New from Ontrio Canada, My story.

Crohn's Disease Forum

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Fog Ducker

Fog Ducker

Joined
Nov 29, 2009
Messages
1,375
Hi all!
Been wanting to look up a forum for yeas, since im on forums for lots of other stuff, finally found this one and here I am.

My story starts in 05 when I had some bleeding and found my way to a GI who diagnosed me with UC, gave me some asacol and said not to worry to much I dont have it bad and just stick with the asacol fo the rest of my life, Ill be all good.

Well all was good for a while until the summer of 07, my symptoms started to get bad again. GI increased my dosage to no avail. Sympoms kept going downhill, even getting severe joint pain in my knees, so bad that i could barely walk. Along came scripts for inflamation meds for pain and the horrible pred. Well this downward spiral mixed with my own stupidity of not wanting to eat cause it hurt, put me in the hospital. When I checked in I was weighed at 130lbs, a far cry from where i was at 185lb and in peak shape. Was fighting mma professionaly at the time.

My stay in hospital lasted 10 days. They said it wasnt UC any more but CD. They had me on Pred through IV once a day. Well I caould feel it working but would wear off in the evening. So I convinced them to give me half in the am thn half at night. I have always had a problem with meds not working or wearing off quickly. So after about 7 or so days in the hospital, they told me I was going on Remicade.

Remicade has been a life saver for me! Have been getting it since, had some issues with other meds though. My GI likes to pair it with others. Tried Methatrexate injectalble made me feel like junk for a day or two. Tried Imuran, my body did not like that, flu like symptoms.

Now back on Metatrexate but the oral and switched the Remicade to 10mg and 6 week interval, because I could feel it wearing off around week 5 of 8. Seems to be working better. Have way more energy and feel 1000 times better. Not 100% but I never really expect to be perfect again. Been working on getting my diet figured out. I think that will help out a lot. I am really liking the idea behind the SCD diet. Might give it a go but I am such a sugar and chocolate freek it will be tough.

So here I am, sorry for the long story. Looking forward to the world of advice and support that this forum has to offer.

Cheers,
Brian
 
Hi Brian-
I'm new too! I also have a sweet tooth. I know it's different for everyone, but I personally have found that diet makes a huge difference! Try a few out, I'm sure you'll find one that works for you. Food (especially sugar) is such a joy of life! It's hard to imagine giving it up. I just save the sweets now for very special occasions and the bonus is that you enjoy it so much more when you do allow yourself to have them! I can also relate the the debilitatin joint pain. The pain I get in my hips makes it difficult to sit, lie down or walk. I really hope you find a diet that helps.
 
Hi Brian, welcome to the club. I can relate to the wieght lose. I went from 155-60 to 118 before we got things under control. The Prednisone did wonders, but yet it really hurt over the long run. Now I have to decide wheather to start the Remicade or Humira to get this latest flare-up under control. Have to decide by next wednesday.

Good luck with everything and I'll talk to sooner or later here.
 
Welcome to the forum....Check out the Remicade club thread in the treatment forum. We always like new members.:) Hope to see you around here more. Good luck.
 
hi & welcome, Brian :)

glad to hear things are more settled now. there's a lot of info and anecdotes on diet for Crohn's sufferers here, just have a good old mooch around - and regarding the chocolate, i can't remember if anyone here has a problem with it.. i don't - except that i love it too much! :D
 
Yes I was on imuran and remicade together, they had me on it for over a year. Imuran for about a year. Niether has worked for me, they had to take me off imuran cause I guess with how young I am the combination can create a life threatning tumor in young people. Im so glad to hear remicade works for you, its seems to work for a lot of people and is safer then most cronic crohns medications.
 
Welcome to the forum, I'm pretty new here too but have found loads of useful info already. Funny you should mention a sweet tooth...I was joking with my husband the other day that I thought I was allergic to chocolate as i have had stomach ache the last few times I have eaten it...never even thought about crohns, do you have trouble with sweet things?

Looby
 
Oh yeah its almost instant sometimes. I eat something really good (read: bad for me) and it starts to hurt almost right away. Then I pay for it for a couple days.

Im my old life, it wasnt uncommon for me to go to the bulk barn and get a big bag of chocolate covered pretzles and polish that off in a day!! :eek2:
MMMMM how I miss them!
 
Hey Welcome Brian...

Chocolate runs through me within minutes...(cramps, D and vomiting) I presume it's the Crohn's because before I got sick I used to eat a family size bar of cadbury's every day.... now one bite and I am ruined for days.... always the nice stuff eh?

Good luck and enjoy the forum - you will meet great people here.

Lishyloo
 
Welcome Brian

I too am from Ontario Canada in Brantford Ontario (about an hour from you). I am beginning to think chocolate might be a culprit in my problems but we shall see. I am currently taking Entocort but looks like I am changing drugs in the near future, not sure what is next. Enjoy the forums!
 
Chocolate IS THE DEVIL!!!!!!!!

But so is milk, ice cream, cheese and basicly all other foods right now. lol
 
Oh I would be soooooo unhappy without chocolate....I dont over do it though....Well sometimes!!! mmmmm chocolate
 
Welcome to the forum, Brian
My problem with the chocolate is that it gives me acid reflux... not always, but I seem to have an instinctive feeling when the outcome is likely to be bad.
The psychological effect of giving up something like that is too much... I try to keep it as a treat!
 
Welcome Brian! Glad Remi is working wonders for you!! It is a great med when it works. I have to be very sparing with chocolate. White chocolate is ok - but regular chocolate can get me running to the bathroom. I think it is what Carolyn said - the caffeine.
 
Hey, we're both from London, Ontario. Small world!

I had the full series of Crohns symptoms too when I was diagnosed, I had lost 30+ pounds, had arthritis in my wrists, ankles and the back of my knees and couldn't even walk up the stairs anymore, plus 5 months of diarhea. Only then did I figure it was time to go to the emergency room (exactly one year). They started me on prednisone right away which cleared up everything the same day, except now a year later I'm still on it :(

So where do they give the Remicade injections in London? What's it like? Why does your GI want to pair it with other drugs, hasn't it been effective enough on its own?
 
Last edited:
Chuck2008 said:
Hey, we're both from London, Ontario. Small world!

I had the full series of Crohns symptoms too when I was diagnosed, I had lost 30+ pounds, had arthritis in my wrists, ankles and the back of my knees and couldn't even walk up the stairs anymore, plus 5 months of diarhea. Only then did I figure it was time to go to the emergency room (exactly one year). They started me on prednisone right away which cleared up everything the same day, except now a year later I'm still on it :(

So where do they give the Remicade injections in London? What's it like? Why does your GI want to pair it with other drugs, hasn't it been effective enough on its own?
Click to expand...


I get it at the AIM clinic at Dundas and Second. Evelyn there is the best! Such a nice lady, I cant say enough about her! I go in sit there and watch a movie and shoot the chit for a bit then Im all good for another 6 weeks.

My GI is Dr. Faegan at University Hospital. He says that they are finding that these drugs work best when paired together. A immunosuppressant (methatrexate) with a TNF blocker (Remicade)
I dont really care what he gives me to be honest as long as im not back in the hospital or afraid to leave the site of the bathroom!

If you have any other questions dont hesitate! :)
 
Thanks for the reply. If I go ahead with the Remicade I'll probably have a lot more questions for you. You're taking Methotrexate too? Thats what my doctor would like me to try first but like you, I'm into a physical sport and don't want to spend a day or two of every week feeling sick. And I imagine I'll have a sore arm too, and bruise easily taking Mtx? Are you into mma again, and if so how does Methotrexate affect that?

Is the AIM clinic where everyone in London gets it done? Do usually see a lot of people there or just you?
 
Chuck2008 said:
Thanks for the reply. If I go ahead with the Remicade I'll probably have a lot more questions for you. You're taking Methotrexate too? Thats what my doctor would like me to try first but like you, I'm into a physical sport and don't want to spend a day or two of every week feeling sick. And I imagine I'll have a sore arm too, and bruise easily taking Mtx? Are you into mma again, and if so how does Methotrexate affect that?

Is the AIM clinic where everyone in London gets it done? Do usually see a lot of people there or just you?
Click to expand...

Well you wont have a sore arm, the injectable mtx is subcutaneous so I always injected it in my belly fat. Yeah you get to inject yourself! Its REAL weird at first, takes like 30 min just to work up the nerve! But Im on the oral now. For the feeling sick Im on Ondansetron, which you just take like 5 min before the mtx.

Im pretty sure th AIM clinic is the only place in London, cause some people even come from out of town. There are usually 2 other people there getting theirs as well. There are only 4 chairs so that would be the most ever there.

I am training again half assed though. Been just teaching mostly. I dont find the meds affect my training its that I cant count 100% on being healthy all the time so... I tried to take a fight last year and had to back out cause I couldnt train properly for a week right before. But my health has been better lately, and I have the itch, I may try again.
 
Welcome to the forums. I have pain if I eat too much greasy or sugary foods. Beef is the worst for me. Sucks, I ate it every day before Crohn's. I think we have all given up something we once loved and can no longer tolerate.
 
I kinda feel a bit stupid that I never made the connection between stomach cramps and chocolate!!!! That's major denial!!! It has made me smile all week since reading these posts as I have had Crohns for nearly 12 years!!!!!! I still had some chocolate last night though...just to check!!!
 
^ LOL! I had some today "just to check" as well! Hey you never know something could change and well... :D
 
Hey welcome Fog.
I had to come on post about the chocolate. When my son was first diagnosed with Crohn's, he went on a pretty restricted diet right away but chocolate was the one thing he could not give up and it always gave him problems. So we experimented a bit and found it's not the chocolate as much as the additives, milk, sugar etc that is in most chocolate.
One of his favourite things now (he has it at least once if not twice a day) is a frozen chocolate roll. Melt 3 squares unsweetened chocolate with some coconut oil, add honey, agave, stevia or a combo of whatever non sugar sweetener you're using, add some almond flour, a 1/2 cup of natural peanut butter let it set up a bit and then roll it in some natural unsulphured coconut. Freeze and slice as necessary. I realize that not everyone can eat all these ingredients, but for those that can it's awesome.
 
Chocolate... I'm addicted too

Speaking of chocolate, has anyone tried the Ensure Plus chocolate meal replacement shakes? I expected they'd taste like they used to years ago, chalky or like carob or something. But many they're delicious! Rich and chocolatey, and 100% healthy. I've been drinking 5 of them a day for the past week (along with the Boost clear fruit juices which are also meal replacements) and I'm feeling pretty good now, no more stomach aches, blood, etc. I might be going into Remissions again (knock on wood). I read that enteral nutrition and bowel rest are effective (but temporary) ways to put 80% people into remission. Drinking these shakes isn't technically enteral nutrition, but they're low residue so I'm only going to the bathroom once every 1 ->2 days now and am getting 2000+ calories.

If you like chocolate, I highly recommend them, they are regularly priced at $13.99 for 6 (Canadian) but I found them on sale for $7.99 and stocked up.

Sorry to sound like a commercial, but they're that good! Just make sure you get the plastic bottles and not the cans, the canned drinks taste a little strange. The strawberry is good too, it tastes exactly like Frankenberry ceral, if anyone remembers that...:tongue:
 
Thanks for the info, I appreciate it. I've got a file going on all the different medications I can choose from but the decision is so difficult. It looks like Methotrexate is really the safest in terms of cancer risk, and the one my GI is pushing, but the idea of taking it every week is hard to accept. Everyone on this forum is so brave with the medications and surgeries they choose, I guess I'm sort of in denial still and hoping this whole nightmare will go away if I just ignore it..
 
The ensures are awesome, when I was malnourished and way under weight they nursed me back to health. They are great. They have some interesting other flavours too, some real good, some not so good. I think I remember the wildberry or something being not so good.
I have reacently heard some bad things about consuming too much soy and it elevating estrogen level in men.

As far as the being brave and the meds, as I have said in another thread, Id rather live for the now and improve my quality of life now, and have some risks later in life, than feel like crap forever. Ill take whatever is gonna make me better now!
I know it is all a little scarry, but I just choose not to think about it. My own denial! :)
 
I guess it all depends on how serious your condition/flare-up is too. Last year when I was in really bad shape I would have easily taken the remicade etc, anything to get rid of the pain. But I'm actually not doing so bad right now (no diahrea, just nausea, occasional stomach aches when I eat solid food and a little blood) so maybe I'll keep stalling on the prednisone and see what happens in the coming weeks/months, then my decision will probably be made for me.

Soy? Dang didn't notice that on the label until now. You're right I don't want too much of that.

Aside from the ensures I drink a couple ready-to-drink Myoplex high protein shakes (40grams protein each) because I need a lot of protein every day, they don't taste nearly as good as the Ensures, but I've been drinking them for a couple years now and am used to them.. They use the best quality whey and milk proteins and no soy at all..
 

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