (and bad hairstyles) in this post!

Insufficient vocabulary

My Inflammatory Bowel Disease has led to my learning lots of new vocabulary - mostly medical terminology - but this morning, I found myself in the awkward position of trying to work out how to tell my boss that, "I haven't called in yet, because my rectal stump is causing me problems." 

Words failed me.

In the end, I ended up giving a little too much information, but I was anxious about calling in to work from home without a clear and valid reason. Fortunately, my boss is great and very understanding and we just laughed it off, but, for just a moment, I was so embarrassed, I wanted to cry.

Instead, however, I watched a few wonderful videos from http://www.girls-with-guts.com/ and had a good chuckle. Those girls are great!

Today I need to change my bag...

but I really don't want to. It sounds like such a stupid, teenage frame of mind to have, but I just can't be bothered! But I know I have to. After all, I'm a grown-up; surely it shouldn't be so difficult?

Deary me... I'm such a big kid sometimes!

*heads off to the bathroom*

P.S. I apologise for this pointless post. :)

Note to self, re: sleeping through the night

Finish eating before 7pm. Seriously. No biscuits, chocolates or sneaky apples. Trust me, you'll thank me tomorrow morning.

10 more things this process has taught me

1. The human body is amazing and so, so resilient.
2. The online IBD support community is also amazing and resilient.
3. Keeping hydrated is so very important to feeling strong, alert and energetic. Before my ileostomy, I must have spent countless days feeling "blah" and just putting it down to a virus or something when all I needed to do was drink some water.
4. Food takes 4-6 hours to go through the remainder of my insides.
5. If I don't want to have to get up in the night, I shouldn't eat at all after 7pm.
6. Banana + Doritos + No drink to wash it all down with = Pain
7. My stoma appears to have a sense of both humour and timing.
8. It might take a while (11 months!), but your hair can definitely grow back.
9. The person most likely to notice your stoma bag is you.
10. Coming to terms with having a stoma can take a little while and one of the best ways to help this process along is to speak to someone who has experienced, or is experiencing, the same feelings and to talk about them. Share your thoughts and try your best to offer a helping hand where you know it's needed most.

One year on

One year ago today, I had the operation where my stoma was created, and I feel really quite calm about it. The past year's been a bit of a rollercoaster ride, but the ups definitely outweigh the negatives; namely, I'm not on any medication, my disease is in remission, and my stoma is healthy. I am blessed to still be here and to be living a normal - if a slightly different "normal" to before - life.

This morning, I tidied out the box that I keep my ostomy supplies in and - rather appropriately - stumbled across my hospital discharge note, which detailed what happened this time last year. I thought I'd post it, just so that I don't lose sight of how poorly I was and how grateful I should be for my health.

Date of Admission: 08/04/2011
Date of Discharge: 19/04/2011

Reason for admission: 
Diarrhoea, Abdominal pain

Treatment and management:
IVI, Analgesia (pain relief)
Fentanyl PCA (like morphine)
Epidural
IV Hydrocortisone (steroids)
IV AbX - Cefuroxime & Metronidazole 4/7 (antibiotics)

Operation/investigation:
Bloods
Laparotomy, subtotal colectomy & ileostomy formation with epidural (large incision in my abdomen to explore what was going on with my colon, followed by a near-complete removal of it and the creation of my stoma)

Diagnosis:

1. Inflammatory Bowel Disease with toxic dilatation 
2. PCOS (completely separate from my IBD, but something that I'd had a - painful - ultrasound to investigate a day prior to my hospitalisation...!)
3. Congenital Hearing Loss (also completely separate from my IBD)

Drug regimen on discharge:

1. Cloxane (to prevent against blood clots)
2. Paracetamol 
3. Fresubin (Banana) (meal replacement drinks, to replace nutrients)
4. Ibuprofen
5. Tramadol (painkillers)
6. Buscapan (I don't think I ever got this, actually! But it's to help with spasms, abdominal pain and nausea; I could have done with some when I had an adhesion-related, vomiting and pain-fest not long after being discharged)
7. Loperamide

It's been a long year, with lots of changes and learning, but life is good. Here's to many more years like it.