Just had surgery: Diet and new meds

[SarahChelli]

I was diagnosed with Crohn's disease in 2007 and just recently had to have surgery to take out 4 inches of my large intestine, my appendix, and 4 inches of my small intestine (the ileum) due to an abscess that just wasn't leaving me alone!! I have been on Remicade since 2008 and at first it did seem to really help with the symptoms but over the past year or two I noticed that the Remicade was not helping at all anymore. I have tried to pair the Remicade with Imuran but it hurts my joints and I am unable to walk. Recently I saw a GI specialist in London and he told me the Remicade is not working for me anymore, has anything like this happened to anyone? And what other medications did you try? Because the Remicade is not working, the specialist said Humira would be the same and not work as well. There is a new medication coming out apparently, supposed to work the same way as Remicade so I am hoping this may be another option for me. I'm excited to start this new path after having surgery but am worried that I won't be able to find a medication that is going to help with the overall inflammation. I am also trying to focus on my diet but it's been very tough for me because I can't seem to gain any weight (I'm at 94 lbs right now after surgery) and am usually only around 100 lbs (over the past year or so). I'm scared to eat carbs and fatty foods because of the inflammation but I need to gain at least 20 lbs. If anyone has any tips for me in terms of diet and any medication I would love to hear about it! Thank you

 

[maimmie]

I don't know if i have alot of tips for you but I wanted to say you are not alone. I was diagnosed with crohns disease 7 years ago. I had a resection two years ago and have had failed attempts with both remicade and humira.
I'm currently waiting to hear if I qualify for to participate in a clinical trial for a new drug that is along the same lines as remicade and humira but is supposed to target inflamation in the bowel more.
I thought this info might be helpful to you because I see you are in ontario. My drug trial is taking place in Oshawa, ontario. I don't know if thats too far for you or if maybe there is something like it in your area?? I could give you the name of the GI it is through and the nurse I'm in contact with. She mentioned to me there is another trail starting up shortly they are looking for participants in too.

As for diet after surgery I was given a list of low residue foods i could eat. Did anyone do that for you? I found I gained weight slowly but surely over several months and had pretty good health for a while.
Hold on tight, it will all get better! that what I'm telling myself right now anyway!

 

[PsychoJane]

Hello Sarah!
I don't know much about the treatment to come but I might be able to give you a few tips for the diet. As Maimmie said, I guess you should have some sort of diet to respect for a few days/week post-surgery (I don't know how long it's been since). There are things that I think you can incorporate in your diet even it is low residue.

To gain back your weight you will be looking at getting the right intakes of proteins (probably easier with meat, fish, egg, milk (if tolerated), cheese at this point since vegetable/vegetarian protein are usually fibrous so not the best at the moment probably). Since you are post-op, for your actual weight you want to get roughly 65-85gr of protein a day (for example: 1chicken breasts ~27gr / 1egg~6gr / 8ozmilk or yogurt~8gr / 1/2 cup cottage cheese~14gr). Later on you won't need as much as that but for the healing and the weight gain it is important to eat of lot of them. You can get protein powder if you have trouble eating enough of them.

You want to get good carbohydrates at the moment you can probably get them safely from rice, potatoes, pasta/bread (if you are not gluten intolerant), fruits pureed or cooked fruits (probably apple/banana/abricot would be fine at the moment).

You also want to have good fat: from certain oils: flaxseed, olive, sunflower. Nuts butter could be an option for you if you tolerate them fine. Excellent way to get your fat (and protein!) is through oily fishes (trout, salmon, tuna, mackerel, sardines, swordfish... to name a few). Nothing prevents you from throwing a spoon of oil in a bowl of soup to get additional calories and the benefits from the fat to gain your weight. I like to dip my bread in some balsamic vinegar+olive oil instead of the traditional butter.

 

[SarahChelli]

Thank you both so much for your replies, I really appreciate it! My recovery is going quite well in terms of me being able to eat...I was worried my appetite was going to take a while to get back but I've been doing great so far. In reply to your post Maimmie, I wonder if it is the same drug my GI specialist told me about. I was referred to this GI specialist by my specialist, his name is Dr. Brian Fagan, same one? I have an appointment with my specialist this Tuesday so hopefully I will get some more information about the drug.
Thank you PsychoJane for all the tips on my diet, I will definitely stock up on the fish! But everything else you named, that's what I've been sticking to!
I will write back on Tuesday when I know more about this new medication and if you could keep me updated Maimmie or give me any information that would be great thank you so much!

 

[maimmie]

Is the new drug a clinical trial drug? Thats what mine is. The GI I'll be seeing is Dr. Green, so not same guy. But I wonder if we could be getting the same drug?
I hate to say I don't even know the name of the new drug they are giving me. I can tell you its an infusion, like remicade, that I'm getting once a month.

 

[Keepingfaith]

Remicade gave me Drug Induced Lupus & then I was switched to Humira. Humira is simmilar to Remicade but it is made from ALL human antibodies. The Remicade has mouse in it. Honestly, Humira was the best drug I've ever been on. My only complaint was, even with an increased dose, it simply didn't last after day 4 of the shot. Then I switched to a biologic called Cimzia. Which I am currently on.

Is Cimzia available in your country? It's approved in the US & is the newest biologic used to trat Crohn's & the fastest acting biologic. If Cimzia is going to work, it's going to work quickly. I've heard of people from other countries getting their medication through other countries but the clinical trial could really do you some good.

Take care!