• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Hows your health right now?

J

Jonny

Guest
Anyone that doesnt know i have had a ileostomy for just over 3 years now.Might be permanent but ive still got my rectum so it could be reversed although the longer i have this peri anal fistula the further away it is for me to get a J-pouch reversal for myself.
Ive had my fistula for 2 years now so i had a year of just dealing and getting used to the stoma before the bum problems set in.I long for the day when i dont have to clean my butt regularly lol and clean the fistula.
As for having a baggie ive been lucky and never had any major problems with it apart from the occasional leaks at inappropiate times so im thankful for that and when i flare up the flares are never as bad as they where without the ileostomy.
For me i dont like having the stoma but very much appreciate that it has made my life better and i can do pretty much the stuff i done before i had it.

Im due for another remicade infusion on the 11th of July so hopefully this will keep my crohns under control for a while, while i wait for the azathioprine to kick in.Ive been on it a few weeks but it can take upto 3 months before it works.
Emotionally i get the odd day when i hate the state of my body and wonder if things will ever improve for me but thankfully those days are rare and it helps being on this site to see positive people and the humour by people even though they have to deal with so much crap.

My bum is the major pain in the ass prob for me.I get blood discharge from my rectum 3 to 4 times a day when i go too the loo and then theres treating the fistula.I can dehydrate pretty easily too which causes me fatigue and i try to eat healthy but i always give in to the temptation of the occasional chips and burgers or a KFC .I dont like cooking too much lol.

Bored you all enough so hoping someone else can share how they are right now and mabye a bit about themseleves too.
 
B

boneyboy

Guest
Thanks for sharing Jonny. I don't have quite the same situation as you, but I've had fistulas for about eh, 4 or 5 years now. Wait, no, 6! Wow. It's thankfully been treated with remicade, imuran, and then finally several seton surgeries.

I've had it lanced (great fun!), poked, etc. For now it seems to be under control. I keep my fingers crossed.

Currently i'm experiencing a crohn's flare, first significant one I've had in about 7 years. To a degree, I forgot how bad it can be, but then it all came rushing back lightning quick once things started happening. "Oh, yeah. That's what it's like. Great. Here we go again!"

I'm just dealin with it. There are times that I absolutely hate the crohn's and wanna grab a spoon and dig it out. Yes I do realize that would be a bit counter productive. So I just look at my tat, and remember that I was able to turn this bastard of a disease into some art. There's a college student that's doing a journalism piece on people with chronic illnesses turning their disease into art in my area, and she's thinking of making my story the "feature". It makes me happy to be able to show people that you can always overcome what is thrown at you, and turn it into something awesome. Then I get a crohn's cramp and double over. BAH!

I'm thinking of trying to get on Humira soon, somehow. I'm looking into it. We'll see how that goes.

Hope everyone either stays on or gets on an upward track with their illness!
 
M

meowsie

Guest
Right now, my CD is mostly under control. Still "got gas" (thanks, Boney :lol: ), but that's about it. Ever since my surgery, things have been pretty quiet. And once i quit having milk with my cereal in the mornings, the gut has seriously quieted down. I figure if the worst I've got is gas, I'm doing really well.
 
C

Calum

Guest
Hey Jonny those fistulas can be a real pain can't they, hopefully it doesn't drag on too much longer for you.

As for me, well I had been going through a wee flare recently. Feeling much better now and taking some time of work to rest helped too. Started back at work today and it went pretty well, little bit tired now but that was to be expected. All in all I'd say things are looking good.

Calum
 
J

jlbastian

Guest
I am currently being told that there is absolutely no active disease, yet I am having symptoms of a flare. I think I have reached the most frustrating point yet, including the surgery, because they really have no idea why I am having flare symptoms, other than they expect there may be an infection somewhere that they aren't able to pinpoint.

Broad spectrum antibiotics that are making the symtoms worse. Goodie.
 
K

Kbear

Guest
I am doing much better now. I had a flare up with UC over the past two months. Drinking alcohol sets me slowly but surely into flare up mode! lol!
I was flare up free for a year and four months, then decided to have the occassional beverage, and then became sick.
I usually take chinese herbs, colostrum and acupuncture, along with a very strict diet of fish and steamed veggies, occassionally over cooked brown rice. All of these combined, I become well in a short period of time. Recently I decided to try a herbal product, while under the supervision of my chinese acupuncturist/herbalist. This product healed up my insides really fast. ulcerativecolitiscure.com is where I went to order this. I noticed that the second compound (batch of herbs) was in loose form. So I decided to place the herb into capsules, for loose herb ingested is too aggrevating for me when I am flaring. I healed up in two weeks time. And though I have not taken the herbs for three weeks, I seem to be experiencing very slow pariastalsis, causing constipation, in which I never get. Maybe 5 times in my life! lol! SO, the down side is the constipation, which I am now taking some chinese herbs to help my bowel empty itself by strengthening the pariastalsis. But I think, 'well at least I healed up in two weeks time!' So I am happy these days. Acupuncture is equally important, for it constantly tells the body to stop the inflammatory response. Releases and stops the internal heat. Without the acupuncture, it is very difficult for me to heal up entirely by just changing my diet, getting enough sleep etc. In my past, I would flare for just over a year straight, even if taking prednisone. Soon after a year the flare up kind of burns itself out a bit, still there, just not as strong of a flare. Then I can just change my diet, and seem to heal up in a week's time. Found that out the hard way, after being unwell for a year! lol!
Oh the joy's of IBD! For me, there are many lessons learned, and I choose to see the good, and positive in this illness. Hard to do at times, but in the end, it all works out.

Kbear
from Victoria!
 
K

Kbear

Guest
Oh forgot to say that now I am able to eat most foods. The strict diet is only for a short time. THANK Goodness! lol!

Kbear.
 

mikeyarmo

Co-Founder
It seems like a real difference in how people are doing :(. I am glad that some of us are doing so well, and my support and well wishes goes to everyone who is having some trouble right now.

Currently I am 100% in every way. I am very thankful for this and know that I am very lucky.
 
V

Valentina

Guest
my health right now? well, Im supposed to be in remission, and I was for a few months any-ways, and Im pretty sure I still am. I feel bad complaining about it because compared to what it was its nothing much to deal with at all. I think the part Im having trouble with right now is the fear and emotional issues.. that this isn't going to last, and its coming back. and if it comes back, well there arent a lot of options. Ive tried all the drugs. Remicade and MTX are all that would work for me, and if they only gave me a few months, Im pretty pissed off. I always had it in my head that this was just a temporary thing for me.. (12 years not so temporary, but I can be patient... sometimes) I have this daydream that I would be cured some how, or this was all going to be a big mistake or misdiagnosis. and the fact that the next step for me is surgery.. a bag... permanent with no chance of any reversal, well thats unacceptable in my master plan. it scares me to death. I know its saved lives, and Im glad its worked so well for so many people, I just shake at the thought of the whole idea of it.
sorry for the rant.. its just been sitting in my head for a while now, and I was hoping letting it out would some how make me feel better. lol.. not sure yet. Ill sleep on it maybe.
hope everyone is doing OK.. or great.
 
B

Bananasplit22

Guest
Hey everybody...
I'm *crosses fingers* i think in remission now...i'm actually extreemely lucky i've realized compared to others with ibd...i've had indeterminate ibd (altho i think its colitis) for a little over 3 yrs and have no surgeries, no fistulas(fistulae?), umm, only been hospitalized once...anyway, i do still get *d and well yeah i mean i still have the disease and all, but right now i think i'm pretty much under control...
I hope all you guys find remission soon:thumleft: feel good
 
J

Jonny

Guest
Hi everyone hope your all doing ok?
Seen my Doc Surgeon today about my peri anal fistula and he suggested i take the setons out as it looked pretty good too see if they could heal up..Bad timing as im off to Canada soon for a good while but im really happy i can try and give it a go when i come back.Ive had setons in for 2 years and ive waited for this moment for ages and it seems to of arrived at last.

Dreaming of having my butt back with no fistula after the Canada trip.Would be awesome if it happened..

Thnx
Jonny
 
V

Valentina

Guest
:congratualtions:

thats the best news in a while... really happy for you.

Im sorry you have to wait because of coming to see me though. xx
 
S

scottishgirl

Guest
great news johnny hope all goes well

as for me i get a bit down when im flaring but i always think of those of you who have it so much worse and manage to live life so i make myself cheer up and i get on with things as best as i can.

i suffered for 4 years before being diagnosed(including them removing my gall bladder by mistake lol) so even though they are still sorting me out with drugs etc im happy to at least know whats wrong.
i have been in hospital a lot with it including over christmas and new year when ellie was only 4 months old which sucked.
but hopefully i get some decent drugs soon.
im off to australia in 4 weeks with bellyboo so fingers crossed i get some drugs before then
 
I am pretty much 100% except for the fact that I need to gain weight and still take medicine and when I go to the bathroom if I do not drink tons of water it takes for ever it feels like to crap everything out of me. I have been lucky so far as I have not needed any surgery.

I wish everyone the best and prayers
 
I am pretty much 100% except for the fact that I need to gain weight and still take medicine and when I go to the bathroom if I do not drink tons of water it takes for ever it feels like to crap everything out of me. I have been lucky so far as I have not needed any surgery.

I wish everyone the best and prayers
 
i'm not sure what my health is. seems to go like the tide. gassy and bloated usually in the evenings. my large intestine burns when there is anything passing by. no visible blood, but my blood test show i have dropped down to 90 from 116 in 2 weeks. apparently you can loose 1 once of blood a day and not even see it. so my gi is a little concerned, i just had another blood test - that will determine what tx to do next. my esr is through the roof - so my body is in flammed - which i can see and feel that;)
i have been off work since begining of may - getting kinda bored of being an ei bum. tehehehe. but i wouldn't perform very well at work anyways. i have been lucky too in that i havn't needed surgery, of course it has only been 7months since i was diagnosed.
i like reading everyones story. you are all so strong, keep it up.
steph
 
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btcrv

Guest
Keep your head up Steph. That is a lot of weight to lose so I hope the doctor can figure out what it is from.

Good luck to everyone. People who don't feel well, I hope things get better soon.
 
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