Calmo
Visbiome

Skip to main content

Topics

Sorted by last update

J-Pouch ForumsPouchitis
Just had my scope -need your advice
LeftieLeftie
jeane I am on 875 mg of augmentin twice daily. I cannot seem to get below this dosage without issues. [ more ]
Bish I just had a scope about a month ago. The biopsy showed that I have colitis again... problem is, I had my entire colon removed back in 1999. So can any one explain how I would be able to get colitis again. I was always told that colitis only affected your colon. So, I am waiting patiently to get into Dr. Shen at Cleveland Clinic for some answers. [ more ]
Leftie What is the standard dosage for augmentin that a doctor gives? [ more ]
See all 19 replies...
J-Pouch ForumsPouchitis
Extreme Gas Pain??
P peewee80
peewee80 Thanks Rocket! I will look. [ more ]
Rocket peewee80, So you don't have to go so far, your supermarket might have it. Or you can probably check Amazon. The one I use is "Nature's Way Activated Charcoal." Its a white and yellow bottle with a yellow cap. Rocket [ more ]
peewee80 Thanks so much Rocket! I talked with the GI doctor this afternoon. They put me on Flagyl and Cipro. I am feeling some better gas is not as bad. They suggested I use Mylacon tablets. I think that was the name. I will try the charcoal. I am about 2 hours from a health food store but I will be going before to long. Again thanks so much for the info and your time. [ more ]
See all 6 replies...
J-Pouch ForumsPouchitis
Pouchitis and Uveitis?
K KReid
lhh65 Thank you, NancyAnn. After your words of advice and some other things I read, I did go see my optometrist (she is close and I trust her) yesterday. Turns out that while the symptoms are very much like uveitis, I actually have corneal erosion, a complication of a corneal abrasion I got 9 years ago! So I'm being treated for that. The interesting thing is that the dehydration I'm fighting constantly was likely a factor in this eye problem starting a couple weeks ago. I still have to figure out... [ more ]
n/a Laurie, sounds like iritis/uveitis to me. You need to get to an opthalmologist pronto, as there can be serious complications if it is left untreated. Good luck! [ more ]
lhh65 Interesting because I was going to post about problem I've been having, worried it could be uveitis, and then I saw this post. Here's what's been happening with me: One morning a couple weeks ago, I woke up with terrible pain in my right eye; it was so sensitive to light that I could hardly keep it open. I had problems focusing, blinking was painful, so I would let my eyes water. It resolved itself in a day. Now, last night it started again, and I've had the problem all day today. I was home... [ more ]
See all 6 replies...
J-Pouch ForumsPouchitis
Do I have pouchitis?
S stpaulmom
stpaulmom I was for a few days but then I felt the same and the doctor wanted to add Levaquin but I'm allergic so for now I've just been grinning and bearing it. And using anti-monkey butt diaper rash cream. [ more ]
temples were you doing better after the few days? [ more ]
stpaulmom I saw the doctor today. He did a scope to look inside the pouch and said it looked like a mild case of pouchitis. He took biopsies, not sure why. I also did stool samples for the last three days, waiting for those results, checking for C-diff, etc. Doctor gave me Cipro and said I should be doing better in two days. I pray he's right! Thanks for your replies! [ more ]
See all 5 replies...
J-Pouch ForumsPouchitis
Entocort side effects?!?!
pouchmonkeypouchmonkey
CTBarrister I have been taking 9 mg Entocort daily for the last 3 months, together with the usual battery of antibiotics, and I have experienced no side effects, and also no noticeable difference in my condition, as I deteriorated when I went off antibiotics but with a slightly longer onset of the deterioration (9 days rather than 5-6). I am trying to posture for a rotation of antibiotics one week and none the next, while on Entocort. I took Prednisone for nearly 20 years and I had side effects with it... [ more ]
Spooky A common side effect of steroids is swollen feet and ankles. I had this when I was on prednisone, to the point that I had trouble putting on my shoes. Since Entocort is a steroid, I wouldn't be surprised if that's what's causing your symptoms, and the fact that you're not peeing much suggests water retention, which goes hand in hand with the swollen joints. Side effects like this sometimes improve over time, but not always. Anyway, as with any new side effect that pops up, it's worth putting... [ more ]
See all 2 replies...
J-Pouch ForumsPouchitis
Humira long-term side effects?
pouchmonkeypouchmonkey
jeane Jan, Thank you for the post regarding biologics. Pouchmonkey, please report your results to us if you prefer. I am in the same situation you are with 16 months of chronic pouchitis that is held pretty much at bay when on augmentin. If I miss even one dose I rapidly decline. I am meeting with my colorectal surgeon early next month to discuss options I agree with you in that I had the surgery to get off meds. I too am fearful about biologics so I appreciate the information shared in this post. [ more ]
Jan Dollar Actually, the safety profile of Humira is better than Remicade. That is because it is a fully humanized antibody (Remicade is based on mouse protein), and is given by subcutaneous injection, as opposed to IV infusion (Remicade), so far less likely to induce an allergic reaction. The main risk is for infection, particularly reactivation of latent infections, like TB, herpes, or hepatitis. But, if you use common sense, you should be fine. The other risk most people freak out about was the... [ more ]
See all 2 replies...
J-Pouch ForumsPouchitis
pouchoscopy
S Sara1986
jeane The meds should help you. It can become chronic is some cases, but it is usually very treatable with canasa. You may eventually need to move to a maintenance dose (say once nightly 2 times a week or whatever you GI suggests) for a bit before stopping it entirely. If you are not getting relief, they can presrcibe anucort suppositories (which has a steriod in it). They are reluctant to do this though as they do not want you on it for a long period of time due to thinning of your tissues in the... [ more ]
See 1 reply...
J-Pouch ForumsPouchitis
question about pouchoscopy
S Sara1986
Sara1986 Thanks for responding back to me everyone. I appreciate it [ more ]
mgmt10 Yeah all docs are different with this. I had no prep at all for my scope. I would double check because magnesium citrate is pretty harsh for us j pouchers. [ more ]
CTBarrister Sara, different doctors have different preps. My prep is usually liquid diet from noon the day before until the test, with only some sips of water after Midnight and a Fleet or warm water enema the morning of. The prep you describe is not unusual, but it is important to communicate to the prep nurse that you have a J Pouch so that you do not get confused with the prep for the colonoscopy patients. Most offices have different preps for pouchoscopy and colonoscopy. [ more ]
See all 4 replies...
J-Pouch ForumsPouchitis
Pouchitis...very frustrated
K KD1966
Rocket Jeane, Had my Breathalyzer test this morning which takes a boring 3 hrs to do. Every 20 minutes you breath into like a small ballon. I won't get my results from my test until I see the doctor next month. Rocket [ more ]
Rocket DJBHusky, That was funny response. I think its the Popeye cartoon. I guess our Colon must be Bruono or is it Bluto? Rocket [ more ]
CTBarrister The poster or the cooking oil or the character from the Popeye cartoon? [ more ]
See all 22 replies...
J-Pouch ForumsPouchitis
Recommendations on Antibiotics
LeftieLeftie
CTBarrister Every single antibiotic I take is maintainance therapy since in my case I have chronic pouchitis kept in check in a "simmering" state by taking antibiotics. [ more ]
John95 I don't know if it's used more often for maintenance therapy per se, but there is certainly literature out there saying that Xifaxan may be an effective maintenance therapy treatment. In my case, Xifaxan wasn't effective when I had active pouchitis. I had to take another antibiotic to get it under control; however, once that was achieved, I went on Xifaxan as maintenance therapy and did very well on it. [ more ]
Leftie Is Xifaxin used more for maintenance therapy? [ more ]
See all 10 replies...
J-Pouch ForumsPouchitis
HUMIRA for Pouchitis AND Ankylosing Spondylitis
K Krazy1
Jan Dollar Justin, you may want to give Simponi a try if Cimzia does not work out for you. It is approved for AS and awaiting approval for use for UC. I did not need to wait, as it was prescribed for my arthritis. http://www.prnewswire.com/news...litis-162627466.html Jan [ more ]
Krazy1 Thanks everyone! I hope you all have a great day! [ more ]
JDShaw Worked for my AS and Pouchitis for about a 1 1/2 years. I was symptom free then it just stopped working one. I'm trying Cimzia now and so far no luck but I have only had one dose. [ more ]
See all 7 replies...
J-Pouch ForumsPouchitis
if you have pouchitis, is it bad to take bowel slowers (immodium/lomotil)?
fqfq
clz81 Jeremy, I take rotate antibiotics with pepto bismol every few weeks to give me a break from the antibiotics. I have chronic pouchitis so I couldn't go more than a couple days not on something. But yes, they can lose effectivess with extended use and in my case they have for sure. Cipro and Augmentin don't work for me anymore, which is horrible since they used to work amazingly well. I'm rotating xifaxan and pepto right now. [ more ]
Jan Dollar For me, one of the ways I know it is pouchitis (or a cuffitis flare) is that bowel slowers don't work. At least not to any major extent. But, yeah, it is safe. But, I let up on the dose once I take antibiotics until I know how thick my stool will get with them. Jan [ more ]
Jeremy S clz81, do you take antibiotic everyday whether you have pouchitis or not. I only take it when I have pouchitis and as soon as it knocks it out I stop until the next bout of pouchitis and then I do it again. I've always heard that if you take antibiotic too much it will not work and you will be immune to it when you really need for something real serious. [ more ]
See all 6 replies...
J-Pouch ForumsPouchitis
Any theories?
LorsallLorsall
Lorsall Hi Sharon! Thanks for replying. Actually I already take my "happy liquid" (aka Prozac, which is an SSRI- selective serotonin reuptake inhibitor) because it has the side effect of raising blood pressure, and I have a nasty case of orthostatic hypotension. There was a concern giving me both of these drugs that they might not play nicely together because of the different effects on serotonin. And yes, my pouch has been quite jealous of all the attention my stomach has been getting, so like any... [ more ]
skn69 Sallie, A lot of antidepressants work that way on pouches too...for some reason serotonin uptake meds do the trick (has your pouch been suffering mild depression? A severe break-up or job loss??? )...no to take this lightly but it is a fact...enjoy it while it lasts and if it is not a med that you can take long term then you may ask your pouch doc for a mild antidepressant and see if that works its magic on your pouch. Sharon [ more ]
See all 2 replies...
J-Pouch ForumsPouchitis
Pain management for Pouchitis?????
J JDShaw
vanessavy Most doctors will not give out pain medicine. YOu can thank the people who make these silly laws in our country. A lot get fines now if they hand them out. My last family doctor did only because I ran out.I had to pay out of pocket to him to do so though since it wasn't connected to his practice. Weird but how I got my Oxy refilled when I was 2 months post op and not able to get off pain meds. You have to go to pain management doctors, clinics don't do narcotics usually since they cracked... [ more ]
See 1 reply...
J-Pouch ForumsPouchitis
Flagyl and drinking
D DZAtl
CTBarrister When I was bombed at the Montreal Jazz Festival here is exactly what I mixed with flagyl drinking from about 2-5 p.m., with 500 mg flagyl dosages taken at 9 a.m. and 9 p.m. the same day: 1 Mango Sunrise (rum, mango liquer, mango juice and other ingredients I forgot; advertised by the bartender as "sweet and girlie", but tasted strong and not so sweet to me) 3 Bellinis (sweet "girlie" type drink with rum, chambord, peach schnapps, sparkling white wine mixed with ice and cream; delicious!) 2... [ more ]
vanessavy I drink on it with no issue. I got smashed in NYC a few times. I had no side effects. I also can't puke anymore since food goes through me so fast but I never had the urge either while on it. [ more ]
Spooky Flagyl is actually similar to the medication Antabuse, prescribed to help alcoholics stop drinking - hence some of the unpleasant side effects. Some people, however, can and do drink while on flagyl. I supposed you could try spacing out your dosages, much like you have to do while having dairy with cipro (usually a 4-6 hour window), but since you have already experienced the unpleasant side effects, you have a pretty good idea how it will affect you in the future as well. My understanding is... [ more ]
See all 6 replies...
J-Pouch ForumsPouchitis
Insurance co. will no longer cover Xifaxan
FM Former Member
Former Member Hi all. Just wanted to provide an update on my Xifaxan issue. After 3 appeals (2 letters from my doctor and a conference call involving my doctor, a Cigna review team and myself) my prescription was approved for one year. I had heard that the third time is often the charm in these reviews, and luckily that turned out to be the case. Start to finish the whole ordeal lasted about 6 or 7 stressful weeks. But I guess all's well that ends well. My doctor prescribed Pentasa for me during my... [ more ]
samantha1803 clz81- Um that's $42 a pill!! Not that you couldn't do the math. I would still try the drug company and see how much they ask about ability to pay. In my case I don't remember them asking. I would also try a personal appeal to them. It doesn't hurt to try. Tell them your life depends on it. These are tough times. They are obviously ripping people off. Maybe they will give it to you if you promise not to call 60 Minutes and tell them about it. [ more ]
John95 Drew, Samantha offers good advice. Give the manufacturer of Xifaxan a call; I believe it is Salix Pharmaceuticals, but you can double check by looking at your prescription bottle. I believe they have a patient assistance program that can help people who cannot afford medication when their insurance doesn't cover it. I think you have to have less than $50,000 in assets to qualify. It's certainly worth investigating if the drug has given you so much benefit. [ more ]
See all 13 replies...
J-Pouch ForumsPouchitis
please help: back and forth from watery to constipation with pouchitis??
nikikinikiki
Patrick S ❤️
nikiki Hi AP and Rocket, Thanks to both of you for your input, and for the reminder be cautious. I do consider that what works for someone else may or may not work for me, and the need to be careful when adding something new. I so appreciate everyone sharing. It has been a great benefit to me to read everyones ideas and experience, and to read that other people are familiar with so many of the things that I've gone through for so long but had no one else to compare notes with...and are so willing... [ more ]
AP Rocket is right. What works is so individual to each person. I just wanted to offer what worked best for me because I found it through this site. I just kept trying the different things that people recommended until I found what works best for me. And that thing is definitely fiber and fluids. The constipation is the thing that was a red flag and made me respond. I figured out that not going was most likely causing the pouchitis for me and that this type of fiber keeps me going. My doctor... [ more ]
See all 6 replies...
J-Pouch ForumsPouchitis
Strange Side Effects?
pouchmonkeypouchmonkey
cassiecass Afternoon speak with your md on this .Retesting of the TSH should be done at least 6 weeks after the change in dosage is done.It takes this long just for the anterior lobe of the pituarty to get the signal on dose change.You should also discuss when you should retest do to weight gain or weight loss. Medication can interfer with the thyroid hormone. Cassiecass There are other hormone levels which may need to be tested. [ more ]
Spooky Very occasionally I will get pronounced PMS where I get the symptoms you describe (swollen, tender, bloated, and hugely increased appetite). So it could be a bad case of normal PMS hormones. But, I am wondering if the antibiotics have maybe interfered with your absorption of the synthyroid. Antibiotics can interfere with the effectiveness of other medications, so perhaps you should speak to your doctor about the timing of dosages to ensure that you are getting the benefit of everything you... [ more ]
pouchmonkey Never say never to bizarre side effects from anything, because I have certainly had them, but I have been on thyroid replacement for 13 yrs & this just started about 2 weeks ago...strange, like going through puberty even, & if it were a possibility, I would be taking pregnancy tests, because the change has been so drastic. But, I know there is no chance of pregnancy, so I'm just seeing if anyone else has had anything like this happen?!?! [ more ]
See all 4 replies...
J-Pouch ForumsPouchitis
diet pouchitis-celiac/j-pouch?
pouchmonkeypouchmonkey
KellyK Thank you pouchmonkey and Jeane for your suggestions, I know that will help Here is the site for the Ginger Root where you can order pills http://www.swansonvitamins.com . It is very inexpensive and has good reviews, this is also what I have used. [ more ]
jeane Kelly, Cooked soups are a great alternative. I make them often loaded with veggies and potatoes, spinach, anything that you can throw in. This combination really agrees with my pouch. [ more ]
pouchmonkey Ginger root-what is the best form to try, tea, pills, etc? Brand recommendations? Kelly-lunchtime salads for me, not so much anymore. I eat a lot of baked potatoes, grilled chicken or bunless burgers. Udi's makes a pretty good tasting/textured bread. Amy's is a good brand for things like frozen pizzas or frozen lunches/lasagnas if you want a quick fix. Quinoa is good, & there is a Quinoa "breakfast" cereal that people eat like oatmeal-but I find it better with savory seasonings like a... [ more ]
See all 9 replies...
J-Pouch ForumsPouchitis
Naltrexone?
pouchmonkeypouchmonkey
jeane Pouchmonkey, I am very interested in this and if you do start the low dose, please report back your findings. I would much prefer to take a low dose of this med than 875 mg X 2 of augmentin daily like I have been on for the last 15 months non-stop. I will ask my GI about this at my next appointment. [ more ]
pouchmonkey My chiro recommended it specifically because he has other pt's who have used it for auto-immune issues & have done extremely well with it. I have read the online info that notes that it is used for opioid addiction, but that's at 50mg, not the 4.5 mg dose. The pt's he has that have been using it have MS, UC, & Crohn's. My GI (who I have not spoken with yet about LDN, I wanted to finish out my cycle of Flagyl & Canasa first) pretty well told me that pouchitis, or mine specifically... [ more ]
tatunbaba Nice thread. Looked for Naltrexone and yeah it a drug to treat opeoid drug addicts. LND or low dose Naltrexone is being tried in variety of deases. Check the link http://www.lowdosenaltrexone.org/ But I see they used it for Crohn's. 1.75 to 4.5mg/day (abt 50mg/day is for heroin dependence therapey) What About effect on UC? Anyone? [ more ]
See all 7 replies...
J-Pouch ForumsPouchitis
chronic pouchitis and pregnancy
armywifearmywife
jeane I was on prednisone for my UC throughout both pregnancies in the last trimester and sulfasalazine throughout the entire 9 months of both pregnancies and both my kids are healthy (16 and 18). I know that within the first trimester they would really prefer you are not on meds if possible and if not, you're only on meds if the illness itself has more of a negative effect on the developing health of the fetus than the medication side effects would. That being said, only your doctor can work with... [ more ]
See 1 reply...
J-Pouch ForumsPouchitis
Antibiotics questions
B bml
TE Marie I was told certain antibiotics can cause birth control pills not to be effective. If you do not want to become PG are on the pill you should ask your doctor and or pharmacist if your antibiotic will affect your fertility. [ more ]
tatunbaba I can tell you that, Augmentin is safest to take in term of pregnancy. The other most common drugs for pouchitis : Cipro, Metronidazole and rifaximin (xifaxan) are not safe and no doctor would advise them unless it's emergency. [ more ]
Karbear I'm currently on Cipro and SeasonqueLO (birth control). I have no problems at all, and the birth control is working. It is the kind where I'm supposed to have 4 period/year, but it is working so well I don't get a period at all. My gyn is fine with this. I have also taken Flagyl without problems. I do not plan on having children, so I don't know about your changes of pregnancy when coming off. I'm sure it would be the same as any other J-pouch lady. [ more ]
See all 4 replies...
J-Pouch ForumsPouchitis
Cipro scares me...
J ju330
ju330 Oh, okay, I see. The packet did say to take those supplements 2 hours before or 6 hours after taking Cipro. [ more ]
CTBarrister I believe they interfere with the absorption of cipro. I take calcium and magnesium supplements, but I take them at lunch and take my cipro at breakfast and at bedtime. I don't think there is any problem if you space the consumption of the supplement 2 hours before or 2 hours after the cipro dosing. [ more ]
ju330 Well, so far, so good for me. I've actually already noticed my pouch feels a bit better and my energy level is up. Thank you all for the responses! It is sort of silly of my to be frightened by the warnings on this medicine when for years I took things like Humira, Remicade, Prednisone, etc., for UC. Just out of curiosity, do any of you know why it is advised to not take Calcium, Magnesium or Iron at the same time as Cipro? I'm sure I can do without them for 10 days, just interested to know. [ more ]
See all 8 replies...
J-Pouch ForumsPouchitis
How long is this Pouchitis going to last?
R Rocket
Rocket Feeling much better now, thank God. It seems like I have not been feeling well for months. I finish my meds this week. A couple of things puzzle me though. My appetite is not what it used to be and I get nauseous quite a bit. I have to keep drinking Sprite or Ginger-Ale to help this out and I normally do not drink soda because it can cause me gas. When I do get hungry, I am really starving and I do my best to eat slow. Most things I eat do not taste good anway. I hope that once I am off the... [ more ]
mgmt10 Sorry...hope you feel better soon. Perhaps your doc has other ideas to help. [ more ]
Rocket Hi Marianne, I have my good days and bad days. Didn't get to mass today until noon. I see the doctor tomorrow but the longer this lasts, the more frustrated I become. I am supposed to go to Hershey with my son leaving next Sunday but I have not been myself and I thought by now the Pouchitis would be gone. Its better then what it was, but its been draining me of my energy. Rocco [ more ]
See all 14 replies...
J-Pouch ForumsPouchitis
do ALL pouchers do better with antibiotics?
fqfq
Epic Scotsman The small intestine isn't designed to carry the same kind of bacterial load as the colon. Since the pouch is formed from small intestinal tissue, the increase in gut bacteria could cause a few problems here and there while the pouch is adapting. However, in the long run it'd probably be better to allow the pouch to adjust to the new bacterial presence, rather than take antibiotics long term (unless they are truly needed, of course). So, in a way, all pouches probably do function a bit better... [ more ]
clz81 I'm sure there are many exceptions, but i too have always thought this to be true for the majority. Its the bacteria in our pouches that causes the gas and whatnot so getting rid of it should quiet everything down. However, if someone doesn't truly need it, I would not advise taking it. Once you take it, your intestinal flora is changed, and sometimes a challenge to get back to where it should be. [ more ]
See all 2 replies...
J-Pouch ForumsPouchitis
what % of pouchers get chronic pouchitis?
fqfq
Colleen2001 I have to agree with rustyskyline. I have gone on antibiotics twice for what was assumed to be "pouchitis" twice in 10 years. But every scope I've had has shown my pouch to be completely healthy. I feel for those who continue to suffer after surgery. Do you currently suffer from pouchitis? [ more ]
Rebe0505 hi..i have had chronic pouchitis since as long as i have my pouch(06)only identified as such after about two awful years..i hah then been rotating antibiotics thereafter..4 every three or 4 weeks switching off..however,after three years it seemed my 4 antibiotics were serving me less time so i thought i would throw in another one which happened to be augmentin and to my delight i have been on it 7 months now..still working..i take one 875 mil 2x a day..none of the others worked like this..i... [ more ]
rustyskyline This question comes up every now and then but you have to consider the group of people who will be coming to this website. Most people who have a j-pouch and live out their lives merrily, won't be coming here. As for me, I got my j-pouch in 1995 and have had chronic refractory pouchitis pretty much the whole way. When it is at its worse, I take flagyl and cipro and I find the side effects for both of those drugs to be considerable. So, I take them for 15 days each and then go off them until... [ more ]
See all 8 replies...
J-Pouch ForumsPouchitis
Not Sure What is going on
R Rocket
Rocket clz81, Doctor appt went well this evening and he said the same thing you did. I am dehydrated. My pouchitis is much improved and my meds do run out this week but the doctor wants me to refil the meds and stay on them a while longer. Rocket [ more ]
clz81 i feel like this very often when i get dehydrated, which is common with me when my pouchitis starts to get out of whack and i'm making a lot more bathroom trips. however, even when my pouchitis is under control, if i forget to stay on top of liquids, i get dehydrated and feel like this too. [ more ]
See all 2 replies...
J-Pouch ForumsPouchitis
Feel like rocks in my gut
GoodspeedeGoodspeede
Karbear Yes, we've all had those embarrassing moments and that is certainly one to laugh about after the fact. Sounds like you're on your way to feeling better. P.S. Those strings should really be longer. [ more ]
Goodspeede Thanks for the reply Karbear! Well here is what happened. I called up my GI doc on Thursday and they were able to call in a prescription for Cipro & flagyl for me. I also have an appointment scheduled for September. While I am sure I had pouchitis, I do believe it was caused from some rare circumstances. On Friday I went to my appointment with my OBGYN. He is a new doctor for me, and so far seems to be a great doc. Well I had my exam and to my embarrassment he actually found a tampon in... [ more ]
Karbear This sounds exactly like my pouchitis symptoms except I also get sharp, stabbing pains in my belly. If I were you, I would call the doctor to ask for a script right away and make an appointment for a scope since you haven't had one in awhile. As for the vaginal discharge. That sounds like it could be normal discharge if your still menstrating. I have had a pinkish discharge in the past both before & after UC diagnosis. Still talk about with your Gyn when you see him/her. Doesn't hurt to... [ more ]
See all 3 replies...
J-Pouch ForumsPouchitis
Dr Shen
vanessavyvanessavy
vanessavy I am staying at an Econo lodge outside the city. A friend mentioned it to me. I am so broke as is this trip breaking the bank. By the time I visit I'd have had 5 scioes so I think I'll have that part covered :-) [ more ]
Chris M Thanks Liz.... I hope he is able to as well, becuase I am physically and metally exhausted at this point, and not sure how much more I can take before I crack..... [ more ]
liz11 good luck chris. I hope he is able to help you. [ more ]
See all 9 replies...
J-Pouch ForumsPouchitis
Imodium vs Pepto Bismol and Bentyl
R Rocket
Rocket kheane, I recevied your PM. Thank you. Rocket [ more ]
jeane Rocket...I messaged you. Good luck. [ more ]
Rocket kjeane, I have an appt with my GI tomorrow. I will ask him. Basically, I want to make sure I understand you and I apologize for my ignorance, but you use a plastic bottle and fill it with warm water and squezze it into your backside and I assume backside means you would insert that into your rectum? Is that right? Rocket [ more ]
See all 8 replies...
J-Pouch ForumsPouchitis
Pouchitis situation. Flagyl only and VSL3. Please help.
T Tigowoods
Tigowoods Thanks Rebe I have upped it and feel a little better. I seems to me that I might have the same thing. How long can you last though? It only lasts so long right? [ more ]
Rebe0505 i would forget the the probiotics and think getting what appears to be a form of good old pouchitis under control with antibiotics..when i have have pouchitis my burning is so bad i think its all raw in there and bingo when the antibiotics work it just goes like that..so if the upped flagyl does not work there are others..cipro mentioned but also keflex,tindermax and i am presently on augmentin..i have antibiotic dependent pouchitis in other words with out being on antibiotics at all times i... [ more ]
John95 There are many other antibiotics that you can try besides Flagyl. Cipro would probably be the next one to try if you haven't already. [ more ]
See all 3 replies...
J-Pouch ForumsPouchitis
Cramps and fatigue.
G Grandonion
Clicky Have to agree re the Augmentin. It has worked the best so far out of any other antibiotic. However, I find I need to rotate it. The fatigue for me means that it is not under control. When the pouchitis is bad I feel awful and exhausted and cannot function. Consider electrolytes if you are dehydrated from frequency. My surgeon was a cipro flagyl only kind of guy - but I asked him outright to try these other drugs and because we were so desperate he agreed, and they worked! All thanks to this... [ more ]
liz11 You can also have inflammation throughout your body not just from the pouchitis but from IBD. This can cause this horrible fatigue. Just because your colon is gone, doesn't mean IBD is gone. Some antibiotics in certain people can cause fatigue. Cipro has always worn me down tremendously. For those with pouchitis.. make sure you are staying hydrated. Dehydration can also cause fatigue. And Linda.. many jpouchers have antibiotic dependant pouchitis. Maybe you should discuss this with your doctor? [ more ]
Linda2 I am having problems now after two years since my j-pouch take down with pouchitis. I was put onto Cipro twice daily for two weeks and then when I came on the infection came right back. I am exhausted and feeling very ill. I went back to Dr and she talked with local Surgeon and he said to put me back on Cipro for another week. I didn't improve as well as the first time I was on the cipro and felt so bad today I went back to Dr. (trying to work as well but took today off as too tired and... [ more ]
See all 4 replies...
J-Pouch ForumsPouchitis
Pouchitis Symptoms
C chrfor
Karbear My symptoms with pouchitis include weakness, fever, increased frequency, and sometimes blood. I don't get the fever or bleeding until the pouchitis is getting more severe. It is usually just increased frequency and some pain. I would go on a light or liquid diet to give it some time to rest. If things don't improve, then call your doctor. [ more ]
Rebe0505 hard to say those symtoms could be various other things besides pouchitis and not related to pouch at all....i think you need to see how you are in a few days to see what develops.. pouchitis has so many different symtoms..i suffer from it for past 6 years and controlwith antibiotics but in my case never had weakness or fever. big time pain from extreme irratation,burning feeling when going..not feeling fully emptied when i go to bathroom are my telltale signs.. rebe [ more ]
kathy smith Those symptoms could be an indication of pouchitis. You probably need to give your doctor a call and run your symptoms by her/him. On the other hand, you're early in the process of your new plumbing and sometimes it takes a while to get energy back. So maybe part of what you're experiencing is normal and part may (or may not) be pouchitis. Good answer, huh? I'm sorry I don't have a more definitive answer. I hope things start turning around for you. kathy [ more ]
See all 3 replies...
J-Pouch ForumsPouchitis
New pouches- is this pouchitis????
FM Former Member
mgmt10 Being that you are only 12 days out from takedown the blood could be normal. I remember having some for a couple of weeks after takedown. But since you have already had pouchitis before the surgery, you may want to give your surgeon a call and tell them your symptoms. The blood could also be a result of the cuffitis too. Hope you feel better soon. [ more ]
See 1 reply...
J-Pouch ForumsPouchitis
Could This Be Pouchitis, And If So, How Do I Treat It?
K Kobe
Jan Dollar This sounds like pouchitis to me too. I don't know how it works in Australia, but in the US, we can usually get a prescription by just calling our doc and describing the symptoms. No need for an office visit or scope first time out. Now, if the antibiotics do not work or the symptoms keep returning after stopping antibiotics, then a scope is in order. Studies have shown that supplements do not work with acute pouchitis. If they do, then you didn't actually have pouchitis. I usually like to... [ more ]
CTBarrister Some people have used probiotics but usually only after the pouchitis is in remission. I am not sure if you can get pouchitis in remission using natural treatments. I have tried a few like aloe vera juice, straight probiotics and they did not work. If the pouchitis is not effectively treated it will get worse. [ more ]
Kobe Are there any natural treatments available? I'd rather not have to see a doctor unless it gets much worse. [ more ]
See all 4 replies...
J-Pouch ForumsPouchitis
Bowel Obstruction?
R Rocket
Rocket Marianne, There are other name brands out there, especially like the health food stores. I have never tried them myself but I am going to ask my doctor this evening when I see him. I actually found some juice at my grocery store that includes Probiotics without milk or soy products which I cannot have. A court cost me $3.99. I don't know if anyone has tried this type of treatment or take this supplement in a juice form. Rocket [ more ]
mgmt10 When I had UC my GI doc brought up probiotics as a treatment plan but I was just too far gone at that point. Plus my insurance didn't cover the VSL 3 that he recommended. It's super expensive. [ more ]
Rocket Thanks Karbear. I was diagnosed with UC back in 1993 (gosh I can't believe its been that long) and I wish Probootic was something on the market back then. Perhaps I would not have to endure so much for all these years. I hope this is not something doctors do not share with their patients? Rocket [ more ]
See all 8 replies...
J-Pouch ForumsPouchitis
Pouchitis Travel Advice
TheStomacTheStomac
TheStomac Thanks all for the responses. I have postponed the training and knuckled down on my diet. I am scheduling a visit with the GI about the time I finish this course of antibiotics. I have a feeling that the pouchitis is simmering in there. Mark [ more ]
CTBarrister Thanks for the input tammykathleen. I tolerated Prednisone well when I took it sporadically from 1972 to 1992, but it did make me get a Moon Face, increased my appetite (which has historically been better than good even without prednisone) and worsened my chronic insomnia. Those were the only issues I seemed to have with it. It seems like Entocort is not quite as harsh on the body as Prednisone. Stomac, it sounds like you need a longer course of antibiotics. You took them for only 7 days, I... [ more ]
tammykathleen In my experience, Entocort is nothing like prednisone. They are night and day. I was lucky and the Entocort worked wonders on me. I was on it for four years. I had non of the nasty side effects that I did on prednisone. It didn't cause me anxiety, joint aches, insomnia, weight gain, moon face-nada. I would never have believed I was on any sort of steroid. The cortico-part of it makes a world of difference. [ more ]
See all 6 replies...
J-Pouch ForumsPouchitis
is it necessary to have yearly scopes
R Rebe0505
kathy smith I would get the scope locally and send the results to Dr. Shen for his opinion. That would cost way less and take way less time. If your symptoms start returning then you could make a decision about going to Cleveland at that time. kathy [ more ]
Jan Dollar If it were me, I'd ask Dr. Shen who he would recommend in southern California. I bet he knows several colleagues who trained st Cleveland and relocated near you. Unless you were planning on moving near Ohio eventually... Jan [ more ]
Rebe0505 heard from dr. shen on his return and he said yes i should be scoped year two for sure..my husband and i will decide how and when we will do it..husband leaning to seeing shen for it even with cost to travel..besides i could set up any other appointments at clinic i might have concerns about either for me or husband..we might have to go to wisconson in fall so maybe we could work something out with that... rebe [ more ]
See all 9 replies...
J-Pouch ForumsPouchitis
Don't know what's going on!
SmeanieSmeanie
clz81 for it to come on that fast, it sounds like food poisoning or a stomach bug. it might take a couple days for the runny stuff to stop so keep hydrated. like kathy said, if you are unable to keep liquids down then make sure to get to the e.r. as you will probably need fluids. it's very hard for us as j-pouchers to come back from dehydration (if it comes to that) without a jump start from the iv bag. [ more ]
kathy smith From the description it sounds less likely to be pouchitis. It could have been something you ate, something that's going around, or a partial blockage. You're doing exactly what you should be doing if it's a partial blockage. If things continue to improve then it was just one of those things. If you notice you're passing no stool or start vomiting then go to the hospital. If you feel that you're becoming overly dehydrated that would also be a reason to go to the hospital. I hope you're past... [ more ]
See all 2 replies...
J-Pouch ForumsPouchitis
pouchitis? or something else
samantha1803samantha1803
liz11 hot bath, hot shower,heating pad. as kathi said-move around. walk walk walk. twist. and even try the red wine. [ more ]
samantha1803 Kathy: I think the pain is in waves but I am also cramping from my fibroids, that is the surgery I am having. I hope that does not confuse the issue. Also I had my husband go to the pharmacy and ask what to do they dispensed Laevolac syrup. I guess it is some sort of saccharide. (lactulose) Anyway I made sure he told them i do not have a colon and they said it was OK and this was normal course for pain killer constipation. One other thing though, my husband was rubbing my tummy for me... [ more ]
kathy smith Yes, people have found that the white grape juice seems to really help to get things going. But if you have a partial blockage you might want to move around as much as you can. Drink warm/hot liquids. Get on the floor on your hands and knees and quickly way your hips from side to side. Are you noticing pain in waves? One thing to note, if this is a partial (or full) blockage and you start to vomit or you're passing NO stool, you need to get to the hospital. But if you were getting sick... [ more ]
See all 4 replies...
J-Pouch ForumsPouchitis
Never had these symptoms before....
CristolCristol
tammykathleen I would like to commend all you posters for having the energy to do these types of work-outs! (I am proud that I have started walking my dog around the park, lol!) Kudos to you pouchers!! [ more ]
Subsky In my experience working out has always made me feel better not worse, as long as I'm healthy to begin with. For myself, it's if I work out when my pouch is already inflamed, then working out just creates more pain/urgency than before. Personally I think working out or doing any strenuous activity when you have bad pouch pain/frequent diarrhea is just going to add to the problem. Those activities require you to absorb and use water/nutrients much more than normal, and if you can't keep up... [ more ]
Rebe0505 whatever your issue is i do not think it has been causing pouchitis or by extreme exercise..if you were okay in every other way(muscles,over tired etc)..but some people get sick from extreme or exercise without jpouches..and it sounds like something different than your normal pouchitis issues... i have worked out for many years if anything work out make me feel better.. [ more ]
See all 5 replies...
J-Pouch ForumsPouchitis
Started 6mp, feel so tired....
K Krazy1
Krazy1 Wow lynne, 8 years?! but you feel ok? [ more ]
lynne-sa I've taken 6MP for about 8 years. Originally I was told that the drug takes 3 to 4 months to start working, longer than the 1 month Dr. Shen mentioned. While waiting for the drug to work I took steroids but I haven't had to take steroids since the 6MP started working. Bottom line: no flares (fingers crossed) in 8 years so my advice is to hang in there. I hope it works for you too! [ more ]
See all 2 replies...
J-Pouch ForumsPouchitis
Pouchitis or cuffitis?
V vstRN
jeane That was one of my biggest dilemmas after surgery. I often felt my surgeon was not listening to me as he just assumed most of what I was experiencing was normal healing until I insisted he view my pouch. I can tell you I had many sleepless nights crying on the bathroom floor or sitting in the tub every few hours as the pain was excruciating (rectal itching, burning, broken glass feeling, boot up the butt sensation etc.). I just did not think it was normal takedown healing pain. There were... [ more ]
Randi M Thanks Kjeane-you are one of the few on this forum that has been able to relate to my pre takedown symptoms..it will be interesting to see how this plays out for me..how does one know if they have cuffitis or pouchitis right after takedown? Aren't the signs of these similar to that of healing from the takedown surgery? Frequency, urgency, gas pain, any pain, possible blood..are these to be expected anyway? [ more ]
jeane I can speak to this topic, but I don't want anyone posting on this topic concerned that my experience will become their situation after takedown. Everyone is different and I am just passing along my experience. I had diversionary pouchitis prior to takedown and had all the symptoms you are describing vstRN. My surgeon felt it would correct itself after I started using my pouch. It has been a year since takedown and I just had a scope last week and I still have pouchitis and cuffitis. I was... [ more ]
See all 9 replies...

Join Us!

Founder, Creative Director & Web Master

William J. Johnson
bjohnson@j-pouch.org

Bill Johnson founded the J-Pouch Group in 1997.

After a life long battle with Ulcerative colitis, Bill finally had his colon removed and was given an ostomy in 1993. A failed attempt for a j-pouch and then many surgeries to get back his health gave Bill the motivation to create a web site dedicated to giving support to patients who have had or are considering j-pouch surgery.

Forum moderator and advisor
Jan Dollar R.N.

 

 

 

 

General Disclaimer

 

This ileoanal web site is designed for educational purposes only and is not engaged in rendering medical advice or professional services. The information provided through this ileoanal web site should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you have or suspect you may have a health problem, you should consult your health care provider.


Materials presented on these pages are copyrighted by William Johnson and Linda B Hurd. Except as superseded in individual documents found here, these materials may not be sold or redistributed for profit in any way without express (not email) written permission of the authors. This includes, but is not limited to, translations into foreign languages, mass archival as on a CD-ROM and inclusion in commercially published compilations (books).

Confidentiality

Confidentiality of data relating to individual patients and visitors to the J-Pouch Group Web site, including their identity, is respected by this Web site. The J-Pouch Group Web site owners undertake to honor or exceed the legal requirements of medical/health information privacy that apply in the country and state where the Web site and mirror sites are located.

 

CCFA

The Crohn's & Colitis Foundation of America,
Philadelphia, Delaware Valley chapter, is located at
521 Bustleton Pike, Feasterville, PA, 19053.
Tel: 215-396-9100


National CCFA headquarters are at,
396 Park Avenue South, 17th floor
New York, New York 10016-8804
Tel: 212-685-3440    800-343-3637

 

Join Now

Already a member? Sign In

Online Now

Copyright © 2019 The J-Pouch Group. All rights reserved.

Membership Required

We're sorry. You must be signed in to continue. Sign In or Register
×
Are you sure you want to remove from your Block List?
×
Loading...
×
When you block a person, they can no longer invite you to a private message or post to your profile wall. Replies and comments they make will be collapsed/hidden by default. Finally, you'll never receive email notifications about content they create or likes they designate for your content.
Note: if you proceed, you will no longer be following .
×
Link copied to your clipboard.
×