Remicade and surgery in my future/ Crohn's

[NuttyGuts]

Hi All,
I was diagnosed with Crohn's of the terminal ileum in 2014, but am sure I have had this disease most of my adult life. (I became lactose intolerant back in the 1970's and had many urgent diarrhea episodes throughout the years). I was sure I could deal with this condition using diet and lifestyle changes alone, but have now accepted the fact that years of scar tissue have left a stricture too small to continue as is. That was a hard blow for me to accept. It's amazing how several days of sharp pain changed my attitude. I am now on 20mg prednisone and 100mg of azathioprine (imuran) a day, with my first Remicade infusion scheduled for Sept 25. (First I have to get a flu shot and Hep A/B vaccine.) The surgeon and GI doc both think surgery will be a given around late October. Their advice is that it is better to schedule surgery as an elective rather than wait til it is a total bowel blockage. (Right now it is partial with an opening only 8 mm.) So...............I was happy to find this forum, and look forward to sharing information with you and learning from the experience of others. Thanks for being here!

 

[Tuff]

Welcome to the forum. I've never had strictures, but they sound pretty awful. I've had to be on medication since day one because I get fistulas. I'd love to be able to control my disease with diet alone, but that could put me in a world of hurt. I'm using a combination of diet and medications.

 

[NuttyGuts]

Hi Tuff,
Thank you for the welcome! Are you using any particular diet or just going with what works for you day by day? I have been reading about the Specific Carbohydrate Diet, which seems to work for many. I wouldn't be able to start it until after my surgery, though. Because of the stricture, the doc wants me to eat/drink whatever I can to get my weight and strength up before the surgery. I eat lots of white rice, Cream of Rice cereal, mashed potatoes, etc because they can get through okay, but none of those are allowed on SCD.

 

[Tuff]

I was a vegetarian for about five years. My new gastroenterologist's dietary advice is as follows: No alcohol, no cold drinks, one cup of coffee a day.
No red meat, corn, soy, eggs. No dairy other than yogurt. No sugary foods.
It's almost vegan, in fact I've been thinking of going vegan full time. I tried it in January. I also have food triggers I avoid. You could keep a food diary to see what foods bother you. Can you eat nut butters? They have a lot of calories and nutrients.

 

[NuttyGuts]

Hi Tuff,
Sounds like a sensible diet without being too far out there. I worry about whether or not I could do the SCD because I love crackers and rice and bread so much, but I am not going to worry about all that until after the surgery. Yes, I love almond butter and peanut butter, and sometimes will just eat it by the spoonful right out of the jar!
What medications are you on now?

 

[Jelly loves Peanut butter]

Hi All,
I was diagnosed with Crohn's of the terminal ileum in 2014, but am sure I have had this disease most of my adult life. (I became lactose intolerant back in the 1970's and had many urgent diarrhea episodes throughout the years). I was sure I could deal with this condition using diet and lifestyle changes alone, but have now accepted the fact that years of scar tissue have left a stricture too small to continue as is. That was a hard blow for me to accept. It's amazing how several days of sharp pain changed my attitude. I am now on 20mg prednisone and 100mg of azathioprine (imuran) a day, with my first Remicade infusion scheduled for Sept 25. (First I have to get a flu shot and Hep A/B vaccine.) The surgeon and GI doc both think surgery will be a given around late October. Their advice is that it is better to schedule surgery as an elective rather than wait til it is a total bowel blockage. (Right now it is partial with an opening only 8 mm.) So...............I was happy to find this forum, and look forward to sharing information with you and learning from the experience of others. Thanks for being here!

Hi and welcome to the forum! Sorry you aren’t feeling well and will be going through surgery. My son is 11 and was diagnosed 2 years ago. He is currently on remicade and methotrexate and is doing great. Hoping remicade will do the same for you.

As for diet, when my son was flaring I kept him on low fiber (no more than 10-15grams daily.). Also low sodium when on steroids to prevent bloating. I tried to keep a food diary too but nothing really ever made it better or worse. I did cut out anything with seeds, nuts, popcorn but my son now can eat anything without problems.

Good luck on your upcoming surgery and remicade and again welcome!

 

[Tuff]

Hi Tuff,
Sounds like a sensible diet without being too far out there. I worry about whether or not I could do the SCD because I love crackers and rice and bread so much, but I am not going to worry about all that until after the surgery. Yes, I love almond butter and peanut butter, and sometimes will just eat it by the spoonful right out of the jar!
What medications are you on now?

I'm on Stelara and Methotrexate, and in remission right now. My first doctor used the bottom up method, so I've been on most of them.

 

[NuttyGuts]

Gosh, I am overwhelmed when I read about some of these drugs and their potency and their side effects. I haven't had a surgery since my tonsils out at 7 years old and have lived a relatively healthy life, so this is all very scary to me! I am grateful to you and all the folks on this forum that share their knowledge with us newbies facing this whole new world. Thank you!

 

[Tuff]

As a comparison, read the warnings on a bottle of Tylenol. I don't have any side effects from the medications I'm on right now. I too was shocked when I got my Crohn's diagnosis. I've always cooked from scratch and led a healthy lifestyle. I got it anyway. It's helped me to read up on the disease and the treatments and diet. It's scary but you will get through it.