Diagnosed with Crohn's

[ZiiONIC]

hey everyone!

just wanted to introduce myself here and would love to have support and people to talk with involving Crohn's. My name is Brandon, I am a 22 year old male from Chesapeake, VA. I just got out of the hospital on thursday after being there exactly to weeks... For a few years i had been having chronic stomach pains, and the past few months before i went to the ER i was having constipation for days followed by diahrea.

Well i went to the ER and had a Cat Scan. Two days later I had a colonoscopy which showed very bad inflamation of my bowels. Also they found a blockage and scar tissue where my small intestine meets the large intestine. The blockage was so bad that the scope couldn't even pass through the small opening.

They said that i have Crohn's and that i would need surgery. The GI doctor's basically said it was up to me whether or not to have the surgery done now or not. I decided to wait and see how the steroids work and hope that the inflamation will go down enough to be able to pass food well. So basically the doctors said i will definately have to have surgery soon, its just a matter of if it will be a few weeks or a few years.

Im kind of scared and don't know what to expect. I've read a lot into things to change with my diet and i am eating a lot heathier. No caffeine, carbonated beverages, trying to stop smoking, no spicey foods. So far i have been doing well i'm having normal bowel movements and don't have much pain. The only thing is now i can't stop eating. Not sure if it is the predinsone or what but im constantly eating now. Which i guess is good considering i lost about 25 pounds and really need to gain some weight.

Anyways I just want to thank anyone who can be of any help and support and i will try to offer the same. I guess it's at least good we have a community here.

-brandon

 

[D Bergy]

Welcome to the forum. I think you were smart to take the "bull by the horns" and face this disease head on like you have. Since what you are doing is helping you avoid surgery, keep on doing it.

It may revert back after you are off of the prednisone, so be prepared for that possibility. However sometimes it can end a flare for a long time, there is no way to know what will happen for sure.

If you do have trouble with the blockage and can't seem to get rid of it, by all means have the surgery. Many of us have been through this, and it is not really all that bad of a procedure. I felt much better afterwards.

Odds are you will need some kind of long term treatment to keep a lid on the symptoms. You can find many peoples experiences with various drugs and other treatment methods here.

I hope you can maintain your current good progress. If you ever have any questions or comments, feel free to post away.

Dan

 

[BWS1982]

Welcome Brandon, sounds like the better alternative to elect to avoid the surgery for the moment. What I've read on the effectiveness of many surgeries isn't as good as we'd all hope, most people who get one surgery end up needing another. If meds will fix the issue, all the better....

 

[Keara07]

Welcome Brandon-

I too have been recently dx'd and our story sounds somewhat familiar. I have been on a variety of drugs in attempt to reduce the inflammation as well but now have to see the surgeon afterall in about a week - we have tried everything from asacol to Imuran and I am currently only on pentasa and predisone.

I have been on prednisone for almost 2 months - juts starting my taper, and while I had a few days of a good appetite, I am mostly the same lower weight I got to during the most recent flare. I do not like it though, and the effects are not pleasing so I actually asked for a taper - I thought since , except for the extreme pain, the CD symptoms are there, why not get rid of the steroid and see where it takes us, plus my GI is now strongly leaning towards surgery (resection, fistula repair) or remicade if I can come up with the $ to pay.

I am eating more healthy though as well - but without the appetite, I was eating for cals and now I am eating for health. My symptoms prevent me from some foods altogether (caffeine, lactose for sure - I keep *trying* it every 2 weeks to about 48 hr pain after - carbonation) but since everything gives me some pain, the ones that stay in the tolerable pain category for me I am now eating again - like light meats, potatoes, fruit (no seeds), and even, yea!, fish. I think the fish works best and I am spoiling myself with smoked salmon.

Prednisone is known though for giving you an appeitite (a friend of mine was on it after a masectomy and put on 80lb in 2 months) and water retention so watch for really rapid gain with swelling.

 

[Kev]

Hi Brandon.. Welcome to the forum... The changes you implemented, the pred you are on, will help alleviate many of your conditions... but if the docs are seeing scar tissue AND blockage... then the surgery IS inevitable. Think that what the Dr was trying to prepare you for. Regardless of the pred, scar tissue won't go away. And a blockage... welll, it's just a ticking time bomb... lot of folks have required an 'emergency' operation when a blockage backed up and ruptured... Those can be life jeopardizing. Now for the good news. A planned resection is NOT something to loose sleep over. I had it done the old fashioned way (not laproscopically) and it was literally a cake walk. Lot's of folks on here will echo that sentiment. I think MOST on here would opt for a planned one Vs taking a chance on an emergency one. As for the pred, it will boost appetites; just keep in mind you have blockage to some degree and scar tissue to contend with... watch what you eat. Opt for small meals vs large ones, liquids or soft diets IF you notice increased pain, swelling, bloating, other warning signs... Anyway, sorry if I overloaded you on the 1st pass. Keep on posting..

 

[ZiiONIC]

thanks for all of the advice everyone. Well so far since i've been home from the hospital my stomach has been feeling fine. Just today though i'm starting to get the pains i had before i went to the ER, just not as severe. I think some of the food is starting to get backed up again. However tomorrow i have a followup GI appointment so i will let them know what is going on and see if they recommend surgery now. I'm thinking that you are right and i should probably just go ahead and get the surgery done. I don't want to make anything worse by trying to put it off. Anyways i appreciate the advice and comments.

However today i did have 2 cups of coffee, and a soda... not sure if that's what the pain is from or what. Guess ill see how i feel tomorrow.

 

[Methofelis]

Hey there.

I'm new to being diagnosed too... just a bit over a month, right before my twenty-third birthday. I cannot say much on the surgery route... I haven't been able to afford proper doctoring and don't know if that is needed yet, but I know the fear you speak of anyway. I have an ex-boyfriend that had ulcerative colitis and had to have a colostomy bag to live. The idea makes me nervous, but sometimes surgery is the best hope.

I hope you're feeling well. As to the coffee and soda -- while I've killed soda from my diet I haven't dared rid myself of coffee. Or smoking, sadly. Luckily, it doesn't seem to be a culprit.

So what this welcome boils down to is : how in the world does one survive without caffeine and nicotine?

 

[TheyCallMeRC]

Hey Brandon, welcome to the forum. I was diagnosed in 1995 and my Dr. put me on Prednisone. I went a whole year in pain and losing weight and finally had to have a small bowel resec ( which is what you will have done ). I mainly waited so long due to being stubborn and scared. Looking back now, I wish I had gone ahead with the surgery alot sooner. if you see the prednisone is not helping and you are in alot of pain from the blockage, then I suggest you go ahead and get it over with so you can start recovering. This is only my opinion and you have to do what you feel is right with you, but there is no sense to continue to suffer needlessly and delay the inevidable. Best of luck to you.

 

[Kev]

welll. caffiene can cause increased diarhea AND aggravate/increase dehydration. Dehydration by itself CAN increase pain... And soda, any carbonated beverage, is asking for gas.. Gas in an inflamed GI tract will only increase pain, and possibly 'urgent' movements. both are things one should limit or avoid while symptomatic

 

[BWS1982]

just a small note here, but yeah, carbonation wreaks havoc on me, I can tell you that much...wish they sold flat pop....rather than making me let it sit out for hours...

 

[Kev]

You want pop to go flat fast? pour into plastic or foam glass over ice rapidly... then let it sit... the rough surfaces of the container n the increased surface area of the ice allows more place for the 'bubbles' to adher to, speeding up the process of the fizz going flat. Plus, as the ice melts, it helps to dilute and flatten the soda

 

[BWS1982]

I'll have to try that....thanks.

Of course thanks to Mythbusters and pop culture I know how to use Mentos to make it less flat....

 

[Kev]

Yeah, I saw that episode of 'Mythbusters'... Hmm, wonder if it only works on soda, or if one could speed up the prep process AND take the eye sting out of gas by adding them to enemas? Anyone wanna volunteer by putting this to a test?