The Ostomy Rollercoaster.

6 Aug

The first time I experienced a blockage was around 2 weeks post surgery. I was so elated with the fact that I actually had an appetite and a choice of what to eat for the first time in my life that basically I went overboard one night and took things too far. I mixed foods and fizzy drinks and just absolutely went to town on the whole thing, so to speak, much to my regret early hours of the morning. My output slowed down dramatically, then all of a sudden I was getting the worst cramps, Stacey was struggling to pass wind over several hours, and then I started being sick every half hour, at the same time as Stacey started going crazy. Not a very pleasant experience, at all. The pain added on top of that from the 5/6 inch abdominal wound made being sick a thousand times worse and painful, considering I have a phobia of being sick in the first place!

So this past week or so has been a bit of a rollercoaster, both emotionally and physically. A week ago I experienced a blockage, which was really painful and made me feel sick and just generally out of it and uncomfortable. I suspected it as, generally, by the time of 3am in the morning, my stoma is in serious active mode, and there was nothing and I had passed nothing for about 6 hours. This happened when I first got my stoma, but luckily that was my body just trying to adjust to everything. Last Monday, early hours, I knew something wasn’t right and had been experiencing a distended abdomen and a dull pain below and around my stoma that was gradually worsening. I tried not to panic, and immediately increased my fluid intake to lots of Ribena and water to try and encourage things to pass. This, unfortunately, had no effect. In hindsight, the first thing I should have done was take some Paracetamol or Ibruprofen to help get rid of the pain. Getting the pain under control means that you are more relaxed and that your muscles are relaxed, as when you are in pain, your muscles and your whole body tenses. Instead, I waited a while, and sat or laid on my side with my knees tucked up under my chin against my chest to try and encourage things to pass. I also had a walk about, hoping gravity would help, but still, no relief! So, I resorted to going to the bathroom and sitting with my bag off for 20 minutes with an incontinence sheet underneath my stoma in the great hope that things would get moving. I massaged around my stoma and gently pushed around it and luckily, this started to get things to move, slowly. The relief I felt was just fantastic, it was like a huge weight had been lifted off my shoulders. Even just a bit of output shifting reassured me that things were passing through. After those 20 minutes, I cut a new bag a bit bigger than normal (25mm instead of 23mm) to give my stoma a bit more room to breathe, so to speak, as Stacey was quite swollen and obviously not amused! I knew potatoes and chips were harder for me to digest and pass through, and I had eaten quite a fair bit of potato-based foods and steak pie that day, so it was probably an overload of both. The first time I had a blockage I had had some steak pie, so I am taking it that those were the culprits together this time. However, it’s vital to remember, that some people are totally fine with chips etc, it is different for the individual. What causes a blockage for one, might not for another, it is all trial and error. Mental note, remember to chew your food properly. The fact that I have a tiny stoma that’s even tinier where it comes out of my stomach at skin level at the mucosal junction doesn’t help these matters, mind, but you work with what you’re given.

Over the next few days, things were still painful passing through, and everything felt like such a chore that was trying to get through. In fact, even though I probably shouldn’t have, I stopped eating for pretty much 3 days and just drank lots of fluids. Stacey was pinching and pushing and pulling, quite the wriggler on my stomach to be honest, just making sure I don’t forget she is there, right? 😀 Using my dilator had been getting easier, but it was still very uncomfortable and painful and I still could not manage to push it in as far as was needed. At one point, the pain nearly made me pass out, and I just thought to myself “stop, you aren’t doing this anymore, ring your stoma nurse.” Using the dilator had become impossible and I was in constant pain and petrified to eat.

So, over the next few days, I went to see my stoma nurse, and she checked Stacey for me and put her finger down her to check my blockage had cleared and that she wasn’t over-tight. Luckily, the blockage had fully cleared and she said that, even though Stacey was tight, it wasn’t at a dangerous level and that she could fit her finger down. She suggested that instead of using my plastic dilator, that I scrap that, and with using a medical glove to cover my hand and some lubricating jelly, that I use my index finger. She showed me how to dilate myself with my finger even though, to be quite honest, I was really not in the mood to be poked and shoved anymore and was very sore. To my pleasant surprise, this was a lot easier and no where near as uncomfortable as using the dilator. I think the main element of the fact that I have more control over my finger and can feel exactly what is happening helps me a lot, I do find that things do affect me a lot psychologically and I have to be psychologically prepared before I do anything, or I just start to fall to pieces. Over the next few days, things got easier and less painful, and I took Codeine Phosphate for the pain. Some people have to be careful with Codeine as it slows down the bowel and Peristalsis, so it is vital that you check with your stoma nurse or doctor before commencing taking any painkiller you have not taken before or in a long while. I was also advised to stick to a low residue diet for now, so no things such as raw fruit and veg, Chinese food, wholegrain and things with a lot of fibre and caffeine, for example. I have to ring my stoma nurse tomorrow, and it was suggested to me that if things weren’t much better or shown much improvement, I would have to see the consultant again and very possibly get booked in for another operation to refashion my stoma. Luckily, fingers crossed, things have improved quite considerably, but I still aren’t eating a great deal and still get a bit of pain. We will see what tomorrow brings!

On the emotional side of things, I have been finding things quite tough to be honest. The other day, I just wanted to literally rip the bag off my stomach, get rid of the whole thing and just wished it had never even happened. I thought “Why me? What did I ever do to deserve this? I want to be normal.” Then again, what is normal? I can do being strong for so long, but there does come a time where I just get well and truly fed up and wish I could just go to the bathroom like most people. There comes a time where I just wish I could rewind and never ever have Crohn’s and grow up like a child should do. I missed out on so much, and that hurts me and always will be something that gets me. All I remember of my life is Crohn’s, I don’t have many good things to remember as things go, not without things being masked by pain, trips to the hospital, spending my life in the bathroom or getting stomach ache at the sight or smell of food. I wanted to be like the other people at school and go on foreign visits, partake in the musicals at school, be able to run around and play Basketball like I loved without having to sit down or rush to the toilets and be embarassed. I want to be able to have a flat, toned, tanned belly that if I fancied it, I could just show off without even having to worry a tinge about getting funny looks or comments off others, as much as I’d try to rise above it and do it anyway! It takes a lot of guts, pun intended. I don’t want to have to worry for the rest of my life about having an intimate relationship with somebody and my bag being there, or whether when I meet someone or fall in love worrying about what they might think or whether they’ll accept it. Even if it didn’t bother them, I’d still think about my bag getting in the way and whether I have to empty it or fold it up before even being able to have intimacy as adults do. It’s just the things like that, that really get to me sometimes. Most of the time, I rise above it and just remember that I am alive and it is Stacey that saved my life, but it still makes things difficult. I just keep reminding myself that at the end of the day, somebody who loves you will love you and your body, bag, imperfections and all. Somebody who loves you will take the time to learn about it and understand it, even if it might confuse them or be a shock for them at first. People who appreciate you for who you are will see you as you, not you with a bag, that’s just one thing on your body. It doesn’t take away your personality or how people see you in the street. Honestly, it’s natural to get insecure and worry about having a bag, even the strongest of people have their moments and it is completely fine to have them. I try to be as confident as I can, but truth is, yes I am proud, but I am only nearly a year post surgery, and I am still growing to adjust to it and accept it. Some people may never fully accept having a bag in all honesty, but you adapt as best as you can and deal with the cards you are given in life. It’s your only choice, especially when it’s live or die.

Despite everything, I do appreciate Stacey. This time last year, I was just three days away from potentially dying. I was in agony and to be quite honest, wouldn’t have cared less if I had died. I was done with fighting. Even now, that chills me. It was so close. But, I’m here to tell the tale now. That’s the main thing, and for that, I am so grateful and forever thankful to the surgeons that saved my life.

Better a bag, than a box.

Ostomism, not Pessimism™.

Now you don’t see my bag 😀

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One Response to “The Ostomy Rollercoaster.”

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