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J-Pouch ForumsGeneral Discussion
BM during the night - Experiences
M Makaveli
girlunky At 10 months by best nights are one wakeup, but two is more usual. On bad nights when my pouch is irritated or I ate too late I might be up and down for a couple of hours without getting back to sleep. So, eating later at night is my worst mistake - I'm best off when there's four hours before bed and I empty the pouch well then wash and dry. If I do eat anything, I follow Scott's advice and have a little pbutter or cheese. My doctor said never to eat & drink at the same time. So I'll eat... [ more ]
Makaveli Thank you all for taking the time to read through my post and replying. Much appreciated. For the first time since surgery, I only had to go to the toilet twice last night. And I am certain it was by no coincidence. Peanut butter is underrated! Forget meds, peanut butter is simply a must have. I'll go with eating some in the morning as well, it could slow things down further during the day too. The docs left me with nothing to go by yet this forum... pure gold! @Scott F Great idea on trying... [ more ]
Winterberry Hi, Makaveli. Your pouch is brand new and your system is learning how to work with its new life. It took me almost a year before I could sleep through the night. In the beginning for a few nights I had to get up every 15 minutes, no joke. I feared this was my new life and I would never get a decent night's sleep, itself a serious health hazard. But it did get better and I now sleep through the night, or get up once to use the bathroom. I eat everything except seeds or nuts, and I sometimes... [ more ]
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J-Pouch ForumsPouchitis
Dr Bo Shen Needle knife Therapy
TH Trish Helen
JHendrix Trish Helen, I was able to email Dr. Shen (and he responded!) but was also able to have full conversations with his nurse who answered questions before going for the consult. That was at the Cleveland Clinic however. [ more ]
Ellie85 I did everything in one visit. I did my initial consult the day before the procedure. I don't know if he would agree to do this for a case like yours but his nurse is very helpful over the phone and can tell you what they need. I was referred to him by the head of a big IBD clinic who knew him personally so that might have helped. Before I had my appointment, Dr Shen had my medical records, radiology reports, and I brought disks with my last MRI images to my consult with him so he could... [ more ]
Trish Helen Thank you! That is so helpful. Broadly speaking the cost if as you describe is doable. Its just unfortunate that I cannot complete any initial consultations via FaceTime or email as I am based in Hong Kong and it will involve 2 trips minimum. However, if it saves my colon, could well be worth it. Ideally I'd love to be able to email Dr Bo Shen just to introduce myself first! However I am not sure we live in an 'ideal' world! Very encouraging to hear it all went well for you and your recovery... [ more ]
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J-Pouch ForumsGeneral Discussion
Stoma convex on one side, level on the other
BrianDBrianD
BrianD Thank you, so far these convex barrier rings with paste have gotten me between 36 and, a today first 48 hours. But the skin prep along with the powder restores the skin, and that's HUGE [ more ]
missourimedic I'm having flashbacks to my loop ileostomy. It was difficult, with part of it retracted. For me at least, it got way better by around week 3 as some subtle swelling in my belly went down. I managed it with a thick barrier-ring and some barrier-paste. I would cut the hole a tad bit larger than I would have otherwise cut, and managed the skin with skin-protectant wipes. It was a pain, though. [ more ]
BrianD Thank you, yes at the advice of my Home health care nurse I've contacted one at a time. Something about them bombing a person with relentless calls. To date they have been very helpful. I'm waiting now for a package from Coloplast and in it should be several convex 2 piece barrier and ostomy bag. However my great hope is a revision surgery that my Surgeon has agreed to do. This is in my humble opinion the heart of the problem. Blessings Brian [ more ]
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J-Pouch ForumsGeneral Discussion
Back home from step 2 of 3. Numbness and loop ileo questions
FM Former Member
missourimedic I had the numbness for a few months, but it faded away and feeling returned. As for the difficult loop, mine was a nightmare. I had a tiny, retracted stoma. It improved over a few weeks as some swelling in my belly subsided, causing it to protrude just a tiny bit, but even that milimeter or so helped. I managed the seal with a barrier-ring and barrier paste. Also convex wafers. I would cut the hole in the wafer just a bit larger, and used skin-protectant wipes. My skin was difficult to... [ more ]
Former Member No idea regarding numbness and I had my abdomen cut open, didn’t experience any. in regard to skin erosion, heavily smear ilex protectant pasts around your stoma, over/on top of the damaged skin, whether broken or not and apply your convex flange over it. Leave the ilex paste on until it peels off by itself, during the next appliance change. I found, that within 2 to 3 days, my eroded and festering skin around the stoma had completely healed, although I continued to apply the ilex paste (as... [ more ]
CTBarrister I had the loop ileo for 3 months and it was an endless cycle of these kinds of issues. When I was at Mount Sinai in NYC the ostomy nurses were always able to get a good seal, but when left to my own devices after discharge, I had nonstop leakage issues, constantly had to change the appliance, and the skin was raw and weeping around the stoma and a yeast infection was developing. Fortunately, it was only 3 months dealing with this, and after takedown, it ceased being a problem and the skin... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Breast Feeding and a J-Pouch
L LC
Ellie85 Hey I used to be LC but couldn't get access to my old account My impression is that pregnancy and breastfeeding and your hormones returning to normal can do crazy things to your immune system. Breast feeding also requires you to eat A LOT and that is terrible for pouches. I think my pouch problems were a combination of struggling to drink enough, eating more than my pouch could handle (I do 16:8 intermittent fasting now and it helps so much), and actual structural issues with my pouch that... [ more ]
Matchaqueen I know this is a super old thread, so I hope you will see this. I have been nursing for the past 6 months. I have had relentless pouchitis symptoms that started 2 weeks before I delivered via c section. Urgency, frequency, pain in rectum before, during and after bowel movements. Minimal abdominal discomfort. I’ve since discovered that a VERY high dose of Visbiome will keep my symptoms at bay. If I dare try to reduce my intake from 4 to 3 sachets a day...my symptoms return. My husband thinks... [ more ]
maddie18 Might you have been dehydrated at time of breast feeding? Usually dehydration will cause constipation. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouchers who have had pouches at least 10 years: Nausea/Food urges
DG Dancing Girl
Ellie85 I haven't had trouble with nausea related to my pouch and I've had it about 20 years now. I agree with some of the other comments that it could be hunger. I had trouble with what you describe as a child and tween. I think it was low blood sugar and I grew out of it. I tend to eat a high protein high fat snack or dinner so I don't get hungry in the night OR have to go to the bathroom. Snacking before bed is tricky because of the pouch volume issue. Does the nausea go away anytime you eat... [ more ]
Dancing Girl Yes, I would be interested in the brand of CBD oil as well. Do you rub it into your stomach and temples in your forehead or are you taking it internally or smoking it? I have a medical marajuana liscense here in Maryland so would really love to know more about this! I am so glad you found something that has helped you!! [ more ]
ytcrockpot Would you mind telling us what brand of CBD oil helps with your stomach pain? Thanks ytcrockpot-39yrs J-pouching [ more ]
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J-Pouch ForumsHelp! Need advice now!
Rectal Pain and Straining
WH Wendy Hunter
Dancing Girl I hope you are correct. But be prepared to always have a bit of issues with your rectum.... that is felt far beyond just using the toilet!!! But that being said, the alternatives are much much worse and it IS good to have a positive attitude. Good luck to you. [ more ]
Wendy Hunter Thank you all so much for your responses. Each of us has our own unique spins on similar experiences. I am finding that diet is playing a key role for me. Still stumbling with butt and gut-friendly foods and learning that moving slowly with new foods is smart!!!! Aside from all of the physical pains, having a solid and positive mind is SOOOO key!!! I must admit that after all of the meds, surgeries, and set-backs staying positive is one of the hardest things to do. This mess will soon pass... [ more ]
Jessie ❤️
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J-Pouch ForumsGeneral Discussion
Insurance help and cost of jpouch surgery in the USA for international patients
V Vidu
Scott F J-pouch surgery in the US is ridiculously expensive, and is now usually two or three separate surgeries, separated by months. I’d be surprised if many folks here paid full price for it out of pocket, but others can correct me if that’s wrong. One reason insurance is so critical is that costs can balloon if anything goes differently than planned. Sometimes the intestines take a while to get moving again, as a very small example, and that can lead to longer (and more expensive)... [ more ]
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J-Pouch ForumsGeneral Discussion
How long does it take?
Mema 1Mema 1
Scott F Cipro often starts to work very, very quickly for pouchitis, at least in terms of symptoms. Visible changes in the pouch can take longer, but it sounds like he didn’t have a “before Cipro” look. Not all pouchitis is obvious on scope, but bleeding ulcers usually would be pretty obvious, unless the bleeding was coming from irritated hemorrhoids. You might also have had an irritable pouch, I suppose... [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-pouch and Metformin diarrhea
S slouchypouch
Accept It I was on metformin about 5 years ago. Same problem. I'll be starting a new diabetes med this spring. It won't be metformin. There are lots of other drugs to try. [ more ]
Winterberry Hi, Slouchy. I was on Metformin to lower my blood sugar and I had the same problems as you. It was not working at all, and I felt I was losing my nutrition and becoming dehydrated. After. Few months, my endocrinologist switched me to a second level diabetes drug called Januvia. I say second level because Metformin is usually the tried-and-true drug when introducing diabetics to glucose controlling drugs for the very first time. Januvia is not as strong as Metformin, but it has not caused me... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Good Colorectal Surgeons in Australia
D DownWithUC
Kushami Hello Sam, I feel terrible that I never answered your post here. I hope you have had surgery if it was needed and are feeling better either way. I'll just post the details anyway in case the info is useful to other people. My surgeon in Melbourne was Ian T Jones. He works at Royal Melbourne (public) and Melbourne Private (they are next to each other). http://www.colorectalmelbourne.com.au/ I have been happy with the care he gave me, both surgical and "pastoral" (e.g. bedside manner). He also... [ more ]
Samlim Hi Sarah, I am currently in hospital and may end up needing surgery. Can you please let me know which surgeon you had? I am also looking for the best. Thanks, Sam [ more ]
Maree Hi, I am interested to know who the Surgeon in Canberra Hospital was that you were not happy with because I am having a Total Colectomy this year by a Surgeon in Canberra and I am curious as to why you chose to go to Sydney. I would appreciate your reply as this is of great concern to me and I too would rather go to Sydney to have my surgery than to have a surgeon in Canberra who was not up to the job. Regards, Maree [ more ]
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J-Pouch ForumsOstomy & Skin
Confused! end ileo or barbie butt?
J Jayda
LORI726 So glad it is over Jayda! It sounds like everyone or almost everyone goes thru some sort of post op problem but you sound like you’re definitely on the right track! Hope you continue to enjoy your new buttless life!! [ more ]
Mysticobra Yes. Unfortunately the weight will find you. And it will go where you don't want it if you are lazy like me. Lol. I was down to skin and bone. I was skinny to begin with all my life. But then it went to the extreme. (128 pounds). I lost 50 pounds. I looked like death walking. Felt like it too. That's all in the past. Now I'm back up but still short of my normal weight and being a male it's all where it should not be. I should work out. But I did bring up that I'm lazy. Richard. [ more ]
TE Marie I'm jealous as my Barbie Butt was painful for months! I had to sit on heavy duty medical air butt cushions when driving too. Sorry you had to go thru all that other stuff as if the surgery wasn't hard enough on you. Don't worry, the weight will find you [ more ]
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J-Pouch ForumsHelp! Need advice now!
Feels like I feel my surgical cuts
P peji911
Christopher8 You need a second opinion. Plain and simple. Whatever it takes, you need to get to a reputable clinic like Cleveland clinic. You have something going on that just doesnt make sense. I wish u the best. [ more ]
peji911 A lot of your suggestions I have never heard of so will research right away. A friend of my parents had this surgery in 2000. Same surgeon. He can eat anything. He takes a a stronger version of Metamucil and says he feels great. He gave me some. I took it for 3 days or so and had the worse pain ever. That being said, I can't poop when I feel it either. I have to 'catch' my poops as I can sit on the toilet for hours and hours and nothing comes out. Not sure if it's related to the abscess I... [ more ]
Christopher8 The best strategies are the ones your body TELLS you about. I can eat salads and hot wings with no issues at all. Thats rare I understand but its just me. I cannot do dairy with out series consequences an hour or 2 later. i will say that if your stools become very loose, you will inevitably bring some gastric acid with it. Your toilet will be have alot of yellow to the stool if thats the case. That will burn badly on anus or rectal cuff. Use the nupercainal at that time ir sit in hot... [ more ]
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J-Pouch ForumsGeneral Discussion
Approved for SSI/SSDI Benefits
FM Former Member
TE Marie I think you get SSI if your SSDI benefits are below certain amounts. It all depends on the quarters worked and amount paid in. The amount we are paid varies from person to person so the resulting benefits for SSDI differ and if under a certain amount you can qualify for SSI too. [ more ]
Former Member I'm not 100% clear on this. I know they gave me a certain amount of both, but I only receive one monthly. So I was eligible for one of them for 4-5 months backpay, but that's all i received from that one. The other pays me monthly and had a certain amount of backpay. [ more ]
Espri ❤️
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J-Pouch ForumsGeneral Discussion
Hydrocortisone for cuffitis - got the wrong kind
B Bubba1028
TE Marie I couldn't take Cipro but took other antibiotics for pouchitis. I was a patient at Mayo's and they just did the 2 suppositories for cuffitis. You have to stick your finger up there pretty far to get them in but not as far as I'd think for the cream. Maybe it's something new that comes with an applicator. That would be nice. I suggest talking to the pharmacist before paying out so much. Glad your night went better. [ more ]
Bubba1028 Thanks. Yea I don’t want to be sticking my finger up there daily. I have found relief just doing topical once at night and with the Cipro - not sure if that’s just wishful thinking? I did put in a request to fill the script the called in for the hydrocortisone that’s the expensive kind but it’s on order bc they don’t carry it. i ended up pulling a muscle today so I was worried about that, didn’t get to call the gastro. Now the day is almost over and haven’t gotten the sups. Maybe call I’ll... [ more ]
TE Marie I eventually used both in suppository form. It's not an either or situation. They started me on hydrocortisone first and then canassa, mesalamine, and when it didn't went to expensive canassa to using both. One at night and the other in the morning. They both as samples that I tried first. I don't remember the exact cost but the hydrocortisone was pretty inexpensive. It is possible to get your finger all the way up to the cuff but it is not easy. My question about that is wouldn't you loose... [ more ]
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J-Pouch ForumsGeneral Discussion
Crohn's
M muck
CTBarrister Yes, but the medicine in my case works. The diagnosis doesn’t matter. It’s inflammation. It’s either treatable or not. What you call it doesn’t matter. Whether you can treat it does. [ more ]
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J-Pouch ForumsGeneral Discussion
Scope
C Ckf
PouchLogic I can eat dinner the night before, no breakfast, scope happens before 12. I can drink anything, up to the morning and after I am allowed small amounts of water. I never had to take anything for prep though... I've only had one scope since having the jpouch, so that is just based on that time, although it went well. Good luck [ more ]
CTBarrister I assume you mean breakfast and light lunch the day before? My usual prep instructions are light lunch and no solids after lunch the day before. Magnesium Citrate, 1 10 ounce bottle the night before (power chugged) and a fleet enema 2 hours before I leave for the procedure. Tried and true prep. I get scoped annually. [ more ]
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J-Pouch ForumsGeneral Discussion
Short term use of ibuprofen?
B-DawgB-Dawg
CTBarrister If you are on biologics like Remicade, NSAIDS are banned. That was made very clear to me from Day 1 when I went on Remicade. I am also capped on the amount of alcohol I drink, a rule which I have occasionally violated with no resultant impact on my liver chemistries. [ more ]
B-Dawg Thank you, Sharon! I have my annual followup appointment at the Cleveland Clinic next month, and will discuss it with my doc. I’m hopeful that with careful monitoring, as you suggest, I will be cleared to take ibuprofen at least occasionally. Jeff [ more ]
skn69 I think that it depends on your body and your underlying condition...I have been on NSAIDS for going on 20+yrs...I take a baseline dose 2xs daily for chronic pain (they put me on Tramadol for 6monts instead but I hated the feeling and side effects) and it does the trick...I get my liver and kidney functions checked bi-annually as well...I would definitely check with your doctor but I know of many on this site that do take it on the occasion but avoid long-term use. Sharon [ more ]
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J-Pouch ForumsPouchitis
Diet
JG James G Bond
James G Bond Thank so much for the response. I have a starting point and support and that goes a long way. Am sure I will have follow up questions soon. Jim [ more ]
PouchLogic I suggest the low fodmap diet. There is plenty of info and websites out there. It's helped me reduce gassy foods and figure out what bothers my system, especially during pouchitis. Good luck. [ more ]
Scott F The only diet that sometimes helps prevent pouchitis is a very-low-carbohydrate diet (including eliminating “good” carbohydrates). It’s slow, and doesn’t seem to help everyone, though, and I don’t think it’s likely to clear up active pouchitis. A diet rich in Cipro or Flagyl for a couple of weeks does that pretty well. The idea that diet alone can manage pouchitis is seductive, but research suggests that it is incorrect, at least in any consistent way. [ more ]
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J-Pouch ForumsGeneral Discussion
Thriva blood test - Liver function (Gamma GT elevated)
BobishBobish
Bobish There are no results btw.. thriva keeps telling me gamma GT is elevated and all my other liver function is fine. That's strange on its own.. 2 different NHS doctors (my gp and my bowel specialist) have both done gamma GT that came back normal... Not much I can do about this.... Both gp and doctor suggest that they trust the hospital test results over thriva. Guess I will just keep an eye on it, flag it up again if it persists. [ more ]
GraceB Hi BOBISH I was reading your post. I am not a Dr. but I was diagnosed with Primary sclerosing cholangitis which is liver disease. My surgeon said it is from UC and immune system. It is a slow progressing disease. Were you ever diagnosed with this disease. I am most likely wrong, It was just a thought that I wanted to pass it on to you. Please let me know what your results are. Hope your tests are good. [ more ]
Bobish Cheers Bruce, but as I said in my original post, all my enzymes are fine, it's only the gamma that's elevated. [ more ]
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J-Pouch ForumsGeneral Discussion
Pouchitis for a change
Mema 1Mema 1
Francesca Thankyou for all your replies. I can relate to most of them and a lot of your replies are good to hear. Things that a doctor would never tell you or wouldn’t know. I’ll have to work on my bladder probs. Never had an issue with UTIs until bowel surgery. Somehow I feel there might be some link between the two. I’ll write a check list for what you all have offered as being symptoms for Pouchitis and keep an eye on myself. Cheers Francesca 🌷 [ more ]
Scott F I don’t think pouchitis directly increases urination for most of us. Some of us choose to urinate every time we have a bowel movement, and pouchitis certainly increases the frequency of those. Sometimes the sensation of fullness in the pouch can be associated with a sensation of fullness in the bladder (or vice-versa). And sometimes our water drinking habits will change when other things are going on with our bodies. Our bodies will each have unique (and sometimes confusing) ways of... [ more ]
Andreita ❤️
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J-Pouch ForumsPouchitis
Cipro with Visbiome
SteveDSteveD
Andreita ❤️
Scott F I take my probiotic (VSL #3, similar to Visbiome) mixed in yogurt before breakfast and dinner. I take my antibiotics at bedtime, to space them as far from my probiotics as I can. [ more ]
SteveD PouchLogin - Thanks for the info and clarification as that helps. I did find some info in one of the books that I read and it states it's best to take any probiotic at least 2 hours after an antibiotic and preferably on an empty stomach. [ more ]
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J-Pouch ForumsHelp! Need advice now!
GI bleed
A Andreita
Andreita When I can start to self dilate? He told me the candle should be 18 mm and I found a tapered dinner candle that has that measurement at the bottom. He said to only put a fist length inside of course. He dilated me to 20 mm. When he was done there was a lot of stool coming out. I hadn't eaten since 8 pm the day prior and I didn't need to use the restroom in the morning. I was baffled where all this stool was coming from? I still am. After that I had absolutely no control over my bowel... [ more ]
Andreita I'm still bleeding. Is this normal? Also when should I start to self dilate? [ more ]
Andreita We didn't know I needed dilation until he barely inserted the scope. I'm not worried about the cost as I maxed out both in-network and out-of-network deductibles this year because I had 2 surgeries already (J-pouch creation & takedown) [ more ]
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J-Pouch ForumsGeneral Discussion
Ilestomy
BrianDBrianD
BillV Brian, I would be pleased to answer your questions. Please send me a PM with your phone number and I will call you back. Bill [ more ]
BrianD Hi Bill. we spoke in April and you graciously informed me of the BCIR. I spoke with DR. Schiller and he didn't feel like I needed the procedure at that point. He thought I should give the pouch time to heal. I know have an ileostomy loop and don't have high hopes of the pouch healing. This stoma is 1/2 concave and the enzymes in the stool are eating my flesh alive. I have contacted Dr. Schiller and I think I'm going to try and move forward with the procedure. I was hoping you would let me... [ more ]
BrianD Ok Bill, as I move further into this I'm sure I will have a mountain of questions. Right now this is moving at a snails pace. I'll get a look at these sights and contact. Thank you Bill [ more ]
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J-Pouch ForumsHelp! Need advice now!
Can’t stop straining!
K Kh1988
RLC Dancing Girl - I hope this information has helped you. I found my PT therapy through my OBGYN. She led me to the physical therapist that specializes in the Pelvic Floor area. Good Luck! Roberta [ more ]
Dancing Girl Wow. that is so interesting about going to for physical therapy to learn how to relax. I have had my J-pouch for about 14 years and still strain a lot (sorry to say this... !!) Hmm. I'll have to ask my GI about this. Thanks RLC. [ more ]
RLC I have been 12 years with j-pouch and straining has been my issue for a bit for me. Always thought it was strictures, too. After an anal manometry I found I am having difficulty with emptying my j pouch. Went to a PT for severe pelvic floor dysfunction and she helped me out a tremendous amount. Learned that I naturally have strengthened pelvic muscles due to trauma, surgery, etc. Needed to learn how to relax through pelvic exercises and deep breathing exercises through going to this PT for... [ more ]
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J-Pouch ForumsGeneral Discussion
Medical Marajuana Liscense
DG Dancing Girl
Dancing Girl Thanks. I never heard about the blood pressure situation. My primary care has me on blood pressure meds and he renewed my MM license and didn't say anything about it. And MY ophthalmologist who monitors me for Glaucoma twice a year says the amount I'd take would not help me curb glaucoma. Hmm. I do think it might be worthwhile to put some CBD (not hemp) into my system.. and will look into that in January. Thanks. [ more ]
thumprhare So you can also go to www.potbot.com And it depends what ‘effect’ you mean. THC causes gastric dumping and increases motility. CBD decreases (is not psychoactive) motility somewhat but is very helpful with inflammation. The ratio of CBD to THC is important to get the most benefit from it. I am not talking Hemp based CBD...I am talking sativa/indicas /hybrids that are ratio (CBD:THC) 1:1, 2:1, 4:1, 8:1, 16:1.... cannabis is metabolized in the CyP450 system—while very save by itself it has... [ more ]
Dancing Girl I also don't believe THC is bad.. I believe drug companies will keep stating it is because they want to make money. I hate big pharmaceutical companies and while sometimes necc.. many were just given to help a side effect you got from taking another drug. This I know first hand from when I was first diagnosed in 1976. At this point in my life, I am looking for natural things as much as I can.... I just got really sick with a medicine prescribed for arthritis.. two months of feeling sick. [ more ]
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J-Pouch ForumsGeneral Discussion
So much to attend to.. sometimes it's just exhausting!!!! Need some better coping tips.... if there are any!!!!
DG Dancing Girl
Dancing Girl My issue is... I can't put that basin in the toilet without cleaning the toilet. My boyfriend leaves things a mess and it's not worth talking about.> i just clean up after him because I also make a mess from all the gas and stuff. It would take forever to always clean the toilet in order to put the bidet in.. and also, we only have one bathroom and he is of the age than when he needs to pee, he needs to pee and I have learned to quickly get out of the bathroom and let him pee, cause I can... [ more ]
tf I agree with the basin, that's what I meant when I said I do a sitz bath. As far as warm towels. I just use my wash cloths under warm water. Also, I go to bed with a bed buddy a warmer which goes under my bottom also another on my favorite lounge chair. I heat in microwave as needed. It really helps with the soreness and pain. My problem has and will always be output which makes me sore and in pain. My UC was severe and I needed the J pouch which takedown was 2 2013. [ more ]
Winterberry Try a sitz basin. You can get one from Amazon or major drug store chain for under $20. It's a plastic basin that you put in your toilet and use once or twice a day if needed (seat up, so the basin tucks into the toilet snugly). And remove it when someone needs the toilet. Fill the basin with very (very) warm, but not hot, water. Lower your bum into the basin. You'll notice that the water you displace will flow safely out of the little hole in the back of the basin. Sit in the sitz basin, now... [ more ]
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J-Pouch ForumsPouchitis
Constant inflammation
lholdemlholdem
CTBarrister I can't speak for the others, but I was indicated for annual scopes from the start due to a finding of dysplasia at the time of colectomy. My scopes showed inflammation every year, but the real reason I was on chronic antibiotics was, and is, to manage the symptoms. Doctors normally don't medicate patients unless they have complaints. For 20 years or so, my GI described my inflammation as "simmering"- in other words, somewhat low grade. They were kept that way by a regimen of constant... [ more ]
lholdem So are you all on antibiotics because of constant inflammation period? Or did it get pretty severe before they decided to put you on full-time antibiotics? also I’m assuming the dose of antibiotics is lower when you’re on it full time? [ more ]
CTBarrister I am like Scott. Been on antibiotics continuously for 25 years, no side effects of significant consequence. Fortunately, because of now taking Remicade, I have lowered dosages considerably but can’t get off. [ more ]
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J-Pouch ForumsPouchitis
Worth Doubling Up on Flagyl & Cipro?
D DeathStalker
C.S. Scott F thanks for the info . [ more ]
Scott F I take Cipro 500 mg and Flagyl 250 mg at bed time. I started at a higher dose and very slowly reduced them until symptoms recurred, to find the lowest effective dose for me. I agree with CT that you need an ongoing relationship with a doctor capable of helping you manage this. [ more ]
C.S. CT Barrister thanks for your response and information. [ more ]
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J-Pouch ForumsPouchitis
Garden of Life Ultra Probiotic for Pouchitis?
D DeathStalker
PouchLogic I understand the thought you are having but Visbiome is only twice as expensive, has way more (over double) of the proper probiotics for jpouchers. So theoretically you could take one packet every other day and it would work out cost wise and you would get a better product. Just my opinion. I based the price I found on Amazon to what I pay directly to Visbiome, which I suggest everyone check their website as it's usually less expensive than Amazon... Not to say that the other stuff won't... [ more ]
Scott F I don’t know anything about Garden of Life, but it’s best to be aware that Saccharomyces boulardi isn’t a bacterial strain, but rather a strain of yeast. It’s still reported to be helpful for some purposes, particularly C. diff prevention, and is the key ingredient in Florastor. I’m not aware of any evidence that it helps with pouchitis (other than that caused by C. diff). [ more ]
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J-Pouch ForumsPouchitis
Visibiome
HE herb ear
Scott F It’s a long shot, but your best chance is to take a maximal (i.e. expensive) dose. I believe that’s 4 Extra-strength packets per day. For what it’s worth, that’s the VSL #3 dose I’ve been on for years. [ more ]
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J-Pouch ForumsGeneral Discussion
Yoga and abdominal pain
AI Accept It
winter wish Yes, good point. Diaphragmatic breathing -really we should all be practicing! [ more ]
Accept It Thank you everyone for your replies. Totally makes sense. I have modified some poses and am more conscious of my breathing. TF No, I have never had bleeding with physical exercise and I am a 34 year j poucher. Maybe mention this to your doctor. [ more ]
winter wish I have yoga for years and definitely don’t push your body. recently I joined the gym again and I found the twisting abds machine had the same effect, so left it out and maybe try again in the future. x [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
THYROID
K kk
CTBarrister Sophia, My diagnosis was papillary thyroid cancer and my entire thyroid was removed in July 2015. I have done well ever since and my most recent quarterly blood test showed a good TSH level and my tumor marker was 0. Did they mention if you will be given radioactive iodine after surgery? Thyroid cancers are typically treated with a combination of surgery and radioactive iodine if there is any sign of metastasis, which they will not know until surgery. My ENT surgeon told me the metastasis... [ more ]
TE Marie Sophia, I hope your surgery goes well. I'm glad they decided to do the biopsy. I hope you don't loose your entire thyroid but I think it's going to be easier than loosing your colon! You've got this! [ more ]
Sophia Hi everyone it’s been a while since I have given anyone an update of my situation. Since my last post I had done a lot of waiting and worrying about everything. In October I finally got to see the Ent specialist at first he wasn’t overly concerned about the ultrasound results because there was no calcification or suspicious activity. But because of the fap and the greater risk of cancer he had spoken with his colleague within the same office. They felt in the best interest of my care that... [ more ]
See all 29 replies...
J-Pouch ForumsPouchitis
What to do when Cipro & Flagyl Stop Working?
D DeathStalker
Scott F Everyone is a bit different, so it’s hard to tell except retrospectively. Since we don’t really know what causes occasional bouts of “normal” pouchitis, it’s reasonable to imagine that some GI disruptions could lead to it. If it clears up on its own then it’s probably not “normal” pouchitis, just a slow recovery from the GI bug. People vary in how willing they are to try a course of antibiotics, and how willing they are to put up with the symptoms without taking action - personal preference... [ more ]
DeathStalker Are you symptoms the same as normal pouchitis when a virus has brought it on? I know mine have been - shallow cough, cramping, malaise, feverish (with no fever), urgency, etc. I'm guessing it's just going to have to take its course. Sucks though in the interim. [ more ]
Scott F You’re not alone in experiencing an extended recovery from an “ordinary” GI bug. I’m not sure it’s pouchitis, though, or at least not the usual kind. I’ve had the same experience, even though I’m always on Cipro and Flagyl, and eventually things seem to settle down on their own. If/when my Cipro and Flagyl *really* stop working permanently I expect the next step to be one of the biologic medications, perhaps Humira or Entyvio. A number of folks here have successfully made that transition,... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
New J-pouch
Smallville43Smallville43
Scott F I used psyllium (e..g. Metamucil) twice daily right from the start, and I’ve found it helpful for 17 years now. It bulks up the stool making it easier to retain. In the early months I did kegel exercises many times per day to increase sphincter tone and decrease leakage. A good barrier cream should have plenty of zinc oxide, either plain zinc oxide or (if you prefer) something like Calmoseptine. I still use Imodium every night at bedtime. Good luck! [ more ]
Smallville43 Thanks for the help and support Girlunky. I did try an Imodium last night. Was ok, still had an incident in my cool ass man depends. LOL. Good to hear I'm on track, also glad I found this group, definitely let's me know I'm not alone in this journey. I have been doing some aquaphor on my area as well, going to look into different creams this weekend too. Thanks again. [ more ]
girlunky Hi Chris, I had my takedown last February. Doc said it takes a full year to adapt. For sure the first couple of weeks (months) were rough. Actually only getting up twice a night at this point is excellent. I still consider 2x to be quite good. Early on I was up every two hours. Are you taking Immodium or Lomotil to slow down your output? I still take them before bedtime and find it helpful. Also I try not to eat less than 4 hours before bedtime. The itching is probably from irritated skin... [ more ]
See all 3 replies...
J-Pouch ForumsMen's Health
J-pouch and masturbation/sex and pelvic pain
M Moe
PouchLogic There should be no issues. It may be due to scaring, like maybe something is being restricted because of scar tissue. I would definitely suggest talking to your doctor. If you really haven't been masturbating for a time it could also just take some time to get use to it. Did you have a open surgery or was it laproscopic? Having issues with errectile function is a possibility that I was warned about before surgery, although I was also told that it had never been an issue at my surgeons... [ more ]
LIGuy11 I don't know of any restrictions in regards to sex or masturbating with a j-pouch (for males at least). Definitely let your doctor know about this though. That's what they are there for, and don't be afraid to ask. They hear this stuff more often than you think. [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Fissure not healing
N nharr613
winter wish Maybe try sphincterotomy -partial [ more ]
LIGuy11 If you're talking about relief in regards to the pain, my pharmacist recommended Recti-Care which is a numbing ointment. I usually put it on a q-tip and apply it to my anal area and sometimes even stick it up there for a little extra relief lol. Give it a shot. Definitely continue to follow up with your doctor though. [ more ]
Maria410 ❤️
See all 3 replies...
J-Pouch ForumsPouchitis
Best OTC probiotic besides VSL-3
D DeathStalker
Winterberry Hi, Deathstalker. I just don't need it anymore. I don't have any serious issues with my pouch, or with poops, and I can eat anything I like, so I stopped taking probiotics three years ago. I use food to manage any issues if they pop up, and so far nothing too serious that would require meds or probiotics. I don't use Metamucil or psyllium or any thickening/loosening agents. I think if I needed to take bio-K again, it would work quickly and effectively. A few weeks before my surgery, I took... [ more ]
Still Standing I use over the counter Align. (Just the regular formula - not extra anything.) I've also started to drink kefir. I use the plain stuff and mix it with my own stevia sweetener, fruit, psyllium, chia, and flax seed. I started it for an extra boost after being on antibiotics. These seem to help me, but my biggest problem is that I like sugar way too much If I don't try and moderate it, pouchitis has way too good of chance of gaining ground. [ more ]
DeathStalker Why did you stop taking it? [ more ]
See all 6 replies...
J-Pouch ForumsPouchitis
Visbiome is working but...it shouldn't be?
M Matchaqueen
Scott F I’ve gotten my insurer to cover VSL Prescription strength, but it took a year-long fight. I haven’t been brave (or foolhardy) enough to mention Visbiome to them, and without a diagnosis of pouchitis I would have lost that fight. Most insurers seem to not be covering these any more, based on postings here. [ more ]
DeathStalker Is Visbiome covered by most plans? I know VSL used to be when it was in double strength and then my provider stopped covering it. [ more ]
Scott F Not everything that behaves like pouchitis looks like pouchitis. I’m glad you found something relatively harmless (except to your wallet) that makes you feel better! [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Pneumonia Dx
drone3drone3
drone3 Thanks so much for the advice...I'm finally over the pneumonia. I skipped one week of MTX and delayed my Humira until after I finished the 5 penicillin injections, which really knocked it on the head. I took a few different probiotics at the time and after. I also went on serotide athma spray for a few weeks and found that thyme herbal tea really helped my lungs. Summer has arrived in Australia and I'm hoping the warm air allows my lungs to fully recover as they can get sensitive to the cold... [ more ]
CTBarrister I am on Remicade for 4 years, had pneumonia this past spring and all that happened was we delayed an infusion until I was symptom free. We delayed the infusion by about 10 days and it was then given after I stopped exhibiting symptoms. That was per GI orders. You should make sure your GI knows and let him or her make the call on whether to delay treatment. Delaying treatment 1-2 weeks while you recover from pneumonia should not be a huge deal. I had another x ray in June which determined the... [ more ]
girlunky Hi Drone, I would not be surprised if you were instructed to hold your treatments due to the pneumonia. Do you have viral or bacterial pneumonia (or both?) How are you being treated for the pneumonia? Too late now, but did you have the pneumonia vaccine? [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Intensely Itchy Skin
R Ross
Dancing Girl I am glad things are working out for you. For me?? I'd rather itch then be on meds with tons of side effects. I was on prednisone for years before it was decided to take my colon out. Good luck to you as well! NO MORE MEDS FOR ME!!! NO NO NO!!!! [ more ]
Ross Hi Dancing Girl - The immunosuppresants are working well. My dermatologist has me on mycophenolate mofetil (Cellcept). So far no real side effects. We are in the process of gradually reducing the dosage to find the minimal effective dose. If your issues are autoimmune related you might try something like this. The other option was prednisone (which I was on and off for some time, but that obviously has side effects). Good luck. [ more ]
Dancing Girl Wow, I am reading all this and going to say that I get this strange situation every fall and spring... Bumps that itch like HELL on the back of my neck and then that turns into a rash. I also get really dizzy when the weather changes like that. It's like an allergic reaction to each season and my body fights itself with nature until it settles down as I get used to the season! So weird!! but so true.. year after year the same thing!!!! I had Ulcerative colitis for years and years and years... [ more ]
See all 21 replies...

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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.

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