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J-Pouch ForumsGeneral Discussion
Do I need dialation?
J jdgrimm
TE Marie It sounds like you need to see your GI or surgeon. When my stricture problems began it felt like what you are describing. I have a bidet and found that shooting some water up like a mini enema was what I needed to do. It progressed to needing these mini enemas 5+ times a day. When I had to be away from home I had to give myself enemas where I was staying. I think my situation was hopefully worse than yours. I was dilated during several pouchoscopies and then under anesthesia before my pouch... [ more ]
Scott F Dilation can help with strictures, but strictures aren't the only things that can make it hard to empty a pouch. I think you need a proper pouch exam by a knowledgeable gastroenterologist, or perhaps your pouch surgeon. [ more ]
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J-Pouch ForumsGeneral Discussion
Dealing with chronic illnesses
L LisaT
TE Marie You are not alone. I have been suffering with chronic pain every since my surgeries over 5 years ago. I need narcotics daily. I went to the ER the first time in my life and was diagnosed with a UTI. It was 3 months after my take down. I was embarrassed because I was sure something much worse was going on. UC pain was different. There are many of us on here that need to take narcotics. I am never pain free. Besides my j-pouch related pain I have other chronic illnesses and syndromes. My last... [ more ]
CTBarrister I have survived with inflammatory bowel disease since I was 9 years old and I am now 52 years old. I have had 4 bowel surgeries. I have been in a high stress profession (trial attorney) for 24 years and still going strong. Last year, I dealt with thyroid cancer which had just started to metastasize into my lymph nodes, and more recently I have been dealing with the pain of a pinched nerve in my neck. I turn fear and stress into positive energy and work ethic. I think it's just my... [ more ]
skn69 Hi Lisat I understand perfectly...maybe it is because I was born this way, maybe because I have never known 'normal' or 'healthy' but everytime that something is off, strange or hurts I have a horrible feeling that it is yet another disease or body part about to break down. I am lucky that I do not have an anxiety disorder. (it is a miracle)...don't know why, maybe because I was not allowed to give in, cry or get depressed. I was brought up in a sort of bootcamp atmosphere when it came to my... [ more ]
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J-Pouch ForumsHelp! Need advice now!
pouchosocopy bowel prep regime FULL PREP WITH MIRALAX AND NOTHING BUT LIQUIDS
C Chrissey86
Jan Dollar If you have to travel, I definitely would plan it so it is convenient for you. You don't want to add extra stress to this. I must admit that I am fortunate that my GI is a 15 minute drive for me. I can't imagine having to get on a plane for care! Jan [ more ]
CTBarrister It's necessary because he doesn't want you flying out to Cleveland Clinic and not being clear for the scope and then have to tell you, "you were not clear - I think you had some inflammation and polyps but I really couldn't see it!" I have actually overheard these conversations in recovery rooms while waiting for my own procedure to start. You would be surprised at the number of people who blow off/cheat on the prep. A LOT. And it sounds like you are looking for a reason to. Just do the prep... [ more ]
Jan Dollar I don't have Dr Shen, but I do clear liquids the day before, take a few Dulcolax the afternoon before, then tap water enemas until clear an hour or two before leaving the house. I am fine with it. Miralax is more gentle than Ducolax. I had a couple of hours of diarrhea. I had a meal on my way back home. I was hungry, but not starving. I don't get weak or shaky with this, and I am over 60. But, only you know how you respond to things. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Nighttime incontinence
Chad44Chad44
Chad44 Thank you for everyone for taking the time to reply! [ more ]
CeeeeCeeee My experience with Flagyl is that it works for me but not immediately.....sometimes a few days after I've completed the entire prescription I begin to see improvement in my symptoms. Best wishes! [ more ]
Scott F The usual next antibiotic to try is Cipro. Flagyl did nothing for me, but Cipro acted like a wonder drug. [ more ]
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J-Pouch ForumsK-Pouch Korner
Unacceptable Doctors Visit
S Sunshyne89
Angie Wilson Good for you! And, good for you to seek legal advice just in case. Looking back, there were definitely a couple of times I should have pulled that card - even if it was just a letter which would move my name to a "better try to get it right" pile in a doc's office. The surgeon who botched one of my surgeries even told me later I was "much too nice" about it. My thought was he was human - who doesn't make mistakes? But, I tend to allow others too much slack and expect too much from myself at... [ more ]
Sunshyne89 Thank you all for responding. I appreciate everyones support. I had even sought out legal advice if I needed to take it a step further. I was able to get the situation rectified. I am now looking for another surgeon. Though the surgeon did not make the error, the PA's are under her watch. [ more ]
Randers.USA I agree with you , being upset and such , and also trying to get things corrected. It seems that all to often doctors / surgeons write in our medical records COMPLETE FALSE UNTRUE INACCURATE statements/notes...I do not know why,. but feel they sometimes portray the patient in a less than favorable light so as if any malpractice case comes up, people who see/read your med records, such as a jury or other physician, they come away with an inaccurate impression of you as a patient / person. [ more ]
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J-Pouch ForumsGeneral Discussion
What to expect after second surgery?
Chase D.Chase D.
CeeeeCeeee Chase.....you sound like a very, very bright 14 year old! Consider what you're going through as a journey. You might even want to keep a journal so you can look back at all of this when it is well behind you. You are going to learn so much about your body and its new "plumbing". Much of everything you'll experience is brought about by trial and error on your part. What doesn't seem to work for you one day, one week or one month may turn right around and be the answer you were looking for! I... [ more ]
NewJersey64 Thank you all for your encouraging comments, I can't wait to lose this bag,at almost 52 years old, I love kick box and play multi sports several times a week the South Texas weather is beautiful,from biking to swimming ,I hate for anything to hold me back,even my own body,being an Aries,it's hard for me to not push myself. Again everyone take care and keep the great advise coming!. [ more ]
king of the throne Chase, Good luck to you buddy I am 37 and experiencing this and having a hard time with it. Being a teenager is hard enough without having something this thrown at you. The recovery from the second surgery is probably a little bit tougher than the first. This surgery is a lot more invasive than the first. It will probably be a little bit easier on you because you do know what to expect. For me the worst part of it was passing the mucosis I was running to the bathroom 15or so times a day. My... [ more ]
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J-Pouch ForumsK-Pouch Korner
OMG!
skn69skn69
Janit Has happened to me more than once lol! [ more ]
Mysticobra Ya... Autopilot... Catches up sometimes... Lol. [ more ]
Rosie128 Have done this at the house before, which is not that big of a deal, but poor hubby! I do so much on auto pilot, that I am nervous one day I will make a bigger mistake. So I hear ya on doing "brainless" things! lol [ more ]
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J-Pouch ForumsHelp! Need advice now!
Rectum/j-pouch removed complications
toobusy2cleantoobusy2clean
Mysticobra I had mine done four months ago. I cannot get the bottom part of the incision to heal right at the public bone? First two times it was open. Now it's sealed but I can tell it's infected. Third time it has become infected. Cut open twice bigger to heal. Now I think I may have to do it again. Not a good spot. But this may not have anything to do with what's going on with your daughter. Mine just is in a very thin skinned spot I guess. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Partial Bowel Obstruction
S Sandyj
Sonja6 Im going through the same thing right now, except the being pregnant part. I've only been able to get pregnant once and didn't even know I was pregnant till after I miscarried. I've had horrible adhesions since my takedown 12 years ago and horrible periods since an ovary removal a few years ago. So I just thought the horrible pain and bleeding was a combo of the both. But I woke up this morning with that same pain. Can't stand up strait at all, super nauses for weeks, headaches which I never... [ more ]
pinklady I am 15 weeks and 4 days pregnant and have been admitted to the ERywicefor partial obstructions.that cause severe pain nausea vomiting.It has take 24-48 hours to pass.Once it passes I have a sore tender stomach.I hope this does not continue.I am trying to eat more bland but prior to pregancy I never had any issues with obstructions.I hope I can make it through this pregancy with out any more issues [ more ]
Sandyj Thank you for sharing Your experiences with me. It looks like my uterus is compressing my pouch, thus preventing solids to flow through. They weren't able to look at the small intestine further up, do to the amount of radiation, so there could be an obstruction further up. At this point they are putting me on TPN until I deliver and hoping everything gets better after that! [ more ]
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J-Pouch ForumsHelp! Need advice now!
pouch spasms
M M_Party
Jan Dollar I get it on Amazon. http://smile.amazon.com/Heathe...eathers+tummy+tamers Jan [ more ]
Brewbirds Jan- can you tell us where we can find the peppermint oil you are taking? [ more ]
Jan Dollar I have found much relief from the cramping and churning by taking enteric coated peppermint oil three times a day. Seemed too simple to be true, but it helps. Oxycontin is potent stuff and a hassle to keep getting on a regular basis. Even Norco was a big hassle for me. That is why I asked my rheumatologist to switch me to tramadol. It probably would not work as well as oxycontin though. When you say it does not constipate you, maybe it is just because it is new in your system, as the GI... [ more ]
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J-Pouch ForumsOstomy & Skin
Revision
F Fosty
Fosty Thanks guys. The reason was I had so much scar tissue and it was a hard surgery excising the pouch etc she couldn't pull the bowel any further so hence revision. She's one of the best in Canada so was comfortable with the explanation. Lynn [ more ]
Jan Dollar Sometimes stomas retract when they mature if they don't heal right. It happens. Best to get it fixed or you'll never get a good seal with your appliance. For a temporary ileo they let it ride and you just deal with it, but not with a permanent one. Jan [ more ]
Mysticobra Never had a revision but you do want it out further. Wonder why they didn't have it out further the first time is the question. Just wondering. Less skin issues If it is out further. Well worth it. Mine sticks out at least an inch and works like a charm! Richard. [ more ]
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J-Pouch ForumsGeneral Discussion
BM Frequency-normal & pouchitis
crystalpouchcrystalpouch
Scott F A healthy, well-functioning pouch will tend to require 4-6 bathroom trips daily. Some cases of pouchitis are simply cleared up with 10-14 days of Cipro or Flagyl. Other cases (like mine) turn out to require continuous treatment with antibiotics, preferably rotating among a few different antibiotics every 2-3 weeks, if you can find a few antibiotics that are effective for you. [ more ]
Gr8Mamacita I had my takedown 3 years ago Gavin had my colon removed, ,& go to the bathroom 15-20xday. Recently I had a sigmoidiscopy and the Dr said I had a bit of piuchitis. I was on Flagyl for 2 weeks and felt like a million dollars . My frequency was cut back and I could finally sleep more than 2 hr ntervals at night. Even the butt burn and pain was reduced. BUT..within 24 hrs of finishing the flagyl, the frequency is back, & having some butt burn. I asked the Dr if he could prescribe an... [ more ]
jeane I average about 6-8 times a day (without active pouchtis) and often 8-12 times a day and 2-4 times a night if pouchitis is flaring. It is very annoying I know. I also suffer from relatively chronic pouchitis I keep in check with occasional doses of cipro. Hope the new meds help you. [ more ]
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J-Pouch ForumsHelp! Need advice now!
7 MONTHS OUT STILL APPROX 10 BMS PER DAY
bederyparisbederyparis
rachelraven Today I went 5X, and I'm 25 years in. Yesterday it was about 8X. I just don't count generally, as long as there's no urgency. What I eat impacts it, but not like it used to. I've gone as few as 3X a day, but that's rare. I'd say six is my average, with usually zero at night, but occasionally 1X. [ more ]
Spooky At 7 months, you are still a relatively short period out from your takedown, and there is plenty of room for improvement. While some j-pouchers do settle around 10+ BMs as the norm, at this stage in your recovery, there is no reason to believe that this will be the case for you. J-pouches are complex and it can take you body a while to adjust. In my experience, I really noticed changes around 1.5 - 2 years out. Those improvements tended to come in leaps and bounds, rather than gradually. I... [ more ]
Muddygirl I am 9 1/2 months post takedown. Right after my jpouch surgery I was taking Loperamide (2xday) and Benefiber in my morning coffee. I did this maybe 3 weeks off and on and it seemed to me that it really did not help me. I am somewhat of a stubborn person and decided to not do either anymore. On most days in a 24 hour period, I have 3-4 BM. This may be the best it gets and I am good with this just as long as I can get to a point I can eat more variety of food without having to deal with the... [ more ]
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J-Pouch ForumsK-Pouch Korner
Help! need advice for one handed operation of the K pouch
J JLH
Kara Fred I'm so sorry you are going through this ordeal. I think everyone has provided great ideas and my first thought was to install the constant drain tube/bag- just like after surgery. Of course irrigating is hard, but it appears you have managed. My stoma is typically flush with the skin, with the exception of a small roll above- surgery settled & I am not stick thin. My thoughts are with you Janet, this too shall pass. [ more ]
skn69 Janet, The flange has two little hook-up thingies on the sides that should hook to the belt (it is sold as a unit in one box I think)...the baby bottle nipple gets put in from inside towards the outside so that it fits snuggly...you can superglue it in for security if you like...then slide the tube in after it...the advantage especially for people with sensitive skin is that there is no taping of tubes onto the skin...the belt holds things tight against you. I use 2 differnt kinds of... [ more ]
JLH I asked for the flange and have that ready. What is the benefit of the belt and how would I attach it to the flange? What do I use to plug the catheter? i'm still worried that repeated intubations, which were not done very well, have damaged my valve. The nurse brought me a new catheter and I think it too added a tad bit of damage I'll be happy to no longer be the animal in the zoo i.e. the nurses watching me. What really gets me is when they say: now that's working properly, when 15 minutes... [ more ]
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J-Pouch ForumsOstomy & Skin
underwear and "covers"
GinLynGinLyn
GinLyn Oh, I SO LOVE being able to ask real questions here! Thanks, you all. Sharon, thanks for the offer, and the bodysuit idea is a great one. Will definitely check into that. Do you have a line/brand you really like? They sound perfect for layering as well. I think I've found enough underwear to do for a while, thanks to Hema (the basic Dutch department store I mentioned). I also scored some stretchy tank undershirts which offer some good protection as well as a bit of support; been liking them... [ more ]
TE Marie Please look on "Etsy". Look under maternity bands and you can find anything you would like made out of many different materials. I bought a 3 pack and picked from many different colors. They cover as described above and aren't pricey. There are several vendors carrying them. I also purchased just the bag covers there as well. If I sweat along with the warm output the bag against my skin smells It is probably the brand of bag I am using but I am stuck with it as the wafer is the best for me. [ more ]
Lambiepie I like that one piece idea, Sharon. Also, Gin, the lingerie website I was thinking of is vblush.com. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Sex and J-pouch??
I IrisB
Former Member ❤️
Martiangirl Hello lovely people, I ve not visited the site for several years. My pouch surgery was in 2007. I ve never had any problems with it and my sex life has not suffered at all. I was single at the time of my surgery but it didn't stop me dating I agree that on my "sexy days"eating foods that will result in thicker output helps. So I stick to potatoes ,chips or boiled, it makes no difference as they work best for me to bind everything. I must admit I do not pay too much attention to what I eat so... [ more ]
Angie Wilson Yes, you are right. sorry about pain meds, cane, etc. - you are just a person who wants to do so much and time/health at times got in the way - like it does for all of us - I assure you you have done a tremendous amount of things others can only dream of - but, it seems in life that it's never enough - there are always those other dreams that don't work out. Never say never with you - you may not walk the entire Great Wall - but you may visit it and someone can carry you. We took this trip... [ more ]
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J-Pouch ForumsGeneral Discussion
My J Pouch Journey
ItsanewworldItsanewworld
CeeeeCeeee Those hospital issue bed pads are a godsend. I mean the ones made of padded fabric with a waterproof side. Before leaving the hospital I found out where the hospital got them. I went to the source, which was a mega laundry, and I purchased about 6 of them. It is thirteen years later and I still use them. They wash and dry beautifully and maintain their shape. They must have sold them to me at cost. They weren't very expensive at all! Best wishes! [ more ]
Jeffsmom Ask for all the pain meds you can get and then some! Breath is the best advise and sleep. Make a pot of chicken soup. The Barefoot Contessa has a great one. I even bought a 24 quart pot to make it. Let it cook down and it's rich and tasty. My son loves it! Go food shopping now! Take a yoga class and relax. Worrying is not going to make it any better. Gook luck! dianne [ more ]
Mysticobra Hahaha... I know what you meant Sharon. I borrowed all I knew they were going to throw away anyways. No use wasting the stuff. If there are pads in the room when you are fixing to leave and you don't take them they will just throw them away. That's a waste. You give good advice. We all appreciate it. Richard. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Substitute For NSAIDS
CTBarristerCTBarrister
JLH You might also try acupuncture [ more ]
CTBarrister My left arm is going numb and there is a pain in the area between my neck and left shoulder. I am a bit leery of opiates due to their constipating effect on me but will keep my options open. My PCP doctor thinks the physical therapy may alleviate it. [ more ]
Jan Dollar Just watch your dose. Better to combine with an opiate or something like tramadol than to max out the Tylenol dose. Oh, and don't be shy about asking for muscle relaxers if you need them. When I had a compressed nerve root in my neck that was really inflamed, my neck and shoulder muscles spasmed so much I could not lower my shoulder. Flexeril or Robaxin can help relax it a bit. But, the heating pad made the biggest difference. Unfortunately, PT just made things worse. Bottom line, I just... [ more ]
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J-Pouch ForumsGeneral Discussion
Having private surgery in the UK
Z Zed
skn69 Sounds similar to the French system. Same surgeons, different prices, shorter wait times, better 'hotel' service. Good luck Sharon [ more ]
Trojan Your GP should be able to refer you for private healthcare, the same as an NHS referral. In some cases the NHS surgeon will be the same person as the private surgeon, they just split their time between the two and you get quicker appointment times if you pay.Your GP may know the best local surgeons, either way, so it's a good place to start if you struggling with the self-referral route. [ more ]
Anthony Gamble Best way to get surgery in my opinion...Find a surgeon you like, see if they do private clinics, make an appointment via their private secretary (appointments normally cost £200). Once you see the surgeon privately you are normally fast tracked. Hope this helps. [ more ]
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J-Pouch ForumsGeneral Discussion
,
Rosie128Rosie128
CTBarrister I think you mean "systemic yeast infection", but in any event, I am aware of a case where a pulmonary fungal infection was contracted by a person who was exposed to breathing mold spores in the aftermath of water damage in a condominium. You don't need to be immunosuppressed to get one of these. All you need to do is be exposed to and breathe mold spores. But it's rare in any person. The people who are most at risk among those of us on the board are those taking immuno suppressant drugs and... [ more ]
Jan Dollar Never has been an issue for me. I am also leary of this diagnosis. While fungal gut infections do occur, it is not very common. If you've been on a lot of antibiotics, it is more likely. The notion of systemic yeast infection is sort of a fad thing. Jan [ more ]
Scott F Most of us don't have "low immune systems." IBD is, if anything, an overactive immune system. I'm also not at all sure that most of what gets called "systemic yeast overgrowth" is real. Rosie, how did you get this diagnosis? [ more ]
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J-Pouch ForumsGeneral Discussion
Low blood sugar or low salt
DB Dr. B
Jan Dollar I took a look at your profile and I see that you have ongoing pouchitis since 2007. So, yeah, you could be having nutritional issues. I hope you have been having regular screening labs: CBC, blood sugar, HbA1c, liver enzymes, renal function, thyroid levels, B12, folic acid, vitamin D levels. While pouchitis can interfere with absorbtion of a number of nutrients, age and other autoimmune diseases can also be a factor. It can also be side effects from your pouchitis treatments. Be sure to rule... [ more ]
skn69 So true... [ more ]
Lambiepie Dr. B, just a thought but, in addition to Sharon's helpful suggestions, you may want to have your iron levels checked. The body starts to get out of whack as they drop. Mine did with, among others, the symptoms you described. [ more ]
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J-Pouch ForumsK-Pouch Korner
Possible to have K-Pouch Surgery...
Randers.USARanders.USA
skn69 Thanks for the answer Jan, I am terribly ignorant about these things...it makes sense though...they would want to do an all or nothing sort of procedure...I also forgot about those darned antirejection meds. By the way, did I hear something about perparing the body with blood transfusions to make it accept transplants better? Sharon [ more ]
Jan Dollar They don't do small bowel transplants unless you cannot tolerate TPN and it beomes a life-saving endeavor. Plus, very unlikely they would transplant only a small section of bowel, since you still have to take the same antirejection meds. Also, it is extremely unlikely they would risk any portion of a graft to a reservoir. There are bowel lengthening procedures that may be more useful for an attempt to come off TPN. https://en.m.wikipedia.org/wik...tine_transplantation Jan [ more ]
skn69 Josh, My heart breaks for you. I am so sorry that you are suffering...especially since it was not necessary...this is a horrible situation for you. Can you get out of the house? Do you have the energy? Like Janet asked, can you go for walks? Just around the block to get some fresh air. I know that that was the first thing I craved once I started to feel a bit stronger...walks. For now, just heal. Get strong and heal and then you can think about alternatives to your present situation. Supid... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
38 weeks pregnant- increased pouch output and trouble urinating
BZ Bronwyn Zozula
Brewbirds Yay! So exciting! It will all be worth it in the end! All the best! [ more ]
Bronwyn Zozula Thank you so much Brewbirds! I am so relieved to here that. It being a weekend I haven't been able to see a doctor about this at all. I took an Imodium last night and it helped a lot. C section this Friday so I can wait it out. [ more ]
Brewbirds Yes I had an increase in BM around the 38 wk mark too. Doc said completely normal, a result of your growing uterus placing pressure on pouch. Once I delivered via c section, everything went back to normal immediately. Hang in there, it's almost over. Good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
Reunion
MB Mr brian
Mr brian Same age as me and 30 years. Wow that's encouraging. Ya definitely a large bathroom facility [ more ]
Angie Wilson If we had that reunion (or have it) in person - that hotel better be well stocked with great plumbing and tons of TP! It's a great idea. I cannot believe I am in the 30 year plus j pouch crowd. I am 53 - how the hell this happened is beyond me! Ya gotta laugh. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Chronic joint/muscle pain and what to do?
V van
FAPLifer I had horrible joint pain everywhere. Took me 15 mins just to get out of bed every morning. That along with other symptoms, my doctor has diagnosed me with Chron's, along with my good old FAP which caused me to get the j pouch. He put me on Remicade. Took a couple of months, but after that I had no pain. Didn't even have to take the occasional tylenol. If you are having other issues besides the joint pain I'd ask about Remicade. It worked wonders for me, and I had to miss one infusion... [ more ]
van Hi everyone. Thanks for all the advice. Jan I think your right as I have had X-ray/CT and it's all come back neg . [ more ]
AllyKat I'm trying Accupunture and the overall pains I get seem much better. Personally, I don't care if it's age related, UC related, Entyvio relanted, weather relanted, I'm not going on any more meds. Looking at natural stuff. i also found Epsom salt baths work wonders. [ more ]
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J-Pouch ForumsGeneral Discussion
Possible crohns and prolapsed pouch
Ashley22Ashley22
FAPLifer I have had the same issues. I was always having a uti, never even really knew since it never went away and just became normal, bleeding, pain, never felt empty, I am always in the bathroom for at least 10-20 mins, and back again if I wasn't done. My family has grown to know where to look for me first. I have the extra tissue that protrudes when I push to empty my pouch, but never really thought much of it, the doctors are always going up there with scopes so figured must be normal. I'm not... [ more ]
Ljz I am seeing my surgeon in 3 weeks ( was supposed to go this week but referral was delayed) for what my gastro thinks is a prolapsed pouch. I have the same frustrating pouch emptying experiences as you, and can see big hunk of tissue protrude out anus after pushing to empty completely. However, I do not have any of other issues you have, and little to no pain. Good luck with all your tests, and I hope they find something to relieve you of your pain. I expect I will have that test down the... [ more ]
Jan Dollar I don't have your problems, but I think what you mention last is an upper GI series and small bowel follow through. This is also sometimes referred to as a barium swallow. Basically, you drink a barium milkshake and they do serial x-rays as the barium moves through your system. As far as the UTI goes, I would suspect you may just need a different antibiotic. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Non-functioning pouch??
RHFRHF
Jan Dollar If Dr. Shen can't sort this out, then there isn't much else to do. Jan [ more ]
RHF Bill, Jan and SKN: Called Cleveland Clinic, got an appointment for exam and evaluation with Dr. Shen. We are hoping that some intervention will provide him with some pain-free days. He certainly needs them. Thanks for the encouragement and common-sense advice. [ more ]
Janiep ❤️
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J-Pouch ForumsGeneral Discussion
Pilonidal Cyst?
D DeathStalker
Bodoni I have a K-pouch. I had a pilonidal cyst years ago. It was right near the tip of my tail-bone. Now, I think I am getting another cyst. It is a bit to the left of my tailbone in my buttock. Feels like a little hard lump. It is not 'ripe' - nothing is coming out. Should I just leave it alone? It only feels a little sore if I press on it. Thanks. [ more ]
JHendrix Deathstalker, has anything developed with this? I also have tailbone discomfort along with anal pressure (feeling like something is pressing down from the inside). I've been diagnosed with a Bartholian Abscess (female) and am wondering if there is more to this. [ more ]
AllyKat My son gets flare ups every so often. Hope u feel better. [ more ]
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J-Pouch ForumsGeneral Discussion
maximum size dilator
pouchingtonpouchington
pouchington I think I'll start some fruits. Thank you Jan.... [ more ]
Jan Dollar You can do tap water enema rinses to help evacuate. Not ideal, but should do the job. I do better with looser output, so I don't limit fruits and vegetables. Jan [ more ]
pouchington I'm definitely getting it past the stricture daily but it does seem I need to have a precise consistency that is impossible to duplicate every day. Too thin and not enough bulk to empty and too thick and I never ever feel empty. I have been dxd with pelvic floor issues but multiple biofeedback physical therapy sessions have not been successful. I even went to the top therapists at Cleveland clinic Ohio. Any other options? [ more ]
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J-Pouch ForumsHelp! Need advice now!
leaking update
R Rebe0505
Jan Dollar Oh there IS inflammation, just not much in the way of acute inflammation. The deep ulcers were indicative of chronic inflammation. That may be why Entocort was not discussed. He did say I could use hydrocortisone suppositories or even VSL#3, but he didn't have much hope for them. Yes, I do like my GI. He's not a j-pouch specialist (he's a liver specialist), but he is very responsive to emails and does lots of research to stay on top of treatment trends. He also works closely with my... [ more ]
Rebe0505 hmm.. jan you say ulceration but not lots of inflammation does that change anything in concern for dysplasia i wonder???? sounds like your dr plan is good to me.and you seem lucky to have a doctor so knowledgeable ..i always felt calmer and better when i felt there was another alternative to try and seems like you have it for now..good plan to me..(i think like i would be) you were thrown by last scope and jumped to a place you were not at yet..When i have my head screwed on right i know i... [ more ]
Jan Dollar No, but I've been on short courses of prednisone here and there. I suppose it is on the table, but not at the moment. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Could it be another hernia
L lhh65
Spooky Laurie, this actually sounds similar to some of the symptoms I have had with partial obstructions - cramping, unusual movement, gurgling and sometimes the sensation of a "bulge" if I press on the area. If it persists, you may not want to wait the full week; perhaps give your GI's office a call and see if they can fit you in earlier. In the meantime, if you develop fever and/or vomiting or if you are passing no stool at all, you will need to head to the ER. [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
healthy snack?
I iHateColitis
Spooky It depends on your tastes, but any of the following are go tos for me: applesauce (unsweetened) a small slice of cheese or a cheese stick, rice crackers and hummus, a few peanut butter crackers, greek yogurt, light cottage cheese, etc. If you are trying to avoid running to the bathroom, be wary of those "low fat snacks" that are easy to grab, like pre-packaged cereal bars or the so-called breakfast bar. You might think you're doing yourself a favour since they are low in calories, but they... [ more ]
Former Member Cheese sticks might work. They don't bug me much and I'm lactose intolerant [ more ]
cas ❤️
See all 6 replies...
J-Pouch ForumsGeneral Discussion
psyllium powder
S Susan33
Scott F Many of us have used psyllium and done well with it. I've used it every day since I got home from the hospital about 14 years ago. Some people get gassy from it and prefer a different soluble fiber solution (e.g. Citrucel or Benefiber). [ more ]
See 1 reply...
J-Pouch ForumsHelp! Need advice now!
Leakages, pain and blood.
KD Kate Deaken
Scott F People commonly have trouble with their loop ileostomies, including discharge from the pouch that can be hard to hold in. It's reasonable to call your GI or your surgeon to get their sense of it. Have you tried any dietary changes that might help a bit, at least with the ileostomy output? Is it possible that you're dehydrated? The best way to tell is to make sure that your urine is clear or light colored; hopefully you're able to pee separately to check. [ more ]
Kate Deaken Yes I have an external bag still with a take down surgery planned in 3 months. I've just been having so much trouble since my last surgery in October when they built the j -pouch and removed my rectum. Do you have an ileostomy ? Or any advice, I would really appreciate it. I'm at a point now where I don't know what to do. If I should go to my GI or call my surgeon, it's definitely been a rough journey. [ more ]
Scott F Kate, I'm sorry you're having so much trouble. Do you still have an external bag? When you wrote "the output in my bag" it made me wonder if you still had a loop ileostomy, with another (take down) surgery planned. [ more ]
See all 3 replies...
J-Pouch ForumsPouchitis
Alicaforsen Does anyone know anything?
K katenet
ks1905 Has anyone been in their trials or heard more info on Alicaforsen since this post from 2014? They are recruiting patients for their phase-3 trial for pouchitis. http://ibdnewstoday.com/2016/0...-enrolling-patients/ I'd have to discontinue Cimzia to get into the study which I'd rather not do for a placebo. But it is something that I plan on talking with my GI about. [ more ]
Rebe0505 thanks jan..so i guess the writing is still out on this new drug..keep us posted about it anyone [ more ]
Jan Dollar No, this isn't an old thread, but this drug has been discussed before. It takesa long time from phase 1 studies to FDA approval. So, we are not there yet. Looks like Europe will get it approved before the FDA. So, it is always a changing scene, and I'm sure Dr. Shen monitors these things.q Jan [ more ]
See all 9 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Pregnancy and delivery options
C Chayes
juliemk3 Congratulations on becoming a mama. I had a c section with my son born 10/2014. I would recommend that you keep your surgeon (who did the pouch for you) in the loop on things. I had a blockage after my c section and the ob I had was not equipped to deal so I ended up being the one to call my pouch surgeon who ended up taking over my care completely during my recovery in the hospital. I had more pain post op than I thought and needed to call in for a few extra days of pain Meds. I was on pain... [ more ]
LoveLife Hi there, Yes, we'll, tough choice. I was advised to go for a c-section because my doctor though there were high risk of permanent damage to my rectum - due to the previous surgeries. I followed his advise but then another thing happened. They tore a hole in my small intestine because some old scartissue stuck to the peritoneum (?) and so they had to remove 3 centimeters. So my recovery was long and very frustrating. You have to keep in mind though, that I have 8 previous surgeries behind... [ more ]
Lovin Life Any updates on your deliveries "LoveLife" and "Chayes"? I am currently 32 weeks and the OB has left the decision in my ball court essentially. I really want to do a vaginal delivery for several reasons, quicker recovery (hopefully), and I have not had great success with my previous surgical recoveries. I do hear all the time that a C-sect is pretty standard and low risk but I want to have the whole experience especially since this is my husbands first baby...any updates would be greatly ... [ more ]
See all 7 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Anyone get Essure procedure?
S Sweetie1234
Sweetie1234 Yay! Congrats! Thanks so much for sharing your story. I'm so worried about the Essure procedure, but hearing your story makes me hopeful. I don't feel like I have too many options right now and Essure seems to be the best one. I figure I can always have Essure removed, along with my tubes, if needed down the road. Thanks for giving me hope! [ more ]
Lovin Life ❤️
Lovin Life I had the Essure placement last year in February after a failed IVF. My first RE recommended Essure before she would perform the IVF and I was very hesistant due to my hopes for a miracle and not wanting to undergo any other procedures. I had Bi-lateral hydro. I ended up switching to another RE who allowed me to undergo IVF without Essure and unfortunately it did not work. I transferred two embryos and neither implanted. I was so sad. We ended up doing the Essure after that. It took 4 months... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Can't pass stool
U UjohnjC
Jan Dollar Sounds to me like you need a prescription oral antifungal to help get back on track. The supplements may help with the symptoms, but if you have a fungal pouchitis, it should be treated aggressively. Supplements are intended for maintenance, not cures. I recommend calling your doctor before things get too serious. Jan [ more ]
UjohnjC Not sure jan believe yeast infection is inside pouch that's the way I understood it I've been taking supplements gi micron-x &hcl pro-zyme & beta tcp , colon plus,kapparest,super digest-zyme to help with that and burn and other things [ more ]
Jan Dollar I am sort of confused. If your doctor told you that you had a yeast infection, it does not make sense that he would recommend antibiotics (unless you are leaving something out, such as you have pouchitis too and the yeast infection was just on the skin). If you have a yeast pouchitis, he would have prescribed an antifungal, like Diflucan. If you needed antibiotics then, you probably need them more now. Pouchitis doe not just go away. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Cuffitis treatments?
JG Julie G
Specks Hi! I'm new to all of this. I recently had my ileostomy takedown (Jan. 26, 2016), as the third surgery in my 3 surgery process. I feel like I had persistent problems with my "rectal area" along the way. After the first surgery, I still had sxs of my UC, which I attributed to the fact that my rectum was still in. After my second surgery (removal of rectum and creation of J-pouch), I continued with sxs, but mainly at night. I had a lot of "rectal" pressure and spasms with urgency that recurred... [ more ]
jeane Maybe I am just not clear on the pouch advancement surgery. When they advance the pouch do they move it to the very end of the anal canal and then sew it? If so, how can there be anything left in the anal transitional zone or cuff(if removed) where inflammation can occur? I can see inflammation still occurring in very bottom of the pouch after they disconnect it and drop it down and then sew it, but I am still confused on where the inflammation occurs after advancement. Yes, I do have many... [ more ]
TE Marie I've heard even with pouch advancement the cells can come back. It was likened to endometriosis in a way. It's hard gathering all the sand up off of the beach and if you leave a few cells on the beach they can multiply and eventually come back. Is that a good way of describing it AllyCat? I'm sorry you are still dealing with this. I'm still using Canasa as my main form of treatment but wasn't told to watch out for Anucort thinning the skin Jeanne. I think you have about 6 different things... [ more ]
See all 23 replies...
J-Pouch ForumsGeneral Discussion
Revisions
Deanna6Deanna6
Deanna6 Jen, To even get therapy covered for that long?!?! I think they felt they were at a loss and end of the line. I have exercises to do at home but insurance won't continue to pay without showing progress...already pay out of.pocket for a chiropractor visit... So your problem too was only evacuation?! Which sucks. Makes.you want.to eat " easy" things as youre already in the bathroom allll day long anyway... [ more ]
JenJen Ugh, been where you are and am hopeful for you -- but it sounds like you have exhausted this doc as a resource. I've done some of the same routine you mention, had difficulty evacuating followed by prolapse diagnosis (in addition to pouchitis and cuffitis) followed by many meds and physical therapy. Only I've done it for five years now. I swore I'd do anything to stay out of the hospital and home with my husband and kids, but at this point I am so bad off I guess I'm not really "home." I... [ more ]
Mysticobra Good luck! [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
Lasiks eye surgery
skn69skn69
Angie Wilson Thanks for all of the information - my husband did this too - about 15 years ago - loves it. I think about doing it now - my eyes got too dry for contacs...I think I'll just wear the glasses. Looking back, if I were in my 20s/30s, I would do it. I always figured I'd be the one person who ended up with a bad result! ha! And, back in those days, contacs did not bother me. Not the worse thing in the world to wear specs. Great thread with lots of good information -thanks you people! [ more ]
Spooky No, that is the other thing to consider. Laser is not always permanent, though again it depends on the type of procedure. My uncle had his done about 12 or 15 years ago and now requires glasses again. Laser corrects your vision based on the shape of your lens at the time the procedure was done. Over time, the shape of your eye may change again, just as you may require different prescriptions for glasses as you age. However that being said, my understanding is that the surgery gives you far... [ more ]
lablover I thought it was worth it at the time. For me and eventually my husband, we had to go back to glasses... [ more ]
See all 18 replies...
J-Pouch ForumsHelp! Need advice now!
cant empty pouch
bederyparisbederyparis
Angie Wilson Great advice - well explained as always, Jan. Thanks for all you do! [ more ]
Jan Dollar I am not sure that this is abnormal. Many people think you just sit there long enough for whatever is at the exit to "explode" out, and you are done. But, unlike a rectum that contracts when full, the j-pouch empties by gravity. So, yeah, it is not atypical for more stool to drop down after the pouch empties. You clean up, stand up to wash your hands, and "whoops" there's more that wants out. The longer it has been since you last emptied, the more there is to come out. Sometimes what I've... [ more ]
Angie Wilson I don't know - I sure wish I could help you. What has your GI person said? Have you had pouchoscopies, etc. to try to get a diagnosis? Sometimes I've had better luck with a GI person than my surgeon when issues have come up thru the years. I bet they can fix it. Also, when you say 7 to 8 times in a short period of time - what do you mean? Some people with j pouches (my dad - I can remember) sat in the toilet for about a half hour at a time....I don't know if he had this sensation.. but it... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
40 days till 2nd takedown
PouchomarxPouchomarx
Angie Wilson Good luck to you all. my experience was take down part was a breeze compared to colon removal part - but everyone is different. It takes patience, etc. to get used to pouch - but I sure was glad to get rid of the bag at that time - I was 23 - am now 53. You guys can do this!! Cheering you on! [ more ]
kevh I have my takedown surgery thurs 2/25 as well. I have the second of a two part . I am nervous about this next step as well... good luck to you! [ more ]
Sharon W I am having my jpouch surgery this Thursday. I did the colectomy in July 2015. My Surgeon does it in three steps. So I will still have ileostomy until 3rd surgery. What should recovery be like and has anyone else done it in 3 steps? [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Salt intake
C Chayes
JLH i'm on the salt wagon also!! lucky me i don't have high blood pressure, if anything it's too low. prior to my colon removal i would barely touch salt. might this salt phenomenon have anything to do with our small intestines developing a different osmotic process? extracting fluids is one of the colon's functions and we simply have a different process now. i also drink more fluids and had terrible SIBO--part of which is caused by osmosis--with the j pouch. just a thought.... janet [ more ]
Chayes Thanks again for the comments. Good to know I'm not alone. J9pouch, I do sea salt the and way!!! My husband tried to get me to get some pink Himalayan salt this weeknd said it would be better for me, I'll have to try it out. [ more ]
CTBarrister My salt consumption is off the charts and horrifies onlookers. When I had thyroid cancer last year for 24 days I went on a low iodine diet preparatory to taking radioactive iodine. During this period of time I realized there is a sharp and unpleasant taste difference between non-iodized and iodized salt, the former being just too strong and the latter being more appropriate and capable of being used in greater quantities. Its all good and prevents depletion of sodium levels. Electroloyte... [ more ]
See all 8 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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