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 :)

My heart and soul

I'd like to talk about my boyfriend who has been with me trough the hardest time of my life concearning my illness. When we met I already told him about my illness at an early stage. I also told him that here was a pretty strong possibility I would be having an ileostomy sometime in the future, not sure when. It might be after few years or when I'm 60 but at some point it would be part of me. I was really scared to start a relationship. Firstly I can't imagine anyone really loving me and finding my body, with all it's scars and flaws, beautiful or hot. But my boyfriend did, right from the start. The only thing he ever said negative was about my scars that my tummy looked a bit sad and that he had noticed my scars, that's it. Up to this day (we've been together for 6 years) he has never said anything negative or hurtful.

I never imagined I'd find a guy like this, who'd see who I am inside and not look at my disfigured body only. Then again, this is my first relationship so I have no idea what guys would have said to my about my scars but the thought of getting any negative comments kind of kept me away from men for a long time. I did want to be loved and I've always wanted a relationship but never REALLY believed there was someone out there for me. It hasn't been easy with my boyfriend and I and my bad self-esteem has been in the way of our relationship couple times. It seems that as I can't believe someone would really love me it has been hard for me to show I love someone back. So it hasn't only been me thinking about wether my boyfriend loves me or not, but he has been thinking about the same thing. Luckily we were able to sort things out and we are still here, together.

Getting my ileostomy has been hard on both of us mainly due to my depression and very negative thoughts about it. I have tried to hide my feelings about it, as I wanted my boyfriend to form his own opinion on ileostomies without my bad influence. But now that it's here I can't hide my feelings anymore. But I can say that my boyfriend makes everything a little bit easier for me. He has even helped me to clean my stoma and to change the flange almost every time. I think that's true love :) And he hasn't said anything negative about it, he hasn't even flinched. We talked about my stoma with him the other day and he just said that it was a suprise for him how easily and fast he was able to accept it and it didn't feel that bad at all when he saw it the first time. The only thing he struggles with is the fact that I'm in so much pain and I have to change the flange so often (2-3 times a day). I cry A LOT! And I have even once screamed and thrown all my stoma supplies on the wall in the middle of the night as I had to change it... He never said anything else, except that he loves me. Seriously I woke the man up at 3 a.m. screaming and crying. He woke up, came to help me and when I finally calmed down and we got back to bed he said "I just love you so much" turned away and went right back to sleep. Now if that isn't love I don't know what is!

No I'm not saying he is perfect or that our relationship is perfect, it's not. But I'm really lucky to have such on awesome companion in life from whome I get support and most of my strength. I'm not sure if I'd be here anymore without him. Life is a struggle but as long as you have the right people around you, you can do anything :)

My ileostomy

I shall start by telling about my ileostomy. As I said in the first text I wrote I am not happy about it. It has nothing to do with the bag itself but rather the stoma. For some reason my small intestine was too small to pull enough on top of my stomach, so this meant that the stoma itself is really low and partly even under my skin. Very painful! The surrounding is filled with wounds as the feces get to the skin all the time and no flange/wafer has helped the situation. Now I'm in a good place in the sense that things are getting slowly a bit better with the wounds. But the biggest and most painful is at the opening of the stoma which meand the stool comes to my skin all the time and there is nothing I can do about it. The stinging is crazy and I really can't see myself living with that pain for the rest of my life.

I spent two weeks at the hospital due to my surgery. After first 5 days I had to have another surgery as the surgeons had noticed a hole inside my surcigal scar that was leaking stomach fluids out. So that had to be taken care of. After this second surgery I was horrified to wake up as I nad NG tube down my throat! Man I hate that tube so bad! it's like legal torture and so bloody painful! Anyone here who has had any help with NG tube? Grr it's horrific thing! Though of course it's not really there to torture me but to help, it just normally just makes me feel 100 times worse.

After the surgery itself I was almost painfree, thanks to my anesthesiologist who figured out a way to numb my stomach without using epidural (which I also hate). So I was super happy about that until 2 days after the surgery I was given the permission to eat food... OMG the cramping pain was so bad I don't think I could even imagine anything worse. It was like someone stabbing me with a hot knife. I told the doctors the pain was so bad that if I had a knife on the counter I'd stab myself. Well all the pain meds the gave me did NOTHING for the pain. Because of this I also ended up spending more time at the hospital then I normally would. 

Anyway when I was released from the hospital the cramps stopped for a while and after few days they came back. I also started experiencing nausea which I still have. All this is normal I'm told...  So not to make things too easy I still have really bad cramps every time I eat. And since in my country pain medication (except for ibuprofein or parasetamol) is considered as drugs, they are very rarely given for pain unless it's considered extremely severe. And of course some little cramps in your stomach are nothing, so I should just keep quiet and struggle trough the way I see fit. But the cramp pains are taking every ounce of my energy that I'd need to change my flange 2-3 times a day. If I didn't have the cramps I think I would be a lot more positive about this whole thing even though my ileostomy is not an easy one. But right now I just sleep, try not to eat and change my stoma stuff.

I would so like to be one of those lucky people who say that ileostomy is the best thing that happened to them but I just can't, and that makes me angry too! I feel like a whiny little child with my ileostomy but at least I'm a live! Then again, there are times, when all the pain gets me, that I wish I wasn't :(

At least I have this little girl to keep me busy :)

Welcome

Hello everyone!

I'm happy if my blog caught your eye. My name is Halla and I wanted to start this blog to talk about all kinds of issues surrounding my illness and a recent ileostomy I had about a month ago. In my country there are not a lot of support systems or groups for people with ileostomies and I really needed something or some place to just tell what's on my mind..  I also hope to talk about things with people who are in similar life situation as I am (though to follow my blog you don't have to be in a similar life situation :D).

I am in my thirties, I live with my boyfriend and our dear baby dog. No children and we are not planning on having any either (and yes I do like children though I don't want one). I've worked as a kindergarten teacher until 2010 when I had to quit, due to my illness, Ulcerative Colitis= UC. I was diagnosed first in 1996 and by the year 1997 I already had a j-pouch which saved my life, without it I wouldn't be here. I also had a loop ileostomy for about a year before it was reversed and I continued my life with j-pouch. This year was the hardest year in my life and I really hated my ileostomy. It was super painful, smelly, easy to notice and it made a lot of noise. But the worst part was that it was so painful. I was the happiest girl in the world when I got rid of it and felt like now is my time to shine.

It took about 4 years until I noticed I had my first stricture close to my j-pouch and at that time I also got the diagnose of pouchitis . So this meant my illness was lifting it's ugly head again. It wasn't long until my doctors realised nothing helped the pouchitis just like in the previous years no meds helped my UC. So I started a slow life of waisting a way. At this time I was already 22 years old and wanted to study a profession. It took me 4 years (normal time would be 3.5 years) to get my Bachelor's Degree in Social Services, but I did it. It was both the best time of my life and the worst. I was in a lot of pain, went to the hospital at least once a month because my strictures. I also underwent 2 surgeries during this time and at the same time I tried to live my life as a young woman and a student. For some reason I always knew that this is the time to enjoy, thought it was really hard. As things would never be the same again. And I did enjoy, I loved being a student, living on my own and taking care of myself.

But then I graduated and I had to start working. I also started my first relationship at the same time and moved in with my boyfriend a year after we had met. I worked as a kindergarten teacher for 3 years after graduation until I had to stop. My illness didn't allow me to carry on the same way I had before and my energy was completely gone. The doctors had already suggested permanent ileostomy for me years ago but I still wasn't ready for it as in my mind ileostomy would mean my life was over. So I fought against it for several years until I had to do it. Not because I wanted to or because I felt like it would make my life easier but because of money. I had been declined already twice by my insurance company for health benefits since they thought having pouchitis is not a reason for being unable to work... The only reason they were able to decline me was the fact that I hadn't taken all the necessary treatment for my illness, which to them meant ileostomy.

So a month ago I got my ileostomy. Right now I have nothing good to say about it. I'm in way more pain then I ever was with my j-pouch and I can't really see a happy future in the horizon. It has only been a month since my ileostomy so it might still get better, but I doubt it. My permanent ileostomy is built way worse then my loop ileostomy ever was, so all my worst dreams came true on this one. All my doctors and surgeons assured me that ileostomy will make my life so much easier and better but I knew it wouldn't. I was so hoping I could be able to say that all  my fears towards it were silly and I should have taken it years ago. But sadly all I'm left with is the fact that I can now tell my doctors and surgeons "I told you so" which isn't really making me feel any better. But time goes by wether I want it or not, so all I can hope is that things will get easier with time.

I still don't know if I will get health benefits from my insurance company but I do know that it will take several years before I will be able to work, if ever. My dream is to be able to enjoy life at least in a way that I could do normal things, go to places and enjoy good food, maybe even travel. My second dream, though not the biggest one, is to be able to go back to work one day, even as part time if necessary.

So this was my medical history in a nutshell. I'm sure I'll talk about it more in time but now you'll know where I am coming from :)