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Ulcerative Colitis
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Posted 6/17/2020 1:28 AM (GMT 0)
I've had my jpouch for over a year now and I just finished a course of antibiotics 2 weeks ago and now I started flaring again. I can't be on cipro constantly? I haven't called my gi yet to refill the prescription but I should.

How can my jpouch even mature if it's constantly inflamed? I'm really not doing good and I'm getting very depressed. I have no hope of getting ever better
Posted 6/17/2020 2:39 AM (GMT 0)
Over the years I have seen a dozen threads about VSL#3 or VSL#3DS helping chronic pouchitis. I don't take VSL#3 anymore so I am not sure if it has been replaced with a similar formula found in Visbiome.

https://www.healingwell.com/community/default.aspx?f=33&m=2382001#gsc.tab=0
My GI says that she will have me take VSL 3 and/or Cipro after my takedown to prevent pouchitis. She did some blood test to check for my risk of developing it and my number came back very very high so we will have to be proactive.

https://www.healingwell.com/community/default.aspx?f=38&m=1923409#gsc.tab=0
Randomized, double-blind, placebo-controlled studies have shown VSL#3 is effective in preventing the onset of acute pouchitis in patients with newly formed surgical pouches, and in maintaining remission following antibacterial treatment of acute pouchitis in patients with a history of refractory or recurrent pouchitis.
Treatment guidelines from the US and the UK include VSL#3 as a therapeutic option for the prevention of pouchitis relapse in patients with chronic pouchitis.
Posted 6/17/2020 3:18 AM (GMT 0)
How many capsules would be needed if I started taking it? I'm currently flaring
Posted 6/17/2020 6:51 AM (GMT 0)
Andrina, did you get any advice from ks1905 (Keith) on pouch flaring? I recall that he posted a lot about his issues post-surgery take-down, but finally he got the pouchitis under control even though he then needed hip replacement surgery (due to prior Pred use) & tolerated that well. So, hopefully, you'll soon find a solution, too. Best wishes, I know it's hard but try to stay positive. / Old Hat (39 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 6/17/2020 2:04 PM (GMT 0)
I know he's on biologics now. I need to call my GI
Posted 6/17/2020 2:49 PM (GMT 0)
Andrina, I looked back & saw th ks1905 is on Stelara, this may be something to talk about with your dr.

Take care.
Posted 6/18/2020 1:52 AM (GMT 0)
I am sorry Andrea. I do think you're going to have to consider long-term treatment with a biologic at this point. You've put in a great effort to avoid it but it seems like it is what your pouch needs. I hope things get better and you don't need additional treatment but it's been pretty consistent since your take down. You can't keep taking antibiotics. I hope your find something that helps quickly so you feel better. Did they say it's Crohn's? It's weird because you always had consistent with uc, now this. I think chronic pouchitis happens in about ten percent. 🥺
Posted 6/18/2020 2:33 PM (GMT 0)
I should have known it because I was always flaring with UC as well.
Posted 6/19/2020 1:31 AM (GMT 0)
I was too but now I am okay. When can you get in to see the gi? I really hope you're able to get on something that's easy for you and works well. How is everything going?
Posted 6/19/2020 3:38 PM (GMT 0)
Did you have the mucosectomy? Because I didn't
Posted 6/19/2020 5:45 PM (GMT 0)
I did. Perhaps that's why I am ok. It does seem like some people just get pouchitis, probably people who had mucosectomy get it too. If not, wouldn't everyone get it?
Posted 6/19/2020 5:56 PM (GMT 0)
I need to ask my surgeon to get one maybe I truly believe it would solve all my issues but I highly doubt he will perform it. He said only older surgeons do it
Posted 6/19/2020 6:43 PM (GMT 0)
My surgeon was older and he's done thousands of pouches I'd imagine. I didn't want it initially as I had read it can cause incontinence and I asked my GI if I could avoid it... she said she wouldn't recommend not taking advantage of the fact that he does it and he had so much experience doing it. I don't think it was an option to not do it actually. If you had a redo you could have it done but you would likely have to travel to a specialist. I wonder what the difference is in pouchitis with and without? I don't think there are any guarantees but I do think the chance of getting any type of cancer in that area is reduced since it's been scraped. I would imagine it is low regardless. Redos are probably risky for other reasons though, such as having less to work with and ending up with less which means faster transit. I don't know much about it, I've been lucky I guess. I still go more than I'd like to. Did you and your surgeon get back on good terms? If so, that's great. I know it was a misunderstanding.
Posted 6/20/2020 2:17 AM (GMT 0)
Hey Andrina, i just wanted to say that I'm sorry you're not doing well and I can relate to getting depressed. This disease is the worst. Try to remember that you never know what the future holds and something really great could always come along, from getting better physically to a great friendship or even an awesome book, movie, or vacation. Never give up.
Posted 6/20/2020 3:32 PM (GMT 0)
Nothing good has come along in the 18 years I've had this disease. I even went through surgery to get rid of it and I'm still plagued with inflammation in my intestines, lady parts, mouth and joints. I am absolutely not happy with my life and my body.
Posted 6/20/2020 11:34 PM (GMT 0)
Hang in there, Andrina! We UCers have "an underlying inflammatory over-response". I never thought of it that way until the dentist-husband of a colleague used the explanation while treating me for periodontal issues in mid-1990s. He asked me to come for an office visit one day right after lunch; then he showed me with a magnifying mirror how my gum was already turning red in a place where my recent brushing & flossing had missed removing a bit of food the size of a pin-head! We really need a team approach/understanding by health care professionals we consult instead of having to fend for ourselves most of the time with a series of doctors & dentists who are not equally aware of + committed to treating our multiple problems. I write this after fighting an unexpected, non-hereditary gyn malignancy a while back, when my longtime gastro was no help, nor a help with recurrent dental issues though other IBD patients in that practice also have them. So-- you have a right to feel unhappy, but, as Claire advises, don't let it overwhelm you. Between this forum & the Crohn's forum you might still find better help to combat pouchitis. / Old Hat (39 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 6/21/2020 1:19 AM (GMT 0)
Yep, I agree with Old Hat. Andrina, I know this disease can be hell. I've suffered severe mental health problems as a result. I was suicidal at one time. It was due not only to depression over my health but I think it was also a physiological reaction to inflammation going on in my body. Tomorrow is another day. You're a good person (I would bet good money) and you shouldn't speak as though there is nothing good about you.

For anyone suffering from dental problems relating to IBD, I've found mouthwash that includes myrrh to be really good for my gums. I think you can also just buy myrrh powder and put it in water.

Myrrh is similar to boswellia/frankinsense which many with IBD (including me) found helpful.
Posted 6/23/2020 9:27 PM (GMT 0)
Thank you all for your support. I appreciate all the responses. I'm sorry if I'm sounding bitter but it's really not easy.

Just a quick update. I've increased my probiotic intake and I seem to have dodged the bullet for now. I'm happy if something I can get over the counter can help me for now. I'm also only eating for 8 hours a day so I can give my system a rest toward the evening and night. Thankfully I haven't gotten incontinent but I'll take Cipro as soon as it happens. I just don't want to be on Cipro long term. I'm afraid to get immune to it. Probiotics I can switch up at least.
Posted 6/24/2020 12:51 AM (GMT 0)
I wouldn't want to do antibiotics too long either. That's why you should consider a biologic if it's truly chronic but at this time, if the probiotics work, that's great!
Posted 6/24/2020 1:01 AM (GMT 0)

notsosicklygirl said...
I wouldn't want to do antibiotics too long either. That's why you should consider a biologic if it's truly chronic but at this time, if the probiotics work, that's great!


I'll eventually get immune to biologics as well, no? I already have tried them all. How will it work if they haven't worked before?
Posted 6/24/2020 2:40 PM (GMT 0)
You never know. I think Stelara is working for me, after 4 years of nothing working except pred. I really hope you can find some relief. I know how it can feel so hopeless at times.
Posted 6/25/2020 6:02 AM (GMT 0)
You can't 'become immune' to any biologics. You can develop antibodies to a biologic but that is primarily anti-TNF drugs. I think the likelihood of developing antibodies against Entyvio is 3% and even less with Stelara (as they are not anti-TNF). And it cannot happen at all with drugs like methotrexate or Xeljanz.
Posted 6/25/2020 2:42 PM (GMT 0)

noodlesnoodles said...
You can't 'become immune' to any biologics. You can develop antibodies to a biologic


That's what I meant

I also became immune to mesalazine because I used it so much it had no effect. Also prednisone needs higher doses and doesn't work as effectively anymore as it used to. I'm telling you my body gets immune to certain drugs after a while.
Posted 6/25/2020 11:42 PM (GMT 0)
Andrina- Reading your post and LDN came to mind. May be a try?






Best always..
Posted 6/26/2020 12:29 AM (GMT 0)
I tried LDN a while ago and I had one of my worst flares while on it. I also tried CCherbal, SCD diet, nicotine patches and lozenges, tumeric, L-glutamine, spinach & seed flower diet. I can't remember what else I tried but I promised myself I will try my best to get this under control before I need surgery. Sadly surgery isn't a cure.
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