• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Entyvio weight gain?

I've had a lot of weight loss with crohn's, and surgeries. Will my appetite return and will I gain some much needed weight? Also, once I start this treatment, will anyone be monitoring my liver enzymes and testing my immune function. When my GI set up Entyvio for me, he just said he will see me in 3 months? So I guess he won't be doing any before then?
 

crohnsinct

Well-known member
Monitoring would be. question for your GI. Mydaughter's GI has her get full blood and stool abs prior to every infusion (she gets monthly infusions). Once she is in a good remission she will be able to go to blood labs every 12-16 weeks and stool testing every 8 weeks.

AS for weight gain,I would imagine thatches would depend on whether or not ENtyvio works to get your IBD under control. ENtyvio takes 12-26 weeks to become effective. For my daughter it took almost 11months to become effective and lots of tweaking of dosage and interval.

Good luck.
 
Thank you, I believe my GI said 3 months time and then I'm not sure what he does with that if it doesn't work? My concern is the stricture that is closing up more every time I have inflammation and then healing and I am left with no treatment until the entyvio kicks in. I asked him a couple of times to give me something to make me more comfortable in the meantime for nausea and for the ulcerations around stricture and inflammation and ulcerations in and around the anus. He said well, that is from diarrhea and wiping (no kidding) and said the only thing I can try is an acid inhibitor. Didn't change things? Well, some days or most days I'm just plain suffering all around not just in butt area but with the discomfort of eating, weight loss and nausea. Sometimes I just have to lie down on my side in tears until it passes. .

11 months is a long time to be on it, I guess your daughter's doctor was hopeful that he continued to tweak it in hopes it was just right for her. May it be successful for her!
 

crohnsinct

Well-known member
That is unconscionable! Your doctor should have placed you on a bridge therapy to hold your disease while waiting for the new drug to work. My daughter used Tacrolimus (she had been on steroids too much the previous year) but when that failed she went back on Prednisone and after being on that too long she went to Entocort. They should definitely give you something for the internal inflammation AND the anal issues (my daughter used proctozone...or at least I think that is what it was called...but also used steroid suppositories).

If the stricture is scar tissue no amount of medicine will help that unfortunately. But if inflammatory there is plenty they can do to make you more comfortable. I would ask again.
 
Thanks. I have crohn's of the small bowel,. A few months back the doctor did a colonoscopy in hopes of determining what was happening at the joint and what was possibly happening further up without doing another CT scan? If he reported ulcerations around the stricture at the joint, which he determined to be crohn's related, , wouldn't that indicate that some inflammation was going on? I haven't been well and have been telling him that, but maybe he doesn't want to add another med at this time because he won't know if the Entyvio is working or not? But it is a bit of a long wait and possibly a long shot?
 

crohnsinct

Well-known member
Yes the ulcerations would indicate disease activity but you mentioned narrowing due to the inflammation/heal cycle and that is generally scar tissue. Your GI would have told you which he thought it was and if they can't see, then they usually treat the inflammation and if inflammation goes down but you still have a stricture then it is most likely scar tissue. I don't have a lot of experience with strictures so hopefully someone else who has will be along to set the record straight.

I honestly have never heard of a doc switching IBD meds and not giving a patient a bridge therapy, especially with a slow to action drug like Entyvio or Stelara.

It is a long wait and the success rates aren't that great and they are even lower if you have previously failed an anti tif drug. However, they are doing a lot more with dosing and intervals and recently are reporting better success rates.

My daughter's doc hung in for such a long time because she is in college and the next step would be proctocolectomy and he really wanted to make sure we tried everything.

Standard dosing is 300mg every 8 weeks but if that doesn't work they could shorten the schedule to as frequently as every 4 weeks. My daughter got insurance approval for 600mg every 4 weeks and that combined with SCD seems to be working. She isn't perfect yet but best she has been in 4 years.
 
Thank you for sharing. Yes it is a stricture which is made up with layers of scar tissue. He tried to intubate the terminal ileum but could not get through, but it was visualized Apthous ulcers were present. His post operative impression was active CD in terminal ileum. I usually don't have a problem with colonoscopies, but I did not feel well after this one. Through sedation I could feel the pain in the area he was trying to get through.

Well, almost there, a few more days and my first infusion, hopefully that will go well? Until it starts showing improvement, all I can do is watch my diet and not stress out about anything, but the last year and a half has been very stressful I sincerely hope that your daughter's treatments will reach the point of a prolonged remission. Permanent remission would be even nicer. All the best!
 

my little penguin

Moderator
Staff member
Since your disease is in the small intestine have you tried formula only as a bridge therapy (exclusive enteral nutrition)? They use it in kids instead of Steriods. Works as well as steriods most of the time.
Ds was dx at age 7 and is 16 now .
He has used formula few times .
Also curious if you gave disease in the small bowel did you fail Stelara already ?
Entyvio tends to be used for large intestine inflammation and works very well there while Stelara tends to work better on the small intestine.

Ds has been on Stelara for the pas 2.5 years (after remicade and humira )

the formula doesn’t have to be special (boost or ensure -sometimes peptamen or module are used )

 
Thank you for the advice. Are you referring to TPN? I had that when I was in the hospital?
Guess the doctor is hoping Entyvio will work being the disease is in joint? Guess it can work for crohn's in small intestine too if one is lucky enough?
No. I haven't tried Stelara yet? Was just thinking the other day to get some information about it ahead of time, (just incase Entyvio doesn't work), and see if it's here in our Country and if it's covered. Some drug treatments are unreachable if there is no coverage?
 

my little penguin

Moderator
Staff member
Tpn is different than een (exclusive enteral nutrition)
Tpn is in the vein usually inpatient
Een is simply drinking complete nutrition shakes such as boost or ensure (polymeric)
Peptamen or peptide or moldulen (semi-elemental )


With no solid foods
This you drink orally
Although some use a nasal gastric tube in the nose if they can’t stand the taste
 

crohnsinct

Well-known member
That is a great suggestion MLP. It would get you the needed nutrition but it would also handle the inflammation while you wait for Entyvio to kick in.
 
If you mean regular Boost or Ensure, there is something in those drinks I cannot tolerate. I get severe diarrhea after drinking them. I looked up the ingredients and think I may be allergic to one of the ingredients? I am lactose intolerant and it does have milk protein in it? I was thinking it may be a artificial sweetener like the fructose, or a thickener, I have no idea why this happens to me.
 
I will look for EO28 Splash

I do have a shellfish allergy

Can you eat along with this drink . I need to eat, as I am only in the 60 -67 pound range
 

my little penguin

Moderator
Staff member
This replaces all your calories
So you don’t eat solid foods
Ds did this 3-4 times
Starting at age 7 (50 lbs)
And still able to do it at 150 lbs
He drank 8 boxes of peptamen jr at age 7
Each box was 250 calories so 2000 calories a day
At 13-14 years old he drank 2600 to 3000 calories a day of neocate jr
It’s complete nutrition - all vitamins and minerals /fats etc....
He had two boxes for breakfast , lunch and dinner
Two extra were for snacks during the day
That way he wasn’t hungry
And gained weight
 

my little penguin

Moderator
Staff member
You can drink it in addition to food to help gain weight quickly
But it doesn’t act like a steriod for inflammation then
It does help with nutrition though
Ds drank it with food since age 7 until 16 when he wasn’t in een to keep weight and growth at normal levels
He is now 5’10” and 159 lbs
So it helped a lot
 
Wow sounds very interesting, although I am not familiar with the brands you mention in your post?. While I may not go on a complete fast from foods there are times I don't eat for a day or so, because I am too sick to eat, so stick with clear fluids more or less, so it would be interesting to try this. Although wouldn't this be expensive on a long term?. Around here, Boost, Ensure, Glycerna is sold in cases of 6 bottles ranging from $8-$10, mind you if nothing else is eaten,, that would be $70 a week $280 a month so maybe it isn't so bad. But getting back to the ones we have here, I cannot drink them. Will check stores for the ones you mention. Do they have an adult version for neocate jr?
 

my little penguin

Moderator
Staff member
You need a docs prescription for vivonex ready to feed (Walgreens ) in the US
It’s adult version of neocate jr
Amino acid based
Your Gi should have samples to try
Insurance paid for ds for 9 years due to crohns especially when it’s sole nutrition
You won’t find the specialty ones at the regular store in the US
Kate farms is over the counter (you can order online or at the health food store )
No milk in it
But it’s pricey


orgain vegan isn’t complete nutrition protein but can be found at vitamin shoppe and wegmans
More calories than clear fluids


Over the counter
Owyn is another vegan plant based one
I know it’s on the same lines as tree nuts so out for my kiddo but not sure about shellfish

This one is at the grocery store as well
Plant based
No milk
 
Top