A new cure for crohn's and UC

I know this is an old post but in case others are considering Entyvio,  I think it's important to know that Entyvio causes weight gain in a lot of people. And not because they are getting healthy. I gained a lot of weight. And working out hard and consuming 1200 calories a day and not shedding a pound and I haven't been on steroids in years. And I'm not the only one. Entyvio definitely messes with your metabolism. If I could just tone up, I would be okay with the weight gain but my normally muscular body can't even do that now. So I'm in remission but now have terrible body image. It sucks being young and having to cover up your arms and legs in the summer! I don't care about perfection here, but it'does be nice to at least go somewhere in a pair of shorts and a tank without looking like a big lumpy marshmellow. Not sure if I'd rather deal with all this or go back to nightly bathroom trips. 

Hi Endi, 

I'm still on Entyvio, now 7 weeks apart and have been on it now for 17 months. Got off Prednisone completely end of January after 16 months on that. Began tapering off slowly after 5 months- took full year to get off it. I thought it was just prednisone to blame for the 35 lbs I gained. Dropped a little weight during that taper process and after 3 months completely off prednisone finally much of the weight came off. Feel so much better, though I am a bit marshmallowy, too. Figured hard to tone some of those muscles because of all the vertical & horizontal cuts I've had- guess I don't work out that much either. Unfortunately, I'm now struggling with prolapsed pouch, getting tested for it Wednesday with probable surgery to follow. In last 3 weeks I'm losing about 2 lbs week and even though I'm eating more still losing. Pretty happy about it though am at point now where I need weight loss to stop. Do think the Entyvio has helped, but I get what you're saying. We continue to trade one thing for another.

good luck- 

laurie

What is causing the weight gain? What is the mechanism of action of this drug?

A prolapsed Pouch? How does that happen? What can you do to prevent it? 

Entyvio is a biologic that works on white blood cells in the gut. I did not see weight gain listed as a side effect. Most reviews I saw indicated weight gain as a good thing.

Perhaps weight gain is a side effect of IBD remission? I never had much of a weight problem until my colectomy. At that point, all I did was gain weight. I think my body was used to not getting full benefit of my consumed calories, not to mention the known propensity of an inflamed colon to shed large quantities of protein. Once the diseased colon was gone, I basically was overeating. Or maybe I am just chubby genetically!

Unless you exercise to keep your metabolism up, your body will lower the metabolism in response to reduced intake. 

Body image is important, but, remission really is a good thing.

Jan

Brewbirds, a prolapsed pouch is when the top portion of the pouch becomes detached and pushes down through the anal canal, usually while on the toilet. It can block the outlet, making it difficult or impossible to empty your pouch. 

The best thing you can do to prevent a prolapsed pouch is not strain on the toilet. Choosing your surgeon very carefully is also important (but already past for most of us).

Hi Scott,

Are you saying that if a surgeon doesn't attach pouch well enough it can cause prolapse? I hadn't heard that it's the top part that prolapses. Very little info out there on it! I do know it's rare, which is why there's few surgeons who do repairs/revisions.

I haven't found anything in the medical literature about causes of pouch prolapse. I'm guessing that a full thickness prolapse may be related to surgical imperfections.  OTOH mucosal prolapse probably has nothing to do with the surgeon's work.  In any case, bad luck may be the biggest factor for both types of prolapse. 

Strictly speaking, a prolapse is where it protrudes from the body. But, I've also seen internal defects described as prolapsed. An example is intussusception, where the intestine "telescopes" within itself. It is not about the surgeon constructing the pouch correctly, as the intestines have the tissues of the mesentery to hold them in place. It is attached to the posterior abdominal wall. Sometimes the surgeon needs to dissect it some to make the blood supply reach into the pelvis.

Anyway, weakness of the pelvic floor muscles, along with straining at stool, and weakened mesentery support can all lead to prolapse and/or pouch collapse. Surgical technique plays a role, but not the only role.

Jan

This past April, Dr Shen identified 2 prolapses in my jpouch during a pouchoscopy.  I have a distal anterior mucusal pouch wall prolapse with a fold blocking 75% of my pouch outlet and a very slight prolapse at the tip of the J area. In my case, nothing protrudes outside of the body. It is very painful, increases the frequency of (tiny) BMs, and intensifies pouchitis. My insurance would not cover B&O suppositories and the recommended physical maneuvering of the prolapse was very painful, thus unsuccessful.  I can use valium suppositories to ease some of the discomfort, but the pain & discomfort is still unbearable in my case, especially if I eat more than 6 grams of fiber a day.  I am having surgery in August to remove the folded portion of the major prolapse.  The slight prolapse will remain, as it causes no issues. 

Dr Shen said the exact cause of prolapses is not known, but straining & chronic, severe pouchitis may play a huge role. There are 2 types of prolapses: mucosal or full thickness. Historically, prolapses have been very difficult to identify with less than 1/2 of 1percent of pouches having prolapses identified (data from 2010 Cleveland Clinic study). In my case, Dr Shen first identified the major prolapse from a photo taken during a pouchoscopy performed by another doctor 14 months earlier. Of course he confirmed it with another pouchoscopy.  During those 14 months, I seeked help from 2 GI Specialist and 3 colorectal surgeons, none of which could identify the prolapse from this same photo nor their subsequent pouchoscopies. Included in these 5 doctors who could not help me were the #1 GI Specialist and the #1 colorectal surgeon in my state! Dr Shen is the greatest and we'll worth the 1000 mile trip to the Cleveland Clinic.

Laura

Interesting! Thanks for your post Laura's. Good luck with your August surgery! Would love to hear how you do after that! I , actually we, because my gastro and surgeon thought I had a pouch prolapse based on description - clusters of bowel movements , sometimes small but sometimes good size but usually 3-4 in a row after I move around a bit. I feel a hunk of tissue protrude, it's red but can't get picture because it goes back in after I push. Except for this my pouch is finally doing well- after 28 months finally sleep through night with no leakage!

Yesterday had a Dynamic Proctogram where they filled pouch with barium and then air and took lots pictures, though I was laying down. Told them it wouldn't surface in that position at the start. Finally, once all barium emptied they decided to try it with me standing/squatting. Fun! None of pictures showed prolapse, and both surgeon and X-ray tech felt pouch was great structurally, and not moving much when I was bearing down. Overall that is good except that still have this issue that is unresolved. Surgeon said even without that piece protruding, he would have seen a prolapse clearly from the way it would have moved. Said maybe anal lining is protruding but nothing can be done. Basically deemed it dysfunctional, not structurally, just that it doesn't work well, as I still have 15-25 movements a day, often in clusters, and often unpredictable. Still acidic even with 8 Colestipol daily, but good news is I am eating a wide variety of food so that is progress. Still rely on carbs and Rice Krispie treats when I'm at work or out.

Thinking I need good gastro Dr. and may work on referral to Dr. Bo Shen. Also have a scheduled surgical consult with a highly recommended surgeon who was at Clevelabd Clinic for many years and now at Northwestern. Now that my surgeon says not prolapse I was debating on canceling that consult but may be good to still talk with him. Interesting that your prolapse was diagnosed with pouchoscopy, and Dr. Shen saw what others didn't see. My guess is yours is way more pronounced/ advanced than mine since I have no pain and it retracts itself. Maybe mine isn't prolapse at all- just would like to know what it is and get it fixed.

Again, good luck with your surgery and hope you're not too uncomfortable during the wait. Are you having the surgery at CC?

laurie

I should also thank Jan and Scott for your replies in last couple days about causes of prolapsed pouches! I really appreciated your input as I could find little on it. 

Thank you both!

laurie

Laurie,

I wrote you a long, detailed explanation of how Dr Shen diagnosed my mucosal prolapse, but unfortunately it did not post. Frustrating!  I'm running out of time at the moment so I can't retype all of it right now, but here's the summary:

Dr Shen used 3 tests to diagnose the mucosal prolapse. An anorectal manometry,  a pouchoscopy,  and a Defecating Proctogram  (which I believe is the same test you had yesterday). The results of my proctogram were quite similar to yours: no significant movement when bearing down, but in my case they could see the prominent fold in my mucosal prolapse. I believe you are correct in saying my prolapse is more advanced then yours (if you in fact have on) because it was so obvious via pouchoscopy and proctogram. The volume studies portion of the manometry revealed diminished volume of my pouch due to the prolapsed anterior wall. Again, nothing protrudes outside of the body, but the mucosal lining of the pouch wall has separated from the actual wall. Whereas the capacity of a normal pouch is 200-300 ml, the maximum volume of my pouch is 60 ml due to the prolapse.

There is a big difference between mucosal prolapse and full thickness prolapse.  Did either of your doctor's mention one of these terms yesterday during your test? Perhaps you may consider keeping your appointment with the surgeon at Northwestern in hopes that you can find out what type of prolapse the other doctors ruled out and perhaps he might schedule a manometry test or another pouchoscopy. 

I hope you find answers soon! Congrats on sleeping through a night with no leakage!

Laura

Thanks Laura for details. It all makes sense and yes we did on 2 occasions discuss the two types of prolapses along with possible interventions for each. Unlike yours, the walls of my pouch showed no folds or little pockets which might not empty with the rest. I don't believe I have diminished capacity at all. I most likely, and luckily, don't have prolapsed pouch but perhaps prolapsed other. Hoping Dr. Shen or other good gastro might help resolve my emptying issues, and related high frequency of bathroom visits. Don't have, never had pouchitis diagnosed.

wishing you a successful surgery and recovery!

Laurie

Entyvio seems to be the source of a lot of weight gain according to the Entyvio Warriors support page (on Facebook). When I started Entyvio, I almost immediately started gaining weight really quickly. I was not on any other medications. I just though I was gaining back the 5 or 10 pounds that I had lost from being sick. But despite counting caliries, eating healthy foods, and exercising, I still kept gaining and still am. Now I'm 15 pounds overweight and there doesn't seem to be anything I can do about it. I've never struggled with my weight, even before I had IBD. If you request to join Entyvio Warriors on Facebook, you will see a lot of people blaming Entyvio for their weight gain. 

However, that being said, Entyvio has done wonders for my IBD and finally put me into remission. So I will keep getting Entyvio treatments, but I will continue to try to find out what Entyvio did to my body to cause this continuing weight gain. And then maybe I'll be able to treat that issue while still receiving my Entyvio treatments.

Ive been on Entyvio for 7 months now. It has helped with my chronic pouchitis but no remission. My doctor has added Methotrexate injections on top of my Entyvio, tincture of opium, 1 antibiotic pill (Augmentin) each day. All this just to keep my pouchitis mild to moderate. 

Anyway, I gained 20 pounds within about 6 weeks of starting Entyvio and until I read this thread thought it was because the Entyvio was helping my body absorb nutrients better. I think I am absorbing better but the weight gain was unusually fast. 

I still have pouchitis but seem to be able to live with it for now. My stools have form but I still go 10x/day because my pouch just can't hold much due to the inflammation.

4Acure- I learned earlier this month from Jan and CTBarrister, that you can not take augmentin with methotrexate. Ask your doctor about it, as I did, and stopped taking it immediately. 

I guess I'm a entyvio success story. It allowed me to reconnect my pouch due to chronic pouchitis resistant to all meds. I'm on my 7 th infusion. I'm also allergic to it and I'm pre med with pred and I've had no more issues since. I did gain weight but it was the weight I lost being so sick and also all the junk I was eating! Lol, I was bad but hey, I literally could not eat for months.  I've had no problem losing weight, I exercise, do weights, I feel great! My bloodwork is 100 percent perfect! This drug worked right after the first infusion. I just pray that I can get a few years on it till something else comes along. I was miserable with the ostomy And yes for UC people it is a miracle drug.ive met many in the infusion room who are doing great. Ps people on the warrior board complain of thinning hair, mine got thicker. I guess my body needed this drug, I am grateful and I am very anti meds. 

Alleycat, 

grear news to hear that Enyvio has given you such reliłef!

ljz

For me, the excessive weight gain has nothing to do with remission since being on Entyvio. I've been in remission before without this problem. It's like my muscle tone and metabolism is now almost no existent. My hair falls out worse than ever. And I felt more energy when I was flaring and waking up every night before taking Entyvio than I have now since being on Entyvio. The Entyvio fatigue is depressing. My flares were pretty minor before so it's not like I had a huge problem with malabsorption before. I'm working out and eating minimal calories and my weight is still going up. And I'm young.  And I'm depressed since starting this drug. I have zero motivation to do anything fulfilling and I feel emotionally bland and void - almost to the point of indifference. Working out is the only thing that boosts my mood but it goes back down as soon as I walk out of the gym. And this is completely opposite from the personality that I've always had my whole life. I've never had these problems before in my life and it all started happening almost overnight since I started Entyvio. 

So for me Entyvio put my symptoms in remission but made my quality of life worse in other areas. So my options are:

1. intestinal health, a depressing lumpy body, fatigue, depression, emotional indifference, and extreme irritability 

2. Minor flares, deceny energy, happy disposition, motovation, decent physical shape

My dilemma is even though my flares were minor, they were still enough to potentially cause me to lose my j-pouch and Entyvio is the only thing that puts it in remission. Ito makes me feel like I've made a deal with the devil and I have no other options. 

And just because it's not listed as a side effect doesn't mean it's not a side effect. Remember Accutane? Crohn's wasn't listed as a side effect of Accutane but we all know now that it was.

Working out and earring min calories will cause your body to go into starvation mode and mess things up. Maybe that's why your losing hair, not the right or enough nutrition. Just a thought. Hey, I've gain a few extra pounds but have not had any trouble losing them when eating healthy and exercise. I use the free calorie counter app. My GI says I'm absorbing better. Yeah, I get the fatigue and some days it's hard to push through but it is what it is. I'm actually happier on this drug cause I almost lost my pouch last year, needed another ostomy, oh that was depressing, and Entyvio has allowed me to reverse. Good luck and I'm glad it's keeping you healthy.