Skip to main content

Hi there,

Just joined your group in the hopes to get some answers to a few different questions.. I'll post the questions and any advice that you can provide me with is great.

1) I recently had a CT done that showed a minor opening at the top of my pouch. Has this happened to you or anyone you know? If so, did they have to go back to the bag?

2)They have put me on bowel rest for one so I'm receiving TPN and other than water that is it. This is in the hopes that the small opening will close on its own. I've heard horror stories of people putting on a ton of weight from just the TPN. Opinions? thoughts?

Since my take down surgery I've put on some weight because of prednisone but that'll be gone once I taper of it.... So weight gain on TPN? Kind of sucks to basiclly be starving yourself and to still get weight. I exercise quite regularly, as much as I can with being sick.

3) Anyone taking Vitamin B12 Injections? Apparently they help with IBD and a ton of other good stuff. Just curious if anyone has tried it and found it helped or if it was just snake oil.

3) VSL #3 .. I know they help sponsor the site, but seriously do they help you? If so, in what wa do they help? How will I feel different.

Thanks,
Jessica
jessicawilson-@hotmail.com
Original Post

Replies sorted oldest to newest

I hope I can help answer a few of these. I was on TPN for about six weeks after an obstruction surgery went bad because of adhesions; I lost a ton of weight (most of which I'm sure was muscular due to atrophy as I was hooked up to an NG tube, a G-tube and a wound vac for about a month of that time and was bedridden for the most part). Not sure if that's everyone's experience, but that was how it went down with me. As for B12, I tried taking it for a while when I couldn't maintain my hemoglobin counts, but it didn't really work for me, as my issue has more to do with ferretin storage. I now get Feraheme infusions every 6 weeks at my hematologist's clinic, which has helped a great deal. I did take VSL#3 for about a year, but stopped when I was put on Flagyl indefinitely, as one sort of counteracted the other and VSL really isn't cheap.
Hi Jessica and Michelle!
Bit of input, as I had a TPN for 2 months between my 2nd and 3rd j-pouch surgeries. Also, have question myself that I hope someone can answer.
While I was on TPN, I did gain some weight, but was okay because I had lost so much from not eating due to multiple blockages. I lost over 10 lbs. between surgery #2 and TPN. Once I gained back those 10 lbs though I only gained another 2-4 lbs over next 6 weeks. I know the pharmacist controls the calories in it, and initially set mine up for weight gain, and then reduced the sugars so I would just maintain healthy weight to go into surgery #3. It probably will level off as long as you are drinking enough liquid. If not, talk to prescribing pharmacist about reducing the calories in the TPN. Good luck! Hope you heal well! BTW, I am still maintaining that same weight range since surgery #3 though it does fluctuate by up to 4 lbs, depending on quality of my output.

My question- is there a problem taking Flagyl and VSL#3? I have been taking VSL#3 to prevent pouchitis since my takedown March 6. I assume and hope it helps, but I am going in for pouchoscopy next week and have been on Flagyl almost 3 weeks. Tried Cipro but that did not help- actually made me incontinent!
Reason for going on antibiotic is because I am still having 12-18 movements each day. Since antibiotic, that hasn't changed but I now can sleep 4 hours without having to get up for bathroom. Sleep is good! I thought that the VSL #3 was important when on antibiotics to prevent C-diff. You're right about it being expensive so would like to know others opinions on using VSL with Flagyl. Thanks much!
Laurie
Laurie-
There are differing opinions about the value of VSL while on antibiotics. Some folks try to space them apart, and others think the antibiotics make the VSL useless. I take them both, and I did get sick when I dropped my VSL dose below the maximum. It could have been a coincidence, though.

VSL seems to help prevent some kinds of pouchitis. However, I don't think anyone recommends VSL as a way to prevent C. diff. In general the probiotic recommended for that is S. Boulardi (that's what's in Florastor and some less expensive versions). Some good news: 1) S. Boulardi is *much* less expensive than VSL, 2) S. Boulardi isn't a bacterial probiotic, so it's quite reasonable to take while on antibiotics.

Add Reply

Copyright © 2025 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×