Calmo
Visbiome

Skip to main content

Topics

Sorted by last update

J-Pouch ForumsGeneral Discussion
Pouch removal
J JoelSmith
Lambiepie Hi Joel, glad your surgery is over and done but, whew, sorry for your unexpected experience and all the stress that must have come with that. My surgery was in the winter and I remember still sweating. I just chalked it up to all the meds working their way out and my body recovering from the trauma of surgery and trying to heal. Sounds like you are very observant of your body. Keep good notes for when you see your doc and you can ask questions and be as specific as possible in order to get... [ more ]
JoelSmith Just an update - I had the j-pouch removal surgery back on the 29th of September. It was pretty tough. The removal went well but there was internal bleeding and they had to go back in on the 2nd day and find the source and then restitch and restaple. There was also problems with the epidural, by the 4th or 5th day it slipped out and they decided to take it out. They increased my Fentinal to compensate which started to give me side effects, hallucinations and anxiety, had a nervous break... [ more ]
skn69 Hi Joel, I went pretty much strait to a K pouch (no j pouches back then)...it worked for me...removal is an option but if you wish to keep the door open for future options like the K pouch or BCIR then consult the surgeon beforehand. There are things that they may need to do while in there to assure that the transition is possible once the remove the pouch. I wish you luck with your decision, I know how hard it is. Sharon [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Questions questions questions!
KaterinaKaterina
Katerina Thanks Joel. Hydration is fine now. Slowly getting there xx [ more ]
JoelSmith Hope you're feeling better Katrina! Its a long healing process and takes a while for the body to readjust. I hope you've been able to find a balance with the hydration issue. It's good to not drink too much liquid with meals and in-between sips of things like smart water or vitamin water has helped me find a balance. Wishing you well [ more ]
skn69 Post op is different for everyone but there are so simple steps that I follow. Keep a heating pad handy. If you Keep a heating pad handy for immediate relief. If you don't have one, then fill a clean sock with raw rice, make a knot in the top and pop it into the microwave for about 2 minutes (you can gauge the time needed by adding a few seconds each time until it is hot enough for you) then put it behind your back where the pain is...instant relief. I like powdered soup mixes...you can get... [ more ]
See all 53 replies...
J-Pouch ForumsHelp! Need advice now!
prostate biopsy
blazeblaze
blaze After meeting with my doctor this morning he decided to do the same procedure you are referring too in the very near future. I was relieved that he will be doing the same procedure as you Ray. He had never performed a prostate biopsy on someone with a j-porch. Thanks for the advice from you and Jan. Blaze [ more ]
bcirray I have a BCIR, so a biopsy was done via transperineal. A in office procedure done with patient asleep. Some blood in urine as a side effect for a couple of days. Ray [ more ]
Jan Dollar I think if you do a search there are a number of members who have had prostate biopsies. It is safe, as a very small needle is used. Jan [ more ]
See all 3 replies...
J-Pouch ForumsPouchitis
Possible Pouchitis?
J Jersey_Mike
MDS I think eating balanced meals, maybe 4 small meals might help you get down to 6-8 a day. [ more ]
JoVic Awesome! That's great news about the exercise! You may get more pouch control as your body gets stronger after surgery. I remember being really weak post takedown and then as healthy as I have ever been once fully healed. Even did a sprint triathlon and came in 3rd in my age group (it was a small race, but still). Def ask about Florastor. I really swear by it. Since it's a probiotic yeast it won't be killed by antiobitoics and it's good for preventing c-diff and other opportunistic bugs. [ more ]
Jersey_Mike Thanks! We did talk about the VSL 3 and he told me to keep taking it and just to take it away from the antibiotic doses as much as possible, like Scott suggested. Unrelated to any of this, I also got the all-clear to start exercising again (this was actually my post-op appointment) so that's good. [ more ]
See all 14 replies...
J-Pouch ForumsGeneral Discussion
J-pouch surgery
S Swazianna
Former Member Ilex Protectant Paste www.ilexhealthproducts.com You can request free sample sachets before purchase or maybe haggle for a free tube of ilex paste, claiming that a few sachets is not enough to evaluate the product. In my opinion and based on personal experience, ilex paste is by far the best product to apply to prevent and to heal diaper rash or any other anal irritation, itch or burning sensation. As a prevention or to treat irritation, only a very small pea size amount of ilex is applied,... [ more ]
Swazianna Thank you so much for your reply. Can you suggest any good barrier burn cream for her anus so she can start preventing burning pain now? I am going to encourage her to join this forum. I just read your message to her and this has already given her encouragement to join your forum. Finger's crosses! And thanks again �� [ more ]
Jan Dollar Rest assured, your sister's next surgery will be a breeze compared to the j-pouch surgery. Essentially, it's just closing the ileostomy, so surgical pain is minimal in comparison. Some people get a lot of gas pain during the weeks following, and this can be quite overwhelming. But, you can help prevent this by walking a lot, getting off opiates as soon as feasible, and small frequent meals. The other main issue is serious diarrhea as the pouch and small intestine adapt to being a reservoir. [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
hysterectomy
P pammieskrh
Jan Dollar Duck, unfortunately a hysterectomy for endometriosis is very different from a simple hysterectomy. While anyone with prior pelvic surgery will have potential issues with adhesions to other pelvic organs, endometriosis ups the ante many times. This is because you not only have the adhesions from prior surgery, you have the arduous task of removing endometrial lining that has entered the pelvic and abdominal cavity, and adhering to your intestines, bladder, abdominal walls, etc.. This tissue... [ more ]
duck11 I'm in the same boat as you so do let me know how things work out. My gyno has been trying everything possible to avoid surgery for endometriosis but it seems now this is the only option. He made it sound very risky and that a bowel surgeon would be needed in the room too, so I'm glad to hear these positive stories. Please update here how it goes for you! [ more ]
CeeeeCeeee I had an open hysterectomy a few years ago and it was a simple recovery for me! My surgeon went through the scar from my proctoclectomy and it healed easily. My J-pouch was no worse for wear! Best wishes! [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Not completely emptying, not pouchitis?
M Mike13
noya12 Can someone please explain what septum is. [ more ]
Scott F Megan- Echoing what Mike wrote, that codeine sounds like it may be part or all of your problem. Is there any reason you're still taking it? If stopping the codeine doesn't fix you up, you might want to get a pouchoscopy to see if you've developed a stricture. As far as hydration goes, the amount you're drinking doesn't help figure out if you're dehydrated or not. If your urine is dark or very dark then (unless it's occasional) you need more hydration, one way or the other. If your urine is... [ more ]
Mike13 Megan, No need to apologize for contributing to a post I started. That is what this group and forum is for after all. I too can learn from you. That said, I've never had pouchitis present itself to me with the symptoms you describe. With pouchitis, I've always had increased urgency, bloating, and feeling of not completely emptying. Big difference is my pouchitis was always loose, never had "dryness". It was always resolved with 2 week course of Cipro. This bout was different but I seem to... [ more ]
See all 15 replies...
J-Pouch ForumsGeneral Discussion
tips to empty pouch please.
G Guest
pouchington I've had chronic mild pouchitis from day one and nothing helps. Antibiotics work while on them then returns instantly and rotating isn't possible because I'm very sensitive to the the commonly used antibiotics. Your suggestions are very welcome my friend. [ more ]
Bobish POUCHINGTON sorry to hear of your problems, to be honest you have far more experience than me, so i wasnt really replying to you. Everything i can suggest im sure you have tried. The 2 things that have helped me durnig my time with UC and now this is 1) Warm water, bathe the backend in a warm sitz bath to prompt the bowels to open. I have good results with this 2) stretching, ie standing with you back agaisnt a wall like military straight, then dropping on your knees, face on the floor and... [ more ]
pouchington Scott, I had biofeedback which showed normal resting pressure so I just don't understand. I had very little relief from pt. Not enough to notice or continue after a dozen times. Bobish, I'm 4 years out and have no need for pain killers but incomplete emptying is enough to drive you mad and keep you homebound. It's a very difficult existence and impossible to gain or even maintain weight. I'm 5'6" and 115 pounds and losing. My surgeries (likely extensive anesthesia) caused ongoing substantial... [ more ]
See all 18 replies...
J-Pouch ForumsGeneral Discussion
Yeast /fungal infections
C cassiecass
since1991 I forgot to add avoid sugar. [ more ]
since1991 It's because of antibiotic abuse. The antibiotics kill the healthy bacteria that keeps yeast under control. I had to get off of the antibiotics. I had severe yeast in my vagina and outside, my anus and pubic area. I used 7 day vaginal yeast infection cream in my vagina and around the anus and as far as I could get it inside using my finger. Try something for Jock itch on the external areas. Get on a good probiotic. I use two. 'Florastor' or the comparable store brand, and Align. Both are... [ more ]
TE Marie I take a PPI, Omeprazole, and I believe the consensus is that it is better not to take such medications unless there is a good medical reason, like GERD. I don't know how it relates to yeast/fungal infections. The probiotics I take include VSL#3DS, and am doubling up on it currently as just took 3 weeks of antibiotics. Plus I take s.boulardii twice daily to ward off c.diff infections. I eat at least 2 Greek yogurts daily and there are probiotics in them but they are minuet compared to the... [ more ]
See all 28 replies...
J-Pouch ForumsGeneral Discussion
Which Doctor Would You Go With For This?
KQ Kevin Q
Kevin Q The one thing I like about my local GI doc is he can get me in right away and will return a call the same day. So in terms of following my treatment, I feel like he's right there with me, as opposed to Dr. Shen, who you get in with after waiting months, and it may take days to get a call back, if you get one at all. [ more ]
Kevin Q Thank you! I'm leaning towards seeing Dr. Shen. Even though it's more difficult to get in with him, and get up to Cleveland to see him, I always leave knowing that I have received the best advice. For example, if it is cuffitis not responding to the meds, would my local GI doc even know about pouch advancement/mucosectomy? Maybe and maybe not. And even if he knew what it was, it's unlikely he's ever performed one. My concern with seeing my local GI doc is being treated with what is in his... [ more ]
Jeffsmom I would see dr shen. At least for a consult. Perhaps him speak with your local doctor as to a course of treatment. But i would start with Shen. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Done. After three years from initial removal of colon. Whoo Hoo!
MysticobraMysticobra
Mysticobra I hope so too. It's not bad at all over here. Not anything like what was in my mind. And there was nothing good prior to getting it in my mind. I did a change today after four days. Nothing there as in problems. Looked good. No red. No sores. Nothin. Put another on and it's like any other day. You just quit noticing it. At the beginning of course just seeing it hanging there bugged me. But no more. Just another way to poop. And I doesn't hurt! Richard . [ more ]
SolomonSeal "Done." What a beautiful word. It's what I desire most. As I approach removal, I hope I can say the same thing. Thanks for sharing, Richard. [ more ]
Mysticobra I felt the same way before surgery. I was scared expecting the worst because if my past surgeries. But it was a breeze. But. I only had the pouch 26 months. I have to put that out there because the longer you have it. Well . You know. I wish you the best and for your son. There is life and wellness in on this side. I'm living proof. I only hope it all goes better than you both think. It's terrible to live that way. Terrible . I know. Richard . [ more ]
See all 12 replies...
J-Pouch ForumsGeneral Discussion
What other over the counter sleep aids can I use besides Benadryl & Melatonin?
FM Former Member
andru123 I have had sleeping problems for nearly 20 years (started with UC flares). I've tried everything out there from Tylenol PM to ambien and lunesta. The ambien and lunesta made me sleep walk and actually sleep drive (only did it once when I drew the line and said NO MORE!). I tried atavan but it kept me too drowsy throughout the day. I am currently taking a 1mg Xanax and 2 Tylenol PM 30 minutes before bed. They seem to work well together. I get very sleepy, but I can wake up in the middle of... [ more ]
Winterberry I used Ambien years ago for a few months. It is very powerful and addictive, and can result in memory loss, which can be dangerous. As a less dangerous side effect, I misplaced a huge $$ cheque while on Ambien. We never did find it. Thank goodness it was not a blank cheque. [ more ]
Former Member During my many episodes of dehydration, I suffered from insomnia. I would feel absolutely exhausted all day, longing for my bed, yet wide awake and unable to sleep at bed time. It's believed my insomnia is a result of dehydration, actually a loss of electrolytes rather than a lack of fluids. Apparentlty, the loss of electrolytes can change the body clock, thus feeling tried, sleepy and exhausted through out the day but unable to sleep at night. Which, for many months, is exactly what I... [ more ]
See all 18 replies...
J-Pouch ForumsGeneral Discussion
"IF" The S%*T hits the fan?
DarkwatersDarkwaters
SolomonSeal I don't know if we would stand a chance as drinking water would already be in short supply and we might dehydrate. That'll probably get us before anything else. Personally, I think that I want to work on some "homemade" ostomy kits that I could fashion from basic supplies, were my supplies to be disrupted for any reason. As for Jpouch, I would raid a pharmacy for antibiotics and hope for the best. [ more ]
Mysticobra Never thought about it. Collapse . If it happens . It happens. I'll worry about it then. Tape a cup over my stoma. I think we will all go at once . Meteorite. Big one. Go out like the dinosaurs . Lol. [ more ]
Jan Dollar Thanks Scott. Guess I am not all that well informed. As for me, if civilization were to collapse, a fiber source would be the last thing on my mind. Jan [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
VSL#3
G GraceB
Sabina27 Scott, You are the best!!! Great letter, I also will let you know what happens! Janie, best of luck to you! Sabina [ more ]
Janiep Scott... you're the BEST! Thank you so very much!!! So much going on right now. I feel like I have chemo brain without the chemo! This letter is just amazing!!! Will let you know what happens! Feel good!!! Janie [ more ]
Janiep ❤️
See all 12 replies...
J-Pouch ForumsGeneral Discussion
Abscess seton drain, any good results?
linzeplinzep
Trojan In 2007 I had a peri-anal abscess, diagnosed by MRI and a procedure to open the fistula and insert a seton. It took a while to get used to, I use a dilator and it made that more uncomfortable so I had the first seton replaced, then the second one broke and I had a third inserted, which I still have. Apart from the hospital visits it's not been much bother - I only notice it when I wash that area. I do sometimes get a little nightime incontinenece (I use pads) but I also had that before so I... [ more ]
Burke Yes, I have a MRI coming soon. [ more ]
linzep Soak in a hot tub. That will help. Mine felt better once it burst. Have you seen your doctor yet? [ more ]
See all 9 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Upset stomach yet again
C CandiceT
Mysticobra I had the same problem with.... with the lets just say stomach and stress. Even with the pouch it was there. Stress. Unfortunately most times. But there. Now that that is all gone. Colon and pouch. I realize it wasn't my stomach. It was my colon. Period. Or pouch. I had my pouch removed and all the tension I experienced most of my life is gone. Gone! My midsection has never in my memory (I am 60) do I remember it being this relaxed no matter what activity . I was like you. Even leaving the... [ more ]
CandiceT Hi Sharon, I am not taking it as an accusation at all. Since getting my jpouch I am very nervous about my stomach when going out. I don't want to be embarrassed. I also don't want everyone to always think I'm sickly. It might be stress. You might be right. Do you know of any anxiety tablets that you can get over the counter that is safe? [ more ]
skn69 Stress? Could you be stressing about going out? I am not accusing you of having a psyco-somatic illness but believe that stress can be the cause of many problems and if you suffered a lot pre-pouch with urgency and/or incontinence you may be worried about things happening while out...And that can create a vicious circle of symptoms. Have you ever tried taking an anti-anxiety med before going out to see if there is any difference? Just a thought. Sharon [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Holding in gas
RR Rafal Rybak
Winterberry When sitting on the toilet, try to sit up straight as this seems to straighten the pouch and gravity takes over. Or, try to lean backward slightly, as if you want to rest your back against the toilet tank (just be careful not to put your full weight against the tank!). Wait a few minutes to see if things start happening. Hold this position for maybe 20 to 30 seconds. There is a slight curve to the j pouch so sitting up tall and straight, or leaning back, gives room inside for the stool to... [ more ]
Jan Dollar High levels of gas and foul odors may mean bacterial overgrowth. Ask your doctor for a course of antibiotics to get this under control. Another issue might be your choice of fiber supplement. Many people are sensitive to psylium and it can cause excess gas. I was one of those. It thickened well, but increased gas to a crazy level. You may want to try Citucel or Benefiber instead. Jan [ more ]
CeeeeCeeee Just a couple of suggestions......sit on the toilet for about 10-15 minutes and if nothing or very little comes out, stand up for a few minutes and then sit back down on the toilet. If nothing comes out, do it again. (Once I sat back down on the toilet, I'd cough really hard a couple of times.) Sometimes just a change in position gets things moving....probably why you experience leakage once you go back to lying down in bed. I discovered the coughing hard strategy by accident! Secondly, this... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Allergic reaction to Canasa?
ktakta
Jan Dollar Sulfite is not the same as sulfa. Sulfa is the antibiotic-like component that is in Azulfidine (sulfasalazine). Sulfa allergy is common. There is no sulfa in Rowasa or Canasa. However, regular Rowasa contains sulfites, which some people can be sensitive to, and it might increase bleeding. I looked up the Canasa prescribing information and the only ingredients are mesalamine and hard fat. Jan [ more ]
Sunflower70 Are you allergic to sulfa, by any chance? I think there might be some sulfite something or other in the canasa. (I know that there is in Rowasa enema and they make a version called Rowasa-SF (sulfite free) for people who are allergic or sensitive to it.) I'm not sure what other type of suppository you can use but you can get the hydrocortisone ones in a low dose and maybe that would do the trick. [ more ]
kta Thank you for your replies. Life has been far too busy and I have finally been back to check. I took the canasa for cuffitis. After the 2nd day, I knew something was up so quit the canasa. Fortunately, whatever was going on cleared up. If I catch cuffitis early enough, I usually only have to do a few days of treatment to calm it down. I will call my doc when I feel the cuffitis coming back on because I sure don't want the swelling thing in the mouth again. I was hoping there was an... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Food....give me more!
GoofeegutzGoofeegutz
Winterberry Hi, GooFeeGutz. If you love beans, make sure you chew very, very well. Beans have both soluable and insoluable fiber. The soluable fiber is the flesh inside the bean, which is great for thickening stool, and protein. The insoluable part is the skin of the bean (or the pea, lentil, chickpea, etc.). That insoluable part comes out the way it went in: It changes very little travelling through your digestive system. Google insoluable foods and you'll see lists. My doctor advised to go slowly at... [ more ]
Former Member Honestly, just try whatever you fancy and go from there! I was given that advice when I had my reversal. Though, I left it a few months after my ileostomy reversal to try eating salads- started off with small amounts of it. Funny thing- I did the worst thing ever last month and had small salads for lunch (Yes, i did know that salads aren't the best food to have with a jpouch, but wanted to be healthy and try to lose weight...), long story short, after the 4th day I felt so run down and worse... [ more ]
CTB23 Also coffee bothers me, so I drink decaf or chai tea. If I am going out to eat, I may take an Immodium, just in case. Also taking Pepto-bismol with dinner and 2 Immodium before bed. Other than that, no issues so far with foods. [ more ]
See all 8 replies...
J-Pouch ForumsWomen's Health & Pregnancy
In pain. Advice, stories needed.
KaterinaKaterina
Katerina Thanks Sharon. My doctor said to take regular pain killers and see how it goes! Xx [ more ]
skn69 Hi Katerina, Yes, my periods got worse post-op, sometimes disappearing for up to 6 months with what I called 'dry periods' meaning that I had all of the pain, cramping and bloating but no period coming at all...but after a while 3-9 months they came back. That does not mean that I was not in pain once I got them...much worse than pre-pouch. I did not really suffer from my periods too much before my pouch but once I got it it was hell...a very, very heavy feeling low down in my abdomen, like... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Kaiser j-pouch surgeons?
I ian337
Goofeegutz Hi @ian337 I had my j pouch surgery with kaiser. my kaiser surgeon Dr. Tam is awesome. He is at riverside kaiser don't know if your close to there. I am just a month post op from my j pouch. [ more ]
ian337 Great suggestion Jan. I'm sure my local GI knows at least one. [ more ]
Jan Dollar I'm in Norcal Kaiser, so can't help you there. But, if I were you, I'd get the list of Socal Kaiser GIs and colorectal surgeons and ask your current docs for suggestions. Jan [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Gluten Free Diet - Helped Pouchitis!
S Sweetie1234
Momaioneil Not on any Meds at ALL and have been thru the absolute ringer with top consultants just wondering does coeliacs cause burning usually [ more ]
AllyKat It hurt, was it burning. Just don't remember but everyone interprets pain differently. Maybe you need to go to a teaching hospital where they see a lot of unusual stuff. Good luck I hope you sort this out. [ more ]
JLa ❤️
See all 15 replies...
J-Pouch ForumsGeneral Discussion
Gluten free after 30 years with jpouch
FM Former Member
Momaioneil Hi Everyone! I know this is an old topic, but i want to see if ANYONE has the same experience as me. I had my jpouch surgery 13 years ago and thought having diarrhoea all the time and FOUL (and I mean FOUL as in, could have been a DEAD RAT inside me) smelling stools was completely normal for people with Jpouch procedure... I always had bad gas which was worse or better, depending on what I ate... Then 2 years ago I got a bad kidney infection and developed burning pain around my kidney area... [ more ]
suebear Gluten is not bad for the vast majority of people! Those that are celiac, intolerant, or sensitive to gluten should avoid it. The rest of us can continue to eat it with no worries. Sue [ more ]
vanessavy Gluten is so bad for you anyway. I follow a Paleo diet for the most part. I also make protein muffins, etc. All grain and gluten free. There are a lot of paleo recipes out there to check out. I am cutting out dairy slowly. I formed food allergy to milk products and eggs are to heavy for me. [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
Post partial blockage question
Y yellafella37
Kara Fred Christine- thank you for your post. When I had my J-Pouch, Dr. Shen was the doctor to see. He is wonderful and I -like you- recommend him for any J-Poucher. Unfortunately my J-Pouch was failing, so I opted for a K-Pouch and I love it. I also appreciate the advice on a FODMAP diet. Although I have been lucky enough (thus far) to not suffer from obstructions or pouchitis, I keep the FODMAP in the back of my mind. Good to know it helped you. All the best-Kara [ more ]
christine m I've been having partial obstructions a few times a year for about 3 years. Had my surgeries in 1995/1996. I went to see Dr. Bo Shen at the Cleveland Clinic in June. I will never go anywhere else again! He is a GI who specializes in the J-Pouch. Every patient I met there had the same system as I do, which is highly unusual, as you all know. He did a pouchoscopy and did go all the way through the stoma area. If they identify strictures, they can "balloon" them during the pouchoscopy. He is an... [ more ]
Joanm I have to ask yellafella37, how do you know that you are having a blockage or have had a few of them since your surgery since you have rarely been back to a doctor? I am just wondering exactly what your symptoms are. I am wondering if perhaps I might be having blockages occur but don't know. The pain and bloating starts shortly after eating and then the bloating becomes extremely localized to the area where my stoma was. It is almost as if I have a golf ball inside of me moving around up and... [ more ]
See all 12 replies...
J-Pouch ForumsGeneral Discussion
Other -itis problems associated with UC
L luvmyupsman
ehbraun ❤️
Lesandiego Love your terminology of "other-itis"... ha ha I'm going to use this to explain away any and all future symptoms! So far... so good and I have not had any complications in over a year (except my once a year mouth sores). [ more ]
ytcrockpot I used to have sore throats, doctors couldn't figure out either until I found the one. Turned out to be throyditis. [ more ]
See all 9 replies...
J-Pouch ForumsOstomy & Skin
Does one ever change a bag without changing wafer?
B Badplumbing
RDSmith Hi BadPlumbing I used to use a wafer, because that was how I was taught. My stoma has an aperture which release output directly onto the skin, so I need to get the opening of the bag as close as I can to under that point, to minimise tracking under the adhesive part of the bag. My stoma nurse then recommended that I stop using a wafer, because that is just another layer that raises the opening of the bag away from the aperture. Since I did this, my skin irritations have reduced dramatically,... [ more ]
Starry01 I tried this bc my bag ended up with a little hole and was leaking. It was a mess for me. So I suspect it does take practice. I thought (later) about laying down on my back if I ever have to do it again. [ more ]
Nicole23 I have, after a shower when planning on going somewhere. It makes me feel more cleaner and I can tell my bag doesn't smell as bad. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Cuffitis
JesseP22JesseP22
Scott F Another biologic may well be worth trying. I think you know it's a long shot, though. Dr. Remzi has recently relocated from the Cleveland Clinic to New York City. If I needed a pouch advancement I think I'd be talking to him. [ more ]
JesseP22 I've been in contact with both my surgeon and GI from Mt. Sinai in Manhattan. We are trying to avoid surgery at all costs. We may try entyvio but if that doesn't work I think surgery is necessary. I know my surgeon is very good but I would like someone who does this surgery more than anyone else. Thanks Scott [ more ]
Scott F Jesse, you're telling a story that usually requires pouch advancement surgery (with mucosectomy) to resolve. I'm sorry - I wish I had something easier to suggest. This is a raw deal. Has your GI told you he's run out of non-surgical approaches? Are you seeing a GI rather than a surgeon now? if you decide to have the surgical treatment, it's important to select a surgeon that has done many of these procedures. It's a hand-sewn technique that requires plenty of skill and experience. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
fish oil/omega 3 fatty acids help pouchitis?
kangaroo womankangaroo woman
Jersey Shore Alison, I am 31 years with my J-Pouch and I also need a hip replacement. I have not incorporated Omega's or Tumeric but I am beginning to experiment with them. Best of luck with the hip and your pouch. Probiotics help me but VSL#3 was not helpful. If you would like to email me further you can reach me: michaelshore12@gmail.com . Best of Luck! Sincerely, Michael [ more ]
kangaroo woman Thank you so very much for your kind words. I ordered the turmeric chews from GNC. I still have inflammation from the hip surgery, so I am open to anything that will help that as well. Thanks again. Alison [ more ]
Spooky Kangaroo Woman, What a trying time! I wish you all the best in your recovery. One thing I forgot to mention is that turmeric is thought to have anti-inflammatory properties as well and is quite often used for joint pain as well as general inflammation. I think it has helped me a lot. You may want to consider it. [ more ]
See all 10 replies...
J-Pouch ForumsHelp! Need advice now!
Bit of a pickle
P Pufferfish
Scott F VSL disappears in yogurt. I take it that way twice daily (for a total of four double-strength sachets). For me that dose works better than a lower dose. [ more ]
Pufferfish He he! I'm definitely going to take your advice there... especially as I've been asked to have a pouchoscopy now. I remember that before takedown and went (stupidly) drug free. Never again. Im hoping to get the pouchoscopy done in a couple of weeks. Could have been done sooner but as I have to travel up to London and it's my children's half term holidays coming up, I need to be around. Nowt worse than taking a 4yr old and 13yr old to the Big Smoke to spend the majority of the day at a... [ more ]
Winterberry Hi, Pufferfish. If pouchogram or any type of invasive / internal exam makes you nervous, anxious, and tense your muscles, it will hurt a lot. Tell them well in advance and ask if you can have a mild tranquilizer. When I have an endoscopy, I ask for a drug and they give it to me. They want you to have the test and anything helpful that will facilitate that, they will do. Sometimes they give me a tablet called Ativan to take with water 20 minutes before I get in the table. I am completely out... [ more ]
See all 14 replies...
J-Pouch ForumsHelp! Need advice now!
still struggling
J jegjpouch
ssami I think its just the normal post surgery thing i also felt the same way for 8 to 10 days after my final surgery and once i started having my meal properly slowly the frequency decreases. So i guess its just the normal thing so don't get panic just see for 2 to 3 more days and still you dont find improvement you can talk to ur doctor. [ more ]
Former Member A few hours after my takedown, I also developed the sensation to continually empty my pouch, no sooner had I'd finished, I need to go again, not quite the same urgency I'd experienced during a UC flare up but definately the need to get back and go again but there was nothing there to empty, although I was certain I wasn't emptying. There was no pain or discomfort, just the sensation to push and open my bowels, although, gradually it became more and more painful, excruciatingly; so much so, I... [ more ]
John Curtain I take a good bacteria capsule once a day. I think it helps with getting rid of gas which in turn helps with clearing out generally. Its available over the counter and I presume would have no adverse side effects so it may be well worth a try. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
How to Get Your GI Doc to Let You Try an Antifungal
KQ Kevin Q
Kevin Q My GI doc just called and I told him I was still having mid-abdominal pain and nausea. While we wait for my h. pylori test results, he wants me to take Prilosec to see if that will help. I've had C. diff before, and noticed a past post where it was discussed whether Prilosec makes one more susceptible to C. Diff. I already take VSL #3, but I was planning on getting some Florastor (s. boulardii) to hopefully prevent me from getting C. diff again. [ more ]
Kevin Q I went home for lunch today and had a sandwich and took some VSL #3. I immediately got very nauseous and got the sensation like my pouch was "sweating," where my rectum kept getting very damp. It wasn't incontinence. It was literally like it was sweating, like it was damp with clear water. I also had to keep urinating. This has happened in the past, and I have no idea what this means. Has anyone else ever had a similar experience, or can provide a guess as to what kind of reaction that is? I... [ more ]
Kevin Q Will do. I will say, the abdominal pain kind of feels like when I had colitis, making me wonder if it's Crohn's. I tried Ramicade for a long time when I had colitis and it never worked, but I've never tried another biologic, such as Humira. I will definitely keep that in the back of my head. The pain feels very localized (center of my abdomen 2 inches above my navel) so would be interested to see what a scope revealed. [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
Paleo pouchers...
thumprharethumprhare
skn69 Hi Patty, So sorry for taking so long to get back to you, hopefully, you will read this and find some answers to your questions. The book that I read was called 'Fit for Life' and it was written by a couple (now divorced but not due to the diet) name Diamond. The principals were very much what I outlined above. Vegetables are neutrals, so are fats (butter, oil...) and some other neutrals like lemon juice, vinegar etc... They can be eaten with either proteins or carbs. Proteins are basically... [ more ]
Tom T ❤️
Fight like a girl Hi Sharon...years ago I read an article about dissociating food groups, but I forgot the name and who wrote it. I do remember it being very interesting to me and then life got crazy and I never followed through. Now it appears I am definetly having some issues. Some of my friends are sending me stuff on leaky gut syndrome and paleo diet. But then I saw your post and was reminded of what I read about food groups. Do you have any info or writings that I can search up and I am thinking I need... [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
Florastor probiotic?
WinterberryWinterberry
Winterberry Hello, Jan and Joe. It must have been a blip because it happened only twice consecutively where I could not pass urine at all, and now I'm okay. I'm not on antihistamines or decongestants or any other meds, except Cipro for another few days. The thought of a bladder infection and that kind of intense pain on top of pouchitis frequency was too much! Maybe it was a reminder never to wait too long between urinating, never hold it for so long. Cipro has helped 100% with pouchitis and it's like I... [ more ]
Jan Dollar Urinary retention is not a known side effect of Cipro. A full pouch should not prevent your bladder from emptying either. If anything, it should cause more urgency. Are you taking antihistamines or decongestants? They can contribute to this. Most likely it is just a temporary blip. https://www.niddk.nih.gov/heal...ion/Pages/facts.aspx Jan [ more ]
JoVic Yes I can east pretty much anything if I take psyllium husk with the meal. I do stay away from sausage and lots of nuts. That's a sure ticket to a blockage for me! I also get into trouble if I start to skip meals. I get the same taste in my mouth from Flagyl and I think I recently had an allergic reaction to Levaquin. I ended up with what looked like chemical burns all over my feet. Feel better!!! [ more ]
See all 7 replies...
J-Pouch ForumsHelp! Need advice now!
Unable to go, cramps, blood
M MRD
MRD Oops, pouch advancement is what he said. I was a little anesthetized still and couldn't remember the term. I'll look around and see if I can find threads about it on here. Thanks Scott! [ more ]
Scott F This is generally called "pouch advancement" surgery. There are a number of folks here who've had it, and I'll leave it to them to describe their experiences. FWIW, now that you have a proper diagnosis, perhaps medical treatment focused on your cuffitis might work well enough to avoid further surgery. [ more ]
Terradon ❤️
See all 11 replies...
J-Pouch ForumsHelp! Need advice now!
3RD SURGERY TO COMPLETE TAKE DOWN
D DEE2015
Winterberry Hello, Dee. Just as you did with your first surgeries, remember to get up as soon as possible and walk the hallways to get your system working. Drink as much water and fluids as you can. Your first time to the bathroom will be dark green bile until you are allowed to have solid food. After that it will probably be loose and fragmented until your system gets used to its new life in a couple of weeks or months. You will have gas pain as air moves through your bowels, and it will hurt, there is... [ more ]
Former Member If you've already had your bowel removed and a J pouch created, then the worse is over. [ more ]
DEE2015 MY WHOLE POST DIDN'T SHOW. I AM HAVING THE LAST SURGERY FOR THE TAKE DOWN. [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Just had takedown, feels like UC again.
Becky18Becky18
Scott F Becky, you haven't mentioned pain, so I'm thinking anal fissures don't sound so likely. On day 5 it's hard to be sure of anything. Please don't strain if you can possibly help it, and know that it takes a while to adapt to your new plumbing. Gently experiment its what seems to work (and discover what doesn't). Good luck! [ more ]
Former Member No it's not normal. I experienced the very same; felt like I'd not completely emptied and had the weird sensation of wanting to push, like there was something up there. I eventually discovered that during my takedown surgery; what remains of the anal canal was dilated and such a procedure created tiny cracks/tears in the skin, commonly known as fissures. Which, I guess, is similar to a paper cut and during a bowel movement, the bile acid passing over a fissure is equivlent of lemon juice in... [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Suddenly huge amount of blood
E ElSur
Jan Dollar Upper GI isdues are extremely common. Gastritis, ulcers, you name it. You can have bleeding without much in the way of other symptoms. But, if you don't consider an upper GI problem, you won't find one. Jan [ more ]
ElSur I'm not sure. Two of the three times I had this problem I definitely only got scoped in the pouch area. The other time I'm not exactly sure as I don't remember what kind of examination I got, but if I had to guess I'd say it's been pouch only as well. So yeah, upper GI bleeding can't be ruled out I guess, although I have no idea why there should be any kind of problem that can cause this symptoms. [ more ]
Jan Dollar Were you just scoped in your j-pouch, or upper GI too? With the black stool and bright red bleeding, I would be suspicious of an upper GI bleed. Sometimes we assume everything is the j-pouch and ignore other possibilities. Jan [ more ]
See all 13 replies...
J-Pouch ForumsMen's Health
Retrograde Ejaculation
B bwils
F-TOY-120 Wow, congratulations Maxx, I cry every day cause I can't have child, I won't know what going to my kids recital, or ballgame. You are are very lucky, I wrote something in the women's health if you want to see. I had my take down surgery when I was 14 and now I am 41. I was robbed of children and performance. Google sex and the jpouch. It may explain better. [ more ]
TCM Maxx, congratulations! [ more ]
Maxx Hey I just wanted to let everyone know that, I had the same problem post take down for months. I had erection, was able to perform but nothing was coming out. But after 6 months or so the condition improved little bit and after a year or so, it is now restored. Only difference now is that the semen is now too thick than what it used to be. But I don't worry about it because we are expecting a baby soon! [ more ]
See all 10 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Please share with me your experience re: sex after a j pouch
M MaryMomof3
jruggieri15 ❤️
F-TOY-120 If you google sex and the jpouch it will tell you in medical terminology. This surgery doesn't really affect a female performance. A male on the other hand is a total different story. I have been rob sexual performance and children when I had my take down surgery in 1988 when I was 12. Not realizing my sexual performance had anything to do with my jpouch and not being able to have kids wasn't until about 3 years or so ago. Sometimes I can have a marathon session or 2 pumps and a dump. The... [ more ]
Mysticobra The last sentence says it all. I am a male and may not imagine how it would be to be female and go through this. But either or we need someone who loves and understands. I was very lucky? I love my wife and she love me. We both have gone through so much. I personally could have never done any of this pre and post surgery without her. An understanding partner is most important when it come to being intimate. Male or female. Richard. [ more ]
See all 16 replies...
J-Pouch ForumsPouchitis
entocort?
M mgiamartino
blpblm Thank you for the positive news! I am seeing minimal improvement in two days but it is improvement. Will give it a bit more time. I haven't tried Imuran yet. Thanks again. [ more ]
JJA Worked fast for me-could see improvements within a couple days. Good luck. I think in recent years they have been doing trials of using entocort as a long term treatment for UC vs a short term. If they saw positive results, may be an option for long term use with pouchitis. I moved on from Entocort to Immuran and although entocort was very helpful, I am doing even better on Immuran. [ more ]
Anushka ❤️
See all 12 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

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.
×