Today is my birthday

Today I'm turning 33 :) I feel so super old! I'm not sure if it's the age or all the stuff Ive gone trough in my life that make me feel like an old hag. I know that sorrow, paind and suffering will make you look older then you really are and I really feel like this, though my friend assure me it's not so :D But I just feel like my life has already gone, all the good days are behind me and now I'm just waiting... For what? I don't even know. I'm waiting for my life to just pass me as it has for the last 5 years. And these were supposed to be the best years of ones life! I'm an adult but still have my whole life ahead of me. But as I'm not really looking foward to the future it surely doesn't feel that way.

But I don't want to only moan about my sorry ass life :D I do try to stay positive it's just that... Well I'm not a very positive person to begin with. I always expect the worst (except in this ileostomy situation as I really did hope for some improvement on my life) so that when something nice happens (rarely) I can really enjoy it. but I'm not so sure if that's the best way to live. I need some happiness coaching or someting :D How to be positive for a day :D

Anyway this is me, with my new short hair turning 33 :D No make-up and no extra special posing, just me the way I am. Not very pretty, rather odd looking gobbling... Or a troll as  my boyfriend affectionately calls me (I'd rather be a fairy XD).So happy Birhday me and lets hope this year will be better the the last one :)

Will I ever be happy again?

Well I'm having some hard days again. I just can't believe that after all that persuasion from my doctors and all that reassurance about how my life with stoma would be so much better, all I'm left with is... Well nothing. I can't say my life is any better due to ileostomy and still I'd rather take back my j-pouch though life with it was truly difficult and painful. But nothing has really changed except that with j-pouch I was able to do sports, go swimming and just be and walk like a normal person (as long as there was a toilet close to me!). Now I am unable to bend to any side, I have only two positions to sleep in, I still need to run to the toilet every hour during night time and I still need to know where the toilets are whenever I go somewhere.  The worst thing is that I'm not able to use my body at all the same way I used to... I can't move, unless I hold on to my stoma. I can't walk too fast unless I hold on to my stoma. I also try not to breathe while I walk so it would be easier which, as we all know, is quite difficult task so I feel like fainting most of the time.

Also I have  noticed that the wounds around my stoma are getting bigger and the big one is also corroding or something, it's becoming more of a hole on the skin and REALLY sore. I just contacted my stoma nurse so lets see what she will say. I'm so afraid this will never end with these wounds, but someone HAS TO figure out someway to help... I do think that it would be a lot easier with the stoma without the wound as it seems to be the one that's hurting all the time even though there hasn't been any leakage on the wound for weeks. The wound on top of the stoma is also pretty painful but not nearly as bad a sthe bigger one. I don't think I'll ever be wound free as the stool comes from under my skin, so that will be a problem for the rest of my life. I'm just worried that things will never get any better until something is done with the stoma itself... But as my stoma nurse said, that would be impossible. That's really not a happy thought as all my doctors were so sure that I'll get rid of all the pain when I get my ileostomy. Oh well... Never trust a doctor :)

Not only bad news all the time. I have noticed that all my cramps are now totally gone! It's funny as it has happened so slowly that I haven't even noticed it until yesterday as I ate a BIG dinner and was a bit scared about the pain. Then I realised that I haven't had any pain (from the cramps) for few days. So now I think I can safely say that the cramps are gone, and I'm SO HAPPY about that. Don't need to be afraid of eating anymore. These small joys sometimes seem to be overshadowed by all the bad stuff, but just wanted to remind myself as well, that things are improving, though slowly, veeeery slowly... :D

Pancaking... (no it has nothing to do with those delicious pancakes)

Now I have started to experience a very nasty thing called pancaking. It's due to the foods I eat. When ever I eat rye bread and lots of fibers I don't get it but I've had a low fibre dies for years and years so it's hard to start eating the things I haven't been able to eat for so long time. Plus I try to keep away from too many carbs and as we all know bread is full of those. I've tried to eat a lot of vegetables (those I dare to eat) but it doesn't seem to help. Maybe pancaking can also be due to not drinking enough?

For those who are unaware of what pancaking is, it's when the stool is so thick that it gets stuck on the opening of the flange where the stoma is. This is bad as it can lead to leakage and that's bad as leakages break the skin and can cause burning and stinging sensation. I have noticed that my stoma really doesn't like this pancaking AT ALL! It starts to sting and hurt right away. But haven't figured out yet how to  make it stop. So now I just eat loads of painkillers and try to manage for the whole day and night without changing the flange.

I so hope this would get easier at some point but it seems like I take step foward and two steps back. And all the stoma nurse can do is just keep telling me it will get easier... Yes, well WHEN is it going to get easier? And what if it doesn't get any easier, then what? I'm already so tired of being cooped up here in the apartment and not able to really go anywhere.

I'm also supposed to be singing in this Christmas song concert in December which will be fine I'm sure but I'm dredding the rehearsals as I either need to wake up super early to change the flange and then go, OR change the flange after the rehearsal so I get to sleep a bit longer. I always have to have 2 hours of caution time with the changing as I never know what's going to happen. 1h 50 minutes has been the longest it has taken me to change the flange so I want to reserve at least that amount of time for it. But the problem is that if I'll leave the flange on for the rehearsal I won't be able to relax at all as I'm worried it will leak. And the place I go for rehearsal has no place to change a leaking flange. Oh I SO HATE this whole thing. I just want somekind of life, that's not too much to ask...
AND there is still no snow here! I'm so hoping we'll get snow at least for Christmas :)

Happy things in my life

Well life is getting me down right now so I tried to list all the good things in my life that make me happy, just to show myself how much I have to be grateful for!

1. My boyfriend, who loves me even with a poopbag and takes care of me when ever I need it.

2. My little baby puppy (though she is already 5 years old) who always puts a smile on my face, no matter how bad day I have.

3. My best friend R who also puts a smile on  my face when ever I see her, even though I've had a bad day :D

4. All my other friends who are very comforting, emphatic and helping me to cope in any way they can. I'm blessed to have such good friends around me and haven't lost any even though I'm not the most energetic and happy person out there.

5. My family. They are surely not perfect but when I REALLY need them, they are there for me, if not in other way, at least they often help me financially. Without them I'd already be in huge debt and maybe even in jail as I could never afford all the medical stuff I've had to pay. And especially my mom, who puts the little she gets, into helping me if needed.

6. My boyfriends family. They have helped me/us financially a great deal as well. I'm not close to them at all, but still they have also made it possible for me to pay rent and my doctors bills.

7. Nature! Iive in a place where there is nature around me and people appreciate it.


8. I can move my arms, my legs and my head is working (not to it's best ability, but working still). I can go to places and live independently. That's important for  me, though I do know it's possible to be happy even when you are not able to do the things I mentioned above.

9. When I get sick I always get help. In my country you go to the hospital/doctor first and then bill arrives after. So even when I don't have the money I can still get treated (the cost for treatment isn't that high here, but for a person with very little money it still can be a big problem).

10. I have  a long hair! Due to my  illness I don't have much hair left so growing it long has been a long road :D Maybe a silly thing to be happy about, but as I have been worried to loose all my hair in many occasions, to see it long is a happy thing for me :)


11. I have food (even too much) in my fridge, roof over my head, nice bed to sleep in and clean water to drink. I don't have to be afraid to wake up guns blazing on a war zone or outside my window. I'm safe and sound :) this is what I always think when I get really anxious about my illness, stoma and all. Usually it helps :)

(12. Oh and I collect dolls... So dolls make me happy too :P) 

Stoma talk (WARNING picture of a stoma!)

Couple days ago I went to the stoma nurse to see how well/bad my stoma and wounds are doing. It actually looked pretty good except for the wound at the top and another, bigger one, on the side. The nurse told me that I might have a skin condition called pyoderma gangrenosum or then some other similar skin disease. Oh well... That's nice, as if I don't have enough on my plate already. She gave me some cortisone cream to put around the wound so lets hope that helps at least a bit. Otherwise I might even have to start taking cortisone pills which is something I have refused to do since the first time I was given such meds when I was 15 years old. Because of them I gained 35 kilos and my body was full of horrible looking strech marks. So lets say that cortisone left its imprint on me for good...

Also one thing I'm really wondering about it that every time I go to the stoma nurse and she cleanes the stoma and put on a new flange and all, I have to take it off within few hours as the stinging is just horrible. How can it be that she is so bad at this that now I'm dreading to go to her as all I end up with is just more pain... I told her that I need to be very precice and meticulous when I apply the adhesive paste around the stoma but she just told me that she's not meticulous at all and just puts stuff quickly together. Ummm okay... I'm left to suffer because of that then. Okay it's just me having to change my flange after I come home, but still the changing is always so exhausting for me and I don't like doing it unless I really have to.

Now I'm trying to hunt down this security ring or what ever it's called that allowes people with stomas to go swimming (yes I know you are supposed to be able to go swimming with just your normal flange but I really don't trust it to hold under water). I saw this video of a girl applying it when she was sitting on a rock beside a lake (or the sea..). It was transparent and was applied on the edges of the flange to give more security. But I really can't find the video at all, or any firm that makes those covers... If anyone knows what I'm talking about and knows where to get them I'd really appreciate the info :)

This is the flange I wear: eakin Pelican Convex, the best for me for now. My stoma is still changing as it's only 6-7 weeks since the operation. In addioton to this flange I also use stoma powder, cohesive paste, AquaCel strips, some skin care lotions specially for the stoma area and wound gel Prontosan that keeps the wound clean and disinfected. In addioton I also have Cavilon Barrierfilm (?) but I haven't used it much. So all this is the stuff I use on day to day basis with my stoma. My dream is to get to the point I'll only have to use the flange only, nothing else except occasionally. But I'm pretty sure in my case that will never be the case.

Tough times getting easier?

Well I can't lie to you guys, as it has been tough with my ileostomy. I'm totally okay with the bag itself and the way it looks and all, but the pain it gives me every day is hard to accept. I've also started to get pain in my back due to the fact I can't walks straight. Also I've started to have pain on my both sides and I'm afraid it might be due to using too much parasetamol. I can't be sure though.

But all hasn't been so bad. I got rid of my tummy corset (some sort of surgical corset not really stoma related) I had to use for 6 weeks after the surgery. And Oh boy do I feel better without it! Before I had my stoma in my mind all the time, I couldn't ven move in bed properly and sleep as it bothered me so much. But a big part of the problem was the corset as I felt it all the time, so I also felt the stoma all the time. Now I can sleep better and I don't wake up every time I move in my sleep :) Also I'm able to go for a day and night without changing my flange! Which is great, it was mentally exhausting for me to have to do it twice a day.

I was also able to go out a bit for a movie on Halloween which was great! I had pretty tight dress and
no one noticed anything! Even I didn't notice my bag even though it got almost full at one point :D It was really amazing. AND I was able to eat salad and rye bread, both of which I love! With my j-pouch it was horrible torture to eat either so now I'm happy to eat them as much as I like. And the rye bread is actually good for my stoma!

I still have a long way to go, but at least I can now see some small light at the end of the tunnel :)