Tag Archives: Colon

Hospital appointment with the dietitian

7 Dec

I went to see my dietitian yesterday at hospital. Been having a few issues with Stacey again with what has felt to be lots of trapped wind, pressure, spurts of watery output and dehydration. What set this off, I do not know, it could be a bug, something I ate, partial obstruction again, who knows? She’s been a bit better today after the initial feeling sick and horrible this morning.

One of the issues at the moment is that I can’t seem to put on weight no matter how hard I try. My appetite keeps changing as well. One day I can feel like eating loads then the next day I’m just not interested. There seems to be a few things that don’t agree with Stacey the best and give me some form of hassle, such as onions, lettuce, apple, Weetabix and green vegetables give me lots of wind which gets quite uncomfortable.

The dietitian was very helpful at my appointment and basically said that we have to try and get my eating habits into more of a regular routine. This is because my stoma needs to have a regular pattern so that it can get used to when it’s outputting and almost learn when to expect food etc, hopefully narrowing out some of my problems in the long run if I can manage to get some sort of routine. This is easier said than done, as I never feel like eating in a morning and if I try to it can make me feel quite sick, but I guess we have to try these things and have a good go at them before giving up if there’s a chance it might help me in the long run. My dietitian said ideally I should be having 3 meals a day and eating small things in between if I can so that Stacey can adapt to a routine and I guess, in a sense, so that my bowel doesn’t sleep for a lot of the day. By having breakfast, this means that my digestion process will be kicked off a lot earlier in the day, as opposed to leaving out breakfast and my digestive system and stoma not really having to bother with anything until 1 or 2pm.

I’ve been advised to keep away from green vegetables especially at the moment, and fruit with seeds, skins or pith, such as satsumas and strawberries, grapes and apples. This is because the skin and pith of the fruit and vegetables contains the main source of fibre. I’ve been advised to not have a high fibre diet, but that fruit in fruit juice in tins where the pith and skins have been removed should be fine.

Making sure I have plenty of fluids is another important matter. Ideally, because I have an ileostomy, I should be aiming to drink round about 2.5 litres a day…Mad this seems! This, however, is because of my body’s inability to reabsorb what I drink and get what it needs from it as opposed to a person who has their colon.

Typical digestive system of someone with a permanent ileostomy.(Credit to Convatec for this image)

Typical digestive system of someone with a permanent ileostomy (No colon or rectum etc)
(Credit to Convatec for this image)

That’s like drinking 1 and a quarter big bottles of cola…I just don’t see that it’s possible for me, that and the fact that I suspect I would be needing to empty my bladder all the time, and I’ve just escaped years spent on the toilet. My dietitian said this will be the case at first, but once my kidneys adjust to having a lot more fluids then it should calm down and I won’t need to go as often. The drinks I’ve been advised to have a lot of are things such as the flat sports drinks (Lucozade Sport and Powerade), squash, fizzy drinks, tea with sugar, as they provide extra calories especially. Sports drinks such as Powerade also have salt in them, which is vital for me as I need extra salt because of the fact that my colon is missing.so the nutrients I need need a lot more help being reabsorbed into my body as opposed to a person with their digestive system intact.

A lot of information to take in and a lot of trial and error and perseverance will be required. Even though I had my operation over a year ago, my dietitian said that my anatomy will still be adjusting to its new plumbing, so to persevere and give it time and try to get myself into a routine with my food and drink.

I hope you are all well. One more week left for me at University before I break up for Christmas, which will involve lots of work sadly. Going to visit my boyfriend for a while though so I am looking forward to that! ūüôā

Best wishes.

Amy & Stacey Stoma xx

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Making some progress…

18 Jul

So I’ve been doing my dilator every day for a week now, and even though it’s been too painful to push it completely in, I’ve managed to get it most of the way in, a bit further each day. I never look forward to it, but it’s something that has to be done, and I have been through¬†a lot¬†worse… I just keep reminding myself that when I find myself getting upset. Don’t get me wrong, I’ve felt disappointed in myself that I haven’t managed it all yet, but at least I have been doing it and not bottling out. Stacey has felt so much better really since the day after I started using my dilator. She no longer feels tight or gravelly and painful when food is coming through and I am finding that I am having a more regular pattern to my output if I eat properly in the day. I am so pleased that the pain has subsided and now I don’t feel worried that my Crohn’s is coming back or anything along those lines. I shouldn’t have thought it, but having suffered with it for the vast majority of my life, it would not be natural if it had not crossed my mind, no matter how¬†pessimistic¬†or¬†optimistic¬†I was about it.

On the anaemia front, it is still quite significant, but I have been taking my iron tablets & have been given some anti-sickness tablets if absolutely necessary, though I am not keen on taking anti-sickness as most of them make me sick, weird I know! Everything else in my blood results was fine, but I need to keep¬†persevering¬†with taking the iron then if things still don’t improve they are going to look at giving me iron infusions. Still feeling very tired and find it hard to get warm once I’m cold and stay warm, feeling dizzy and weak, but as I always tell myself,¬†things could be worse. Just got to get on with what you can and try to keep smiling and enjoy yourself! ūüôā

Since last time I wrote, I have been working a little bit, seen friends and had some great days with them, had an Indian Takeaway for my Gran’s Birthday and went away for the weekend just gone with my Mum! We went to Tynemouth to see The Wanted perform at Tynemouth Priory and Castle, which was just phenomenal, definitely up there in the best nights of my life. I had an absolute ball, jumping around non-stop for an hour and twenty minutes, made some new friends, sang my heart out and got all of The Wanted boys to notice me and wave at me/blow kisses at me/make peace signs at me ūüėÄ Without Stacey, I wouldn’t have even been able to consider it, it would have been a definite no-go this time last year or the past 15 years. Then after, we stayed overnight and had lots of giggles, then the following day we headed back. On our way stopped and enjoyed a gorgeous Sunday Lunch, yum! That’s another thing that Stacey has allowed me to do…¬†enjoy¬†my food, and besides enjoy, actually be able to eat! It is just amazing, more than words could ever explain! It makes me well up just thinking about how lucky I feel and happy to have her and be here to experience lots of new things without worrying about being in pain or not being able to make it to the toilet in time. Even the things I did experience, I never properly enjoyed, especially towards my operation I would have panic attacks and bad anxiety as a standard thing going out. I also met ¬†Donna Mear, and her daughter, who is a lovely lady with an ostomy, even though it was a brief meeting! It was really nice to finally meet her. I also finally found the guts ¬†(pun intended) to go and get my nose pierced yesterday, and have a cute, little diamant√© jewel now as a nose piercing! ūüôā

I have been thinking a lot recently back to this time last year, with it coming up to a year post-op next month. It is truely amazing how quick things can turn around in such a short space of time. It is amazing how one month, you are heading for death’s door, then the next you are practically at it, to the next having your life saved then building a life you have never had or have imagined before in the months that follow. Going through my photos on my laptop has made me really emotional, just to see how ill I looked last year and over the years, and how the pain and illness shows in my face and body, no matter how hard I tried to hide it. I remember now how I just wanted to give up and no longer carry my life on this time last year, I had had enough and was ready to give up the fight, but something inside me just kept me slowly pushing through it and as the saying goes:¬†“When your mind says “give up”, Hope whispers “one more try” .”¬†There will be some of you probably reading this, who feel how I did when looking at others who had an ostomy or had got better before my operation, in the sense that you think “Will that ever be me who gets better?”, “Will that ever be me who has a life?” and “What have I done to deserve all of this pain & suffering?”…All the questions you go through in your head like that when such a horrible disease is trying its best to overcome you and destroy you, no matter how hard you try and fight. The truth is, it¬†will¬†get better. You might be reading and be thinking “well, it’s easy for you to say that…” and I can totally understand your point of view, because I did¬†exactly¬†the same, but take it from me, somebody who has been there,¬†it will, it won’t last forever.¬†It may sound a little clich√©, but¬†believe¬†that it will get better, even if there’s only a tiny bit of you that can believe, because as long as you have hope and faith, you will get there. Have faith in those who are going to make your life better too, they are committed to making you better. Have faith that your life will turn around and you will be able to do things you have only been able to dream of, even if that is something simple like dreaming of a life where your days aren’t spent counting the tiles on the bathroom wall as you hopelessly sit there clinging on for dear life in agony while the whole world and it’s wife drops out of your backside, or refuses to ever make an escape, depending on your “lovely” devil child of a Digestive System.

To give you an idea of how ill I was inside, here is a photo from my Colonoscopy over three years ago now, before I started Infliximab:

Image

Pretty grim, eh? And to think I survived another two years before surgery, with that getting¬†worse,¬†and strictures left, right and centre, I have no idea how. That is just a small portion of my colon, I would dread to see the¬†entirety¬†of it! I remember my consultant at the time coming through to me after the scope and saying “your intestines are shot” and explaining to me how he has never seen Inflammatory Bowel Disease so bad more than a few times in his career, let alone on a teenager.

The best thing about it all? Yes, Infliximab failed, all my medication and treatment options failed, but I no longer have that now. The devil colon has gone and will never return! Here I am, alive to tell the tale, medication free & I can very happily tell my devil colon & Crohn’s Disease to go to hell! I fought you, and yes, I won!¬†

Stacey, we make a great team! ūüôā