Posted 05 September 2015 - 07:38 PM
For the last year, I've been experiencing severe abdominal bloating after eating some foods. I'm talking serious, 8 month pregnant looking bloating. I tried avoiding certain foods but it seems like I could never get rid of all the problem foods. It got progressively worse. I gained about 10 pounds that would not go away. I went to the gastro who prescribed an antibiotic regimen. I tried three different kinds (opted not to try Neomycin), with no resolution. My blood tests were mostly normal except some anemia and some sort of proteins that are present in people with Crohn's. I did not have a gluten or lactose allergy. I did the breath test which came back positive for SIBO. Then I did a colonoscopy/endoscopy which found ulcers on the leocecal valve consistent with Crohn's. I did the camera/pill capsule which came back normal. So the diagnosis now is mild Crohn's and SIBO. I'm going to try Vivonex beginning on Monday as my next step. I'm going to try it with the Crystal light flavor packet. I am nervous about Candida and worried that this is going to be a really difficult process. But I'm so tired of the bloating and the Low Fod map diet is so miserable, that I want to try and get a handle on this. My gastro hasn't really given me any direction on how to do Vivonex, so I'm going off my internet research. I'm planning to hang out at home most of the time. I feel like if I'm not doing much I don't need to consumer 2000 calories. I'm thinking 1200 should be sufficient.
Posted 08 September 2015 - 12:01 AM
I'm not going to bore everyone with too much detail. I started the Vivonex today. I drank water until the late afternoon and tried to not think about food. This meant turning away when I saw food and not talking about it with others. When I got home, I mixed the Vivonex with some warm water in the blender. The powder didn't smell great, but I just dumped it in and closed the lid. I have to tell you, the worst part of the Vivonex for me is the appearance. It's milky white/yellow. I plugged my nose and drank one serving all at once. I then immediately rinsed my mouth out and drank some normal water. I didn't really have more than a brief taste, so it wasn't a big deal. I can't imagine someone sitting around sipping this stuff. I definitely found the Bowel Prep for the colonoscopy way way worse to consume. I'm not sure I'm going to need the Crystal Light. I doubt, though, that I'll be drinking 2,000 calories worth of this stuff every day. I'm a little hungry, but nothing too bad. No diarrhea so far. Day one, check (too optimistic?).
Posted 08 September 2015 - 03:26 AM
Posted 10 September 2015 - 06:26 PM
Day 4. I went out of town for work which was tough because that's when I usually get to eat fun restaurant food that I don't at home. But, I had nothing but the Vivonex and water. I've started having a hard time with the Vivonex where it wants to come back up immediately when I taste it. I plug my nose and chug it, but then the after taste in my mouth is what triggers my gag reflex. I've found that rather than rinse my mouth out, it's best to drink fizzy water immediately after the Vivonex. It seems to wash the taste out better. I kept dreaming last night that I'd slipped and eaten something, which would be awful at this point to start all over from the beginning. I want to eat everything and anything, but I feel like my sweet craving is in overdrive. This could also be a function of detoxing from sugar. I haven't been using Crystal Light for the Vivonex, but decided this afternoon to just mix some Crystal Light and water so that I would feel like I'm having something sweet. I feel kind of guilty/worried, but figure it should be ok. If you can put the Crystal Light in the Vivonex, why couldn't you put it in water? I think I'll limit myself because I don't want to do anything to mess up this process. Still have a persistent headache, though consuming so few calories has solved my insomnia problem - I'm wiped out at the end of the day. Still no adverse stomach problems other than hungry - no diarrhea or anything. In the mornings, my stomach looks like it used to look pre-SIBO, but by the end of the day it has puffed up again. I've still only been doing 2 packs of Vivonex a day and haven't had any serious energy issues. I've been working and walking around doing normal stuff. I emailed with my doctor who suggested some people do this for 3 weeks. I really really hope I can stop at 2 weeks. It is so hard to not eat.
Posted 11 September 2015 - 09:56 AM
I'll be waiting for the next updates.
Posted 12 September 2015 - 11:19 AM
Day 6. I only managed to do 1 packet of the Vivonex yesterday. The headaches have all but subsided and I'm trying to just do the Vivonex when I feel really hungry (and yesterday I didn't). Since this diet is a short time, I'm not going to worry too much about not having 1800 calories/day. Since the onset of my SIBO/Crohn's, I've gained 10 pounds, so I have a bit of a cushion. My energy level has been fine. I went swimming yesterday and didn't feel too drained. The biggest battle is boredom and thinking about food. It's a very isolating thing to not be able to say to my friends, "Let's get a cup of coffee" or "Let's go have lunch." But…it's only 2 weeks. I drank a very tiny bit of Crystal Light water yesterday. The last two days when I've done that, I've later had to go to the bathroom and it feels like I've eaten something super spicy. Not pleasant. I'm wondering if it's the Crystal Light or something with the bacteria die off. The Vivonex continues to be revolting, but I think I've got the system down. I pinch my nose, chug, keep my nose pinched and breathe out of my mouth and then chug some sparkling water. That seems to eliminate most of the taste. I had a little bit of stomach discomfort yesterday, but nothing bad. Mostly, the difficulty with this diet is psychological for me. I want food. I am also starting to get concerned about what I can eat when this is done. Is my body going to reboot so I can eat normally again? Will I have to continue the low FODMAP diet? Because I hate that diet and it makes my life an absolute misery.
Posted 12 September 2015 - 03:05 PM
I don't think a vivonex course would help me. Still curious to learn how it works for you.
Posted 12 September 2015 - 11:29 PM
Posted 13 September 2015 - 04:53 AM
Good luck with your treatment. Share those breath test results with us when you have them.
Posted 14 September 2015 - 09:15 AM
Day 8. It is super hard to not eat. Yesterday in particular, I kept thinking about food. I had some diarrhea, which is weird since there shouldn't be anything left in my body at this point. It wasn't too severe. I managed to choke down two packets of Vivonex, which feels like it's just going to be my daily max for the duration of this thing. I've gotten a blister inside my mouth close to my gum line. It hurts and I never have these, so I'm assuming it's related to this diet. I asked my doctor if it's Candida and he said no because Candida doesn't present there. But my internet research suggests otherwise, so I'm going to keep an eye on it. If it gets worse, I'll go to my GP. I'm hoping to keep busy enough today to not think about food. Fingers crossed!
Posted 14 September 2015 - 10:16 AM
Posted 15 September 2015 - 05:19 PM
I have to vent on this, day 9. I want food. I want chocolate, coffee, bread, cheese, milk, juice, eggs, etc. etc. etc. I want food so bad it's really tough that I've still got 5 days to go. I want Indian food, I want Mexican food. Italian. I haven't had any luck with the nutritionists I've contacted to get an appointment, so I still have no idea what I'm going to be allowed to eat if I pass the breath test next Monday.
Posted 16 September 2015 - 09:39 AM
Posted 16 September 2015 - 11:29 AM
Thanks jaumeb! I took a look at her site and it's interesting. I finally got an appointment with a nutritionist for this weekend to find out what I can eat post-Vivonex. The problem for me is that I'm vegetarian and I don't like a lot of foods. Day 10 and I'm really hungry.
Posted 16 September 2015 - 02:04 PM
If you ever consider abandoning vegetarianism for health reasons there is a blog called "omnivorous once more".
Posted 18 September 2015 - 01:40 PM
Day 12. I'm still obsessing about food. Spent a couple hours yesterday watching the Food network. I get really hungry in the morning and at night, which is when I drink the Vivonex. Aside from wanting to eat, I feel ok. I'm a bit tired, but still have plenty of energy to go work and get my stuff done. When I looked in the mirror today, my stomach looked like it did before I started having all the SIBO problems. I've lost about 7 pounds, but that's probably because I'm only consuming 2 Vivonex packets a day. The blister in my mouth is almost gone and I haven't had anything else to indicate Candida. I picked up a breath test from the doctor's office today and will do it Monday morning to see if I can start eating again. So no food at least until Monday night. As much as I want to eat bad stuff, it feels really good to have my stomach look like it's back to normal.
Posted 20 September 2015 - 10:08 PM
Went to the nutritionist yesterday. If I pass the breath test and can go back to eating food tomorrow, the plan is to stay on the low FODMAP food plan for 2 weeks and then start testing out individual categories of food to see if my stomach can tolerate them. Coming from no food for 2 weeks, FODMAP sounds a lot better than it used to. I have made a ton of food and stocked my fridge for the week. I'm really nervous about the SIBO returning. Since I've broken my sugar habit, I'm going to try and continue to avoid sugary sweets and stick with more natural foods for now.
So here's my final thoughts on the Vivonex protocol (and I will post the breath test results tomorrow). It's mentally really tough. It's hard not to eat and you really notice food is everywhere. The Vivonex was enough to keep me from getting too hungry. I did 2 packs/day for the duration of the two weeks - which translates to 600 calories and 4 grams of fat. It's 1 case worth of product. While I was tired frequently, I had enough energy to get my work done. The headaches went away after a couple days of starting Vivonex. Maybe because my Crohn's isn't super severe or because I didn't drink a lot of Vivonex, I didn't have any major stomach problems. It seems like people's bodies react differently to the Vivonex protocol, but I finally feel like I have my pre-SIBO body back.
Posted 21 September 2015 - 05:12 PM
I took the lactulose breath test this morning. Even drinking one glass of the liquid made my stomach really mad. The doctor called with the initial results. It's still positive for SIBO. He's put it back in my court as to whether I want to do another week of the Vivonex or try something else. This was pretty upsetting news, especially since my stomach has been feeling better generally. I can't exactly live off Vivonex the rest of my life, so this makes me feel like all the bloating and weight gain is just going to come right back.