How to control your Crohn's?

[KrystalStar]

I was diagnosed with Crohn's Disease February 2009. Although, I'm pretty sure I have had it for up to two years prior to that. But, who wants to talk about your poop problem. I sure didn't. But it got to the point where I had no energy, my back hurt, my abdomen hurt, I was going potty every two hours atleast. But it was like barely anything. I couldn't sleep cause I was always getting up. It was terrible, I felt like I was on my death bed. Finally my Dr. said you have to get a colonoscopy, I bawled my eyes out. To me a camera going up my butt is not only uncomfortable but ouch. But, I had no choice, I had to get better. I'm a single Mother and it was hard to tend to him when I was so sick. The day before I had to drink a GALLON of this gross crap, that tasted like salt water and I about threw up everytime I took a drink. I didn't even get half of it down. But I didn't tell them that, cause I didn't want to have to reschedule. I couldn't afford to miss more work, I missed 7 days total. So they had to pump fluid in through an IV..well they couldn't get a vein..this was the most painful part..I was in tears. Finally, I get to the room and they put this stuff in my IV..to relax you, you are not out. But I didn't feel anything, but maybe an urge or two to go potty. Took like 20 minutes. Then I got put on Sulfasalazine twice in the morning and twice at night. And also Predisone. I forget how much I started out on. I lost like 15 pounds but quickly gained it all back plus more on the predisone. I wanted off that stuff. Finally when I was getting better and not passing blood, my DR. slowly lowered my doses. I finally was all off in June I think. I'm still on Sulfasalazine, however I don't know that it does anything. When I was on predisone I didn't poop much and never had to run to the potty. Now that I'm off I'm back to pooping atleast four times a day. And have to run to the potty. I won't even eat and still have to poop. People say it's what you eat, well I cut my dairy and will go two days without food and still poop, how the hell is that possible? And I'm not losing weight either. Are any of you having the same problems as me? Any recomendations?

 

[Lisa5326]

Welcome KrystalStar! Sounds like you have had a rough time, there is lots of information to check out around here on the forum. Urgent poos isn't one of my symptoms, so I cant help you with that, but one of the things I have found helpful to me is keeping a food and pain diary so you know which foods affect you the most or at all.
Take care and keep us posted on how you are doing.

 

[beth]

:welcome:

 

[tkgreen]

What foods to help keep Crohns in check

Hi Krystal

Food must be the most important topic of conversation for Crohns and related diseases. Food can be savior and also it can be the your worst enemy. Eat the right food and you are on your way to better health & recovery & remission. Eat the wrong food AND life is living hell.
Two specific products that help alot are good quality probiotics to keep building the good bacteria colonies in your GUT (so to help obsorb the good nutrients from the food you intake) and of course Omega 3 fatty acids with many benefits including help your immune system.
To get started with building good colonies probably VSL#3 is going to be your best bet. You can only take this with non-carbonated juice and definitely NON-ACIDIC. I like yogurt or icecream. Apple sauce or you can pour it into any cold favorite NON Carbonated, non cafinated, none acidic beverage.
Good powered greens are also very important because they can easily be obsorbed in and your Gut is not going to fight them. There is alot of food ideas in
crohnssite.com click on food and nutrition section. You will see alot of great food ideas. Breakfast, lunch and dinners.
Stay clear away from fast food, coffee, refined sugar, greasy foods. Enjoy your life. We all deserve to live pain-free and good quality of life.
Take care
TKgreen

 

[Wizbit]

Are any of you having the same problems as me?

I completely sympathise... my situation sounds very similar to yours:

two years of symptoms -> lack of energy -> losing weight (12kg / 26lb) -> pain! -> colonoscopy -> Prednisolone -> feel better -> gain weight -> lowered doses -> back to 4-8 toilet visits a day -> and lots more pain!

Luckily, I have an appointment with my GI specialist tomorrow and I think they will put my back on the Prednisolone again. But if they offer me any advice that may be relevant to you, then I'll post it here.

 

[PaulaJean]

Hi Krystal. I have had Crohn's disease since age 19 (back in 1986). Please ask your doctor about Entocort. While it is still a steroid like Prednisone, it is only slightly absorbed by the intestines, meaning there are no systemic side effects like Prednisone. I just started Entocort (first time ever taking it), the beginning of July '09. I take it along with the usually prescribed dosage of Pentasa (which is 4 pills, 4 times a day at 250 mg). The Pentasa is a sulfa drug that is simply a "wash" over the intestines to fight back the inflammation. Pentasa releases later in the intestines, which is where my Crohn's is active. FYI, Asacol is similar to Pentasa except that it releases earlier in the intestines.

These 2 drugs (Entocort and Pentasa) are serving me very well right now. I truly feel the best I ever have since 1986. I feel quite normal with no side effects from either of the drugs.

As I am aware, no two Crohn's cases are the same (for instance, I am surprised to learn of the amount of Crohn's sufferers who have blood present....I NEVER have...). Yet I offer my experience with these two medicines in hopes they can serve someone else very well also.