Hi all, name is Jimena!

[Jimena]

First I have to say that my English is not perfect, but i hope you guys still understand what i'm saying I'm 26 years old girl from Finland!

I had my diagnosis when i was 16 years old, that was year 2002. I lost weight a lot, 25kg and weight only 40kg. My stomach was ill always after the dinner, the pain was really hard and i get weaker every day. Then one day i pass out when i was shopping with my mom. We went straight to the doctors, they take blood and send my papers to the hospital. Few weeks and i was atmy first colonoscopy, in anesthesia (my luck!). They see right a way that its Crohn's and its everywhere, in my esophagus, my stomach, my small bowell, and large intestine. I was in hospital week and get prednison, pentasa, and antibiotics. Then i get better and few years went well.

Then i got stomach virus and the diarrhea just stay "on". Few weeks and i was hospital again. This time only medicines didn's help. 4 years i eat prednison, azamun, they dried remicade = no help, they did surgery, didn't help and then started Humira. Humira was my savior. I use it 2,5 years and was better than ever, got my first fulltime job and everything. Sure,i got some side-effects, for examble my teeth and gums where inflamed and they first think it could be cancer inmy mouth, but it wasn't, thank god for that. They did gum-surgery and now itäs under control.

Doctors decided that Humira should be stopped and let's try if i can make it without it. Well, i did, first six months. Now i got a fistula in my butt :ybatty: I have my colonoscopy 2 weeks from noe and there will be gastrosurgeon with my GI and they exam that maybe-fistula. It's suck, my butt is so sore, i can't go pooping without passing out in toilet. I have dilatzeem-cream, Metronidatzol and cipro, and they make no difference. That thing in my butt leaks blood and some fluids and i feel like dirty alla the time. I have to take sickdays from work because i can't sit, and my job is in office, sitting 8 hours a day.

Now, i feel like grab and have some fever too.

Crohn sucks!!!! :ghug:

 

[chrisnsteph1022]

Sorry to hear about your troubles. Why did they take you off Humira if it was working so well? That's a long-term maintenance drug, not something you take off and on.

 

[Lydia]

I am sorry you are not feeling well. Keep going back to your doctor or get a second opinion if you have to. Living with a leaking butt and having fevers is no way to live.

 

[xJillx]

Hi Jimena! Give yourself some credit - your English is not too bad at all! I used to teach 7th grade English, and you are way better than most of my former students.

I am so sorry to hear that you had to stop taking Humira (Steph has a good point - why did you stop?!), and you now are having issues with your Crohn's again. That fistula sounds so painful; I am so sorry. I have Crohn's in with my rectum, and I know it can really, really hurt!

Good luck with your upcoming colonoscopy. Please let us know how it goes!

 

[David]

Awww, Jimena, I'm sorry you're having such a tough time I did want to welcome you to the forum and point you in the direction of our fistula support area. There's some great information there which might help.

All my best to you!

*hugs*

 

[Jimena]

Thank you all for your kindness!!! I have to say, i have dictionary in front of me so i can cheat a little

My doctor say that there has been some studys that Humira and Azamun doesn't go very well together, maynly because the cancer risk is higher for those who take both drug at the same time, in long-term. So we try if i can make without it, but obviously i can't. No they take MRI so they can be sure that there is no abscess of anything in there and then start Humira again.

That fistula is now my biggest proplem. I have had stricturoplasties (is that the right word??) in small bowells end which cause blocks and nausea. Now they are not the proplem anymore, that rektum pain and that fistula is.

David, thanks fot that link to fistula support, i have read everything what i can find in finnish, and there are not too much that fistula information in finnish. That's why i''m here

 

[Spooky1]

Welcome, Jimena,

its the best support site for us Crohnies and i'm sure your English will become perfect in time. we are all here for you. i hope your crohns settles down soon.

best wishes

 

[Crohn's 35]

Hi Jimena lovely name! :bigwave:

You are in alot of pain and I am surprised they just did not keep you on Humira only. Surgery doesn't always help. I would talk to your doctor in going back to Humira only because it was working. Your English is pretty good even if you are cheating!! Ha ha.

Where I am in Northern Canada we have a Finish community here, many people from your country doing amazing here. They make really good cheese!

Glad you are here, hope you stay with us. Hugs!

 

[tiloah]

Hi Jimena, welcome to the forum.

I am wondering why the doctors decided to stop the Humira if it was working for you. Was it because of your gums?

I hope you get some good information from the forum and find a treatment that works well for you.

 

[Jessi]

Hi and welcome, Jimena! :hug:

I understand about passing out every time you poop. I do the same thing. My doctor called it "Syncope." Taking vitamins has really helped me, especially vitamin D and vitamin B. I also practice breathing and meditating. Also, I need to drink a lot of water. Maybe that would help you, too?

Good luck. And welcome to the family. :ghug:

 

[Jimena]

Thank you all,again! It really helps to talk to someone, who really knows what are you dealing with!

Bum is littlebit better, sore,but not so painful when i sit. Tomorrow i start to eat lightly so i don't have to drinks so much that nasty emptying liquid. I used to prep with Colon Steril,and drink it few liters but now i amplan to try Citra-Fleet, which suppose to be much easier than colonsteril. Have anyone tryed? Next sunday i have that emptying-project and next monday is th colonoscopy. Yaiks!

 

[hannaho]

Hi sorry to hear that u are really not feeling well. that fistula
sounds painful. It is horrible when the docors start messing around with your talets making u feel worse than before. I hope the colonoscopy goes well i hate doing the prep it is so intense.But no i have never tried colonsteril myself i am given picolax have u ever tried that one. Hope it all goes well for u and u feel better soon.xxx

 

[Jimena]

Colonoscopy is done! News were not good, 25cm my small bowell's end is inflamed My rectum is inflamed too and there is big wound. In anal is wound too, i have a MRI on friday and then i see surgeon. I start Humira again, after the MRI.

Damn i hate this desease. :hallo3:

 

[Crohn's 35]

Awe Jimena, I am so sorry you have to go through all this!!! I am surprised you are having an MRI?? Have you been on Remicade? So I am guessing surgery is inevitable? Let us know how you make out. Yeah we all hate this disease..but we need to cope, what options do we have???

 

[LindaS]

Hi Jimena. I think you're English is great. I'm sorry your colonoscopy showed so much disease. I hope going back on the Humira helps.

 

[tiloah]

I'm sorry the news wasn't more positive. I hope the treatment helps a lot. I'll be thinking of you.

 

[Spooky1]

good luck with future treatment, Jimena

 

[Jessi]

Sorry about your news, Jimena. Wish it could've been better.

What is the MRI for?

 

[Jimena]

Thanks a lot guys :kiss:

They take MRI to make sure there is not abscess anywhere, so i can start Humira. If there are abscess, that have to treat first, before i start Humira. They take it on friday and then i see surgeon and my GI. I am so afraid. Tomorrow i go to work. I dont know if that's a good idea. Im so depressed and angry.

Hope that Humira works.

I'll continue my story after the MRI.

:ghug:

 

[Crohn's 35]

Hi Jimena, the Humira has done wonderful results for many..not to worry about the drug is is the mild drug of the biologics (my opinion). fingers crossed for you.

 

[Jimena]

Pen, yea, i used Humira for 2,5 years and that really makes wonders! First time in ten years i feel like normal, healthy people!

Today was my MRI. They found a fistula there Allso there was something near my vagina, they think it's just a Barthol's cyst. The surgeon wwants to see me, and i go to him 10th november. They decide do i need a surgery.