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Pouchitis. Still. 

So I still have pouchitis. For those who aren’t sure what this means, pouchitis is inflammation in the pouch that was formed from my small intestine.

“Patients with pouchitis typically present with bloody diarrhea, urgency in passing stools, or discomfort while passing stools. The loss of blood and/or dehydration resulting from the frequent stools will frequently result in nausea. Extreme cramping and pain can occur with pouchitis.” (Source: Wikipedia)

This is my third bout since my pouch was formed 19 months ago. The first two were treated quickly with antibiotics, symptoms were relieved within a couple of days of starting the meds. This time is different, I’ve had one lot of meds that did nothing, I’ve then had a pouchoscopy (a camera into the pouch) and biopsies taken. These tests show I still have pouchitis. And so now I’m on my second lot of antibiotics.  I also take fluconazole whilst I’m on the antibiotics to ward off the dreaded thrush.

I’ve been on them a couple of days now and not feeling any better but I’m hoping that things will improve. I’m in pain and so exhausted!!! This teamed with my other problems are really getting me down. We have a ton of stress at the moment, house problems, family issues, car problems, work stress. Everything is getting a bit much.

But I remind myself of perspective and know that in the grand scheme of things, all is well.  I have my husband and kids and some bloody wonderful friends and family around me and I’m going to my fall back Sheffield stance of “It’ll be reyt!”

Sam X

Update

Just thought I’d do a quick update as I’m getting so many lovely messages asking how I’m doing. 

I saw my consultant Mr Brown today, he did pouchoscopy and is happy that my pouch looks healthy! So the meds last week must have done the job. 

With regards to the prolapse, he had a look and agrees there is a definite prolapse in my vagina and has referred me to a gynae doctor to get it sorted. 

The pouchoscopy was fine. I was so nervous before my first one but just want to assure those who may be facing it that it was much easier than any colonoscopy I had with a colon!  They use a much smaller camera and it’s quicker and far less uncomfortable.  I felt no need for the sedation and though there’s discomfort in the air they pump through, the procedure itself is much easier.

  

The staff were lovely, they’re kind and reassuring. I told the staff nurse about my blog and he asked I would be writing about today. He asked for a name check if I were going to be nice and I feel terrible that I forgot his name already!! (*waves hi if he’s reading!) But the staff at Northern General endoscopy unit are all fantastic and make an embarrassing procedure a lot easier to deal with.  So huge thanks to them all. 

Thanks also to my mum for taking me and bringing me home as Timm was teaching today so couldn’t be my usual hospital buddy. 

I’m still feeling quite emotional, the prolapse thing has really thrown me and my head’s all over the place.  It was good to see my regular doctor, Mr Brown, he is so lovely and you know you’re not just a name to him. He saw my tension and said I looked upset and not my usual self. It meant a lot to know that he notices these things and actually cares. 

After my last post, I was very nervous about what sort of response I would get. I was scared I’d overshared. But your messages have made me weep. Those of support and those of thanks and gratitude that I had spoken out about something that had affected them too. Those messages make everything worthwhile, to know I’m helping others gives me the strength to keep writing.  So thank you all, you wonderful readers that give me your time, your thoughts and your support. You’re all awesome. 

I’m writing this tonight, unable to settle, I’ve some tummy pain after the pouchoscopy but also with a head swirling with thoughts.  Many are dark thoughts, but I’m blowing them away with the strength of a child blowing out their birthday candles, and the wish I’m making is for the strength to get over this blip, for the courage to keep fighting and for the continued support of this worldwide gang of bad asses! 

So I have little news, I’m waiting for the appointment with the gynae team and we’ll go from there. I did have one thought though that made me giggle… 

  

 

Well you have to find the funny somewhere, eh?!
Sam X