Long story short about swedish treatments, want to compare to yours!

[mr sweden]

posting here aswell as it is a story, admin can remove the one thats wrong posted!

Hi!

my, im phil and im 24 y o and lived with this ******** since 1999- may 17th.
i been doing treatment with kortison(prednisolon) both in pills u put up via rectum, asacol(pill), prednisolin(both pill and liquid), entocort(liquid), lidocain hydroclorid(liquid), etc, etc, nothing ever worked for me, tried remicade injection that should take 3-4h to inject and humira other injection that im still doing, 2 times monthly, now they raised it to 4 times and i dont feel any diffrence. did surgery 3 times, taken some of the colon away, 50centimeters, had ilio stomy and colostomy at the age of 14-15 for 16 months, worst thing i had experienced in all my life during that time i had stomy, not even sure its called stomy in english but i hope u understand anyways. now last time i was hospital i was offered to do something called kocks reservoar because it had good results on many ppl. i thought the sound of it was perfect but when i got to the hospital they said "nono, ur condition need to be much better so u cant expect that surgery to happen within a year or even 2". they said my colon and last part like 15cm up my rectum was a mess but while i was there they did do a coloskopi as far as they could and saw it look better than we thought, good news i thought, first good news in ages.

as far as they could on the coloskopi i will tell u now, they said its so tight rectum and 15cm up that they wouldnt even b able to put a pen inside there, jippiI! no wonder it feels like shitting a bowlingball threw a straw. everytime when im at the toilet it hurts so bad i dont know where to go, i cant hear any noise outside or even have the lights on, because it distract me from trying to push, and believe me i push for all man kind!

now i did cutting of abscess, under all my years i never heard of it until now! strange.
but anyways they cut it open so now all pus and blood from it coming from my new a-hole which is not fun at all, dipers or ladystuff i have in my boxers. not cool.
i even fart via the new a-hole and that hurts like u couldnt know.
everytime i was on toilet which is like 40-50 times i wanted to die coz of the pain it caused. i got morphineshots at hospital, only time i could go to toilet proper.
i get painkillers now aswell, dont help anything, tramadol/tradolan, 200mg x2 morning and night.

pills i take in my mouth are:

pentasa 500mg 3x3
imurel/azatheoprin 50mg 4of them at night as they say its a sloweffecting medicine and it will take time until i notice some results.
omeprazol/losec 20mg 1 daily, (that is not enough)
flagyl(antibiotics if im not wrong) 400mg 1x2

injections: humira usually 2 a month now 1 time every week and its 40ml everytime.

well, i leftout so much and if u want to know anything more from my childhood with this, just free to ask, and sry for the languare, i dont know the english word for it but probably i will learn something here about the english terms and etc.

can u find any diffrences from swe hospitalcare to US or UK?

is there anything i didnt try?

in 2 weeks i goin to put new stomy if there isnt any magic happening or u get me any tips, i tried eating diet, blabla, nothing works, and im a tiny person as always, lost 15 kilos just in 3-4 months just now.

stomy is the last thing i want so please give me tips so i can push my doctors to do something new.

what do u think i should do?

regards

hoping for fast answers as i feel its an emergency

 

[Avw]

Hi and welcome! Sorry to hear you're having so much trouble.. I'm in a similar situation myself, except surgery is no longer an option. The only treatments I can think of that you haven't mentioned are Cimzia-but if you're already failing Humira I'm not sure it will help. There is also LDN (Low dose Naltrexone) which I've heard great things about and hope to try soon. And lastly, there is always Helminthic Therapy (Hookworm/Whipworm). We just started having clinical trials with Helminths in the US but I believe it's been used in Europe for quite some time. There's lots of information on all these treatments here on the forum, hopefully you will find what you need to present to your doctors.

Hope you find some relief soon.

 

[mr sweden]

Hi and welcome! Sorry to hear you're having so much trouble.. I'm in a similar situation myself, except surgery is no longer an option. The only treatments I can think of that you haven't mentioned are Cimzia-but if you're already failing Humira I'm not sure it will help. There is also LDN (Low dose Naltrexone) which I've heard great things about and hope to try soon. And lastly, there is always Helminthic Therapy (Hookworm/Whipworm). We just started having clinical trials with Helminths in the US but I believe it's been used in Europe for quite some time. There's lots of information on all these treatments here on the forum, hopefully you will find what you need to present to your doctors.

Hope you find some relief soon.

hi, i also thank u for fast reply!

ok, the cimizia u mention is that another injectionbullshit that works as good as water?
seen u tried the most of it, u also on cortison, dont u get very swollen of that? much water in ur body that stays and make u look like a pumpkin? atleast i get that way and i eat without stopping, never get full, very frustrating. the LDN other person talked about yeah, will ask my doctor what our answer in EU for that is.

u had any rest from ur disease at all? like a calm period of time when u feel good? coz those medication u on i have when i feel ****** in stomach! (mostly always) lol

and that donorthing u have in blue font, what is that all about? got my attention real quick there. can it help crohnppl?

 

[Avw]

Haha yes, Cimzia is another injection BS... It's worked for some, but for me, it may as well have been water. Actually I'm pretty sure it was making things worse by suppressing my immune system while I was dealing with abscesses/fistulas.

And yes, the steroids do make me swell and I HATE THEM... But it's the only thing keeping me from crapping my intestines out and being a skeleton. That, along with the TPN (total parenteral nutrition) are the only things keeping me out of the hospital. It really sucks being on steroids and IV nutrition because I am hungry all the time, but am supposed to be giving my bowels as much rest as possible.

Never really had true "remission", except when I was pregnant with my daughter. Humira helped for a little while, but I was never truly well.

The Stem Cell Transplant is a new trial, it is looking very promising. There are several members here who have done it, which is how I learned about it. It is almost the same thing as a Bone Marrow Transplant. You go through chemo to kill off your faulty immune system, then they infuse donor stem cells back into you, and you grow a new immune system- hopefully without crohn's or any autoimmune disorder. Even if the Crohn's does return later on, the old medications you built a resistance to will work again because you have a brand new immune system. There are risks involved, it takes a lot of time and a lot of testing to even get started, and it's very hard to get insurance approval- mine said they approved but changed their minds and denied it, working on an appeal now.

I've heard of a few people entering trials for this in the UK, not sure if you have pretty much the same healthcare as the UK but definitely worth asking!

 

[mr sweden]

Haha yes, Cimzia is another injection BS... It's worked for some, but for me, it may as well have been water. Actually I'm pretty sure it was making things worse by suppressing my immune system while I was dealing with abscesses/fistulas.

And yes, the steroids do make me swell and I HATE THEM... But it's the only thing keeping me from crapping my intestines out and being a skeleton. That, along with the TPN (total parenteral nutrition) are the only things keeping me out of the hospital. It really sucks being on steroids and IV nutrition because I am hungry all the time, but am supposed to be giving my bowels as much rest as possible.

Never really had true "remission", except when I was pregnant with my daughter. Humira helped for a little while, but I was never truly well.

The Stem Cell Transplant is a new trial, it is looking very promising. There are several members here who have done it, which is how I learned about it. It is almost the same thing as a Bone Marrow Transplant. You go through chemo to kill off your faulty immune system, then they infuse donor stem cells back into you, and you grow a new immune system- hopefully without crohn's or any autoimmune disorder. Even if the Crohn's does return later on, the old medications you built a resistance to will work again because you have a brand new immune system. There are risks involved, it takes a lot of time and a lot of testing to even get started, and it's very hard to get insurance approval- mine said they approved but changed their minds and denied it, working on an appeal now.

I've heard of a few people entering trials for this in the UK, not sure if you have pretty much the same healthcare as the UK but definitely worth asking!

wow, this msg really helped me a lot and i will chk up on everything with that stemcell transplants. do they found u donors or u have to find urself?

aah, remission is the word for being free from symptoms? haha, in sweden we call it "skov".

the disease is like a rollercoaster for us all mostly, ups and downs.
hope u doin better to and that u can quit on the steroids coz those stuff make u get MANY sideeffects, i couldnt sleep at all, i was a mess.

so u r not eating anything else than that thing u mentioned? i stopped eating for 3 weeks drinking only those energydrinks, like elementardiet, if u heard of it, even that resting of my intestense didnt do ****! then i took prednisolon like this, 40mg first week, then every week -10mg so 30-20-10 u know how i mean and then i got A LITTLE bit better. :boring: now back to same ******** and the only thing left is surgery but now since u gave me idea of stemcell i will definatly chk it out already tmrw. insurence wont b a problem in sweden since all medicalcare and medication is free if u r swedish citizen.

get better and i will update u on how it goes on conversation with the meachanics, lol

 

[Avw]

The programs here are focusing on sibling donor transplants for now. They think the results will be better and your body less likely to reject if the DNA is similar. Both of my brothers had blood work done to see if either are a match, waiting for results.

Fair warning though... I wouldn't put all my hope on the transplant. It takes time for pretesting and all that and you'll probably need something to help you manage in the meantime. That is what I am struggling with right now, and the steroids are the only thing I'm responding to. I could probably deal if it were just the Crohn's symptoms, but I have fistulas and abscesses running wild in there! So anyway... I would still look into trying LDN, Methotrexate, and maybe even the Helminths. It's always good to have a plan B.

Definitely let me know what your doctors say about those options!