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J-Pouch ForumsHelp! Need advice now!
1 Week Post Takedown, Fistula??
L LizAdair
JHendrix Girlunky your response is very hopeful! Good to hear. Hope this is the case for your Liz and it resolves. (Today is a better day with the fistula and is quite manageable). Yes keep us updated. [ more ]
LizAdair Thanks for your comments, Aimc. This gas is nasty stuff with the jpouch. Jhendrix, I'm sorry to hear your fistula problems haven't been resolved. I wish this whole thing was easier on all of us. The mucus is coming from my vagina, yes. I guess the question is whether it is a "normal" vaginal liquid related to surgical trauma...or if it is the start of a fistula. Girlunky--Thanks for commenting! Your story does make me feel better. Maybe this is a "normal" ish response to the surgery and not... [ more ]
girlunky After my takedown I had some clear yellow liquid discharge from the vagina. It stopped two weeks later. Given my age, it wasn't monthly issues. Whatever happened did resolve itself. [ more ]
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J-Pouch ForumsOstomy & Skin
J pouch gone, hello Barbie butt
LORI726LORI726
1993SPouch ❤️
Randybw1 ❤️
Jayda I’m happy to hear that there’s no infection!!!!! Not happy about the mucus - I bet that’s what mine has been doing too. LOL I am only getting 1-2 day wear time because of leaks but it doesn’t look like output leak. It looked like a crazy amount of puss but then also a light brown/reddish colour that’s hard to explain. I have been so confused. I bet it’s doing something similar (at least in one spot that’s always been trouble). re hospitals - I have tried numerous times to change to somewhere... [ more ]
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J-Pouch ForumsGeneral Discussion
Can a fistula ever be good?
J jenners
jenners @Scott F yes, I have a good Gi, Dr. Gil Melmed over at Cedar Sinai in LA. He seems really on it. So does Dr. Pasky who did the double balloon endoscopy/ colonoscopy, and Dr. Fleshner is the recco surgeon (I think he is one of bes tin California, and does about 70% of the jpouch cases here. So all seem rather good so far. Looking for second opinion of course. But all three of those people seem to think since the stricture was so tight surgery best option. I just don't know! [ more ]
Scott F You can certainly become anemic from bleeding ulcers in any area. It’s generally worth trying to clear them up medically before resorting to surgery. Do you have a good gastroenterologist? Surgeons then to think of surgical solutions first, but there are only a few conditions in which surgery is the first choice. [ more ]
jenners @Scott F they seem to think the anemia and absorption is from the stricture area, where it is ulcerated and looks like was a frank bleed site. Do you know anything more about anemia/ absorbtion? I would think clearing up ulcers might stop anemia (at least the kind that is landing me in iron infusions and blood transfusions bi-monthly)? Surgeon's idea is to remove stricture, clearing up some ulcers (now calling all this Crohn's after 22 year UC diagnosis and pouchitis) and then I guess... [ more ]
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J-Pouch ForumsGeneral Discussion
Married to or dating doctors, nurses, healthcare workers, EMTs etc.
D DJJ2019
Peti Hi, I married a Dr, a surgeon, and he is very supportive, helpful in every way. He knew before we married how my health can take over sometimes, blockages, pain, and had always accepted this is a part of me and I can’t change it. [ more ]
Michael Hey - I married an Emergency Dept MD. Not my intent, of course, to find someone in the medical profession ... just happened. Her knowledge is extremely helpful. Lets see ... she reminds me to chew my vegetables thoroughly ... keeps me hydrated through double-headers while coaching our daughters softball games ... fluently translates any medical-speak that I don't quite get, and while she does not treat me, per se, knew I had gallstones after a few taps on my abdomen and pinpointing where my... [ more ]
PouchLogic I have been dating a veterinarian, slightly different but she's probably more qualified than some human doctors. She is very knowledgeable about my j pouch now and always helps me deal or figure out what is going on. I definitely get harassment from her if I am not looking after myself or following my GI's direction. If anything she is a big help keeping me healthy. Hope that was helpful. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pressure and discomfort
B Bloesch88
Former Member SCOTT.... I’ve no idea whether it was a spasm or not but at the time of the sensation to pass a golf ball, it felt like the sphincter was remaining open and there was nothing coming out. I only discovered the application of the ilex in such a manner, by accident and out of desperation. Yeah, I don’t experience anything like it now; only a mild burning sensation and itching from time to time, which is easily alleviated by way of the ilex and is nothing compared to the symptoms of UC, the... [ more ]
Scott F Strange, if the discomfort is from a spasm of the anal sphincter, I can’t help but wonder if the “massage” of applying the Ilex caused some of the relief, since the Ilex itself is inert. If it’s irritation of the anal tissue then the Ilex itself could be helping, of course, and the discomfort could actually be a combination of the two. In any case, Bloesch, yes, this generally goes away. [ more ]
Former Member Of course it goes away. During my very first experience of this, just after my takedown, the moment I applied the ilex paste the pain and discomfort ceased, so too, did the urge to pass a golf ball. In fact, the urge to pass the golf ball has never occurred since. For maybe the first 12 months, every so often, I still experienced the excruciating pain during BMs and it being necessary to apply the ilex paste within. I could actually identify the precise area within the anal sphincter that... [ more ]
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J-Pouch ForumsHelp! Need advice now!
5 week post surgery
H Hansen
Bubba1028 I remember being at the stage where you were at and thinking that I was miserable. It gets better. The pouch does need to stretch. And it will, in time. I think I was still going 15x a day with the Imodium at 5 weeks post takedown. I tried to keep an eye on my food to thicken stuff up - peanut butter and mashed potatoes, white bread, etc. But it does get better. I also used to have night time leakage, just a little in the beginning. Now I am two years post takedown and I only have that when... [ more ]
Hansen Rzr Thank You so much for the encouraging words! I will try to hold it, in order to stretch the pouch. [ more ]
RZRAZ Hansen, I’m roughly 2.5 years post surgery. While I don’t remember exactly how I was feeling at every stage, I do remember sometime during the early stages I was feeling the same way you are now. To the point where I questioned my doctor on switching to a permanent pouch. Doctor said to give it some time and it would get better. He was right, it will get better. It’s hard to get used to at first. The best thing you can do right now, is when you feel the sensation to go, hold it as long as... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Cdiff damaging pouch
L Lidia
Lidia Thanks guys, was back in hosp for a week cdiff isn’t fun especially with a pouch. It caused some inflammation but on my second course of antibiotics now and doing well 🤞 ill check out that probiotic I’m currently using Merlak and I find it very good. thank you both for your concern and suggestions much appreciated xx [ more ]
JanW2 Hi Lidia, So sorry you are going through this. I had c-diff last winter. I have the Kpouch ( 2 previous Jpouchs). After the antibiotics didn’t work I underwent a fecal transplant ,direct donor. Worked very well. The stool was implanted in the pouch . Maybe this is something you could bring up? Will send healing thoughts your way and hope all is better quickly, 🤗 Janice [ more ]
kvan ❤️
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J-Pouch ForumsGeneral Discussion
Calling on flight attendants for advice
F FlyGirl64
Scott F No worries, Flygirl - I wasn’t irritated. I was pointing out that we have an ostomy forum here, which is more specific to your situation, but that you probably had already amply covered the territory. I’m glad you got some help. [ more ]
FlyGirl64 Bobish- actually you were very helpful! Thank you! Having an ileostomy and a reversal. hoping for three months but can take up to six months to a year while we wait for the Remicade to work it’s magic 🤞🏻 . Sorry if me posting on this page irritated Scott. But I haven’t found anything out there for flight crew so I thought I’d spread it out amongst a few similar groups and see if I get any bites [ more ]
Bobish Sorry flygirl, I think maybe I misunderstood. If you are having an ostomy and then going back to how you were, then presumably that is a much simpler operation (especially if they use key hole surgery). You mentioned reversal which is often used to describe jpouch surgery, for this the entire colon and soft tissue is removed and that is major surgery. I've not heard of your procedure being done before, but it's likely not as demanding as I feared so my advice above might not be relevant. [ more ]
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J-Pouch ForumsPouchitis
J Pouch Removal stories
RDSmithRDSmith
gregl Re: J Pouch Removal stories [ more ]
gregl Best Wishes Woodstock, I was fortunate to have [ more ]
Winterberry When I had my temporary ostomy before takedown, I had a retracted stoma. It retracted deep into its little hole and when stool poured over it, the acidic stool would sit in the recesses, and seep over my skin and under the wafer, causing leaks and many changes of the appliance. I started using concave appliances, and it helped. The one item that healed my bleeding, excoriated skin was Marathon Liquid Skin Protectant. It's by a company called Medline and I believe they sell online, but I also... [ more ]
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J-Pouch ForumsGeneral Discussion
Probiotics when I have takedown?
S Sammie1997
JHendrix I'll toss in my two cents for what it's worth. I had the original takedown surgery and developed pouchitis shortly after that. I later had a diverting ileostomy and a second takedown and decided to do things differently. With the initial one I didn't use a probiotic and my first 'meals' were jello, fruit juice and broth. The second time around I opted to forego the sugary fruit and jello. I ate broth and thin yogurt and took a probiotic (couldn't afford VSL/Visbiome). I haven't experienced... [ more ]
Scott F The probiotic that has been best studied for pouchitis is now marketed as Visbiome. It reduced the frequency of pouchitis and increased the time until a subsequent bout. OTOH you might not develop pouchitis at all. [ more ]
Sammie1997 Thanks Scott. I'm pretty sure my benefits at work would cover it if my doctor prescribed them for me, so I don't think it would be an issue money wise. Just curious about them aha. [ more ]
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J-Pouch ForumsGeneral Discussion
What to expect after balloon dilation
J J9Pouch
Aimc You obtain a set of dilators. Believe it or not you can get them from Amazon. Basically you start one number (size) under whatever number your surgeon dilated to, then go to the number they used. Simple as that. You do that until the surgeon tells you the stricture will stay opened. This should not be done unless you are first dilated by your surgeon or a GI doc. The reason being your spincter muscle is right around the area you are trying to open up. Aimee [ more ]
GraceB How do you do self dilation? [ more ]
Aimc I'm not due again until May 2020. I may just give it a go. Man the crap we go through. Thanks J9pouch. Aimee [ more ]
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J-Pouch ForumsGeneral Discussion
Dilation Stricture Blood Pouchitis
KPKP
jenners I have posted on others qs before but i have seen an internal soft tissue physical therapist (basically does massage on my belly) and she changed like 15years of scar tissue for me. Totally softened up my belly. I was doing IVF for infertility, and I swear she made room for a baby to grow in a way that I did not think possible before. I also thought it was "normal" for me to have extremely painful areas on my abdomin (like if pressed), and she changed that too. Mostly she does massage but... [ more ]
KP I'm closing in on 5 months post-takedown. Currently, I'm taking Cipro and am overall doing better. Going about 8 times a day. Last weekend, I stopped taking it and my diarrhea doubled to around 15 a day. Went back on it and noticed an immediate change. I'm planning to stop taking it again this week or weekend. I have one more refill that I'm praying I don't need. If you're wondering, I was on Tindamax for 30 days after my first dilation at the Cleveland Clinic in early-February. It was... [ more ]
KP I'm sorry! I hate that you've been battling for 5 years. I remember the physical and emotional toll that 1.5 years of a malfunctioning pouch had on me. I cannot imagine 5 years. You are strong! I hope this dilation helps! How often are you getting dilated? Is it possible to increase the frequency of your dilations? I'm not sure whether that's a good idea medically with your fissures and such, but it seems like it could help. I agree with you, self-dilating is not the long term answer for me. [ more ]
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J-Pouch ForumsGeneral Discussion
Sad goodbye
SavannahSavannah
jokerxue i drink puerh tea instead of coffee now, the ripened puerh tea is much like coffee, this one is more like coffee flavor: https://www.umiteasets.com/ripened-puer-tea-cake.html [ more ]
Scott F I have psyllium (and yogurt, and VSL #3) before my morning coffee. I wonder if that's why I tolerate it so well? I couldn't tolerate coffee before my J-pouch surgery. [ more ]
CeeeeCeeee My surgeon told me sometimes we just have to make choices. If we like really spicy foods, for instance, and find they tend to play havoc with our pouch function but you still want to include them in your diet......just go ahead and include them. Slather up with lots of barrier cream and know that once the spicy food is out of you, your discomfort should be over. Well, coffee is a "food" I refuse to give up. It causes me to have very loose b.m.s but I figure drinking it is just helping to... [ more ]
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J-Pouch ForumsGeneral Discussion
Humira Started, Considering Discontinuing Florastor Probiotics
B BlueFlame
Winterberry I saw Align at Costco when I was at their pharmacy. They were also handing out flyers at the door, and one of the items was Align, discounted $4 off the regular price. [ more ]
Scott F It might be worth pricing the VSL or Visbiome capsules. I think they are something like 1000 times more potent than Align. I hope whatever you do works for you. [ more ]
Still Standing I'm praying it works well for you! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouch issue
AngiebAngieb
Angieb I’ve had my pouch since 4/2018. I was eating before the yellow liquid started so as you mentioned Scott could be intestinal or mild food. Poisoning since I ate breakfast out yesterday morning and after that is when it started happening. I will keep a eye on it and see what happens. I am starting to eat and drink again but since doing it I’ve had some abdominal pain. [ more ]
Scott F It’s a mistake to stop eating and (especially) drinking unless you have signs of an obstruction. You might have a simple intestinal virus or mild food poisoning. Drink fluids! [ more ]
PouchLogic Your bm's may be like that if you aren't eating, it's just going to be liquid in a yellow, green or brown color. More information may be helpful, like what was going on before this and any background so we know where you are. For instance, how long have you had a j pouch for? [ more ]
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J-Pouch ForumsGeneral Discussion
J-pouch since 1998 scar tissue diets anyone ?? old J-pouchers
therealstingertherealstinger
jenners Great! FYI, surgeons and doctors might be like "yeah, that does nothing, but it can't hurt!" I would try for a month or two on your own and see if you notice a difference! very easy, nice, and won't cause any problems! [ more ]
marge Jenners-thank you this sounds very hopeful. I am seeing her today and will tell her about the castor oils packs. [ more ]
jenners This might be a little out there but agree about the PT!!!! particularly castor oil packs. Changed my entire belly (for better). I was having problems with conceiving because of scar tissue. We ended up doing IVF, and got loads of eggs. Prior to inserting embryos I went to an "internal soft tissue physio therapist" to do work on my (bountiful) scar tissue. SHE WORKED WONDERS!!! my abdomen used to be very hard and full of "knots" and also extremely painful areas 9that I had gotten used to and... [ more ]
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J-Pouch ForumsGeneral Discussion
daughter exhibiting UC symptoms
S saz
Andreita Hi I'm in Salt Lake City. I go to Granite Peaks GI they have several GIs. [ more ]
Still Standing I don't know anyone in Salt Lake City - sorry. I am on Entyvio and it is working well for me. The inflammation I had in the small intestine has reduced. (Shows we are all different and respond to different treatment in different ways.) I've only used Entyvio as a j poucher, not when I had UC, but a friend of ours is using it with Crohn's and having good results so far. [ more ]
girlunky I tried Entyvio and sadly was a non-responder. There were no side-effects either: no effects at all. Glad you are well, sorry to hear your daughter is not. [ more ]
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J-Pouch ForumsGeneral Discussion
Takedown
Cinder23Cinder23
Andreita I think you have the basics. I also brought my favorite tea since I knew they didn't have it and it was something I really looked forward to having after I woke up. [ more ]
Former Member Takedown? The hard part is over, the takedown procedure is nothing compare to what you’ve already endured. I didn’t take anything with me that was out of the ordinary. I was only in hospital for 4 or 5 days and I could of been discharged 2 days earlier if I didn’t live so far from the Hospital. I cant see any reason why a NG Tube would be necessary, I didn’t need one during takedown and the surgery its self didn’t take long; I was back on the Hospital ward before midday. I was lucky to have... [ more ]
Winterberry Shower gel so you don't have to grapple with a bar of slippery soap. Or when you drop bar of soap. For going home after surgery, I packed pull on pants, and slip-on shoes. No struggling with zippers on a swollen tummy, or shoelaces. Large plastic water bottle. Bidet bottle will be the single most important item, so it's good you thought of it. I packed shower shoes and room slippers that could be put through the washing machine when I got home. I found the hospital pillows the worst to sleep... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Secondary infertility
D Danna212
LaDonna I had the same kind of issues as those above. Got my pouch when I was 24. With in one year the scar tissue strangled one Fallopian tube. My other tube did not work due a birth defect. I could not do IvF. I tried to adopt but medical problems and then a bad marriage got in the way [ more ]
AmieAST420 I am going through a situation right now where I cant get pregnant naturally. We have a family friend who is a fertility doctor and I went to see her in January. Due to all of my health issues with UC, jpouch surgery and fistula surgeries I'm a complicated case. She ran many tests, one being a dye test where she found one of my fallopian tubes is completely blocked. I had surgery in july to try and unblock it but it was too mangled from scar tissue that she had to leave it in and cut the... [ more ]
Danna212 Thank you for your reply, I’ll start googling and hopefully find something to bring up with my doctor. Congrats on your babies!!! Twins, how exciting! Can I ask how did your doctor find your scar tissue and endo? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouch
heverhever
hever Hi Everyone, had J pouch creation in 1992 and trouble free for over 20 years but then had numerous adhesions causing bowel blockages and bowel twists. In 2017 after yet another bowel twist my surgeon could not reattach the bowel to the pouch so now have an illeostomy. I saw a different specialist who now says he can reattach the Jpouch when he fixes my stoma hernia and groin hernia Has anyone ever had a successful reconnection after 2 years? Has it been successful or caused pain and... [ more ]
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J-Pouch ForumsGeneral Discussion
Managing Pain in an Opioid Crisis World
OD Orlando Dawg
David W All the best to you. I hope things improve for you in the future. [ more ]
Orlando Dawg Ok. Well as I stated before, the 3 months I had to have a temp one was pure hell. I look back to when I was told getting a J-Pouch was the only solution and wish I would have not been so quick to jump to that decision. So getting what amounts to the same type of surgery is not going to be an option for me this time. Thank you for your open and honest discussion. [ more ]
David W Yes, an ileostomy has an external bag. No one knows it’s there unless you tell them. Also, a lot depends on where the stoma is placed. Mine is below my belt line. I’ve seen some that are higher which would affect their visibility if you weren’t weary a shirt. [ more ]
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J-Pouch ForumsGeneral Discussion
adhesion's
J jonw
Sonja6 I haven't had juice in days. I know I cant have it anymore. But I really do miss it. Everyone says that will pass. Things are already going much better. With my high in the low 200s now. Much better than 400 [ more ]
Winterberry Sonja, cut way back on juice. One small bottle of juice will send your diabetic blood sugar skyrocketing because it is concentrated, with several fresh oranges in one bottle and you wouldn't normally eat several fresh oranges in one sitting. Also be careful how you portion sweet potatoes. They are a bit better for you nutritionally than white potatoes, but still there is sugar. You're right, the food that is recommended for j pouchers (white potatoes, white rice, bread, pasta, bananas) to... [ more ]
Sonja6 I feel your pain for sure. I have chronic obstructions due to adhesions. I had my last clean out 2.5yrs ago. 5 obstructions. There are times all I can eat is mashed up sweet potatoes and juice. But now due to a new diagnosis of type 1 diabetes they have no idea what I will be able to eat. I have a appointment next week with a diabetic dietitian. Drs are very concerned due to jpouch diet and diabetic diet being so different. Doing things outside of work that I actually enjoy is a necessity. [ more ]
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J-Pouch ForumsGeneral Discussion
Probiotics cause increased symptoms?
T TheoG33
jenners I uses to find probiotics really helpful (rice Bio-K usually. but even a nice kombucha would make a difference), but then i got pregnant and suddenly they made me feel like i was being poisoned. I could not stand the thought of them. So I stopped, and still when I try bio-k it makes me feel awful. but Better booch kombucha makes me feel pretty good. But it has a lot of sugar. I have ZERO idea if any of this is helpful! Just to say it all seems to be in flux. Sometimes they are helpful,... [ more ]
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J-Pouch ForumsGeneral Discussion
clarification
MIKEEYMIKEEY
MIKEEY Thank you [ more ]
MIKEEY Thank you [ more ]
Still Standing For me personally, I limit some foods because of how I react to them. For example, I am lactose intolerant since surgery so milk products don't treat me well. I either use Lactaid when eating them or just skip them. I cut down on sugar cause it is a trigger for pouchitis in me because it feeds the bad bacteria. Other foods I do in small portions because of how they loosen or tighten the stool too much. One is raw veggies. I can handle a few carrots, but too many and I have pain when they... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Excessive thirst and urination
S Sonja6
Bubba1028 Glad u got a diagnosis before something extreme like a sugar coma or seizure happened! Good luck learning how to deal with the disease. It’ll take time but it’ll all work out. Best! [ more ]
Sonja6 Thank you everyone for your support. You all have given me more support and guidance than I have ever gotten from drs. And even my friends and family, because you all are in the same boat. I will always appreciate that. [ more ]
Winterberry It's good to have an answer so that you can learn to live properly with this disease, and to manage and control it so it doesn't cause damage to your organs, or cause sudden heart attack or stroke. Your new specialist or a diabetes educator will teach you what to eat, what to avoid (sugar), how to measure portions, and how to count carbs. It isn't difficult at all once you get the hang of it and it will very quickly become second nature. You'll be able to "eyeball" a food or beverage and... [ more ]
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J-Pouch ForumsPouchitis
Pouchitis with non-typical symptoms
K KiwiPoucher
Indiana Thanks again for the reply and yes very similar issues. I seem to be doing better already but the true test all be when I am off the Cipro and all. I have a script coming via mail from the gastro specialist and have no idea what it is they apparently don't know I got my GP to prescribe the Cipro. Will see if he sent a Cipro Rx or some other as I did mention I might be up to trying Xifaxan. Thanks again for well wishes Caroline. [ more ]
KiwiPoucher Hi Indy So glad to hear that you managed to get the Cipro, hope it does the trick. Although Cipro does definitely help, I am convinced that autoimmune disease is still the main problem for me. I first got Ulcerative Colitis 40 years ago and the first sign of a flare up was always sacro-illiac and hip pain. I have since been diagnosed with anklylosing spondylitis with MRI and CT evidence. Since my colectomy, it is still the same, as soon as I get a problem with my bowel, my AS gets worse. I... [ more ]
Indiana Update I went to the new GP pled my case and got a script for 1 week of high dosage of Cipro with a weekly check up to see how I'm going. Let's hope it knocks this down and I can start feeling normal! [ more ]
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J-Pouch ForumsGeneral Discussion
stricture: removal or possible to balloon dilate???
J jenners
RinaJP Hi Jenners. In my experience, it’s only a matter of time when crap hits the fan and all hell breaks loose if treatment doesn’t go well. I suffered about 3 years with trying to deal with the ulcertions in my pouch until last year when my inflammation exploded and landed me in the hospital for 5 months. Stelara is a biologic. When on any biologic with a stricture, even with dialation, the stricture will close back up. My surgeon here was adamant that they couldn’t save my pouch because of poor... [ more ]
jenners Heya, this all sounds so hard! 5 months in hospital sounds awful!!! Thank you so much for letting me know about your experiences. I do have some ulcerations in the jpouch, have been treated for a lot fo "pouchitis" over the years. Now seem to be changing diagnosis to Crohn's because found ulcerations further up small intestine too. Stellara seems to be a drug for crohn's? So this made your stricture worse? The doctor suggesting the surgery did indeed warn of the difficulties with bloodflow... [ more ]
jenners ❤️
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J-Pouch ForumsHelp! Need advice now!
Anal pain and severe spasms
C Cash
winter wish This is an interesting study showing 75% of jpouch patients suffer from this 😳. I think some surgeons call it functional but it’s actually mechanical- related to surgery. I think it’s something we should be warned about as a lot suffer from it 🤷🏼‍♀️ [ more ]
Winterberry Cash, try looking up "proctalgia fugal" and "levator ani syndrome". See if the symptoms match what you are experiencing. If it does, you can put a name to your symptoms for discussion with your doctor. It's horribly painful and frightening when the spasms strike. I experienced it briefly after takedown, I think it lasted a few weeks. I didn't take anything for it. It simply stopped. I hope the same for you. [ more ]
Cash Yes i contacted the office and they said this should subside after a few weeks and that this was normal. This does not feel normal feels like there is something terribly wrong. They never offered a script for an antispasmodic . Several years ago i was given bentyl for my UC. [ more ]
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J-Pouch ForumsGeneral Discussion
Clear Passage Therapy
GrannyJ64GrannyJ64
GrannyJ64 The clear passage therapy was great! I have been doing very well since I had it. I am currently in search of a physical therapist closer to me that does similar type of therapy because it is so far to get to all the clear passage facilities. I do think it definitely helps. [ more ]
duck11 Do yu have anything to report on the Clear Passage Therapy? Would be great to hear how it went. [ more ]
maddie18 I have had so many obstructions, one turned into an emergency surgery, I was one hour from losing my life according to Ithe Surgeon. If i don't take Super Enzymes with every meal I will obstruct or feel the painof an obstruction starting. Super Enzymes break down food in our digestive tract. They have been a lifesaver for me. Please try them. [ more ]
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J-Pouch ForumsHelp! Need advice now!
pain relief for bowel obstructions
SaffSaff
maddie18 Hi All Just to make my suggestion clear, I don't use any drugs for the early stages of an obstruction. When I said I take Dilaudid, I meant I am given that when I am finally able to see a doctor in the ER. Sometimes it takes hours to see a doc and the pain is worse than child birth. When I suggested Dilaudid, I meant that not even morphine helps with the pain. I just wanted you all know that this is a good option when you need pain relief in the worst stages of bowel pain. I used to take... [ more ]
duck11 Sonja6--interesting about cannabis. I've debated trying it too as I'm getting kind of desperate for when obstructions happen. I feel like cannabis is the lesser of two evils compared to narcotics. Does it sort of mellow out the contractions, or do you feel like it actually has pain-relieving effects? Also curious what you use--cannabis oil or the stuff with THC in it. (For those of you concerned, I'm in Canada so this is all legal). [ more ]
Sonja6 Cannabis and a heating pad here. I have had liquid stool for 20 years. So opioids dont mess with me to bad. When I take them I have cream of wheat poops. But I prefer to go as natural as possible. I also have way better luck laying down than sitting. Which makes sense. I have chronic obstructions. My last surgery I had 5 that they were able to clear. But they also told me my jpouch and my uterus are literally stuck together. So any issues in my lower abdomen they wont touch, due to fear that... [ more ]
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J-Pouch ForumsGeneral Discussion
Any professional pilots here with jpouches?
FM Former Member
Bobish Fly girl, I replied in the new thread you made for this topic [ more ]
FlyGirl64 I’m having my stoma /Ileostomy surgery in a couple weeks and I’m a flight attendant. For those of you Who are flight crew how long did you take off after having your bag placement? Especially flight attendants we have no options for light duty and have job requirements of bending twisting and lifting 50 pounds. And the routes I’m working gives very little time when I’m inner Island in Hawaii to have bathroom breaks. Boarding in the planning take longer than the actual flights themselves so... [ more ]
LionsPride What's the longest you're looking at in terms of having to deny yourself a bathroom and how long would you be able to give yourself to recover first? I won't lie, it can definitely be done but probably not soon without drastic measures. If you need to go 6+ hours - realistically it could be 12-18 months before you get to that point even if you take to the pouch well. You can do a lot of things like juggle medicine and diet but for the really long hauls it is going to be tough for you until,... [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
living between bm's
A Alexamsterdam
Aimc Hi Alex, as everyone has already said early days for you. Things will get better, but not overnight. I think the best thing you can do is to go easy on yourself. As new as your pouch is, eight BMs a day isn't really that bad. I mean, if you think about how many time we pee everyday, then the BMs really aren't that bad. You just need to take that first step back into your active life style. Yes things will be different, but so what. I've had my pouch for 16 months, May of 2018. It hasn't all... [ more ]
CTB23 It takes a while to feel better. I was diagnosed with UC in April 2015 and had my first surgery in November that year. So I barely got used to even having it, just one crazy flare that didn’t get better, even with biologics. It’s been over 3 years since takedown and I have resumed most of my activities and more. For me, it’s a little different because I am semi-retired, but the days I do work I take Lomotil to help get me through and I know where all the bathrooms are along the way since I... [ more ]
Alexamsterdam First of all I want to thank everyone for all the nice words and advice. It really helps me to understand this phase of recovery and gives me the energy to move on. I think the combination of my current problems and the mental aspect of the recovery has knocked me down, but.. not knockout. Winterberry: thank you for the encouraging words. I try to live by all the advice I found on this great site. I take probiotics every day, pay attention to what I eat, drink enough water, don't eat spicy... [ more ]
See all 8 replies...
J-Pouch ForumsK-Pouch Korner
Nuval valve
J JanW2
jan15 Sending healing and encouraging thoughts. You’ve been through woefully too much and you deserve the best. Janet [ more ]
JanW2 All sounds great, can understand feeling cautious, hope the time flys by with no hurdles. Hoping you’ll be the best ever real soon. [ more ]
Kim S Appt went well. Staples removed, catheter removed. They filled the pouch with some water and had me move around. No huge leaks. I have to put the catheter in every 3 hours (only once during the night as long as I don’t eat late) for 3 weeks. Then I can go longer between intubations. Everything is still a little tender. The stoma still needs some time to heal. It’s a little sore. Doc wants me to call him in 3 weeks. I’m cautiously optimistic. Hard for me to get my hopes up yet. [ more ]
See all 19 replies...
J-Pouch ForumsHelp! Need advice now!
Leakage at Night - Feel Hopeless
temotytemoty
temoty thanks! [ more ]
Scott F Nighttime leakage is a common symptom of pouchitis. If it increased when you stopped the VSL then there’s a good chance that they are connected. VSL #3 is available again, and I filled a prescription late last week. All that being said, VSL #3 alone is unlikely to successfully treat active pouchitis. A 10-14 day course course of Cipro or Flagyl seems like an easy next step, and you may get quick results. [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Bloody stools
L Laraweb
Laraweb Thanks guys all was fine last night and today was just so panicked when it happened. I'm in with GI next week as luck would have it so will hopefully get some answers thanks for replys [ more ]
Scott F It could be a one-off, but it’s hard to know. When was your last pouchoscopy? [ more ]
Still Standing I would contact my GI and let him know what happened and see what they advise. If nothing more it will give you assurance of whether or not it is something to worry about. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Prednisone after J-Pouch
DG David Goldstein
Scott F Steroid tapers are usually only a problem after an extended period of treatment. It can take a long time to persuade the adrenal gland to resume its full responsibility in the matter. [ more ]
CTBarrister Ironically I am on a prednisone taper right now, my second one, although it’s not to treat inflammatory bowel disease but “inflammatory airway disease”, which I am now seeing a pulmonologist for. This started with pneumonia in April and a persistent dry cough ever since, which is apparently coming from inflammation in my trachea seen on a scope by a ENT. Since then I had a 50 mg Prednisone taper and 2 inhalers which haven’t resolved the issue. I am now on a 60 mg taper over 12 days, an... [ more ]
Scott F David, if you’ve had trouble getting off prednisone in the past then I’d recommend thinking smaller than your idea of alternating 5 mg and 2.5 mg. For example, you could try alternating 5 mg and 4 mg for a while, and then going to 4 mg per day. If you have an underlying condition that the prednisone is treating then simply withdrawing the prednisone will fail. You need a proper diagnosis, and then a plan for how to treat it, ideally without steroids if that turns out to be possible. You may... [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Dr. Shen
A akteacher
Pouchomarx Yeah I have been a patient of Shens since 2008 and have been through a lot with him since, many procedures, needle knife, experimental procedures and a pouch redo 3 1/2 years ago. I am currently having some burning in the anal canal with a sore spot about a fingertip in, and I am basically getting blown off by his office. Unreal. He has me going in for MRI next week to hopefully rule out fistula. But only option he will give me right now is the hyperbaric oxygen therapy which is not an... [ more ]
CTBarrister Shen’s talent belongs in NYC. He needs the big stage. He will be reunited with one of his prized protégés, my former GI Dr. Oikonomou, who was recruited out of Yale by Mount Sinai with promises of a pouchitis clinic. Columbia-Presbyterian likely made similar promises to Shen and offered him a lot of money. Never forget that big talent needs a big stage. This is why Reggie Jackson signed with the Yankees in 1977, and many other baseball stars after him. It’s no different in the medical... [ more ]
marz Update on Shen,s move to NY Columbia Presbyterian. He will start there on Nov 1. I saw him today and asked why??He said 6 surgeons have left CC and he doesn’t have support for pouches or Pouchitis like he used to. He says Cc is concentrating more on colon cancer. He did say there are still good Dr,s at CC, but I will definitely be going to NY. He seems excited. Dr Kiran is there (used to be at CC). Shen,s daughter just started at HArvard—so he’s closer. He had 2 doctors from China with him... [ more ]
See all 10 replies...
J-Pouch ForumsHelp! Need advice now!
Pouchoscopy prep
margemarge
marge I put 4 oz Miralax in 40 oz of Gatorade and I only have about 10 oz left. I can’t put anymore in my body and it is working. I have to go NPO at 9:00 AM and my appt is at 1:00 PM. I might be dehydrated but was afraid to try the enema since that was new to me. Glad to know they can wash some out with the scope if needed. Thank you both for your responses. [ more ]
Scott F Tap water enemas are usually sufficient if you’ve been on clear liquids for long enough, and much easier than Miralax, with less risk of dehydration. Most preps replace the irritating solution in a Fleet’s enema bottle with warm tap water. The scope can rinse away any bits of poop that are in the way. That isn’t practical in a whole colon, but a J-pouch is small. [ more ]
marz I just had a scope with dr Shen (k-pouch) I did exactly what you described, 4 oz miralax with Gatorade zero. They said I could drink something up to 2 hours before scope. I tend to get dehydrated, so that was good news for me. I drank the miralax around 5 pm and I was done emptying by 8 pm. I also always write down exactly what I did—since I have a scope every year this helps me remember. good luck. [ more ]
See all 3 replies...
J-Pouch ForumsOstomy & Skin
Swimming in ocean or pool?
J Jmitch
Cinder23 I have a 1 piece hollister and I’ve had it submerged for 6 hours in a lake. No water in no poop out. Also been in hot tubs and hot springs with it. I just change it after. I can’t speak about the 2 piece though. I don’t cover it but to each their own. Maybe just a tight T-shirt or something? [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Positive takedown experience!
K Kh1988
Cinder23 Ya thanks I’m excited. I had the 3 step process. It’s been a year now since my first surgery and I has my jpouch created in March. I’ve been working out and getting I shape but got a hernia at the stoma site so I’m reduced to walking which I usually get 70-120 km done In a week. Any tips on things I should bring to the hospital with me? I have a good idea but maybe something you wouldn’t have thought of before your takedown. I had my pitch test last Tuesday so just waiting on the results... [ more ]
Kh1988 Thank you!!! I hope everything goes well for you too! ❤️ I’m 3 weeks post op now and still doing well! Stools have decreased and are thicker. Butt burn has gone way down. I’m out running errands and pretty much back to “normal” as far as doing my daily routine and whatnot. I do have a fissure but it’s not really too bad. I have a paste for it. I’m also back to a regular diet! Still being careful and chewing very well. Excited for when my lifting restriction is done and then I’d love to start... [ more ]
Cinder23 Awesome, good for you. I’m hoping to have my takedown next month I’ll pray for the same experience as you lol [ more ]
See all 17 replies...
J-Pouch ForumsGeneral Discussion
Previous stoma wound closing
A Andreita
skn69 I have had a lot of stomas to close since they have moved mine 4xs. All have closed on their own in their own sweet time...nothing that I do or do not do will change that. I just keep them clean and covered with sterile gauze, protect them and the skin around them with something and avoid bathing for the first while, No swimming pool until they are completely healed or granulated in. To avoid ugly scars at I do pull the edges closer together with steri-strips but I do not try to close them... [ more ]
lablover DH's healed(closed) by itself. [ more ]
Andreita I think it finally closed yesterday. I no longer covered it with gauze and the crust came off. It didn't weep. It took exactly 100 days! [ more ]
See all 12 replies...
J-Pouch ForumsGeneral Discussion
Need new GI doctor in DC with experience with j-pouches
B blufnger03
CTB23 I had an experience with my Gynecologist where he was out for about a year. Turns out he had colon cancer, I believe. He did come back. He was out at the same time I was in the process of getting my pouch surgeries. We had the same surgeon. So, you never know. [ more ]
rustyskyline Yes. And No. I did have Dr. Hardi; went in for a scope in January, scheduled a follow-up for February and before I got to that appointment, I got a call from his office saying that the Dr. would be out indefinitely and that they would call me back once he get's back. At this point, it seems like a done deal; he won't be coming back. I wonder what happened? Maybe he hit the lottery. No. I don't know who I'm moving to. Have you come up with any names for a replacement? [ more ]
blufnger03 @rustyskyline Was it Dr. Hardi? Have you figured out which doctor you are looking at moving to? [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Looking for general description of life after surgery
G Gus
blufnger03 Hi, I had a 3 step surgery in 2010/2011, after 10 years with UC. I am thankful every day I have this surgery. I was just like you, going to the bathroom 15-30 times per day. Now, I usually go 4-6 times per day, with 1 of those overnight. No urgency-- I can hold it if I need to, and I do when I am in a meeting, or at the theater. The only time I ever have urgency is when I have pouchitis, which I get about once a year. But it is super easy to get rid of- just a course of antibiotics. I never... [ more ]
evenflo687 I've had my pouch for 15 years. When I first got the pouch, I was was going that often, 15-20 times a day. The biggest issue with that was the butt burn and I hadn't been told about Calmoseptine yet. I now don't go anywhere without it. It takes some time for the body to adjust but I'm sure it's different for everyone. After a few months I was down to less than 10 a day and within a year I was at my norm of 4-6 times a day. It really comes down to diet. Dairy doesn't process the same way it... [ more ]
PouchLogic Hi Gus, There is always a chance that you can still have issues after the surgery, excessive bm's etc, but as Scott mentioned, a good healthy jpouch is much better than what you are experiencing now. It may take time to adjust, finding a "diet" that works for you. Eating a lot, or having gassy foods can still make you feel that urgency and give you excessive bm's. I average 4 to 6 bm's a day, with little to no urgency. I have had a few blockages, a few bouts of pouchitis which have sucked... [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
Can’t tell if I’m seeing blood?
K Kh1988
Kh1988 Thank you for your reply! Yea, it’s weird bc sometimes my stool is darker and I don’t see the orangey/reddish color?? Maybe it is just the color that happens to come from certain food and not blood? I’ll continue to keep and eye on it and bring it up to my doctor at my next follow up. [ more ]
PouchLogic I know occasionally I think there is blood just due to color but it can certainly be something else. Occasionally I wipe and it's bright red and that is usually just irritation from wiping. I don't overly worry about it as it's not very often. If you are constantly seeing it I would possibly get it checked out, I also realize that you aren't too far from your surgery date and you are still adjusting. Good luck, hopefully this was helpful. [ more ]
See all 2 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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