New: questions, Strictures, Problem foods, Myralax, Vitamins, Humira

[Sparkle2012]

I have been tested for nutrition and it was way low. I'm much much better since I started faithfully taking vitamins, Myralax (not sure if that's hurting or helping) and the Align - oh my goodness that was a miracle. Also I'm taking B12 shots which have really helped weekly. They are about to put me on monthly I think. I'm really scared about taking Humira or any of those medicines - because I'm older - and because of secondary diseases that take advantage of that situation. My strictures are my worst issue and I know I am probably going to have a surgery down the line because one showed up on the terminal illeum which I know is common in Crohns. The others didn't show up unti the camera pill and there are several. I understand now the process a little better and I go on soft foods during cramping....and don't eat big meals.....I'm trying to discover a method to determine which foods are doing the hurting....sometimes it's a cramp (stricture) and sometimes a burning (foods?). I will see the Mayo doc 6/18 and hope to have more answers. Do you know anyone who has been on Humira type drug long term....10 years or more? I'm considering the SCD diet but my husband is taking me on vacation in July over the holiday and I don't want to start something impossible to follow that week.

 

[jonathanzn]

I have structure too, and now I can only take liquid diets. Pred seems not work for the symptom and I'm taking imuran now.

 

[Sparkle2012]

I'm so sorry it is causing you such a lifestyle change. It's so much harder when you can't even eat things you like AND still have pain. My doctor told me that the liquid diet works well with Crohns. I guess you must find other ways to enjoy life besides food ....and hopefully you don't have pain now? Have you considered surgery? I've read that there is relief after the strictures are removed.

 

[jonathanzn]

Usually I don't have pain, except when there is too much food in my tummy. I heard that surgery was the last choice of crohns, because most of people have to take another surgery in years.

 

[Irene3]

Hello, and welcome to the forum. I Havnt heard of anyone on humira for ten years, 7 is the longest someone on here wrote. 2-4 remission seems to be the most common, then it no longer works for most, by what Iv read, but then a year or so later, you can begin it again. Same with influximab (remicade).
A few years ago, before my bowel resection, eating was agony. My gi suggested a liquid diet, but told me because of the stricture being 50cm at the time of my barium follow through, that I'd need surgery. After the resection, even though I still had D, I could eat without agony. I'd still get a lot of cramping at times, and I had active crohns not long after, which they say is normal with crohns, but some on this forum, have been in remission since their bowel resection, so everyone seems to be diff with crohns, and that's what makes it hard. Some say low residue settles their symptoms, some are the opposite on the Scd diet, which is bad if you have a lot of stricturing, as you could perferate your bowel. Humira can help with inflamation, but only surgery will completely get rid of strictures, because it's scar tissue. But... If you have more then a few mm left (eg. When I have no inflammation there's a 5mm gap, left for food to pass through), then being on humira may settle your crohns, and you won't need surgery. Iv only just started humira, and even if in 2-4 years I need 10cm of bowel recsected, I still think it's great. Because then, I may not need another recsection, or at least have 2-4 years on influximab, and/or humira, entecort...blah blah, before I could need another.
Your gi is best to tell you wether your symptoms are so severe that it's best to have a resection, or try to just reduce the inflammation.
Also...there's balloon dilation for strictures, and when I asked about it on here, one person said they had their stricture ballooned 4 years ago, and still had no stricture symptoms. So if I had of needed a bowel resection with the 10cm currently stricturing, I would of asked for that.
Hope it helps, best wishes xo

 

[jonathanzn]

In the forum wiki of "stricture", it says that:

It has been shown that Remicade (Infliximab) can promote stricture formation or make them worse because it promotes scar formation during healing.[3] Some doctors suggest before utilizing Remicade (Infliximab), Cimzia (Certolizumab) or Humira (Adalimumab), a patient should be tested to see if there is an inflammatory component to the stricture and if not, have surgery instead.[2]

So I doubt that humira/Remicade could do for stricture.

 

[Sparkle2012]

Wow his forum is so helpful. I'm so glad I found you all.

 

[Irene3]

In the forum wiki of "stricture", it says that:

It has been shown that Remicade (Infliximab) can promote stricture formation or make them worse because it promotes scar formation during healing.[3] Some doctors suggest before utilizing Remicade (Infliximab), Cimzia (Certolizumab) or Humira (Adalimumab), a patient should be tested to see if there is an inflammatory component to the stricture and if not, have surgery instead.[2]

So I doubt that humira/Remicade could do for stricture.

This is true...Iv been on pred for a while to reduce inflammation, however, active crohns symptoms, humira helps with. Even when my Crp went back to normal, I had 10-15 D per day. Since I started humira, 2-9, in a month, and it takes 3 months to fully start working. My stricture shouldn't get worse from humira, as there is no inflammation. But your gi would know wether your stricture is so severe, that it is your best option. As I said, his the best person to ask