Fall down seven times, stand up eight.

22 Sep

…At least, that’s what I keep telling myself. I’m having quite a blip at the moment, but before I go into that, I’ll tell you how I’m getting on at University.

University so far is great. I am really enjoying myself, and although I’m ill at the moment and have had a few problems, I have enjoyed a few nights out and have been getting to know some lovely people. I have told a few people about my ostomy, and they have been very interested and supportive.
I’ve got my timetable, and besides the 8pm finish on a Tuesday, everything looks pretty gravy baby, as some would say! Looking forward to getting started & into the work now, although, I will probably regret saying that when I’m stressed up to my eyeballs in work in a few months time! My accommodation is lovely, I really like it and I am so glad I opted for en-suite as it makes my life so much easier.

So, about this blip…Well, if you’ve been following my blog, you will know that over the past few months I have been having problems with partial blockages and pain when food is coming through Stacey. This pain came to an absolute high the other night. It all kicked off when I got chips on the way home from a night out, and didn’t chew them properly, which set off the pain, then 4/5 days later, I’m still in agony, even after the chips have passed through. It gets worse every time I eat, but I have the appetite of a very large pig at the moment, so this really isn’t ideal. I rang my stoma nurse up on Wednesday, having tried to have put up with it and sit it out, but it was all getting too much to handle, I’ve had Crohn’s since aged 7, so I definitely know when something is wrong with my body and have learnt to trust my instincts now. I’ve been getting a huge amount of pressure behind Stacey which has been very painful after I’ve eaten, it’s been at it’s worst on a night when I’ve obviously got all my meals going through me from the day, but I never really put food and the pain together until I saw my stoma nurse and the Prof who did my operation yesterday. Stacey has been finding it hard to push things through, and I’ve been getting build ups of food behind my stoma, especially behind her at the top and right hand side (as I’m looking at her) which I have been having to massage and squeeze to get food through, unfortunately with great pain involved. I’ve also been feeling sick when I’ve had stomach pain, very close to actually being sick on a few occasions and have been feeling very faint and generally out of sorts. Stacey has been nipping and wriggling no end on my stomach and swelling then shrinking daily as my food has been working it’s way through and bending over to pick something up or getting dressed has been so painful. So yes, I gave in, I’d had enough, and off up to the hospital I went with Mum yesterday morning.

On arrival, we went to the Outpatients’ Reception where I had to wait for my stoma nurse, and I sat huddled over in the chair with my Mum rubbing my back, in pain and wanting to fall asleep from hardly any sleep the night before from the pain. Then, it was in to see my stoma nurse. She checked Stacey and managed to get her finger down her and said she looked and felt fine. However, we were both still very curious as to why I have been getting so much pain, so she went to get a surgical registrar to have a look at me, especially as I had said that the pain had got so bad the night before that I had nearly got my Mum to take me into A & E. To my surprise, the Prof who did my operation came through the door to see me, as he said he wanted to check me himself and sort me out, which I thought was lovely. I trust him 100% with my problems and know he will do whatever he can to make me well, he is fantastic and I know he has my best interests at heart, as any good medical professional should. He asked me about my symptoms etc and within very little time diagnosed me. I have a partial obstruction in my bowel, just behind my stoma, due to scar tissue, he says it is extremely likely.

Even when I have problems, I am still so thankful for Stacey and the great medical team that I have 🙂

All the things he was describing and my symptoms go hand in hand, and I was pleasantly stunned at how quick he came up with some answers for me, I actually said to him, “That’s the man right there!” :D, with a big smile on my face at how I’d gone from worrying what was wrong to getting some answers so quickly. The obstruction in my bowel from adhesions (scar tissue) has most likely made a kink in my bowel not far from the mucosal junction (where Stacey comes out of my skin on my stomach) that is made worse by food. I am now on a liquid diet for 2 days to see if that eases it to help secure the diagnosis, and so far, I’ve had very little pain compared to what I was having the day before yesterday on a normal diet. I have to go back for a few tests soon, one being an x-ray of my stoma with dye injected into Stacey to try and find out exactly where the obstruction is. Otherwise, I am not entirely sure on the other tests, although there was mention of me maybe benefiting from a camera down my stoma to have a better look at things.

We will find out soon when I get my letters through, then I will be going for the results to see Prof again in a few weeks time. After these few days, it’s a very low residue diet for me and taking things very carefully. Then, once I get my results, we might be able to sort things with diet, pain relief or I might have to have another operation, which could lead to more scar tissue, it’s all a vicious circle really and neither outcome is exactly brilliant. On the plus side, at least now I have some answers, and also, I no longer have to dilate my stoma as the Prof said Stacey isn’t the problem, it’s my obstruction making things painful and dilating will not help. I am very low on energy, coming down with a cold, and really not in the mood for all of this struggling and pain. I have just started University…and I have been through enough pain in my lifetime, but obviously, these things just have to test me and see how strong I really am.

These things come to try us.

& even in pain, I still try to see things positively 🙂

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5 Responses to “Fall down seven times, stand up eight.”

  1. john ingamells September 22, 2012 at 10:04 am #

    well written and very open and helpful for anyone new to having a stoma or surgery and its many complications. I look forward to hearing of your progress at uni, as well as obviously the tests and subsequent results. Keep on being so strong and positive, i am sure you will inspire many others, especially younger sufferers. I have had my stoma since 1987, its had its ups and downs too, as indeed has my body and the illness. good luck.

    • staceystoma September 22, 2012 at 1:58 pm #

      Thank you John, my patience is wearing thin at the moment, but something inside me says “keep going!” x

  2. Kaj Mad Catlady September 22, 2012 at 9:07 pm #

    Are you getting support from the university – note takers if you cant get to lectures, extensions on assignments etc? If not, you should be. The Disabled Students Allowance is there for people like us – no one will look down on you for getting support. I work in this area – so if you need any help accessing support, just shout! And that goes for any other Uni students with any sort of long term health concern who may read this. Blessings to you Amy xx

    • staceystoma September 22, 2012 at 9:27 pm #

      Thank you for your comment, provided me with lots of info! Luckily, DSA and the Uni are being really good with me, so they’ve sorted things out for me 🙂 x

      • Kaj Mad Catlady September 22, 2012 at 10:57 pm #

        Excellent news – good to know you are getting a good level of support xxx

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