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J-Pouch ForumsHelp! Need advice now!
Help - Bowel prep will send me to ER
Linda2Linda2
Jaypea I have had 5 different phone calls to the radiology department to try to explain my anatomy to them. I agree with trying to reach your surgeon, GI, or radiologist to figure this one out. You definitely do not need bowel prep. [ more ]
liz11 jan that was the funniest thing... "telling them you have a jpouch is probably as effective as telling them you have a raincoat" How true that is. Seems most medical professionals have no idea what a jpouch is? and linda I hope you didn't do that prep as you would probably need iv hydration if you did! [ more ]
Jan Dollar You did inform them that you had no colon, correct? Telling them you have a j-pouch is probably as effective as telling them you have a raincoat! Plus, you need to be sure that they are not just reading the instructions to you (as in: just the receptionist answering the phone). You need to be clear that you want the radiologist (MD) who will be interpreting the results to know you don't have a colon and what is the necessary prep in that situation. I've gone through this many times and the... [ more ]
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J-Pouch ForumsHelp! Need advice now!
can someone explain what is an anal fissure?
R Rebe0505
Rebe0505 pluot thanks good advise..now to check my special diet i am on for avoiding bacteria overgrowth and refine it while i am trying to get past the fissure..if i am not mistaken for fruit the banana ,blueberries might be ok to eat?actually my diet out of scd book suggests things for easily digested foods will check it out again..will give up my beloved nuts for now in any form.. [ more ]
Pluot yes... it's basically like a paper cut in the anus, often it will be right on the edge of the inside/outside so if you "go exploring" with a hand mirror you can often see it. personally i had no need to see mine but some people are curious sitz baths are good for soothing them and encouraging healing as well. the main thing is to baby the area, eat foods that pass easily, nothing that will scratch on the way out (sorry, i think that includes almonds! nuts, seeds, etc), clean yourself gently... [ more ]
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J-Pouch ForumsGeneral Discussion
Does our body absorb vegetables?
N naz
tulsamom KatKane: You will just have to see how your system reacts. Most likely you will have to add things gradually. I have had times where eating large amounts of veggies has had no ill effect on me. I've had other times when it makes my output watery and I had serious butt burn. I will tell you that things come out better when I used a blender to mechanically break them down. But it was not good for me because I enjoy eating and all the different flavors and textures of food. At that point I had... [ more ]
Scott F A shake will do the chewing for you, and for some people that helps mechanically. It won't have any effect on nutrition, unless you put things in the shake that you wouldn't have otherwise eaten. [ more ]
KatKane I have not had my surgery yet but I am curious about the nutrition especially veggies. I eat clean and lean with LOTS of veggies. I am wondering if making them into a shake would give me a better opportunity to absorb nutrients as well as easier on the pouch? [ more ]
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J-Pouch ForumsGeneral Discussion
Full bladder sensation
J Jaypea
Spooky If this is a newer problem for you, then the first thing I'd want to rule out is a bladder infection. You don't have to have pain or bleeding to have a bladder infection. In fact, two of the most common symptoms of UTI are frequent urination and/or the sensation of having a very full bladder, even if there is very little urine to pass. (I've had my fair share of UTIs, so I would know!). If a UTI has been ruled out, it is true that the bladder and pouch are in very close proximity to one... [ more ]
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J-Pouch ForumsHelp! Need advice now!
post blockage pain
Wanna Be HealthyWanna Be Healthy
Wanna Be Healthy Thank you so much, Jan. That all makes sense. I knew I could count on you. Ok, I'll take it easy, drink those fluids, I'm having baby food consistency food and wait it out. Thank again, [ more ]
Jan Dollar Seems pretty typical to me. Your gut has been very traumatized. The more severe the obstruction, the more severe the trauma is. The intestines get inflamed and swell with an obstruction, and it takes some time after the obstruction clears for the swelling to go down. Imagine a little ninja inside, kicking and punching his way through, leaving you battered and bruised inside. Just like getting a beating you can see, this takes some time to get better. The gas is because things were standing... [ more ]
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J-Pouch ForumsGeneral Discussion
Gas Issues, any off the wall ways to cut down gas.
dgtracydgtracy
phonix2g Phazyme. Works wonders. [ more ]
CeeeeCeeee I don't know what you mean by excess gas. Are you expelling gas while NOT sitting on the toilet or are you just expelling gas while emptying your pouch while on the toilet? I ask because I, for one, welcome gas while emptying my pouch while on the toilet. It is my duct cleaner and signals the end of the bowel movement session. Without it, I don't feel as cleaned out! I don't usually have excessive gas while not on the toilet. Sometimes when I lie down the gas escapes. My pouch is over 10... [ more ]
Spooky Excessive gas can be caused by SIBO or pouchitis, so you may want to have these issues ruled out before you start any major diet changes, which may not be entirely necessary for you. That being said, I have been taking Align probiotic for about 3 months now, and I have experienced a noticeable reduction in gas. It took about 4 weeks of taking the Align daily for the changes to become really apparent. I should add that I've cut out virtually all pasta from my diet as well, except in... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Paralytic Ileus (intestinal shock)
Khaos247Khaos247
Khaos247 Thanks for the information and insight. I really appreciate it. I am going to try to see the smaller problems that may cause this and hopefully that works. [ more ]
Jan Dollar Paralytic ileus is usually associated with the immediate post op period, not a decade later! That said, there is something similar called intestinal (or chronic) pseudo obstruction. It is essentially the same thing. It is pretty rare, but it sounds like what you are describing. It could be that there was nerve damage during your surgery, or just something that developed over time. http://digestive.niddk.nih.gov...s/pubs/intestinalpo/ Are you taking anything to slow the gut (like Imodium or... [ more ]
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J-Pouch ForumsGeneral Discussion
Accidents Overnight?
Z Zee87
Zee87 As a matter of fact a lot has been going on in the past few months. Some good, some bad. And since this was around the holidays I've been eating way more than usual! The accidents are still happening overnight but still not in the daytime. I'm going for my flex sig scope in about a month, so I'll see if I can "hold it" till then [ more ]
phonix2g Before considering pouchitis you might want to go back to when this first started and see if there were any changes at all that you or your body have made. Diet? Time you have your last meal? What your meals consist of? Additional stress that you are taking on? Change in medication? There could be alot of contributing factors. I would just make sure you rule out every possibility you can before you jump directly to the pouchitis diagnosis. I know you said you've had your pouch for over a... [ more ]
Jan Dollar Surgeon or GI doc, whichever one you usually see, is fine. I find that my GI is more accessible than my surgeon. The primary and hallmark symptom of pouchitis is increased frequency. The symptoms you describe could easily be your first warning that things are changing. If you ignore it, you'll likely develop daytime problems too. It could just be a virus, but since it has been a couple of weeks without improvement, it makes sense to follow up with your doctor. Jan [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Want baby, but 39 and scared bc history
A AN
JJA After doing well with my pouch for several years, I developed complications with fistula, damaged sphincters from the surgery for that which led to fecal incontinence, pain and other issues. While GI & OB said their was no reason I couldn't carry a fetus to term and should expect the baby to be healthy, and they agreed a C-section would be in my best interest, Neither could really say how a pregnancy would affect my body. In fact, GI said, "Well if you want kids so badly, why don't you... [ more ]
jodiloveslife I would talk with your OBGYN and go from there. I had and HSG test showing a blocked tube(had 2 ectopic pregnancies) I am 38 and my doctor suggested we skip all the trying with IUI's, chlomid, etc. and go straight to InVitro. I am now 17 weeks pregnant!!! I actually feel incredible. I feel better being pregnant. My stomach is never upset, no pouchitis, and the bowels slowing down is awesome Best of luck to you!! [ more ]
clz81 AN...a pregnancy with a J-pouch really is not all that different than with a colon. Many women have difficultites getting pregnant due to scar tissue or blocked tubes, but your body should handle a pregnancy just fine. At 39, you may have a bit more trouble conceiving, but you could also fall pregnant right away! I would suggest you meet with your OBGYN and have things checked out sooner rather than later so you know if you have any obstacles to hurdle. I wish you the best of luck! [ more ]
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J-Pouch ForumsK-Pouch Korner
K pouch surgeons updated
W woodstock69
woodstock69 Update regarding Dr Beck in NOLA. He revised a kp, valve and stoma in November in 2.5 hrs. Excellent surgeon, unfortunately complications post op lead to drain for old hematoma and abscess drain, longer than expected stay, on call weekend staff not part of Beck's team and did not meet any patient needs, dismissed the cries for help and overlooked the abscess which was not dealt with for 4 days post op and still recovering and on TPN. Indwelling catheter was in much longer due to the abscess... [ more ]
JaniceM Hi Donna, yes, you were right. Dr Worsey said he is beginning to train Dr Bermeister and having him assist. ! Thanks Josh! [ more ]
Donna H That's strange that someone would tell you that since on Oct 29, Dr. Bermeister was right there assisting Dr. Worsey with my surgery. And like I said, Dr. Worsey said he is young and smart and on his way to be a KP surgeon. Hey, maybe after a few surgeries he decided it wasn't for him or maybe he is moving on to another location. And good luck with your surgery, Janice. It's sounds like it is very complicated and I am wishing you the best. You are doing your homework and getting the best of ... [ more ]
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J-Pouch ForumsGeneral Discussion
Fodmap
L LizTish22
suebear If you're on this to lose weight, then I also recommend you increase your exercise, which will help you to increase your consumption of plain water. Water never tasted so good as it does when you're in a full sweat. Sue [ more ]
Scott F I'd suggest thinking of water as medicine rather than a beverage consumed for pleasure. I don't have your challenge (of disliking water), but I still gulp down my morning water in one go, simply because I know my body needs it. I hope this helps you a bit, but I know it may not. [ more ]
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J-Pouch ForumsGeneral Discussion
leaking from bottom after permanent ostomy
BP Billy P
Billy P Thank you for your reply...there is no pain and no odor just what I think is a lot of draining for something that is supposed to be sewn shut...sometimes if I'm standing or after a walk it will literally drip onto the floor or if I put some tp back there it will b soaked...I felt back there and its crusted over everywhere except one small spot near the front where the dripping is coming from... [ more ]
Kate1026 It should just be the wound leaking as it heals, which can be normal. Have you had your post-op appointment to check on how it is healing? If is starts to hurt more, or the leaking increases, contains puss or smells bad, call your surgeon's office ASAP as it could be a sign of wound infection. Good luck. [ more ]
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J-Pouch ForumsGeneral Discussion
Pelvic Abscess
K kenneth29
Jan Dollar I had a pelvic abscess with a drain through the butt cheek that I kept for about a month. They did weekly CT scans until the abscess pocket had collapsed. The presumption was that there was a slight leak right after surgery, before everything healed. I had a 1-step, so I did not have an ileostomy, so it did not delay my takedown. That was in 1995, and there has been no recurrence. Hopefully, you will be as fortunate. No guarantees, but it certainly is possible. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
tincture of opium - nothing working to control frquency
BM boy's mom
urbhusker I've been taking 3 drops 3x/day (morning/Noon/night) and can't say for sure if it's doing anything. I did start taking two Pepto tablets and 3 Immodium tabs before bed and I've cut down down my frequency to one (or none) during the overnights. Also on Doxyc and Konsyl fiber so not sure what is working. Was having issues still with the overnights before taking the pepto and Immodium (started about two weeks ago) but things have quieted down some. No side effects from Opium that I know of. [ more ]
chiromancer I had my pouch removed and no longer need the opium but when I was taking it the dose was .6ml. It helped with frequency a lot and somewhat with the incontinence. I really didnt experience any significant side effects. I usually took it when I was going out and wasnt on a regular schedule. I sometimes would take at night but mostly during the day. I would mix with some water as it tastes rather foul, but you get used to the taste after a while. It is a medicine from the 19th century and I... [ more ]
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J-Pouch ForumsGeneral Discussion
laparoscopic surgery dilemma- are there risks with a J-pouch?
S Solaris
Solaris @ Popsy: Thank you, that is so nice and sweet of you, I got so touched when I read it that it made me cry! 4 years of struggling so far, just hoping so much we will be blessed with a child. I send you all the good energy I can, and keep my fingers crossed for you. Bless you xxx [ more ]
popsy Bless you Solaris. I will let you know in a few weeks. But in the meantime, I wish you soo much luck in your IVF and I said a little prayer for last night. Your message above made me tear up a bit too, I think you have some wonderful people around you hoping for the miracle you deserve.I'm crossing everything and more xxx [ more ]
Solaris Popsy: Best of luck to you, I have my fingers crossed. Let us know how it went. xxxxx [ more ]
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J-Pouch ForumsGeneral Discussion
Plant Enzymes for Energy
G grandmaof1
Jan Dollar Well, if you go on the assumption that you do not digest your food properly, then plant based digestive enzymes are supposed to supplement your deficient supply. However, it is unclear to me why surgery on your colon would alter the digestive enzymes your pancreas excretes, since it is nowhere near your j-pouch. I think that the theory is that you need more enzymes than your body makes because of a quicker transit time. Still, your small intestine is the same length, and that is where... [ more ]
grandmaof1 Jan, Do you know exactly what plant enzymes do? And would they help for jpouchers? I have no energy at all. I am so tired of being tired. I did have blood work done and everything was fine except for my Vitamin D. So I have a prescription for that. Otherwise everything looked great. Thanks so much, [ more ]
Jan Dollar Need more information on that, since plant enzymes do not provide any "energy." Perhaps they are saying that since you have low energy, you are not absorbing your food, and you need additional enzymes to digest your food. That is connecting a lot of dots without knowing what your needs are. I could make the same argument about you getting more sleep, but with a different set of dots, or iron in your diet, etc. Jan [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Surrogacy?
M mummytobe
mummytobe Thanks so much for your advice. It is so hard when the surgeon knows it is very risky - however he is hesitant to write anything down due to the legal risks this may encounter....it is so sad that the legals is what scares them. Thanks so much for replying. My GP and other doctors have said surrogacy all the way as it is an available option for me. It is just the clinic who are a bit on the fence about how critical it is. Here in Australia you can only do surrogacy if it is life threatening... [ more ]
clz81 I think you really just need to weigh the risks and consider what you are willing to put your body through. If you are still prone to all these issues, they are not likely to go away during pregnancy. Obstructions and such are hard enough to deal with when you aren't pregnant. If you've been free of these issues for a year or so, then it looks a lot more optimistic for you. No surgeon wants to put a pregnant women under anesthesia for a hernia repair. I don't have any experience with hernias... [ more ]
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J-Pouch ForumsGeneral Discussion
could this be a partial blockage?
Kate1026Kate1026
Spooky It's hard to say because your symptoms are transient and seem to pass fairly quickly. I would lean more toward virus/food poisoning, given that the symptoms seem to come on suddenly, though of course it can't be ruled out that some of these instances might have also been due to a partial obstruction. In the past, I did have an excessive liquid, bile-like output with one of my more severe obstructions with the loop ileo; though with my other obstruction requiring hospital treatment (both... [ more ]
Kate1026 hi Scott! I don't know what other peoples' experiences have been like, but I also had massive liquid output with my many stoma obstructions, as if my body was trying to flush out the obstructions. I stopped eating at suspicious-looking takeout restaurants many years ago after spending 3 days in the hospital thanks to a particular ethnic restaurant I have chalked it up to food poisoning or a 24-hour stomach bug many times and not given it another thought. But now it's happening more often,... [ more ]
Scott F "Massive liquid output" sounds more like a viral infection or food poisoning than a blockage, at least to me. Does it happen most often after eating at that suspicious-looking take-out place (just kidding, mostly)? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Blood, Blood and more Blood
Rene.maldonadoRene.maldonado
Jan Dollar Sounds rough. A few questions though. I know you had your colon removed, but do you have a j-pouch or do you still have your rectum? If you have your rectum still, then this can be proctitis, from UC in your rectum. If you have a j-pouch, bleeding from the small rim of retained rectal cuff, cuffitis, is also a common complication. This is probably more common than bleeding hemorrhoids. But hemorrhoids are not terribly uncommon either, especially if you have been straining. While you are... [ more ]
Scott F Blood can look like more than it is. It takes very little to make the water in the toilet quite pink, for example. The best way to get an objective understanding of how much blood is involved is with a CBC (complete blood count). If you're bleeding significantly every day you will become anemic (or already are). In addition to controlling the source of the bleeding, once it's identified for sure, taking iron supplements will help your body replace the lost red blood cells. Good luck! I can't... [ more ]
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J-Pouch ForumsGeneral Discussion
Hello everyone, new chapter of my life begins
S Shainy
Jaypea My ileostomy output was totally unpredictable but I always had to set my alarm to get up once or twice in the middle of the night to empty the bag or I would generally wake up in a terrible mess. Now that I have my j-pouch I don't need to wake in the middle of the night. My j-pouch activity is also unpredictable. Sometimes I am in the bathroom every 45 minutes for a few hours and other times I can go 3-4 hours with out a trip to the loo. Touch wood I have never been incontinent with my... [ more ]
PoucherInTO Hi Shainy I eat my dinner by 6/630 pm and my ostomy bag still fills a bit upon wakening in the morning. When we go to sleep, our gut slows WAY down, and then it wakes up again when we do, and walking around in the morning, showering, eating breakfast all stimulate the gut to kick in. So, it's common that some people will have last night's dinner come out into the bag in the morning. [ more ]
mgmt10 It's because the loop is so much more higher up so transit time is faster than with an end. There are quite a few people on this site who have gone back to an ileo for various reasons. I suppose its individual but I don't think there is a problem with intestine length going back to an ostomy. [ more ]
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J-Pouch ForumsGeneral Discussion
Anal irritation
V vatlily
jeane This is similar to what I know do after failed rectal treatments etc to help with my constant itching, burning and irritation. I am now off antibiotics finally also. When I discussed this s my colorectal surgeon a couple of years ago he saw no issue with this. Hell, I have been inserting rectal suppositories almost continually fur over a year as I do have some active ulceration as well. I can't imagine a wipe is going to cause concern as long as you are gentle. I go through way more wipes... [ more ]
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J-Pouch ForumsGeneral Discussion
Self Dilation - Candle??
n/an/a
pouchington thanks so much [ more ]
Jan Dollar I don't know if there is a standard size, but there are different sizes. I would suspect your doctor chose the size based on the size he dilated you. This is why I think it is possible that the stricture is reforming already, if the prescribed dilator will not pass. Using topical anesthetics might be a good idea, but you still should not be forcing it. It should be gradual and even pressure. Jan [ more ]
Disneynut I have done this. I put saran wrap around the candle and then put hemorrhoid cream on it. It really helped a lot. I like the idea of a glove finger. [ more ]
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J-Pouch ForumsGeneral Discussion
I get so sad
C CathyA
lholdem Cathy, Take heart - I had UC for 13 years and was so distressed about surgery at first. Now that I've got it done I've been SO much healthier. Surgery really was an answered prayer for me. God is good and He has your daughter in His hands. Feel free to message anytime. [ more ]
Lesandiego I don't believe this site is just for the 15% with problems. For me personally, I like the connection of communicating with people who have a common past. I find this site extremely educational and useful for minor issues that I may be experiencing without calling the doctor. Members, as well as doctors are unique in suggesting tricks and tips to help prevent and deal with future issues. Sometimes newbies are not able to understand or communicate symptoms that are completely normal to... [ more ]
Rebe0505 dog lucky you!!your operation came out the way we all hoped ours would..but unfortunately this is not how the cookie crumles for some of us..with that said..most people fair quite well like dog ..and chances are very high newbies will do well.. this site often is about the 15 or so per cent who have various issues with the pouch..not the majority.. [ more ]
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J-Pouch ForumsGeneral Discussion
7 Years Without my Colon...
SpookySpooky
JeffDC Happy anniversary, Spooky. [ more ]
hfc I realized I have gone ten years to the month since I had my colectomy and j-pouch. I am still kicking, cynical as ever, and have not slowed down. Last year, I did a half ironman, wife and I went to New Zealand to do a @#$% harder than #$$% trail marathon. This year is South Africa Comrades 56 mile run (not sure I will be able to out run lions!) Life goes on. Hope the next ten years will be as good! [ more ]
Spooky Thanks everyone! This site is great. I didn't have the luxury of having a lot of information before my surgery, under the circumstances, but I now want to share my experiences so that others won't have to go in completely blind like I did. Yes, motherhen, my initial surgery was a subtotal colectomy, which means the rectum was originally left intact. It was performed on an emergency basis. At that time, the doctors weren't sure if I would be a candidate for the j-pouch, but there really... [ more ]
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J-Pouch ForumsPouchitis
Simponi injections for pouchitis
TinatTinat
Jan Dollar It can take up to 3 months for full effect. For me, it was about 4-6 weeks before i noticed it. Jan [ more ]
Tinat Hi Jan, that is so good to hear, do you remember how long it took effect? And do you still need to take any antibiotics with it? It's been a few days now and I'm not noticing any real difference and am still taking antibiotics with it. [ more ]
Jan Dollar I've been on Simponi for several years, for arthritis, not pouchitis. However, my pouch has never looked better and I have fewer instances of pouchitis and cuffitis since being on it. No allergies yet. Like Himira, it is a fully humanized protein. Remicade is mouse protein. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Long time no see! Surgery incoming
flyteflyte
mgmt10 Just wanted to say good luck and wishing you a speedy recovery! [ more ]
PoucherInTO Hi Sarah I had my jpouch removed and butt sewn up this past October after 18 years with the jpouch. My butt healed up just fine, no issues there - just a bit of discomfort at times but the external sutures dissolved in about 6 weeks. I am really getting used to my perm ileo and can appreciate the freedom and improved quality of life I now have. Feel free to PM me if you have any questions [ more ]
BillV Last April, I had to have surgery to remove my J pouch and I got a “Ken but” in the process. The rest of the surgery was for a BCIR (similar to a K pouch) that enables me to live without an exterior attachment (a quality of life issue for me). My bottom healed up nicely by the time I left the hospital and I had no problems with it. What I like about my procedure is that I can do anything I did before my first surgery. A number of people have had one of these procedures done at a later date... [ more ]
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J-Pouch ForumsGeneral Discussion
Calmoseptine is still with us
Bill JBill J
Jaypea I had to get my Shopper's Drug Mart to order it in for me so I got two tubes. Gosh…a little bit goes a long way. I too would like a travel size tube. I find that the menthol burns my butt a little bit. It feels quite warm, like Vick's Vapo-rub on my bottom. It does protect my skin very well though if I can stand the heat. [ more ]
Holly M Roberta, how are you doing? [ more ]
RLC Love It and it has been a lifesaver! Thank you for your support! Roberta UC 2007 j pouch to ileostomy 2/29/2012 (Leap year) takedown 4/30/2012 [ more ]
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J-Pouch ForumsHelp! Need advice now!
I want to ask the right questions next week at UCSF GI
LS Long Slow
Long Slow Thanks again Jan You have given me some great background and I now I can ask some more informed questions..such as I was diagnosed with UC and had colon removed, then some disease comes back and moves up small intestine. Pathology does not show I have Crohns but I have something. What is it? UCSF will have lots of answers and recommendations. Peter [ more ]
Jan Dollar Was this your IBS or IBD? IBS is not an inflammatory disease (that is irritable bowel syndrome). I am even more confused, if they are calling it pouchitis just because the inflammation moved into your small intestine. Wouldn't that just make it ileitis? To be pouchitis, you would need to have a pouch (reservoir). The big question if this has moved into your small intestine, is whether this is Crohn's or UC. If there is a question of Crohn's, then that definitely will factor into whether a... [ more ]
Long Slow Thanks Jan you are awesome! I think they call it pouchitus because my IBS moved up my small intestine. The biopsy site is at 25 cm but they did not sample everywhere. These are great questions and thanks for reassuring me about the UCSF team. They did a great job with the liver transplant. I guess I will have to start looking for a racing suit that will accept a small swimming bag. Peter [ more ]
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J-Pouch ForumsPouchitis
Question about the symptoms
Patti AnnPatti Ann
Rebe0505 go to visit your dr.. short term antibiotics could fix it if suggested by dr. [ more ]
Scott F To me it sounds a bit more like either SIBO (small intestinal bacterial overgrowth) or an upper GI problem unrelated to the pouch. I second the suggestion for a visit to the GI doctor. [ more ]
liz11 Yes most likely. Suggest a visit with your GI doctor. Usually a course of antibiotics will get you sorted. good luck [ more ]
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J-Pouch ForumsPouchitis
Rebbe-Thank You! Grain free! sugar free!
AllyKatAllyKat
Rebe0505 allycat you made my day really!!i am so happy you gave it a complete go..its really all or nothing..your results i believe are real..i am maybe two months no antibiotics will stop counting now sure the starch carb free and no sugar(except fruit in my case,and whatever is in veggies )fyi i tried a bite of raw honey on an almond bread i make..reason..it was approved in scd...actully had some in my almond ingredience ..no negative effects..hold out you can do it!!!...just think what it means if... [ more ]
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J-Pouch ForumsPouchitis
Kifer
AllyKatAllyKat
AllyKat I've been making homemade now for about a month. It has more probiotics and extra vitamins than Lifeway although Lifeway does taste better, but don't tell that to my cats, they LOVE my homemade, lol! I'v even made cottage cheese with it. [ more ]
liz11 Lifeway plain is 99% lactose free. [ more ]
Scott F Lifeway isn't actually lactose-free, but it may be fine for many people with lactose intolerance. [ more ]
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J-Pouch ForumsGeneral Discussion
Incisional hernia repair - what was your experience?
LesandiegoLesandiego
Lesandiego I had 2 surgeons during the operation (just to have another set of eyes). During my follow-up appointment, I asked the Dr. if she saw "anything interesting" while she was in there. She reported that I actually had 3 hernias (needed a bigger mesh) and a lot of weakened fascia. So, no more 6-pack abs for me. I actually look more like a 2-pack abs. A big one on the left and a big one on the right side of the belly button and my incisional scars. Swelling has gone down tremendously, but took... [ more ]
Dog When I researched incisional hernia repair, lapro was not advised as there was a higher rate of recurrence and adhesions. Hopefully, you don't have any issues! Mesh also can create adhesions, and if the hernia is small, you might not need the mesh. Mine was repaired and although I thought I had a recurrence a few months later, the surgeon said it was just "fat" stuck in the repair and I was fine. [ more ]
Lesandiego I went back to work after 7 days, but I only work 5 hours a day and my job is sedentary. However I go downhill from noon until bedtime. Gravity still affects my pain and pouch a great deal. For the past two nights I have cried myself to sleep due to rolling from left to right while trying to get comfortable in a prone position. I don't know what exactly is hurting, but it is not my laparoscopic wounds. It feels like tendons or some kind of pulling and tearing internally. [ more ]
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J-Pouch ForumsGeneral Discussion
Bleeding Bottom
J Jaypea
Dog Also try cleaning your bum by using a hand shower wand instead of wiping. Then "pat" dry. . .no rubbing. If the blood is bright red on your toilet paper, then it's most likely bleeding right from your anus and like Jan said, irritation. [ more ]
Jaypea I have zinc cream that is 30% zinc. It is like cement, very dry and thick. Perhaps I need to use something with less zinc content which would be more comfortable to apply. [ more ]
TE Marie Calmoseptine, if available to you, they are a sponsor of this site, see the top of the page, and the best I've found. Also please follow Jeanne's advice and have it checked out if the bleeding continues. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
emptying your pouch
pouchingtonpouchington
Dog A friend turned me on to this, try lifting your knees up towards your chest while on the toilet. Basically, you are trying to imitate a squatting position instead of a sitting position. His theory is that it positions your body correctly for evacuating your bowels. I think he uses a ball on the bathroom floor to elevate his legs. [ more ]
mgmt10 If everything is working properly, it should just come right out with minimal pushing. The only time I had difficulty and had to strain was when I developed an anal stricture that needed dilation. [ more ]
CeeeeCeeee Coughing hard while sitting on the throne. That cleans me out! [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Surgery in my future
I indycat23
Dog I'd recommend University of Chicago Medical Center. If you go laproscopic, just be sure your surgeon is qualified to do it that way. I was sitting and talking the next day after my total colectomy. Yes, I said sitting. [ more ]
TE Marie I don't know about Buffalo but if your insurance covers Cleveland Clinic they are highly regarded by many people on the board here and are one of the top rated hospitals to go to for the surgeries. I strongly suggest laparoscopic surgery to avoid adhesions. I had to have an open surgery due to adhesions from prior abdominal surgeries. Please research cuffitis as well. It is rare, please discuss surgical prevention with your potential surgeons. [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
depression
K KeepFighting(Manny)
Dog It is possible you, like me, are very sensitive to medications. You basically just had your insides rearranged. I guess one way to think about it, a boxer just went 10 rounds on your insides. Took me about 16-18 months to fully recover from all of my surgeries. However, I had almost all of them within a year, so I might be an exception. Give yourself permission to feel sorry for yourself for 5-10 minutes, cry, throw things if it helps. Just know you are not alone and what you are... [ more ]
Markus Hi Manny, I have a 20+ year old pouch and suffer with depression. For me, depression started a few years ago, after I developed additional health problems (chronic fatigue, fibromyalgia etc.). I understand, and can relate when you say you don't feel like "the old me anymore". I have found it to be the best way to describe to others how I feel. I have good days, and bad days. Medications help a little bit. Sometimes I find the best way to cope is to distract my mind. Hopefully you can find... [ more ]
phonix2g Hey Manny. I can definitely relate to how your feeling. I just turned 31 and look at all the people I work with that are around my age and I am jealous. They don't realize how lucky they are too have a normal working digestive system. I got my first surgery in February and it's only been a rough road for me from then on. I see a therapists and it helps alot. I was screwed up psychologically, mentally, emotionally after my surgeries and I knew I needed to find help that's why I set up therapy... [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Has anyone tried fecal transplant for pouchitis?
HL Hello Les
Dog Also take a look into a mild hookworm infection. Hookworms secrete a chemical that tells your immune system to calm down. Most people can't get past the "ick" factor, but I would have tried that before my colectomy had I known about the option. [ more ]
dawn58 Allycat, I think we have the same surgeon. Also, I didn't know fecal transplant was also for pouchitis. Good to know and hope it works. Please keep us posted. [ more ]
AllyKat Ps Less, I'm at the end of my rope as well. Homemade kifer is making a difference along with 1000 mg turmeric. I do use canassa and pentasa. My surgeon told me to rotate probiotics every three weeks too. [ more ]
See all 12 replies...
J-Pouch ForumsGeneral Discussion
Cramping
M mndeti
Dog Where is the cramping? For me, if I remember correctly, the cramping/sharp pains were between my anus and my tailbone. Try and go back to simple foods and water to help ease the cramping for a day. Hot baths worked for me as well to ease the cramping. (by simple foods, I mean things you know don't cause problems. In my case, that is fruit, salads, etc. . .those things just fly through me and don't make well-formed stools.) And since I live in Colorado, I have medical marijuana and that helps... [ more ]
lholdem Hi mndeti, I also had cramping after my takedown surgery - it was much worse for the first couple weeks (I would have to do deep breathing or some moaning through it!)and has gotten better though not disappeared. For me it's definitely associated with gas passing through, so it's better when my diet is better. My dr. said it's likely due to scarring or narrowing of the bowel where it was reattached. Not sure if it's the same as what your husband is experiencing, but it seems most symptoms... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Can anyone relate?
P phonix2g
Dog Please don't let yourself get frustrated and disappointed. You're just along for the ride while your body heals, there is no benefit from placing the blame on yourself, IMO. Just adds stress. . . and stress can complicate the healing process. I think it took me about 18 months to get to where I felt like 100% again. My surgeries were all pretty close together though, so that might account for the length of time it took me to fell 100% again. [ more ]
GinLyn Those symptoms could also be indicative of a low-grade infection, which blood work would also help pinpoint. Do have it looked into; it doesn't sound normal at all for your stage of recovery. Hope you're feeling better soon, Gin [ more ]
RLC I, too, have had the same issues bone pain, fatigue, vomiting, nausea and not sleeping well at all! I did not go back to work! My surgeon and GI are completely baffled with me! Headed for a second opinion from a GI next month! Had an EGD done in Dec. and found inflammation in esophagus and stomach. I was given sucralfate 1 GM to take 4 x a day. That seems to be helping! Still go 4 to 10 times a day depending on how much to eat. I really have tried everything Eastern and Western med. Feel... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Where to have my J-pouch surgery???
CC Charlie cbnice@verizon.net
Dog I'll chime in a bit late, but my surgeries were done at the University of Chicago Medical Center. At the time, one of the leading Doctors/Researches on Ulcerative Colitis was on staff. http://ibdcenter.uchicago.edu All of my surgeries (except the hernia repair) were done laproscopically using the DaVinci surgical machine/robot/thing. The surgeon(s) were specially trained for this surgical technique. [ more ]
Sparkman I also had my j-pouch surger in NYC , like uc warrior said dr Joel Bauer is great, but I went with another partner in his group named David chessin, he does take insurance. He's a great surgeon.. [ more ]
TinCan Charlie, I second the opinion of Kathleen (kiki105) to not underestimate the quality of local providers and the value of developing a relationship with someone close by. I personally live near Rochester and had my surgery at Highland hospital with Bastian Domanjko of the Rochester Colon and Rectal Surgeons (also using a DaVinci robot). My experience with Highland hospital (particularly the group on West 6th) and Dr. Domanjko has been completely positive - including my ostomy nurse who was... [ more ]
See all 11 replies...
J-Pouch ForumsPouchitis
Acupuncture?
napleseyesnapleseyes
Jan Dollar I tried acupuncture for neck pain from spinal stenosis and general arthritis pain. Didn't help much, but was quite relaxing. I saw no difference in pouch function. Mine didn't even cost more than a standard office copay, as my HMO has an acupuncturist on staff (you have to be referred by pain management). I wanted it to work and really kept an open mind, but... Jan [ more ]
elliepouch I use acupuncture regularly, I do find it helps with j-pouch distress but I am super intense about going early (as soon as symptoms appear) and often. I also up my probiotics to twice a day at least any time I think my gut balance has gotten off. I have not had full blown pouchitis in several (probably 5) years. The way I have made the acupuncture less expensive is to go to an acupuncture school. I try to pick a student that I like and go to them as consistently as I can until the graduate... [ more ]
TE Marie I tried it and it didn't help. It was for j-pouch problems in general and my acupuncturist is excellent. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Anyone have a pouch for reasons other than UC, Crohns, or cancer related issues?
T TragicChild
Spooky Hi Steve, Sorry to hear about your situation. It's never easy to have a colectomy, no matter what the reason. The short answer is yes, pouches can indeed be done for reasons other than IBD or cancer, including FAP, chronic motility issues, severe diverticulitis, and even trauma. If you want to pursue a j-pouch, the next logical step for you would be to meet with a surgeon to discuss what your options are. It's very possible you are a candidate, however, I would caution that if your entire... [ more ]
See 1 reply...
J-Pouch ForumsWomen's Health & Pregnancy
Questions!
E elliepouch
elliepouch Thank you so much! This is really useful to hear. [ more ]
clz81 I can't answer all your questions, but here is my experience: 1. I was able to sleep on my stomach til around 20 weeks as I'm a stomach sleeper. After that, I did all side sleeping, but positioned myself with pillows so I was still kind of on my stomach. 2. At the end I was going all the time, but I had/have chronic pouchitis and my meds weren't working so well in the end after being on them so long. Unisom at night really helps though in the 3rd trimester so you aren't waking up with every... [ more ]
irenepuss hi ellie I have had one baby 2 years ago. Scars were fine. you wouldn't be able to lie on your stomach as it's too uncomfortable. i used to sleep on mine but don't any more. I had no problems with my pouch first time round and don't remember increasing my frequency. however this time my guts are not so good and it's increased twice fold to about 10 times. I had no leakages either. Keep doing pelvic floor exercises. I also had IVF both times. I am also having a section again. good luck-it's... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
input from those with UC vs. Crohn's diagnosis
clz81clz81
Sean NY I was diagnosed with UC in 1999. Suffered for 5 years and had my colon removed and j-pouch created in 2004. Since then I take 8+ lomotil daily, still have plenty of loose stools 9-15 per day, have had pouchitis several times in the past year, and am questioning what disease I have. With my colon removed my UC was cured, but I still have inflammation. So, do I have crohn's? [ more ]
RLC I am going to add to this as well as my prometheus test came back with crohn's and all my biopsies of the colon before J pouch came back as ulcerative colitis. I am going to be 1-1/2 years out with j pouch and I can honestly say that I felt disease free for one week and then trouble ever since. I do monthly vomiting and nausea along with going several times a day. My GI finally prescribed a med. sucralfate after an upper GI because of inflammation and some ulcers she saw in the EGD. My lower... [ more ]
boy's mom We had a difficult time deciding whether my son had crohns or not - 3 drs saying he did and 3 saying he did not. He had a video caspule that did show some ulcers in small bowel, but even so some drs thought that was not definitive. He continued to have what seemed like SIBO and the antibiotics could not control his inflammation after a while. Ultimately he stopped absorbing nutrients - shown on blood tests and in fecal fat test - and was nauseated, and in pain --so he began crohns meds. [ more ]
See all 7 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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