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J-Pouch ForumsWomen's Health & Pregnancy
2nd Round of Laparoscopy Surgery Today :(
C court14047
CeeeeCeeee I had a complete hysterectomy in December. The surgeon tried to do it laparascopically but couldn't because of adhesions so he opened me up along the same scar line as my previous proctocolectomy. Easy surgery for me. Easy recovery but it took awhile for my appetite to return. Was slightly nauseated for days and figured it was a result of the anesthesia or ???? So, I ate very little of whatever I wanted to eat and I ate fairly frequently. In about two weeks, my appetite returned to normal. [ more ]
skn69 Good luck Court, Clear fluids the first day, full fluids the second and light (very light ) foods for a couple more...blended veggie soups, yoghurt, cream desserts, smoothies, ice cream etc... Avoid the rice/pasta etc until day 5 and you should be just fine. Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
Metformin and Crohn's or J-Pouch
KangaRoeKangaRoe
CeeeeCeeee Have J-pouch. Take Metformin....have for about three years. No effects I'm aware of. [ more ]
KangaRoe Jan, I am going to talk to the doctors but I will stick it out. I have been giving myself the enemas and I am already seeing improvement. After seeing your post I am pretty sure it is just one of my flares and not the Metformin. Thanks again for your wisdom. KangaRoe [ more ]
Jan Dollar That's why I asked, since the side effect is also a disease symptom for you. Are you going to try to stick it out a little longer, or ask to switch to something else. Jan [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Anyone have pouchitis and NOT on antibiotics?
J jeane
vanessavy According to what I know. The pouchitis has to be in remission to fight it with probiotics like VSL. [ more ]
mgmt10 Hi kjeane, I don't have any experience with pouchitis (yet) but I was reading about natural antibiotics. Maybe this would be something that would help you if your pouchitis isn't too bad. Dr. Oz talked about it on his show once too. Google natural antibiotics and a whole bunch of stuff will come up. Garlic I know is one and there are many others. Maybe worth a try? [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
The screaming has stopped.....
Grieving Old pouchGrieving Old pouch
TE Marie kjeane, I hope you are feeling better and it sounds like you have found a good local GI! [ more ]
jeane Grieving, I understand your apprehension. I was repeatedly told I had low grade dysplasia in my colon (with second opinions indicating it was indefinite). I didn't care how much I read about how difficult it can be to distinguish LGD from inflammation, I was REALLY pissed off when my colectomy came back clean with no dyplasia and I was left dealing with the outcome. I swore no one but my surgeon would ever touch or scope my pouch. Well after a year and almost 30000 OOP in numerous medical... [ more ]
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J-Pouch ForumsGeneral Discussion
...
Randers.USARanders.USA
Jan Dollar Quite interesting. However, I hate it when newspapers and such use IBD and IBS interchangeably, as if they are the same. Clearly, the study was about IBD, and now people are going to think that this gene defect is going to have something to do with irritable bowel syndrome. Just a pet peeve I guess. To me it is very interesting how they keep finding links to the microflora/fauna in the gut as being related to so many diseases. The evidence is much more solid than any food related... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Bad J Pouch
FM Former Member
samantha1803 Hi Fiona, I was in your EXACT same shoes. I had the exact same story with my bag/stoma everything + was allergic to the adhesive that held the bag on. I had my surgery in Minnesota as that is where I am from. I had the same 20 minute, "transit" time--mouth to toilet. I was referred to the mayo clinic after 3 years with my pouch. They did all the tests and and then some, meaning on all my body systems. The conclusion was to get rid of my pouch and go back to the bag. Well I just couldn't, and... [ more ]
Former Member Thank you so much for all your answers, my head is all over the place but i have written everything down to ask my J Pouch Nurse tomorrow I am on the highest amount of Loperamide some days but alot of the time i cant take the highest amount cos it constipates me and that is just as painful I had some kind of test where I had a catheter inserted into my anus, but i was asleep while i had it done but it woke me as they was trying to remove it cos of how painful it was!!! It has left me red row... [ more ]
liz11 also wanted to add that the diet my doctor put me on to slow down transit is called an "anti-dumping diet". Its primarily intented for people who have gastric bypass surgery but she gave me the techno lingo explaining why it works for people like us and I surely can't explain it all. But here's a link which summarizes the diet. http://uvahealth.com/services/...dumping-syndrome.pdf and yes.. it works.. along with the other recommendations I previously made. [ more ]
See all 10 replies...
J-Pouch ForumsWomen's Health & Pregnancy
j pouch obgyn questions
FM Former Member
court14047 Good Luck!! We are trying right now too First off find your self an OBGYN who you are comfortable with and trust, luckily my doctor has had a few patients with a UC & Crohns past so he has a little idea of what we are going through, however I seem to be the first that has had troubles TTC and of course scar tissue, lots of it. For your appointment have you been keeping track of your cycle and tested if you are ovulating? This is some of the first things they will do along with a couple... [ more ]
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J-Pouch ForumsGeneral Discussion
How do you scream on the computer?
Grieving Old pouchGrieving Old pouch
Former Member I can relate. In so many situations over the years i have felt like a guinea pig! 6 months after my surgery I had an emergency hystorectomy and I had told the dr. that he had to call my GI first and he assured me he did and felt ok to do the surgery. After the surgery I realized he had opened my entire scar again and it should have only been a tiny cut. His response was, " I never saw a j pouch and was curious as to how it functions." I was furious and so was my GI. I ended up having 2... [ more ]
kathy smith Since we are all more educated on j-pouches than even many doctors I think we tend to forget that there is just too much about the human body that can rear its ugly head that doctors are stumped about. I was thinking this yesterday when reading about those FAP'ers Whipple procedures. Whipples have been mentioned here a number of times and I was thinking that I should at least have cursory knowledge of them. But I don't. Everytime I see the term I visualize some sort of plaything (Whiffle... [ more ]
Srf1 I had part of my left lung removed back in 1978 due to a major infection resulting from Pneumonia. In 2004 following a chest x ray I was sent by my PCP for an MRI to check a "large shadow" in my left lung that showed up on the x ray. The shadow turned out to be the missing lobe from my earlier surgery. Same thing, the radiology tech reported it to my PCP who didn't even open my chart to look at my previous medical history. It's frustrating that all of this stuff get's documented in detail... [ more ]
See all 17 replies...
J-Pouch ForumsGeneral Discussion
Pouch Scope Questions
MB Mountain Baker
Former Member For my first few years after surgery i did use my surgeon for scopes. I live in East TX and he is in Dallas TX. I found a GI Dr here but he does not do surgery. However he is very familiar with the j pouch, is very capable of removing all growths that have came up over the years. He just removed two that we thought were too big to come out through a scope but we went to a different hospital with a special scope and he did it. I am very pleased and if major problems come up I still go to my... [ more ]
bratcat The first 3 years after my surgery, I had yearly scopes with my surgeon. I wasn't seeing a GI because there was no need. After getting pouchitis last year, I went to a new GI (pre-surgery I had a pediatric GI). My GI wanted to take a look for himself to see what he was dealing with. I think as long as the GI has an understanding of a pouch, it is fine for him to do a scope. As for prep, it was no food after midnight and both my surgery and GI had me do a fleet enema....much to my dismay. [ more ]
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J-Pouch ForumsGeneral Discussion
Ileostomy Products
B Bethie
CeeeeCeeee I sent my left over ostomy supplies to FOW....Friends of Ostomates Worldwide. They have a website. They supply ostomy supplies to people in countries where getting these supplies any other way is almost impossible. [ more ]
Former Member I think Coloplast makes the best products. I understand why she feels this way b/c they can be unsightly. However, I got very creative with tape. I mold my 10 1/2" bags into a much smaller bag that I wear during the day. I order Leukotape that holds very well and does not come off (Leukotape is something used in PT clinics). The first thing I do is tape the top part down that has the filter. That already makes the bag smaller and since the filters do absoultely nothing as far as I'm... [ more ]
Former Member I was going to say all the same as randi! It will also depend on how much output she has. My son is 8+ now but has had his ostomy since he was 3. He uses the big ol 12" bag so that he can get mostly through the night. He wears what is called a care-fix by a company called nu-hope. It is almost like an old fashioned tube top that he tucks his bag into so it doesn't hang out. There are many belts and products on the market but he likes this one the best. Ostomy secrets has some good ones too. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Pain in the butt
T Tyler44
Tyler44 I have asked my doctor about it. He said that it could be muscle soreness just from going to the bathroom. Kelsey your explanation would make sense. It would be nice if it would expand. Thanks [ more ]
Former Member hi there! i get this too and im three months since everything was recconnected . i think its the pouch stretching out as it bbegins to fill up. the pain has lessened for me but unless there's actually something seriously wrong that pain is a good thing. you want your pouch to expand...makes the time between bms alt longer. good luck! [ more ]
kathy smith This could be normal. I would assume that it's not an abscess since the pain tends to lessen when you sit. But you never know. Have you talked with your surgeon about this? kathy [ more ]
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J-Pouch ForumsGeneral Discussion
Ever use your ostomy or jpouch as an exucse to get out of a ticket?
LaviSinghLaviSingh
Not your average gal! ❤️
LionsPride Just like any other profession there's good cops and ****ty cops but I try to remember what it's like to do their jobs. Especially if you're in an urban area like much of my family. They deal with the worst of society on a daily basis year after year and it takes a toll on their eventual outlook. [ more ]
kathy smith LionsPride - I agree. Law officers often get a bad rap and that's unfortunate. I have family and friends who are in law enforcement and are firefighters. We all just need to be a little more respectful and a little more aware of an officer's (or firefighter's) job (no troopers out here so I think I'm good on that). I can't even imagine being in law enforecment in Seattle these days. I don't know how they hold it together with all those people out to shoot them. And I feel the same about the... [ more ]
See all 9 replies...
J-Pouch ForumsPouchitis
Pouchitis or cuffitis?
V vstRN
jeane That was one of my biggest dilemmas after surgery. I often felt my surgeon was not listening to me as he just assumed most of what I was experiencing was normal healing until I insisted he view my pouch. I can tell you I had many sleepless nights crying on the bathroom floor or sitting in the tub every few hours as the pain was excruciating (rectal itching, burning, broken glass feeling, boot up the butt sensation etc.). I just did not think it was normal takedown healing pain. There were... [ more ]
Randi M Thanks Kjeane-you are one of the few on this forum that has been able to relate to my pre takedown symptoms..it will be interesting to see how this plays out for me..how does one know if they have cuffitis or pouchitis right after takedown? Aren't the signs of these similar to that of healing from the takedown surgery? Frequency, urgency, gas pain, any pain, possible blood..are these to be expected anyway? [ more ]
jeane I can speak to this topic, but I don't want anyone posting on this topic concerned that my experience will become their situation after takedown. Everyone is different and I am just passing along my experience. I had diversionary pouchitis prior to takedown and had all the symptoms you are describing vstRN. My surgeon felt it would correct itself after I started using my pouch. It has been a year since takedown and I just had a scope last week and I still have pouchitis and cuffitis. I was... [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Emergency Denied
FM Former Member
suebear I agree that Kathy could have come up with a better reply. The one that comes to my mind is that your posts often ramble. It would be ideal if you could stick to the point instead of adding paragraphs of superfluous information. Sue [ more ]
CTBarrister They are offensive only in your mind. I used very general descriptions applicable to real world situations and not to specific people. They were meant to cover possibilities of what could happen within the realm of one's experience. I would think you would have better things to do than copy and pasting a litany of quotes in an effort to belittle me or my writing style. The only thing that is offensive is your post and the fact that someone would waste time copying and pasting posts to make a... [ more ]
kathy smith All these labels are offensive. I think you are intelligent enough to get your point across without belittling other people. kathy [ more ]
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J-Pouch ForumsGeneral Discussion
what did you do the month/week/day prior to surgery?
fqfq
CeeeeCeeee My j-pouch is "food friendly". It has been for the ten years I've had it. It hasn't met a food it doesn't like. Or a drink, for that matter. So.....I like the advice which says eat what you like and be sure to walk....now and again as soon as you can post-op. Congratulations! [ more ]
Jpouch8888 My surgeon said to walk everyday. Surgery is a big shock to the body and said it is best to be as fit as possible beforehand. Also, eat nutritiously and drink lots of water. Also, go to the library and rent lots of books and movies to watch for during your recovery. [ more ]
Former Member It's definitely good to live in the moment and not stress yourself out over what tomorrow will bring. On the other hand it is wise to be prepared so you can achieve your goals for tomorrow. That being said, I too am soon to have take down after waiting over a year to have it. For me I feel it is important to nourish my body with healthy food choices, supplements and exercise to prepare my body for healing. I would rather go in feeling strong, healthy and ready than to feel bloated and tired. [ more ]
See all 9 replies...
J-Pouch ForumsHelp! Need advice now!
Scared
M Mo
Spooky I've on several occasions had what seems like a rather large amount of bright red blood right after a BM as well. It's not entirely uncommon, but it's alarming when it does happen. Usually it happens once, and then hours later when I go again, there is nothing. Once it happened immediately after a run, other times I haven't been able to link it to anything. Hemorrhoids are one explanation (and they can be bigger than you might think!), but the pouch also has a lot of blood vessels as well... [ more ]
Mo Thanks everyone. I do have an appointment scheduled for next week. I have the same feeling though, it will stop now that I have actually made the appointment. This has been going on for months though, on and off, and it's a pretty significant amount when it does happen, not just streaks on the TP. I didn't know hemorrhoids could cause that much blood. Thank you, again. [ more ]
samantha1803 i also am a long time poucher---nearly 14 years come to think of it. I just started getting that in the last few years myself. It is most likely hemmorroids. I woould still check with your GI to be sure there is nothing amiss with the cuff area. I do like Kathy's comment though of scaring it away with an appt. You never know though. It sounds like it's been a while since you have seen your dr. [ more ]
See all 6 replies...
J-Pouch ForumsK-Pouch Korner
K-Pouch questions...?
CatajaCataja
Cataja Thanks... [ more ]
vanessavy They prefer not to but there are some chrons patients on their forum that have the BCIR. Some have been diagnosed after, their UC turned to it after and some had it prior. It is a case by case evaluation is what one general doctor told me when my friend with chrons visited me during my stay. I think it depends on where your issues are. My friend isn't eligible since her problems are all in her small intestines and not the colon. With that being said most don't do jpouches for chrons either. [ more ]
dawn58 I recently got the video from Florida about a BCIR. They told me they do not do it if you have Chrons. [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Blockage
FM Former Member
Former Member Thanks a lot for the advice. I am doing a lot better now. I am not passing much gas anymore but I still have some growling when I drink water. Currently, I just drink lots of liqiud and skip any solid food. I'll remember drink lots of water whenever I eat any peanuts [ more ]
kathy smith If you think you have a blockage, the things you took wouldn't be the best thing for it. In the future don't take bowel slowers (Imodium) or pain killers (they also slow down the bowel). Don't eat bulking foods like bananas and ramen. Drink liquids, move around as much as possible, take warm baths or use a heating pad if you're in pain. Drinking warm water is good. I've forced myself to vomit when I've had a partial blockage - that offers a little relief. I've also jumped up and down (trying... [ more ]
beckysmom Is your stomach extended and hard? Have you vomited? These are the signs when my daughter has a blockage, distended abdomen and waves of pain. She finds walking and even getting on her knees and butt in the air and swaying from side to side sometimes helps. I think I have read on here if you start vomiting a lot you may need to head to the ER. I don;t know about the warm water, but it sounds like it could help. Maybe someone else will come along with more to add. Hope is resolves quickly. [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
Ozone enemas?
FM Former Member
TE Marie I still have UC/cuffitis as evidced in my pathology reports. What is an Ozone enema any way? [ more ]
kathy smith I'm not sure how ozone treatments for IBD would work since you have a j-pouch and theorhetically no longer have IBD, right? kathy [ more ]
TE Marie Never heard of them but it I were you I'd try them. [ more ]
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J-Pouch ForumsGeneral Discussion
Ileostomy output
RM Rowans mom
kathy smith That's the nature of the loop ileo as everyone has said. No worries. If she's feeling okay then she is okay. Everything should get much better once she has takedown surgery. kathy [ more ]
CeeeeCeeee I found no comparison between the liquidy output when I had an ileo and the nature of the output once I had the takedown. When I had the ileo I was frequently dehydrated and had several hydration infusions over time in the E.R. Then, I tried thickening the output by eating/drinking Metamucil. It did the job but the Baggie was so much more timely to empty that I stopped using it. I was careful to drink Vitalyte-type products. Best wishes. [ more ]
Former Member I have an 8+ year old who has had an ileo since he was three. Output color changes all the time. His is mostly pretty liquify all the time. What we watch out for is a big increase in volume. In the beginning we measured all his ins and outs to learn what was normal for him. I still do most of the emptying so I know when there is more than usual or if his bag is filling up quickly. I wouldn't give her anything without talking to the doctor either. How long has she had the ileo? [ more ]
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J-Pouch ForumsGeneral Discussion
Pouchitis again =(
B bratcat
kathy smith I was going to suggest maybe it's gallbladder pain you're experiencing because of the diet - fatty and greasy. But the pain is on the left side. But who knows, maybe the gallbladder stayed put on the right and sent the pain to the left. I hope you figure out how to resolve all this and there are no more face plants in your future. kathy [ more ]
Jan Dollar This sounds more like cuffitis to me, because of the bleeding and the fact that antibiotics did not help last time. For cuffitis, the treatment is mesalamine or hydrocortisone suppositories. You can call your GI and see if he will give you an Rx in anvance of your appointment. The diet issues just serve to exacerbate symptoms, but do not cause pouchitis or cuffitis. It makes sense to avoid these things that irritate, at least for now. Then once you are better, moderation is thekey. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
considering surgery.
FM Former Member
SBS Hi Ellie. I agree with Becky, if you're seriously considering the surgery, it's best done when you're relatively healthy. No doubt about it, it's a tough procedure. With that said, though, the body has amazing abilities to adapt. Mine was done 23 years ago this summer and I am very pleased. Like others, I think it was easier for me as I had no decision; that colon was coming out! As others have said, life with a jpouch is not the same as life with a colon, but you adapt and adjust. Prayers... [ more ]
Becky Boo Ellie -- My best advice is if you're considering surgery, do it while you're feeling relatively well (even if you're fatigued)and not wait until it's emergent. It will be a much easier recovery. That said, I had UC for all of about 6 weeks before I was shipped off to surgery emergently. I was actually relieved to have that decision made for me, as I'm not sure I would have willingly done it, but I was so happy (immediately) not to have to face a long-term life of heavy medications,... [ more ]
CeeeeCeeee I had the first step of this surgery when I was 61 and the second step when I was 62. Wonderful results! My surgeon has successfully performed this surgery on 70 year olds so I guess outcomes are determined by many factors, one of which is probably age. I'm now 72 and all is well! [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
back to work
Holly MHolly M
SBS Congrats, Holly. You're one step closer to life returning to "normal"; whatever that may be...lol. Prayers and best wishes in your continued recovery, Steve [ more ]
Debthetraveler That's great news! I went back to work in mid April. I, too, worked half days the first few weeks. At first I was stressed out because of the potential unknown's and what to expect for bathroom usage. I've been lucky and have far fewer bowel movements from morning til late afternoon. Keeping busy and focused on work, definitely helps! My job requires that I travel(usually within an hour or two) a few times per week. I never thought that I would be able to do this already. My struggles seem... [ more ]
CTBarrister It's always great to go back to work when you enjoy your job, and your co-workers. Glad to hear you are back in the saddle and doing your job. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
The wait is over
S Srf1
Srf1 Hi Kathy, I've still got to make an appointment with the surgeon and work out the details. Hopefully that will be in the next week or so. Dr. Varma is going to be my surgeon! If things roll along I'm guessing surgery will either be in late June or early July. Thanks to everybody for your support. [ more ]
mgmt10 Best wishes for a speedy recovery! [ more ]
kathy smith Congratulations and welcome to the fold. Where are you having the surgery done and who's doing it? kathy [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
New pain
J JeffDC
kathy smith I also think it might be adhesion pain. You might want to try massaging that area to try to get them to release. There are also massage therapists who do that. kathy [ more ]
mgmt10 WishingWell brings up a good point about getting it checked just in case it's a hernia. [ more ]
Wishingwell Hi Jeff I have lower abdomen pain on and off for +10 years. I have had MRI scans and various other tests performed in an effort to get to the bottom of it. It has always been put down to adhesions, except on one of the many occasions I had an obstruction where I had to be operated on, when they discovered a hernia as well as adhesions. The discomfort/pain is just a part of life now and I only get concerned about new pain. May be worth mentioning to your doctor if it continues though,just... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Ginger tea
S SarahXYZ
ju330 Mmmm, ginger tea! That was one of the few things that could settle my stomach when my UC was flaring. I'll have to try some now and see if I have the same effect you do with my j pouch. [ more ]
vanessavy Try the instant ginger tea. Get it Asian stores. It should be 100% ginger. SO good! [ more ]
SarahXYZ damn, sriracha sauce! we have different tolerances. I do find ginger in my food to sometimes be too much (garlic too) and I think that the packaged nature might actually help me because it isn't as strong. that said, I do intend to try fresh made ginger tea to see if I can tolerate it just as well. but at $2/box for instant and such good results, it's not broke, so no need to "fix" [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Butt burn or something else?
J ju330
mgmt10 Yes it can burn on the inside as well so what you are experiencing is normal. Get that Calmoseptine. It's a life saver. For me, nothing works better than that stuff. I don't get butt burn all that often but sometimes certain foods will do it. [ more ]
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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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