Open main menu ☰
HealingWell
Search Close Search
Health Conditions
Allergies Alzheimer's Disease Anxiety & Panic Disorders Arthritis Breast Cancer Chronic Illness Crohn's Disease Depression Diabetes
Fibromyalgia GERD & Acid Reflux Irritable Bowel Syndrome Lupus Lyme Disease Migraine Headache Multiple Sclerosis Prostate Cancer Ulcerative Colitis

View Conditions A to Z »
Support Forums
Anxiety & Panic Disorders Bipolar Disorder Breast Cancer Chronic Pain Crohn's Disease Depression Diabetes Fibromyalgia GERD & Acid Reflux
Hepatitis Irritable Bowel Syndrome Lupus Lyme Disease Multiple Sclerosis Ostomies Prostate Cancer Rheumatoid Arthritis Ulcerative Colitis

View Forums A to Z »
Log In
Join Us
Close main menu ×
  • Home
  • Health Conditions
    • All Conditions
    • Allergies
    • Alzheimer's Disease
    • Anxiety & Panic Disorders
    • Arthritis
    • Breast Cancer
    • Chronic Illness
    • Crohn's Disease
    • Depression
    • Diabetes
    • Fibromyalgia
    • GERD & Acid Reflux
    • Irritable Bowel Syndrome
    • Lupus
    • Lyme Disease
    • Migraine Headache
    • Multiple Sclerosis
    • Prostate Cancer
    • Ulcerative Colitis
  • Support Forums
    • All Forums
    • Anxiety & Panic Disorders
    • Bipolar Disorder
    • Breast Cancer
    • Chronic Pain
    • Crohn's Disease
    • Depression
    • Diabetes
    • Fibromyalgia
    • GERD & Acid Reflux
    • Hepatitis
    • Irritable Bowel Syndrome
    • Lupus
    • Lyme Disease
    • Multiple Sclerosis
    • Ostomies
    • Prostate Cancer
    • Rheumatoid Arthritis
    • Ulcerative Colitis
  • Log In
  • Join Us
Join Us
☰
Forum Home| Forum Rules| Moderators| Active Topics| Help| Log In

Help After Takedown

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
profile picture
csantamaria
Regular Member
Joined : Jul 2013
Posts : 163
Posted 8/28/2020 3:18 PM (GMT -7)
Hey all its been a minute since I posted on here, wanted to give my system some time to get acclimated. ok so its been 6 months since my takedown surgery. Im on my second Bout of pouchitis. I don't know what's "normal" anymore or what to expect. the docs have me on cipro ran it 2 weeks minimal improvement. they also increased my fiber which lately that has helped form some things. it seems I have a LOT of urgency when eating and taking the first few bites which again I have no clue if this is what I should expect how to live. then when I go which is often after a meal, 3-5 x a day it comes out basically complete liquid maybe some particles. again, I have no idea if this is normal. they have another flex sig scheduled for me in a month, having trouble battling butt burn those 2 things are my main issues, I know everyones different. here is what I eat , before a week ago or so I used zero seasonings on food, now im venturing into some BBQ sauce, teriyaki sauce I had to cut out since that was liquid fire death coming out sad.
any advice and help is appreciated!
eggs, white rice, BBQ sauce sugar free baby rays, turkey burgers, flank steak, chicken 2-3 x a day, whey isolate. I feel that the bbq sauce may have some effect, recently I quit juice as most I found were complete fire when going to the bathroom, thanks in advance, oh lastly I wasn't sure If maybe I should try some immodium to control the urgency, in the past few months its caused me to be backed up but I don't see how that could be possible now since im going so much.
profile picture
notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17750
Posted 8/29/2020 11:22 AM (GMT -7)
You may want to try asking on jpouch org. This site isn't very active and there are very few active members here with pouches. I haven't had pouchitis myself but I have heard others say that combo of antibiotics can often be needed to get it under control. Hopefully, once you get it controlled, it stays away for good! 6 months is still a short time since surgery. Things do get easier.
profile picture
csantamaria
Regular Member
Joined : Jul 2013
Posts : 163
Posted 8/29/2020 11:34 AM (GMT -7)
Ok thank you!
profile picture
songlady
Veteran Member
Joined : Aug 2009
Posts : 3807
Posted 8/30/2020 5:22 AM (GMT -7)
hi - I am not on here as often as I once was, but I was browsing and saw your post. I hope you've had some success getting opinions from jpouch.org.
I had pouchitis a few times in my first year, and took the cipro/flagyl combo. My surgeon and his wonderful nurse suggested probiotics. That helped. The doc put me on colestipol, a cholestrol medication but it is used off label for post-surgical intestinal issues; that helped some. Immodium and lomotil both helped me a lot. If they've caused you to be backed up in the past, maybe try a half a tablet at first? (I was taking 6 a day after takedown.)
Tomato products and sauces with vinegar will still give me butt burn if I have too many (I am 2 years post-takedown) so... I'd be careful of the BBQ sauce for those reasons. (Also, sugar substitutes give me looseness and more issues than sugar - we each have our issues!) But I find that if I have something acidic/spicy and something bland to diffuse it, I'm fine. (a roll with the barbecue, or potatoes, etc.)
I also discovered (through someone here) that after takedown, eggs were a real problem for me, giving me gas and urgency! Now I can eat about anything, but it was a year before I could begin to say that. Potatoes were a helpful food (cooked any ways except fried.)
And calmoseptine cream is my go-to for the burn.
Hope some of this helps. Good luck!
profile picture
Taichitwin
New Member
Joined : Aug 2020
Posts : 1
Posted 8/30/2020 1:48 PM (GMT -7)
Hi there!
I'm new to the board. I'm 14 months out from takedown. If you can message me privately, I can share some things that have helped me. J-pouch.org is a good site and Facebook has some j-pouch groups as well.
profile picture
3timechamp
Veteran Member
Joined : Oct 2009
Posts : 1657
Posted 8/30/2020 6:20 PM (GMT -7)
Desitin extra strength. 40% zinc oxide. Works great on my butt burn
profile picture
csantamaria
Regular Member
Joined : Jul 2013
Posts : 163
Posted 8/30/2020 7:28 PM (GMT -7)
So I feel like I don’t know enough Even though I’ve done countless hours of research. For Y’all when you don’t take Immodium do you have watery stools?
profile picture
songlady
Veteran Member
Joined : Aug 2009
Posts : 3807
Posted 8/31/2020 10:11 AM (GMT -7)
Yes. More frequently and pure liquid.
profile picture
csantamaria
Regular Member
Joined : Jul 2013
Posts : 163
Posted 8/31/2020 10:24 AM (GMT -7)
Ok that’s good to know
profile picture
notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17750
Posted 8/31/2020 10:52 AM (GMT -7)
Mine are all over the place. Sometimes pieces, sometimes liquid. Depends what you eat, but you definitely can't expect formed like before surgery. Form happens in the colon. If you retain your terminal ileum, like if you have a single step to an ileo, you retain more of your tract vs with a jpouch. The less you have, the less formed, and generally the more you go
✚ New Topic ✚ Reply




HealingWell

About Us  |   Advertise  |   Subscribe  |   Privacy & Disclaimer
Connect With Us
FacebookFacebook TwitterTwitter PinterestPinterest LinkedInLinkedIn
© 1997-2021 HealingWell.com LLC All Rights Reserved. Our website is for informational purposes only. HealingWell.com LLC does not provide medical advice, diagnosis, or treatment.