Just diagnosed and frustrated

[imhopeful]

just diagnosed and frustrated

After a long frustrating two years of various symptoms and trips to the emergency rooms, things culminated three weeks ago with excruciating pain lower right side. Tests showed I have an infection in the ileum and a colonoscopy showed that additionally I have ulceration, twisted colon, and crohn's. I am little to begin with and have not been able to eat much of anyting and am loosing weight fast. Quality of life has diminished and working is a big struggle. I am in constant pain afraid to eat anything. I always was a healthy eater, eating mostly organic fruits and vegetable, chicken and some fish. I hardly ate anything processed or things containing sugar. Suddenly I cannot eat any of that and don't know what to do. Added to my frustration is not being to find any concrete answers as to what I need to do, what to eat, what to avoid. Doctors have me on Metronidazole and now have added Pentasa which I am afraid to take. Reason for my fear is that the nurse told me they would need to monitor my kidneys because medication could damage it. At the moment besides the pain, I am constipated because all I am eating is a little bit of cheerios with soy milk.
Does anyone have any suggestions for me??? Those of you who are on Pentasa, have you had any negative side effects? I appreciate any feedback I can get as I want to remain hopeful. thank you.

 

[scottmyster]

Hi Hopful
i have had crohn's for 21 years now, and i know a little about what to eat during a flare up and here it goes, try to stay away from Diary products, whole wheat, oats, corn, dark sodas, stuff like that anything that is hard to digest. Try nutritional drinks' gator aid and boost low in lactose and gluten free. Try to say with simple fruits and veggies.Boil everything including meat and poultry products. i haven't been on pentasa so i don't about the side effects. i am on asacol and dicetel and modulin. i have been recently in a flare up stage and i stick with liquids and probotic yogurts like activa and bio-best. Hopefully this helps. all the best. if you need us where here. keep us up to date on your condition.

 

[imhopeful]

Thank you so much for your suggestions. It is soooo good to hear from others who understand what I am going thru. I will try your suggestions and see what works. All the best to you as well.

 

[Jefferson]

Hi imhopful,

Welcome to the forums! Lot's of great information here and even more, lots of fine folks who suffer like you.

You'll be going through a lot of trial and error when it comes to dieting, after 22 years with Crohns, I still find myself trying new things to find out if I'll suffer or not. I don't do dairy at all and if I do, I take a lactaid pill beforehand, like for an ice cream cone. As for meats, I almost exclusively eat organic. We have a great Amish Market here and I can finally eat small portions of red meat again. Their chicken is the best I've ever had!
I was on Pentasa for several years. It wasn't a favorite of mine and overtime it lots its effectiveness. I didn't have any major side effects from it other then some nasty gas. Don't be surprised of your BM is speckled with little dots of Pentasa, it's normal. My GI had me on Metronidazole or Flagyl when I was diagnosed too. That was a drug I truly despised! But I had two fistulas and the Flagyl healed them nicely. I didn't like the metallic taste it left though and for some reason I began to lose sensation in my fingers.

I wish you all the luck, pretty soon you'll find your niche and begin to manage crohns and hopefully find yourself in remission!

-Jeff

 

[Artificial]

Hi there,

Sorry to hear that things are not so great at the moment.

I was only recently diagnosed as well, I take Pentasa at the moment and have so far not had any if the side effects at all so hope it goes well for you to!

Rachel.

 

[Gwen pippy]

Hi Imhopeful and welcome

Sorry to hear you're not well at the moment but as the guys said with some trial and even error you will find your feet with crohn's but try to stay positive as even that in its self can help.
Keep a daily diary of what you eat, drink, how long you sleep, try rate your level of stress and even fill in details of your bowel movements, this will help you to figure out some triggers.
I have crohn's over 20yrs and like the other guys you do find things to help. I was on pentasa for over 5yrs and didn't suffer any bad side effects but it did lose its power on me but then so did a lot of other meds, but I just go straight back to GI when that happens and we change direction.

I wish you the best of luck.

Gwen xxx

 

[imhopeful]

Thank you all. I am overwhelmed by the support and it is giving me much needed encouragement.

 

[uncas]

Just wanted to drop a note and say hi to a fellow Arizona Chrohny. I have been taking Pentasa since the day I was diagnosed 2.5 years ago. It has worked well for me and I have had no side effects.

The thing I have learned the most from talking to people with Crohn's is that your diet matters, but we each have our own irritants. One co-worker of mine swore that the "Specific Carbohydrate Diet" saved his wife. He pointed me to the book "Breaking the Vicious Cycle" by Elaine Gottschall. After reading many heart breaking yet wonderful personal stories in the reviews section of Amazon I bought the book. It's a good read, but I don't actually follow the diet today. Instead I did it for a few weeks to flush out my systems and then I tried 1 restricted food every other day until I found the bad guys. For me the killer was dairy. So I got off lucky. I just take Pentasa and skip the milk.

For local support groups check out the Southwest Chapter of the Crohn's and Colitis Foundation of America. They have proven to be a great source of information and support for me over the past two years.

ccfa.org/chapters/southwest

Good luck with everything!

-Joe

 

[MJones]

I've not been on Pentasa before, but I did try to find ways to lower my inflammation (CRP) levels with my diet. For me, taking out grains -completely- did a world of good. I read the book mentioned above, Breaking the Vicious Cycle, along with The Paleo Solution by Robb Wolf, and decided that I'd try going "fresh". Fresh vegetables, fresh grass-fed/free-range meat, no grains. No rice, no wheat, no gluten or any grain of any kind, and little or no beans. My CRP was at 25 or so when I began, and after a 51-day course of prednisone, it was down to 6, and it's managed to bounce between there and zero since I cut grains out. I haven't found a maintenance drug that works for me yet, so I've been left to diet alone as a maintenance regimen. Everyone's different, but this is what's worked for me so far. Good luck to you!

 

[carolhew]

Joe, thanks for the info on the southwest chapter of ccfa. I too am newly diagnosed and from AZ.

Carol

 

[carolhew]

imhopeful,

sorry to hear you are having rough time! I too am newly diagnosed and in AZ. My Crohn's is mild, I have been put on budnesoside (generic form of Entocort) and I have become constipated. I read the leaflet and this is one of the side effects of the drug. Fortunately, I can eat foods I could not eat before, like spinach and other greens.

Carol