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Anyone miss me (and my mysterious IBD)?

anyone miss me (and my mysterious IBD)?

After a long and necessary hiatus from the forum I've felt like coming back to get some advice. Here's an update:

Tomorrow will mark my 52nd-month anniversary of this mystery illness.

I have had to eliminate red meat (I eat a bit once or twice a month) and most veggies and a ton of fruits.

I get flares every 3-5 months, where the only relief is Prednisone.. But being on it 3 times in the last 7 months has given me osteoporosis and made me gain 25 lbs. I also have to be very careful about Pred since I now have Hypertension.

My flares involve about 10 bowel movements a day (usually within 20 mins of eating or drinking), with deep red blood. If its not bloody BMs, its vomitting after eating. But all of the time though I'm in a vehicle or not near a garbage can so just swallow the vomit back down :X.

I am waiting to have a new procedure done, a CT Enterography. My specialist says "there is definitely something very wrong with you".

So I am curious, if eating meals veryyy slowly doesn't work to reduce the chance of vomiting, what works for you?? Have any of you had a CT Enterography?? Does a liquid diet during flares really work??
Good to hear from you again. Too bad it is not to announce you are feeling 100%, but that is the way it is around here. We take what we can get.

When I was a professional puker, it was because of a stricture. I did not know that until pre surgery, but had I known, I would have eaten things that can't block the narrow opening in my guts. I am guessing this is why you are hurling also. No chunks of anything basically.

I hope everything turns out for you.

Thanks for the reply, Dan!

Good to know about not eating large bites/chunks of food. I'm going to try that!

I wish I could say I was 100% better, but I'm not giving up on the fight :)
Hey Lisa, sorry we haven't talked in a long time. I'm also sorry you are feeling so badly. I'm praying for you and hopefully you and I can talk soon. I hope you can feel better soon and that this procedure helps you out a ton.
Chew foods slowly. Take digestive enzymes. You'll probably need to go on a low residue diet. Don't take in a lot of protein (meat; not counting scrambled eggs) at one time. Don't take in high fiber foods. You'll probably be eating a lot of carbohydrates. Just try to limit the amount of sugar you get from carbohydrates. Potatoes are a very good source of complex carbohydrates (starch).

The foods you eat will not give you all of the vitamin and minerals that you will need. Your going to have to take a multivitamin plus extra calcium due to the bone loss. Also depending on where your disease is; how much inflammation is there; how much scar tissue is there; your body may be not absorbing certain nutrients properly.

Most diet plans will tell you to stay away from dairy foods, since 95% of people are lactose intolerant. This will normally cause most people to have diarrhea or more diarrhea in the case of certain IBD issues. You can get around that and still eat dairy if you make sure you take plenty of Milk Digestive enzymes (Lactase).

Also buy and read this book.

Also your going to have to talk to your doctor about other methods of treatment than predisnosne. Entocort may or may not be a short-term option (controlled released corticosteroid).

Show your doctor this article plus there are a couple more I think. A study showed that the more frequent a patient was put on corticosteroid treatment; the patient tended to have additional flare ups that required additional corticosteroid treatment. Off the top of my head I think it was a 20% cumulative increasing risk of another flare up with corticosteroids. Thus if you had 5 flare ups within a short period (about a year or 2 years), and if you were treated with corticosteroids, statistically you would have a 100% chance of another flare up.

I don't feel like digging for the article. I think I have it posted in one of old posts somewhere.
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Crohn's 35

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Hi Lisa! :bigwave: Welcome back! Sorry you are still battling your illness, I dont have much to add and I am not a bleeder so I can't give you experience there but as mentioned, chew chew chew, and digestive enzymes do help. I am surprised you cannot tollerate banana's because it can help with diahreah and helps you to feel fuller and little chance of a bowel obstruction. Yams are good too. Hopefully after your test you will get results.

Alot of people have come and gone, it has calmed down here alot and lots of newbies. Keep us updated, hang in there ok?

Hey Habsfan! Good to see you around again; sorry to hear you're having trouble, though.

Chewing thoroughly is good advice; I do find that a liquid diet helps when I am flaring, you might want to give it a try. Not much fun, but then again I get so nauseous that eating solid food doesn't appeal to me when I'm sick.

When is your CT Entertography scheduled? Hope you finally get some answers and get onto a maintenance drug, and stop doing the dosey-do with pred.
hey there!

I had a CT enterography last month. It's just like a regular CT but you drink a bunch of water instead of the nasty stuff that you normally drink. Apparently when you drink the water and they inject the dye it gives some kind of a negative image and they can see the inflammed/problem areas a lot better than a regular CT.

Last year when i had the CT Enterography done I was going through much of the same thing. There really wasn't anything I could do to stop the vomitting. I switched to a liquid diet and that helped some, but not all of the way. I ended up having an obstruction in my small intestine when I was like that.

I hope they figure out what's wrong and you can feel better soon!
Hey guys, sorry that it took me so long to respond to this again.

I still have not heard yet about the CT Enterography - the joy of waiting lists in this province, I tell you! It's been 5 months now that I'm waiting to hear about it. But I'm glad to know it isn't anything too bad!

I did however go to see my specialist on June 17th. He is puzzled about what it could be still, but is hopeful that the CTE will show what's behind it all.

And he did put me on a low dose of Pred, starting at 20 mg (i'm half done it now... down to 10 mg), but is has done wonders as always!! Flare is gone (even if i eat some meat, from 8 or 9 BMs a day to 1 or 2 (one day was 3), no diarrhea.

It is puzzling that if every doctor swears I do not have Crohn's or Colitis that I have such wonderful results on Pred...


Staff member
That's a really long time to have to wait for a test. It's good that Pred helps but the side effects aren't really doing you any good. Is there ANY way you could get the CT Enterography done somewhere else, like another country maybe? It may be out of the question financially but if not, maybe you could find help sooner. I hope you find answers soon. Thank you for the update. :D
That's a really long time to have to wait for a test. It's good that Pred helps but the side effects aren't really doing you any good. Is there ANY way you could get the CT Enterography done somewhere else, like another country maybe? It may be out of the question financially but if not, maybe you could find help sooner. I hope you find answers soon. Thank you for the update. :D

Trust me, if I could afford to go to the U.S. I would have long ago! But it wouldn't be covered by my health care unless I had a referral from one of my doctors. They won't even send me to another province so another country is out of the question for sure :/.

If I don't hear from the testing facility by the end of the month I'm going to call to my GIs office. They're really good about trying to get stuff done ASAP!

Yes, I hate the weight gain and the higher than usual blood pressure. But it's worth it.

Oh yeah, and no puking either! :D
I hope your GI can get the ball rolling for you. :D
He's usually great, so is his receptionist. She always makes sure he gets his messages. Thing is, I'm working full time in August now and am back in university in September in a different city than I'll have the test done so it would require missing 3 days of school. But it's gotta be done!

If I remember, 9 days left of pred, I wish i could be on it forever! (kind of...). Wonder how long I will remain IBD-symptom free?