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J-Pouch ForumsGeneral Discussion
Photo Albums
runner4449runner4449
runner4449 Thanks. I think I'll just hold on to them instead of putting them in a blog in case anyone ever asks to see those type of pictures. Take care! [ more ]
suebear I don't think this site has the bandwidth to support a photo album. Perhaps you can start a blog and provide a link in your signature? Sue [ more ]
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J-Pouch ForumsGeneral Discussion
Blending vegetables:Am I eating (drinking) too much fiber??
Mark JMark J
dew Soluble fiber yes, insoluble fiber no. [ more ]
Mark J Thanks for the replies guys. I'll probably start straining some of the fiber out. It seems like fiber would help with watery bm's but I guess too much will also have an adverse effect. Tom my takedown was in 07 [ more ]
skn69 It could be a little too much for now, try deviding 1 smootie into 2 and see if reducing the dosage helps..bean sprouts can be very gassy and so can the mix of veggies...you just have to play with it and measure your results. Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
Iron Infusions
MicheleRMicheleR
mgmt10 Oh my gosh...so sorry you went thru that! How scary. I am finishing up today a series of 8 iron infusions. Never had any test before hand. Luckily all the infusions went well and I feel a million times better. Hope you can get something figured out to help you. Thanks for letting us know. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
J-Pouch and the vagina
fqfq
fq thank you very much! i am hoping it will heal on its own as my doctor thinks it can. also appreciate the exercise tips, which i will try once i'm healed more. Roberta, did you do anything to help with the healing, or it just occurred naturally / with time? ~ [ more ]
RLC fq I had the symptoms of air or gas passing through the vagina (no feces). I told this to the surgeon at the time and I asked him if this could be a fistula. He said that feces would be emptying out, too. Well, I had it for a couple of months (especially if the j pouch was full and at night while laying down). I believe I had a small hole but that it has healed on its own. I did not do any physical activity while healing. I am 5 months out now. I hope this helps. Roberta [ more ]
skn69 Yes. FQ...it all moves, shifts, swells and weakens down there post op...they tend to tell us to do kiegels, pelvic lifts, mild squats (you squat down til your plams touch the floor and then tighten everything down there)...but...and here is the big but...you may want to wait a while before doing anything 'violent' or too strenuous until you are healed more..the kiegels are the only things that are suggested for the first year..your body is still healing and you shouldn't overdo it...the best... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Can someone explain what this means?
S Solomin
liz11 solomin.. good luck on monday. and keep in mind the possibility of a temporary diverting ileostomy. I mentioned that to you many months back when you initially posted about your difficulties in getting a surgeon. Also as a reminder, the "technical" expertise required to just disconnect the jpouch and give you a diverting ileostomy is not near as great as what is needed for a pouch redo or pouch excision. It may be way for you to get an improved quality of life, and buy time to get the proper... [ more ]
Solomin As luck would have it, I took some time to really think about my situation, and I decided to contact the medical doctors (GI and Surgeon) for whom I was a patient 30 years ago. I sent an email to the former head of the GI department at the Montreal Ste Justine's Hospital (French children's hospital) when I was a patient there 1979-1985. At the time he took excellent care of me. He is by far the best doctor I ever had in my life in all aspects. Of course he remembered me (who could forget me? [ more ]
ActiveUC'er I am way out of my league in terms of knowing about this area (just had my colectomy). But is it possible for you to get a diverting loop ileo until the qualified surgeon can get to you? [ more ]
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J-Pouch ForumsGeneral Discussion
CC update
A akteacher
ActiveUC'er Thanks. It definitely doesn't feel nice, but it seems to be responding to the shots! [ more ]
liz11 jeane have you ever had a defecogram? makes me wonder when you say about emptying your pouch not all the way. and active...sorry to hear about they pyroderma. think those steroid shots must be tough with that. good luck [ more ]
ActiveUC'er And I'll miss you guys by like four days. I have an appt. on the 2nd (steroid shots for my pyoderma). Good luck to both of you! [ more ]
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J-Pouch ForumsGeneral Discussion
normal to cry every night?
G Guest
Rocket I have had my J-Pouch since 1994 and I too have days and nights where I don't sleep very well, similar to you. Every night I get up once to use the bathroom. When the alarm rings to go to work, I have to use the bathroom again. Then shower and eat a light breakfast then use the bathroom again before I leave for work. Prior to going to lunch, I use the bathroom again. After lunch, I use the bathroom 2 more times, the last before I leave to go home. I arrive home, I use the bathroom again, eat... [ more ]
fq Honesty, I'm going to go out on a limb here... You're single right? Nothin' wrong with that. Butttt, to give you a bit of unsolicited advice: if you are interested in attracting a male or female (whatever floats your boat), and keeping that male or female as a friend or otherwise, being a downer 110% of the time is totally UN-sexy, man!! I mean we all have our ups and downs, highs and lows, but people who are CONstantly miserable and whiny and want to drag everyone else down into suffering... [ more ]
RLC chasingtime I am 5-1/2 months out from takedown and you will give it time. That is what you need, right now. Some bodies adjust faster than others. Mine is still adjusting but I am getting out more. I would venture out a little during the day but my nights were terrible like yours. I am still waking up 2 times a night but the pain isn't as bad. The j pouch has to stretch and I think that is the problem for us. Be patient that is all we can do, for now. There is light at the end of this dark... [ more ]
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J-Pouch ForumsHelp! Need advice now!
confused somewhat after visit to dr.shen
R Rebe0505
Rebe0505 jeane ,yes we may very well be facing similar issues and we have conferred before on thread but i wrote you another thread and said do not go for any operations until you see maybe shen at c.c or mayo clinic..we both are on antibiotics all the time..i have to rotate was on augmentin like you the longest but i am back to rotating..it went very bad after 7 months with augmentin ..rotating another antibiotic for most part control my most difficult symptoms..i live with the rest but they are not... [ more ]
jeane You are undergoing the exact same issue I am in..pouchitis and taking antibiotics continually and cuffitis in cuff. My surgeon believes the cuffitis is causing all my issues and the pouchitis in my distal cuff and is really secondary to my cuffitis. He is recommmending pouch advancement surgery with mucosectomy as I have been on rectal meds for over a year with some symptom relief but once I stop them, the cuffitis flares again. Are you being treated for the cuffitis? Have you had these... [ more ]
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J-Pouch ForumsGeneral Discussion
levsin medicine
G grandmaof1
vanessavy I took it and Bentyl for months. I don't need them anymore unless my small bowl is moving around to much. Levsin I had far less side effects than Bentyl. But after taking Bentyl for a week I had no side effects. [ more ]
cassiecass Evening' everyone is different when it comes to taking any medications. I have taken both levsin and levebid for years.I was recently prescribed it by my new gastro md..For me THANK YOU LEVSIN Cassiecass [ more ]
CTBarrister I never took levsin until I had a J Pouch and was diagnosed with "spasmodic pouch" or excessive motility shortly after take down. It's an anti-spasmodic. It really helped me with the motility issue although I had side effects which consisted of feeling very loopy and lightheaded. Donnatal is a similar drug that has less side effects IMHO. I can't recall if it was levsin, bentyl or both that I placed under my tongue and allowed to dissolve. I haven't taken it in almost 20 years so I can't recall. [ more ]
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J-Pouch ForumsK-Pouch Korner
Stones
D dpol
marz ❤️
kaydbird My stones were sent to the lab and were 90% calcium. but drs said no evidence to suggest dietary changes would prevent them from happening, and I have to take calcium (I eat the chocolate chews) because of osteopenia.... For some people they are pills though. I had heard that before though so all my vitamins are chewables just in case! [ more ]
skn69 I'd love to know what they are and where they come from...could they be remnants of some undigested pills or mineral accumulations from foods we eat? Bile? Very strange. If you ever find out, please let us know. By the way, have they grown or do they stay the same size? Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
Iron supplements
Luton MattLuton Matt
Spooky I currently take Life brand ferrous fumerate (generic brand, coated for stomach protection). I was previously taking slow Fe and palafer but those were causing me problems in that I had some upper GI discomfort shortly after taking them. Now, I take my iron at bedtime, as suggested by the pharmacist, and I don't really notice any digestive problems, except for the fact that it quite often turns my stool jet black, which is usually noticeable on my first BM the next morning. [ more ]
dew I've been preaching about this type of iron for ages. Do not take the crap you get from the pharmacy. http://www.albionferrochel.com/ [ more ]
Luton Matt Liquid iron, Okay thanks Suebear. Anything to stop the vicious circle of anaemia vs inflammation! [ more ]
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J-Pouch ForumsGeneral Discussion
Taking steps backward in recovery
fqfq
MarkGregory Have tried self dilation to open things up, or even enemas to help flush things out? I use one of those disposable enema bottles, wash, and refill with tapwater after use. Squeeze entire bottle into pouch, hold it for a little while, and eventually you will get cramping like you need to push, and wala, it is like jet propulsion elimination. [ more ]
RLC fq - I am so with you! I hear your frustration and I am right with you. Everyone here on these posts say "hang in there" so that is what we have to do! Our bodies are not our own and we are not in control! That is what I have found throughout all of this. Remember science is guess and test and we have to just keep guessing and testing! All these suggestions help me out a great deal so I just keep reading and doing what I can! Roberta [ more ]
fq great suggestions...thanks everyone! to be honest i am rather exhausted. i know i need to keep learning and experimenting and trying new things (again....and then AGAIN later in case it didn't work the first time), but i just want to eat and live freely, without thinking about it, or planning around it, or modifying it!!! Not possible with a j-pouch ???? Am I asking for too much ???? i tried metamucil a month ago and found that it irritated and caused more stools, but i think it is a good... [ more ]
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J-Pouch ForumsGeneral Discussion
Hi!
magic30magic30
RLC Magic you are an inspiration to all of us! Congrats! runner4449 keep up the good work! Roberta [ more ]
runner4449 Congratulations! I'm a runner and did 8 marathons before my surgeries this year. I just had my take-down surgery last week, and the surgeon asked me the day after surgery if I had scheduled my next marathon yet. I told him I was going to do the Air Force Marathon in September. He said, "Perfect. We'll be close enough to a year out, we'll do a scope to make sure the pouch still looks good, and I'll run it with you." How cool is my surgeon? Anyhow, hope to join the pre and post colon marathon... [ more ]
JeffDC Way to go, magic. [ more ]
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J-Pouch ForumsGeneral Discussion
ileostomy injury
I itsnotsherry
skn69 itsnotsherry, Just to reassure you, I have had 2 major abdominal traumas in the last 30yrs...first I was run over on a cross walk (yup, I have the darndest luck!)...the guy was going the wrong way on a one way street and hit my right hip( stoma side) and projected me into an oncoming car. My hips took it badly, my stoma did not react. Second time I was agressed in my own apt and they slammed the door numerous times on my abdomen (I was half in/half out the door) and then punched me in the... [ more ]
Blake D. My 3 year old son jumped square on my ileostomy when I had one before takedown. I was scared that I was injured, but nothing happened and I was fine. I imagine if you fall you're probably most likely to injure your wrists or arms so either way, your workplace shouldn't have wires at ankle level anyway. Fall over it and sue the crap out of them, haha! [ more ]
Jan Dollar To be honest, I don't think your stoma is at any greater risk than any other part of your abdomen during a fall. It is all soft belly, and susceptible to blunt trauma. If your stoma actually made you more likely to fall, that might be a factor, but obviously, it is not. If you go up the ladder in reporting and continue to be dismissed, you can file a complaint with your local OSHA office, or online. They will inspect for safety violations, and force correction if needed. Your employer cannot... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Fatigue, canker sores, and irritable
J Jpoucher4life
Spooky I also had quite extensive alpothous ulcers and was prescribed a mouth rinse which consisted of benadryl, cortisone, an antifungal and an antibiotic. It was in some type of thick base, perhaps maalox as ActiveUC'er mentions. I had dealt with the painful ulcers for weeks and was very limited in what I could eat due to pain, but within a couple of days of using the rinse my mouth was almost entirely cleared up. [ more ]
runner4449 When I ended up hospitalized because of UC, and then ultimately had my first surgery during that stay (month long), I developed countless canker sores. I can empathize with how horrible they are. It's unbelievable how many can develop all throughout the mouth and throat. I can't remember if the hospital gave it to me, or if my husband bought it, but I used a product called HurriCaine that really helped. It's 20% benzocaine oral anesthetic (topical which I applied with long q-tips). I... [ more ]
ActiveUC'er If the sores are really bad, I recommend a "magic mouthwash" prescription - the combo I had for alpothous ulcers was lidocaine, maalox, and benedryl. I literally had 50 ulcers and that mouthwash made it so I could eat. Magic mouthwash is kind of a generic for alot of potential mouthwashes ( as it has lots of potential ingredients for treating thrush, bacterial infections, etc.), but you are aiming for pain relief. The pain relief doesnt' last forever but it is sooo nice to have some time... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Cramping & vaginal spotting in early pregnancy??
FM Former Member
Kate1026 Mild cramping at the beginning is normal in any pregnancy, although I know it's still scary- I've been there! It's also normal for people who've had major surgeries to have more pain during pregnancy as all that scar tissue stretches. My worst was around 10-12 weeks. Congratulations and good luck! [ more ]
Former Member Thank you so much to both of you for your notes, I went to my GP this morning and she has said that my tummy is definitely tender but too early to really check inside. I didn't finch or jump when she was poking and prodding so she wasn't too concerned. I am going to have a dating ultrasound in 10 days (I will be 7 weeks by then) and she has said just to keep watch and call her if I notice any changes in pain or increased spotting or if I notice any blood. I am going to try to stay positive... [ more ]
Clicky I know its scary, and I hope your doctor can reassure you. I had a lot of spotting in the first trimester (pink, red, brown) and pains, particularly before I emptied. I was so scared the whole time but now am 26 weeks and things are still going and no more spotting. Definitely agree re the keeping hydrated part - that helps. Good luck and congratulations ! [ more ]
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J-Pouch ForumsPouchitis
Fistula and cuffitis
Y YES
jeane Keep us posted as to you you make out Sally. Hope you feel better also. [ more ]
SallyJPouch I just took two weeks of Rowasa enemas, now they started antibiotics. Anyway, I hope you feel better. Bye. [ more ]
jeane Sally don't get nervous...get the rectal meds..they should help you. Mine are now starting to work. I have been home for 9 years. I used to be a computer software developer. [ more ]
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J-Pouch ForumsHelp! Need advice now!
diltiazem 2%
KelseyHey2308KelseyHey2308
KelseyHey2308 Thanks so much! Yeah I've been more rigid this time with the cream than I have any other time I've had a fissure. Usually I'd use the cream until my bothersome symptoms went away. But this time I want it gone for good! It's painful, especially when I have gas, then it can spasm sometimes. I do sitz baths as well, trying to do at least two a day, but it's hard to fit it in on school days! I saw on other websites a lot of people take stool softeners, but there are obvious reasons I'm... [ more ]
vstRN I have been using it and it has definitely provided a lot of relief but I still have issues with this fissure. They are the worst! I'll admit though that I have not always been consistent using the cream. I dread it since it causes some intense itching (I don't think everyone has this problem though). I'm thinking about botox at this point. [ more ]
beckysmom Yes, My daughter used it years ago for a fissure and it helped then. More recently she tried it again after surgery in May and she said it didn't help, but this time she didn't have a fissure. Hope it works for you! I had to go to a compounding pharmacy for it. [ more ]
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J-Pouch ForumsGeneral Discussion
j-pouch vs direct connect
G Guest
fq they are "hollowed out"; there isn't a wall in-between. like this: you have a 10 foot hose and make a vertical slice from one end of the hose just up to the 3 foot mark. you then take the sliced portion, fold it over back on itself and sew it, so it now is like a baggie. Or like this: you take your left sweater sleeve, slice it lengthwise from the elbow to the hand. Do the same thing on the right side. Now sew the left open part to the right open part. not sure if that even made any sense! [ more ]
Guest are our j-pouchs hollowed out as one double wide small intestines or are they folded and sewn that way leaving a wall in between? hope that makes sense. [ more ]
Guest are our j-pouchs hollowed out as one double wide small intestines or are they folded and sewn that way leaving a wall in between? hope that makes sense. [ more ]
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J-Pouch ForumsGeneral Discussion
what help did you need after surgery?
D Danita
Spooky Everyone's recovery is different, so you should plan to have somebody available for at least the first few days that you're home. It also depends on your physical state going into surgery. I had a difficult recovery after my Step 1, but I was critically ill going in, almost died from UC, so I wasn't in very good physical shape to start with. I wasn't very mobile, needed standby assistance for bathing because I was a fall risk, and basically needed somebody around at all times. I also had... [ more ]
Danita Thanks everyone for the replies! It's very helpful to see the wide range of individual needs and recovery trajectories. I guess I'll just have to see how it goes for me, but it's good to know what possibilities to be prepared for. [ more ]
fq i was VERY sick after surgery. needed help with meals, household chores (dishes, laundry, shopping, cleaning), even walking around the block, cuz i got dizzy and nearly passed out. needed help driving for the first few weeks, and also it was nice to have family members accompany me to follow up dr. visits. [ more ]
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J-Pouch ForumsGeneral Discussion
What's going on?
KPKP
liz11 watch out for sugar. And beans... maybe you want to cut those out for awhile and see what happens. good luck. [ more ]
KP I was put on Hyomax (Hyoscyamine) to help with motility and to stop the yellow bile BMs. It worked great for 2 days. I was able to sleep and work in the way that I wish I could every day. Then I ate 3 bean and cheese breakfast burritos and it seems like that ruined everything. It's been 2 weeks since eating the burritos and I'm not passing yellow bile anymore, but my frequency has increased to 15 to 25 BMs a day. I have way more gas now than I did before and I'm not sure what to blame. My... [ more ]
KP I do need to keep a food diary. I guess you include what you eat and how your stools are? That shouldn't be too hard. I did just receive results on a food intolerance test. I have a lot of intolerances, including a severe intolerance to chicken. Not sure about its validity, but I am trying to avoid the 100's of foods it said to. Anyone ever heard of or taken the ALCAT? Is it for real? Donnatal - I will have to remember that. Thanks you guys! I appreciate the info! [ more ]
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J-Pouch ForumsGeneral Discussion
Update on Paleo diet
John95John95
John95 Have to eat poorly to provoke an immune reaction for the blood test! Anything to rationalize it haha [ more ]
skn69 Pumpkin pie and coconut pie with cool whip for breakfast????? I would be in pain too...shhhhhsh...that was just looking for trouble! (I do hope that you enjoyed it before it made you suffer!) Sharon [ more ]
John95 Haha you are absolutely right about sugar. I just had to take advantage and try the two pies I made for a party last weekend. I made the pumpkin pie from a real pumpkin, which tastes way better than pumpkin pie from canned pumpkin. Healthy grains? Isn't that an oxymoron? I know what you're saying though. I will force myself to eat some. They don't even appeal to me anymore. [ more ]
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J-Pouch ForumsGeneral Discussion
Abdominal Pain after Surgery
W Wishingwell
Jan Dollar Hopefully, you've seen the surgeon and something has been done, as this seems like an unresolved complication. As to why less surgery was done when the problems were worse than expected...that is because sometimes there are so many adhesions, it is dangerous to try to release them. Jan [ more ]
Subzeromambo Please see another doctor as soon as possible. Even good doctors make some bad decisions and a second opinion could be priceless. [ more ]
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J-Pouch ForumsGeneral Discussion
Crohns in J pouch
S sam01
CTBarrister That is the pouch outlet. My narrowing is at the pouch inlet, which is where stool enters the J Pouch from the ileum. It sounds like he could have cuffitis issues and you may want to discuss that with the Doc as well. [ more ]
sam01 thank you for your input. it's great to know you've been managing with it for quite some time. I am not sure what you mean pouch inlet or outlet. I know that the inflammation he has is at the narrowing where it connects to the rectum. he takes miralax and seems to be able to be able to go. I suspect the extra pushing doesn't help and he bleeds. he does not complain of pain and while he has Crohns symptoms, i'd say the meds are more of his issues. I will take your comments to the doc and ask... [ more ]
CTBarrister Not sure if you mean the pouch inlet or the pouch outlet. I have narrowing at the pouch inlet. I have had pouchitis for 17 years (treated with antibiotics) and inflammation above the pouch which is of uncertain etiology. Crohn's is suspected but the pattern of inflammation is unusual and they are not sure if the pattern does not reflect "fecal stasis", i.e., a pooling of the feces above the pouch inlet due to the severe narrowing of the bowel in that area. I am taking two meds traditionally... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Back Pain....
K KReid
skn69 I doubt that it is in your head but finding out where it really is, is the problem. Sometimes the galbaldder doesn't 'show' that it is blocked or is just very sludgy...there are some natural things that you can take to try and clear out the gallbladder and/or liver if it is not too serious (fumeterre for the galbladder and artichoke extract for the liver)...My Old GP was a natureopath and used those on my for years to keep things squeeky clean and pain free. Sharon [ more ]
KReid Thanks for the ideas! I've been worried that it might be my liver or gallbladder even though I have had those checked out thru blood and ultrasound. I also don't have any other symptoms. No issues with going to the bathroom, appetite fine, no vomiting or upset stomachs, etc. And the pain does seem to come and go. I mostly notice it when I'm sitting but I don't know if that's because I'm more focused on it or not. Eating doesn't seem to make a difference either way. I'm not sure if the blood... [ more ]
skn69 I am so sorry for the pain KReid, If I didn't know better I would have said galbladder but you said that that was checked out and cleared and so were the other organs. How is your motility? Have you timed your transit with different food groups? Could it be your small intestines? Does it come after meals or before or on an empty stomach? Is there a time of day when it is worse/better? Any specific triggers? Sleeping? Physical activity? Meds? Just some ideas? Sharon [ more ]
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J-Pouch ForumsPouchitis
PREBIOTICS not Probiotics
G grandmaof1
Rebe0505 rocket is there really a test for bacteria overgrowth.?wonder why shen did not mention it?wonder if i can get it here in santa barbara...will also talk to my son who had a serious intestinal problem..run away candida and leaky gut...he has to take probiotics and is very careful with his diet.. rebe [ more ]
Rebe0505 vanessavy..i just came back from visit with dr. shen..after three different exams in 4 years9this one just this past week) my pouch looks great no inflamation..we have always thought i have antibiotic dependent pouchitis however and have been on rotating antibiotics for four years..having to change them when they become ineffective.. this time around dr. shen mentioned he now thinks i might have bacterial overgrowth as you but he did not suggest i try lactolose instead he told me to try... [ more ]
AllyKat I believe that plain old honey s a pre biotic [ more ]
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J-Pouch ForumsGeneral Discussion
Takedown Scheduled Soon
S SandrineV
SandrineV I will look into bidet. Also,do you take any vitamin supplements. I heard you have to get b12 shots when u don't have a colon. I am not looking forward to a bland diet again. I hope I am able to eat most things. [ more ]
gleam Buy Gas-X. (silly autocorrect) [ more ]
gleam I was in for four days. I stopped taking pain meds in the hospital on day 2.5ish. Do not use baby wipes with witch hazel, that burns my butt. I have found that owning a bidet offsets the need for Calmoseptic ointment and wipes. It will save a lot of money in the long run. Be prepared for a lengthy stay of at least 4 days and then don't expect to want to do anything soon afterward. I still haven't left the house after two weeks, too much urgency. To help with the cramps/spasms/got to go... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Has anyone with a jpouch ever tried a shot called Sandostation or Octreotide?
FM Former Member
Jan Dollar I have not been on that medication(Sandostatin and octreotide are the same drug), but there have been a number of folks here who have, mostly for high output ileostomies. This recent abstract indicates that the success rate is not high, but if you have tried everything else, probably worth a shot. http://www.ncbi.nlm.nih.gov/pubmed/21951549 Jan [ more ]
Laurie49 I'm sure he is frustrated. I too, was very frustrated in the beginning. Honestly -- it took me a long time and alot of experimenting to come up with a diet that was good for me. I can assure you there IS alot that can be done in terms of his output. I don't know anything about either of these med's, but if you research them and feel comfortable, why not try them? Keep us posted as to the outcome. Good luck. [ more ]
Guest I believe it wouldn't be a bad idea to try all the suggestions here, they can't hurt. But with all I've been through there's not much you can do to defeat diarrhea. After living with a J Pouch for all these years, I can understand why your colon is so long now. [ more ]
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J-Pouch ForumsGeneral Discussion
Ongoing Anul Pressure
S Shannah
jeane Do you need to empty your pouch with the pain and pressure? I am not sure if this could just be normal healing or possibly cuffitis or pouchitis. Cuffitis gives me that pressure and pain in the anal area, but it is not dependent on standing or sitting and I do have to empty my pouch to get some relief. I know you are very early out so this could be healing and they may not want to look inside your pouch at this time, but they could view your cuff to see if you may be experiencing cuffitis. [ more ]
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J-Pouch ForumsGeneral Discussion
What is going on!!!!!
ManchesterManchester
Guest I understand where you're coming from Manchester. J Pouches can easily deprive you of sleep, which scientific studies have shown, will leave you depressed. That's just one of many reasons I'm unhappy now, especially with my J Pouch [ more ]
TE Marie Congratulations! If I'd wake up happy and energetic like you did I'd get on my knees and thank God. I've been wondering if I'm going to have to be on antidepressant and anxiety medications forever. I'm also in chronic pain and I take 30-40 lb hydrocodone a day. I'm going to quit worrying about getting "hooked" and get depressed every time I have to talk a pain pill. I'm glad you are doing so well! I only leave the house when I have to and then my husband drives me most of the time. I also... [ more ]
Jan Dollar I'd say you are one lucky dude that you are not a crumpled heap on the floor, going cold turkey like that!! Other than that, perhaps the chronic opiate use was affecting your mood stability. It happens. For most though, a steady diet tends to stabilize, not destabilize. But, we are each individuals with individual responses.... An [ more ]
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J-Pouch ForumsHelp! Need advice now!
j pouch surgery tomorrow!
stephalynndstephalynnd
TE Marie Good Luck! I was smiling all the way into the operating room. Please focus on the positive. When you wake up you will feel like you've been hit by a truck but that doesn't last too long. I'm still having some problems but am glad I've got the operations behind me. [ more ]
smartypants_013 Hi Steph, I see you are a GC girl! I grew up on the coast and moved to Brisbane a few years ago now. I am a very happy owner of a j pouch. I had my colectomy early last year and have been using my j pouch without issue for over 12 months. No one suspects I am any different to themselves unless they knew me during my UC days. I am more than happy to chat to you over the phone or by pm if you like, so funny how many Aussies find each other on the American boards. Best of luck tomorrow. [ more ]
stephalynnd ah thanks everyone for the positive words. makes me feel better. off to hospital tomorrow so it's pretty much out of my hands unless i do a runner LOL. thanks again and im sure i will be back with heaps of questions during recover about all sorts of butt issues! x [ more ]
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J-Pouch ForumsGeneral Discussion
Need to wait for takedown :(
J JessGoguen
SandrineV I have my takedown scheduled this week and I can't wait. However, I have learned to deal with the ileostomy. I was having alot of leaks and was getting extremely frustrated with it. I've been putting the eakin seal around the stoma(powder before) and then the paste on the protective barrier. It seems like overkill, but it works. Haven't had a leak since. Hope this helps. [ more ]
Jeff P. Sorry to hear it. Have you talked to your wound nurse about the leaking? They shouldn't happen and they should be able to help fix it. I tried a few things before realizing that using the putty from the tube worked best for me. Hopefully a better working bag would help you feel better. Don't settle for a bad situation with your bag. Maybe change brands. Hang in there. [ more ]
KiwiPoucher Sorry, forgot to suggest using a belt as well. [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
IBD, Jpouch, and IBD related arthritis
A ActiveUC'er
TE Marie shawne, I'm sorry to hear you are having problems. I would think I had no worries if I'd had my pouch as long as you have. I'm assuming you didn't have pouchitis? I speak for my self but wish I'd had the old-time take the entire rectum surgery. I have chronic Cuffitis that is under control but if I quit using the suppositories it comes back. [ more ]
shawne h I had UC in 1985 surgery for j pouch in 1986 three to be exact I had IBD arthritis at this time the j pouch surgery was the old style the rectum was removed no cuff within a few months the arthritis was gone. I am now facing possible Crohns at the least ideopathic IBD the inlet and the pouch is involved am on 20 mg of prednisone so far no real occurance of arthritis just the usual getting old stuff. I think it depends on how much tissue is left from the rectum as to if you face joint issues... [ more ]
Srf1 I had IBD related arthritis myself that had developed over the six months prior to my first surgery in July this year. I didn't realize just how bad it had become until I woke up after surgery and the pain was gone! In a wait and watch mode right now to see if it starts to manifest again... [ more ]
See all 32 replies...
J-Pouch ForumsWomen's Health & Pregnancy
cord blood banking
FM Former Member
Breezie I agree with Kate. My friend who is an OB said that something like 70% to 80% of the cord blood collected is unusable for one reason or another, usually mishandling during collection and/or on its way to storage. And even if it is in that small percentage that is usable, they want cord blood from a healthy child, not the one that gets sick. The better option is supposed to be public donation and I've also heard of delayed cutting of the cord, but being that I've had one and I'm done, I... [ more ]
Kate1026 The biggest issue with cord blood banking is that the overwhelming majority of diseases that need to be treated with a cord blood transplant have a genetic component... thus, you don't want your own cord blood back that has the faulty gene that allowed the disease to occur in the first place, you need someone else's cord blood. Second, most people are more familiar with bone marrow transplants/donation, where it can be quite difficult to find a match and your best chance for a match is a... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Should I get antibiotics from my surgeons office or gastroenterogists?
A asdfqwer
Jan Dollar I get my antibiotics from my GI. Haven't seen my surgeon since 1996, one year post op. If I need a refill and my GI is out of the office, I have my primary doc fill it. I like to keep a supply on hand for travel, and "in case of emergency" so I can start right away if I develop pouchitis symptoms. I don't have chronic pouchitis, but get it once or twice a year, and I never, ever travel without my Flagyl! Jan [ more ]
TE Marie Go to the doctor that is better with your pouch. You could ask your surgeon if she wants you to keep coming to her. There are people on here that have chronic pouchitis and they rotate their antibiotics. You might want to ask a question about that in the Pouchitis forum and search for past postings. [ more ]
asdfqwer mild pouchitis. its not a big deal and i cna live with it but taking a 10 day course of antibiotics can clear it up. having side effects with flagyl though so need to try another one. my weekend binge drinking probably contributes to teh pouchitis though, so stupid of me [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Work/Employment and disclosure
S SarahXYZ
ActiveUC'er You need to get your FMLA paperwork from the company first, then the doctor fills it out. I think each company has their own paperwork - I don't know if there's a standard form. [ more ]
SarahXYZ Thank you all for the info! Esp on the FMLA issue, it would be great to take time off and not have it effect my vacation time as much (just my wallet a little). I am also looking into my health and if there is anything I can do to improve it. The only thing that seems to be out there that I haven't tried is daily antibiotics, which I have dreaded going on in a daily - seems to be not a good idea, but I see others here do take them. Also the pain meds. I will meet with my specialist next week... [ more ]
TE Marie I don't know how much time you are missing. Does your employer have short term and long term disability? It also sounds like you should see your OBGYN. It is good to go to the doctors in case you become disabled. I think I read somewhere 4 times a year. I was approved for social security disability recently. I also have other health issues. It sounds like your problems are escalating so I'm throwing in my 2 cents. Have you been to your OBGYN? Some ladies have problems with the J-pouch and... [ more ]
See all 7 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Hair loss
kimpouchkimpouch
Former Member ❤️
skn69 I think that the best thing about this site is the prevalent optimism of the members...even in the worst of times we find ways to laugh (at ourselves) or the situation. I always said to my best friend when he asked that the situation may be 'grave' but it is not 'serious'. I knew that I would be in trouble if I ever considered it serious. Sharon [ more ]
kimpouch Its so cool to hear that pretty much everyone that i have asked and the things i read on here that the hair does grow back and thicker. vary encouraging to me and relieves stress. started taking gummy multi vitamins and boitin 1000. I love that you named you wigs that is awesome!!! shows that even in the hardest times that you can still be spunky and sexy! [ more ]
See all 6 replies...
J-Pouch ForumsWomen's Health & Pregnancy
tighter vigina
kimpouchkimpouch
skn69 Yes it is...not to be graphic or anything but hubby was surprised. I didn't realise it (once menopaused I didn't need to deal with tampons) so it took a while for me to realise it. Hubby always waited until I was healed completely so it was 2 months post op before we tried anything and then it was obvious. Also the trajectory seemed to have changed, tilted a diffent way. It becomes a new learning experience. By the way, it is not just the first surgery that does it. I had my proctocolectomy... [ more ]
See 1 reply...
J-Pouch ForumsWomen's Health & Pregnancy
Anyone get dialated? Sex is horribly painful
vanessavyvanessavy
vanessavy That is the name. I was going to try that if Estrace didn't work. Both are hormone creams and help a lot. [ more ]
Dixie from Saskatchewan I, too, was having problems a few years ago with being so tight because of lack of lubrication that it was making intercourse painful, something which I never had a problem with before. I mentioned it to a gynecologist when I went to see him for something else & he prescribed Premarine 0.625 mg/g Cream, which is estrogen in a cream base. I use 0.5g intravaginally twice a week & it has helped tremendously. Don't know whether or not my problem was related to my Kock pouch or old age! [ more ]
NJK You can buy a dialator set from pure romance. Have you tried lidocaine for your vagina? Have you tried doing a deep squat where your hand touch the floor, or lying on your back with your knees to your chest holding your feet. It stretches out your pelvic floor muscles. Biofeed back is based alot on breathing and focusing on something else other than the pain. Call around to some clinical psychologist and they might know of someone or might be able to teach you you biofeedback tech. I started... [ more ]
See all 19 replies...
J-Pouch ForumsGeneral Discussion
Scheduled take down & vacation
S Shannah
Jeff P. Everyone is different. I was feeling good at 6 weeks and back at work. I would have been fine on the trip and just used the restroom on the plane frequently. Others might feel different. Postponing would work too if you are okay traveling and vacationing with the bag. Good luck! [ more ]
Holly M would you want to consider putting off takedown till after your trip just to be on the safe side? [ more ]
mgmt10 The odds are in your favor that you will be fine but it's good to be prepared. Like Kathy suggested, trip insurance would be a great idea. And yes of course if you do purchase it, all will be fine! I could have gone on vacation no problem 6 weeks after takedown. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Therapeutic Massage
N new2thisstuff
cassiecass HI I am also from NY.I have also thinking of this also .I have read over at ST Luke's Roosevelt and Cornell they have programs for people with our type of surgery.I would definately have approval by my Dctor prior to trying this. Cassiecass [ more ]
new2thisstuff Thanks for the replies. That is great news Jeff! [ more ]
Jeff1959 After a series of obstructions eight months ago, I started to see a physical therapist who specializes in a technique that breaks up scar tissue. This required a doctors prescription and I have not had any obstructions since. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Farting with a j-pouch
E EricP
bootstrap Haha! Thanks, Kiwi, that is good to know!! [ more ]
KiwiPoucher Bootstrap....yes it is very similar to when you have loads of UC mucus, you have to try and will know just before the abort option is no longer available!!! The difference for me is that since I have had my J-Pouch there have been no instances when there is absolutely no abort option once the process has started.....full control....YAY!!! [ more ]
bootstrap When I had UC it took a couple years to learn to differentiate between the subtle sensations of whether it was just gas or whether something other than gas might come out. I wonder if going through this process once already with UC will help me to already have some of this skill down for after I have my take-down? Or is it all just completely different since the plumbing down there is different equipment? Can anyone else make this comparison?? [ more ]
See all 26 replies...
J-Pouch ForumsGeneral Discussion
Post Takedown Blues
G gleam
TE Marie I don't think your doctor will clear you back for work so soon. When people have other abdominal surgeries, like hysterectomies, they usually have 6 weeks off. I think for a physical job you probably need at least 3 months. According to my LTD company it was 3 months. I highly recommend the abdominal wrap. I ended up with a surgery 6 months after take down for an incisional hernia. I hope you are feeling better soon. [ more ]
skn69 Gleam, I second what Blake says about the hernia belt...climbing poles that soon is really taking risks...not like you have a desk job where you can take rests and run to the nearest bathroom...you are litterally stuck up a pole if you need to run...courageous aren't you? Whatever you do or decide to do, please take every precaution to protect your pouch, abdomen and clothing (now might be a good time to check out some of the protective undergarments availible...for those 'just in case'... [ more ]
Blake D. Things definately get better. Interesting way of putting it, trying to pass gas but it feels like a balloon is in the way. That's exactly what I felt, those gas pains went away slowly, got better with time. I'm only about 8 weeks out. I feel great. Go to the bathroom about 6 to 8 times a day, 1 to 3 times a night. Its pretty easy to hold it in until I get to the bathroom. Going back to work in your field only after 18 days sounds too soon. I think you could do it if you have no other option,... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Me, my meds or menopause?
skn69skn69
skn69 Laurie, I got the book thrown at me at birth...my mom took dystelebene while pregnant with me...that along with my 'heriditary genetic' problems left me with d'Heler's-Danlos syndrom( a chronic collagene deficiency that means that I just don't heal properly= my sutures don't hold and nobody wanted to belive it), congenital deformities in the whole digestive tract, reproductive organs, heart and epilepsy...not fun at all. Every time that they cut me open I end up needing 6 more surgeries to... [ more ]
Laurie49 Ha ha -- I promise that you'll find so many of us are Type A's. I think it should be listed as a precurser for IBD. Keep us posted as to what they find out, Sharon. I didn't know you had Epilepsy as well. Damn girl! [ more ]
RLC Laurie type A personality for sure! I have had to really adapt to this new life, for sure! I don't sweat the small stuff anymore! Roberta [ more ]
See all 10 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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