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J-Pouch ForumsHelp! Need advice now!
Butt/Anus burning and bleeding
AnnmariealAnnmarieal
Hermione Hi don't know if any help- I use Ilex ( I get this on prescip. as I am in the UK) together with Calmoseptine which I get on Amazon for about £5.00 a tube. I also have to put some 'inside'. I find it makes for a much happier butt !! [ more ]
Former Member Ilex Protectant Paste ilex Paste is also available on NHS Prescription within the Uk, so totally free if in receipt of benefits, otherwise a Prescription Charge applies. [ more ]
salmander Claire, Yes, that is the exact product, and showing the exorbitant price too. Check if it's sold at any other location. Perhaps you could contact Amazon or Onlinestore directly to verify the price. I'd be willing to bet that there is an extra "1" in the price, but even that seems a bit exorbitant to me. It's not some kind of rare or hard-to-find product, so that price just doesn't seem right. Google Soothe and Cool and you should come with several places that sell it. Perhaps it's even sold... [ more ]
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J-Pouch ForumsGeneral Discussion
Meal Plans
Mdz122Mdz122
skn69 Dinner tonight: Appetizers: grilled eggplant salad (just grill the halves skin-side up under the grill for 20mins, scoop out the soft 'meat', let the juice drain in a strainer, add crushed garlic and olive oil + salt...chop. Entrée: Stuffed squab: stuffed with apple quarters & dried fruits (raisin, prunes, cranberries), quartered fennel root. Cover in tumeric and thyme, lemon juice & 1cup water. Bake in oven at 360 for about 1.5hrs...add baby potatoes or sweet potatoes if you want. [ more ]
Mdz122 Sharon, Thank you very much for sharing. I will be able to come up with a few meals from your post. I appreciate it very much!! [ more ]
Scott F A K-pouch has no takedown, Sonny, and Sharon's been at this a good long while. Surgeons vary in what food advice they give J-pouch patients, but I think the most sensible advice is to try things in moderation and enjoy any food that you tolerate (which might well be just about everything). [ more ]
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J-Pouch ForumsGeneral Discussion
question about output/diet
R Rebe0505
Rebe0505 NEED SOME FURTHER HELP HERE ON PSYLLIUM HUSK..so today i tried my first tablespoon of it and mixed it in with my morning yoghurt and my other usual add ins(blueberries,sprinkle of some almond chips and cinnamon) thought i could kill two birds one stone however.... It thickened yoghurt all up pretty quickly lol!!!...but i went for it..not bad tasting .. but ..after eating i felt like i was incredibly full like i ate three times as much food!!! had to drink full glass of water after that .. [ more ]
deweyj good luck Rebe I am thinking I need to restart using it. I'm just too lazy to get motivated though. lol. I mean I literally took Metamucil daily for decades. I don't even recall making a conscience decision to stop. and yeah Sonny seriously I repeat be kind to yourself. I'm glad youre getting good feedback here, and I sense you are beginning to feel more comfortable. you've just been through major surgery so it WILL take time. adjust your expectations and I think you'll find in time that... [ more ]
Rebe0505 dewey i am in u.s.a. and have those products readily available ..just went out today to pick up some psyyllium husk thank you..going to give it a try..thank you rebe [ more ]
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J-Pouch ForumsGeneral Discussion
Here we go again!
JeffsmomJeffsmom
skn69 Maybe when he is in the hospital you can have a nice (cute?) instructor come to see him and give him some exercises that he can do when stuck in bed...firstly it is always a good distraction to have a new visitor and secondly it could help him get out of his head and discover something new (and someone?)... Not match making or anything but the kid really needs something else to occupy his mind! I remember in the middle of my k pouch creation surgeries after a very long series of failed... [ more ]
Jeffsmom Sharon there is a great yoga studio right in town, i go all the time but jeff is a pain in the butt! He wont go. I cant force him but i think it would help him. But kids, they never listen to you! [ more ]
Jeffsmom Jan, I'm cracking up reading your post! jeffrey not in the hospital, thankfully! That's why we will go to Florida. If he was in the hospital, I would never leave him. So that's good news! My husband's attitude about work is the place can't survive with out him! Mind you, he has a good job and all, but he is not that high up on the food chain! He is not the CEO or chief IT officer! But he is highly competitive. When he retires, I might just kill him, or else, I might get a job! He is either... [ more ]
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J-Pouch ForumsGeneral Discussion
Advil PMs are they bad with a JPOUCH??
S SonnyJ215
deweyj please be very careful of taking NSAIDs with regularity. I have related recently either here or the fb group that a friend who has a 31 year old jpouch has 5 strictures up along her GI tract, initially they thought she had crohns, she even went to see jpouch guru Bo Shen, he dilated the strictures for her several times a few months apart. his supposition is that it was her long term NSAID use that led to the stricturing. her jpouch is pristine. as to Zquil. personally I didn't like the taste... [ more ]
SonnyJ215 I haven't taken any wafers in days before BC of what you mentioned I ate around 7pm today but had wafers 30 minutes before my dinner tonight but it seemed to wear off fast and back to loose stools like right now I'm snacky and I'm scared to eat a rice cake is there any way to thicken things up without eating wafers ? And I appreciate your help [ more ]
Scott F Sleep aids can sometimes do more harm than good. Good old Benadryl can help. An even gentler solution might be melatonin. If you're waking up because you need to poop, sleep aids can make you sleep right through that signal, with unfortunate results. I things I may have previously suggested avoiding the Metamucil wafers at bedtime, but maybe that will work for you. I prefer Metamucil at dinner time, and keeping the bulk down after that. I almost always sleep through the night. [ more ]
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J-Pouch ForumsGeneral Discussion
Beta Readers Needed for J-Pouch Newbie Tip Guide
AwinAwin
deweyj sounds like you have enough readers, my jpouch just celebrated its 30 th bday, and about 11 years ago they crashed the party and amended my dx to crohns so I hear you. good luck putting it together. [ more ]
Y2K Bug Crohn's as well! That's like kicking someone when they are down! [ more ]
Awin Thank you everyone for your responses! I think I have enough readers now, but if anyone else is interested, please let me know :-) [ more ]
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J-Pouch ForumsHelp! Need advice now!
U C in lungs
Maggie MaeMaggie Mae
deweyj Azathioprine? aka Imuran, or Mercatoprurine? aka 6mp [ more ]
Brewbirds Yes off it for now until I chat with my pulmonary Doctor. Just wondering if I can try another combination to keep the antibodies down? [ more ]
deweyj off methotrexate? if I recall correctly I think it was the mtx that was suspected in her case. as to my cough who knows bit of a mystery as I didn't have it with Humira. but to be candid it did get so annoying that I had to buy bags of Halls cough drops because I would sometimes just have coughing fits. the good news the Halls quelled the fits so never anything more than oddity. I am pinging my friend now to see if she can shed more light as well as confirm her current medications. [ more ]
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J-Pouch ForumsGeneral Discussion
Coffee ??
S SonnyJ215
Spooky As with anything, your tolerance to coffee is highly individual. Unfortunately for me, coffee gives me very watery stools within 15-20 minutes of drinking it, decaf or otherwise. I still drink it occasionally, but since having the ileostomy, I've cut it out of my morning routine as I don't need to be making multiple trips to the bathroom while at work. That said, you won't know how it effects you until you try it, so give it a go and see what happens! On the other hand, I've become quite the... [ more ]
RustedFox A thread on my favorite beverage? Wow. I still have my native colon, and yes - all I have to do is smell it in the AM and it sends me right to the bathroom. However, coffee is jam-packed full of antioxidants and flavonoids that function to help prevent/lower your cancer risk (of most GI-based malignancies). Head to www.pubmed.org and put the words "coffee cancer" in the search field. The results are very impressive. Two cups a day for me, at least. [ more ]
Jan Dollar I agree. Coffee has never been known to be "gut calming," and definitely not caffienated, since it is a stimulant. Not sure where that notion would come from. Many people consider coffee part of their morning constitutional, keeping them regular. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
excessive bloating, chance of blockage? super uncomfortable :(
C Chrissey86
JLH Bug--Can't recommend that app enough, it's simply fantastic. It enabled me to figured out the low Fodmap diet on my own– – Despite my doctor saying one needed a dietitian. Another resource is http://www.katescarlata.com/ . She is Boston-based, however you could have a Skype session with her, for $250,. She does coordinate with Monash University. Chris – – don't necessarily think that your doctor will know about the low Fodmap diet, or if she/he does that it will make a substantial... [ more ]
Y2K Bug I have the Monash University FODMAP app. It tells you the rationale and lists foods to avoid and why. Also contains recipes and other info. [ more ]
Chrissey86 Thanks so much for everyones replies. I am going to see a new doctor on Friday, I'm definitely going to mention possible pouchitits and this Fodmap diet. Where can I find more info on this Fodmap diet? Spooky did they diagnose you with pouchitits after a scope? [ more ]
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J-Pouch ForumsGeneral Discussion
Probiotics should I try them for the 1st time ?
S SonnyJ215
StarryNight ❤️
Spooky Sonny, by increased symptoms I mean that for the first little while of starting probiotics, some people may experience a temporary increase gas and stool frequency, perhaps even some diarrhea or mild cramping. That is not to say that you will definitely experience this, but if you do have these issues within the first few days, it's not necessarily reason to stop the probiotics entirely, unless it's intolerable for you. After a few weeks your system should adjust and "normalize." And Jan is... [ more ]
claire ❤️
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J-Pouch ForumsWomen's Health & Pregnancy
C-section or vaginal delivery??
T Thompamylt
Thompamylt Hi thanks for your reply I think our cases our very similar as my consultant also seems to be more comfortable with me having a vaginal birth based on me already having had two pretty straight forward births. My boys were 7lb11 and 7lb7 we are expecting a girl this time who appears to be on the small side according to growth scans. I'm finding it such a hard decision to make and seem to be changing my mind most days, the thing putting me of a vaginal delivery is if it turns into an emergency... [ more ]
clz81 Also, just wanted to add, that while I did see a high risk OB for my first appointment, they sent me to my regular OB for the rest of my pregnancy. They said that other there was nothing high risk about my pregnancy. I was my OBs first pouch patient so she had no experience, but she said it didn't really make a difference. She said the only difference would be that we would weigh the pros/cons of delivery options at the end of the pregnancy, and that if it did end up a c-section, that a GI... [ more ]
clz81 How did you birth your first two babies? Were they easy births? Were they big babies? These are the questions that we factored in when deciding how I should proceed with my son. He was my second baby, but my first after my pouch. Based on everything being in my favor for a vaginal birth (my first delivery being very easy, history of our family having small babies and he was measuring small, and I was 3 cm dilated), we induced about a week early. My kids were 6lbs 14oz and 6lbs 10 oz. Both my... [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch failure due to hemorroids or fissure?
PouchomarxPouchomarx
jeane Poncho I am experiencing this issue right now. I have multiple fissures that will not heal with standard treatments of rectiv and nifedipine. I have what feels like an internal skin tag due to this and narrowing of the anal canal. I'm being evaluated over the next month and being seen at Ckevelabd Clunuc. I have had no diagnosis of crohs , yet I have continual issues w a stricture at the anastomoses which is likely the culprit of the fissures. I am hoping I do not lose my pouch but chronic... [ more ]
Janiep Try to remain calm and if possible try to get your appt. moved up. Hang in there! I've had fissures, pain and even a small bowel obstruction. They've all passed for now! Keep the area lubricated! Feel better❤️ [ more ]
Jan Dollar Never heard of pouch failure due yo hemorrhoids. Fissures, yes, but they have to be quite severe and unresponsive to treatment. This is particularly true if the fissures are perianal Crohn's. Try not to let your mind go to worst case scenarios. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Tell me about pizza Jpouchers!
G gleam
Jan Dollar Well, thanks! I don't know how knowledeable I am, but if I learned anything from 45 years of UC and 20 years with a j-pouch, it was depriving myself of what I craved only caused obsessive thoughts. Eating weird stuff may cause some extra toilet trips, but that is about it (at least for me). I guess if you wolf down a bunch of roughage you might cause an obstruction. So, whatever you eat, chew well like your mama told you. Jan [ more ]
SonnyJ215 I swear Jan Dollar you are heaven sent you are so knowledgeable your comments are so comforting I really mean this I would love to have you as my professional consultant [ more ]
Jan Dollar I had a 1-step and was eating a regular diet within a week. Nothing was completely "forbidden," other than an instruction to avoid milk and raw vegetables for a while. Still, I was eating a green salad before discharge and had a steak soon after getting home. It was so long ago, but I am sure I had pizza fairly early on, also Mexican food, other Italian food, etc.. The only problem I noticed was increased frequency. I had no big problems that were food related, and I had a lot of... [ more ]
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J-Pouch ForumsGeneral Discussion
Switching to Organic Psyllium Husk
R Ryeeno
SonnyJ215 I realize this is a very old topic was just look for a lil advice I'm 6 weeks post takedown and I'm still a lil clueless I take Imodium in morning with a Metamucil wafers and a rice cake then eat around 2pm and maybe again at 6/7pm I also try to stop eating at that time for the day but do you have a snack after 7pm and as far as the husk how many times a day do you consume it and do you use it on food and drinks ? I appreciate any advice [ more ]
JessGoguen I use loperamide on a very set schedule and diet to keep my output under control. I also try not to eat after 7 which makes a huge difference. I find applesauce, wafers and breads help keep things thicker and easier on my backside. [ more ]
Duct tape, Zip ties, and J-pouches I've been taking just dome generic orange flavor husk fiber, applesauce and fiber sounds like a good combo. [ more ]
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J-Pouch ForumsPouchitis
chronic pouchitis and prednisone
clz81clz81
Scott F There's no particular reason you can't take prednisone and an antibiotic at the same time, though you may have trouble figuring out what's helping. Have you tried any other antibiotics besides Cipro and Flagyl? Prednisone is an unusual way to treat pouchitis. Have you had a pouchoscopy to better see what's actually going on? Treating pouchitis based on symptoms is fine. If the antibiotics don't work then ensuring the correct diagnosis becomes more important. [ more ]
LauraLee Hi guys, I really need some help. I been dealing with Pouchitis (we think it is because my symptoms) and after trying Cypro (worked for a while and then not anymore) and Flagyl with no success, my GI doctor put me on steroids (started with 40 mg and down to 20 mg now). I think my inflammation is better because in general, my condition has improved, but I'm still dealing with so much soreness, burning sensation on the Jpouch, pressure, bloating that makes me think is bacteria overgrowth that... [ more ]
JDShaw prednisone is the only thing that has been working for me. I came off it two weeks ago when I started Cimzia since then I have been in terrible pain most nights. I don't want to go start back on prednisone my face has been swollen for months but if the pain does subside I may be back on it shortly. 40mg usually knocks out the pouchitis completely after three days. [ more ]
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J-Pouch ForumsHelp! Need advice now!
FIRST ENDOSCOPY more bms
bederyparisbederyparis
bederyparis jan thank you and i agree with you. In france they dont prescribe meds until they are sure and in this case the gastro wants to have an idea of the level of inflamation. [ more ]
Jan Dollar Yes, scoping can cause an uptick in inflammation/sensitivity. You should be back to your baseline in a few days. I am not sure what the point is in waiting for the pathology report in order to treat pouchitis. Granted, ALL pouches have a minor level of inflammation, but the doc should be able to discern that from pouchitis before the path report comes in. For example, I had a lot of inflammation on scope. The path report just ruled out any dysplasia and noted that it was chronic... [ more ]
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J-Pouch ForumsGeneral Discussion
What's the first step?
K kingbrand
kingbrand Thanks everybody. I'll let you know how it goes. [ more ]
Former Member From my experience of hospital admissions, appointment and that of the many patients I've met along the way (also with UC) it's normally our desire to keep our colon, regardless of the illness and its debilitating symptoms, as we dread the thought of a life with a colostomy bag. I'm in the Uk, maybe it's different, personally I believe it is; as through-out my battle with UC, a J pouch proceedure was never ever mentioned. Many times during my trearment my Consultant often suggested and... [ more ]
Jan Dollar Re: medical files You don't really need to bring them with you. You can call the consultant's office to see if they already have them, or call your GI and ask for them to be sent. But, the surgeon does not have time to pour over hundreds of pages. He will just look at the main reports. Generally, he can request what he needs from your current provider. As for yourself, it would be useful to the consulting surgeon for you to have a list of your current meds, and past meds you have tried. [ more ]
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J-Pouch ForumsPouchitis
return of pouchitis?
sophies momsophies mom
Eitan Hello Do you take VSL#3? It helpep me very much to prevent pouchitis Eitan [ more ]
deweyj others know more about pouchitis. but I don't think pouchitis just comes and goes without some meds. I mean theres a big debate about pouchitis, Jan and others have posted a bunch of different academic papers, there's almost a belief that there are different phenotypes. but I digress, if it was just in passing, its possible you simply ate something that irritated the pouch, so yeah maybe you inflamed it a little ie gave it "itis" but to my mind that's not pouchitis. [ more ]
sophies mom So today things have been great. No urgency and much fewer trips to the bathroom. I did call my doc yesterday, but she is out of town. Still haven't heard back from the nurse practitioner. Wonder just how much experience she has with jpouch cases. Maybe I was just having a couple of bad days? Can pouchitis come and got like that? Dang this confusing stuff! [ more ]
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J-Pouch ForumsGeneral Discussion
Plane travel with a 1 month old takedown
S SonnyJ215
Scott F I was always careful to get an aisle seat when I still had my poorly-behaved colon. One of the pleasures of a J-pouch (for me) is to enjoy window seats. There's just no urgency any more. [ more ]
CeeeeCeeee As I enter the aircraft I ask the flight attendant if I can use the bathroom. The response has always been, "Yes." So, I turn left and open the bathroom door which is usually right behind the cockpit in the planes I fly. I empty my J-pouch as best I can. All of this only takes a couple of minutes. I exit the bathroom and head down the aisle to my seat......always an aisle seat. I stay hydrated with water and if I eat anything, I prefer to eat pretzels......salt helps me retain the water I... [ more ]
bwils Absolutely. I fly fairly regularly and just had a 6 hour flight last week. As others have mentioned I try and not eat much or eat something small that is binding a couple of hours before I go. I normally also take an Imodium before I get on. I can usually end up going to whole flight without having to use a washroom. Honestly, I think it is more mental than anything. The first couple of flights all I could think about was when I would need to go. As someone else mentioned do something to... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Mouth ulcers before UC diagnosed
Christopher100Christopher100
Deedeeh i had a ton of mouth ulcers pre diagnosis of UC. they were really painful and big and i had a lot of them at one time. after treatment i have not had them again, except the odd tongue one as you say but absolutely nothing like it was before the onset of the UC thankfully. i do believe they were part of the onset of the illness. [ more ]
Hermione I was diagnosed with UC in my early 20's. Throughout my teenage years I always had mouth ulcers and continued to have them all the time until I was 35 when I had my colon removed. I had an ileostomy for the following 15 years (although I had terrible problems with it!!) and guess what.... no mouth ulcers!! I had a Jpouch formed in 2015 and since take down in August 2015 I have continually had mouth ulcers. [ more ]
Ashley22 Before I was diagnosed I suffered from really my mouth ulcers. They were mainly just on my tongue and I would have as many as 9 or 10 at once. I was in high school at the time and it made talking, eating, brushing my teeth, etc a very painful experience. Since I got my colon removed two years ago I have only had the tongue ulcers twice and both times it was just one and they were small. I know that mouth ulcer are more common in crohns patients than in UC patients but can occur in both. [ more ]
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J-Pouch ForumsGeneral Discussion
5 weeks post takedown and I want a cheesesteak and pizza !!
S SonnyJ215
Jeffsmom Go forbit! My son is 9 weeks post takedown and is eating what ever he wants. That saud, for the first 4 weeks he was on nothing but chicken soup! Enjoy it. [ more ]
mgmt10 Now see, I liked Genos lol. Five years post op and I'm doing great. Jefferson university hospital is where I was. Terrific hospital. I had a very good experience with them. [ more ]
SonnyJ215 Well first off I hope your doing well .... And to answer your question pats kills genos there's no comparison lol .... No doubt! ... Which hospital did you do your surgery? [ more ]
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J-Pouch ForumsGeneral Discussion
What causes strictures?
PouchomarxPouchomarx
Pouchomarx My hemorrhoid is external, right next to anus, so don't think I have internal. and as far as I know im not having any spasms?? my followup is April 21st so I will have them check it out. [ more ]
Jan Dollar It is sort of tricky because if you are having sphincter spasms, that will also prevent passage of your finger. Also, if you are inflamed in there, say from hemorrhoids, that also can crowd the passage. Plus, your doctor can get in a better position to fully examine. That said, strictures can form slowly over time, and that is often the case. Your best bet is to have the doc check it out at your next appointment, like you are planning. Jan [ more ]
Pouchomarx so Jan, if surgeon checked morning of takedown and didn't notice any strictures and I don't believe I have a "cuff" due to hand sewn mucousectomy, only 3 weeks from surgery does that mean pretty much no chance of stricture forming that quickly? Reason I ask is cuz things have been going so well besides the big hemrhoid I have from wiping in hospital the first week, I have only been going to bathroom like 5-6 times a day and sleeping through the night. I read a past post by you Jan regarding... [ more ]
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J-Pouch ForumsGeneral Discussion
Travel with the J-Pouch
T TheUnCola-n
Jan Dollar Grapefruit juice will really weigh down your luggage. For food, I always like to enjoy the local specialties. I bring protein bars for when I am out and about and unable to find safe food, but that is mostly to prevent me from eating a bunch of pastries or other yummy stuff! Jan [ more ]
TheUnCola-n Thank you! I'm not expecting any problems, but I believe in fighting on every level. I want to bring some grapefruit juice too, but I'm not sure if that's feasible. [ more ]
Jan Dollar I don't know about preventing blockages, but I absolutely recommend you bring Flagyl, Cipro, or both. My GI has no problem prescribing it for me for "just in case" when traveling outside the country, or even my health plan. Also, bring every single OTC med you may want. You never know what is available where you are going. Plus, when you are sick the last thing you want to do is try to find a drug store. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Imodium question
BebeksporBebekspor
Jan Dollar Dilation can be by stretching using the examiner's finger, or by balloon. You may suspect you need a dilation if you are unable to empty your pouch. But, this symptom can occur with pouchitis, cuffitis, fissures, and pouch structural defects. An anal stricture is easily diagnosed by digital exam. A stricture that is mid pouch or higher can only be found on endoscopy or imaging. Jan [ more ]
SonnyJ215 How is a dilation performed and how do you know if you need it ? [ more ]
Jan Dollar Yes. If you have a stricture, it prevents complete emptying. Dilation opens theanal canal so you can more fully empty. A stricture is easily diagnosed by a digital exam. If the examiner cannot pass his figner past the suture line, you have a stricture. Jan [ more ]
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J-Pouch ForumsFAP Forum
Advice Please?
M MandiG
debbieod Nothing worst than butt burn hygine is so important, I use wet ones everytime, dry with tissue and always apply Calmoseptine. you can get it at any medical supply place. Cvs will order it for you i could not live without this. [ more ]
Angie Wilson Yes to the exhaustion..yes to thinking I tried so hard to get it right and nothing seemed to work....it took lots of therapy and learning new skills, new ways to cope, really - a new mindset about myself, men, life, etc. - it was worth it. I did this at around age 28? I think....and it made my life dramatically different and much better had I continued thinking in old patterns. Your emotional/physical health have to be top priority - even if it means going to a low cost counselor once a week... [ more ]
MandiG Tonight I am starting the prep for a flex sigmoidoscopy. I am starving and watching my family eat. LOL while I get to drink a nasty mixture yum yum. The prep has not started to hit me just yet but I am certainly not looking forward to the minute that it starts here soon. I am wondering if I need to get my bowels as clean for a sigmoidoscopy as I needed for the colonoscopies. Tomorrow I have a friend driving me and staying with me after and taking care of my child while I sleep the day away. [ more ]
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J-Pouch ForumsGeneral Discussion
Do u have immediate relief after dilations?
dgtracydgtracy
dgtracy I'll be able to contact her via email tomorrow but I'm not beginner with dilations. This is my 3rd or so on this j pouch run. I had a few ony previous pouch attempt [ more ]
Scott F It seems like the first dilation sometimes does little more than enable the second dilation to be more effective. I don't know your particular circumstances, DG, but it's clear that one dilation is commonly insufficient. It's a heck of a nuisance, but there's still plenty of reason for optimism. I do suggest you discuss what's reasonable to expect with your doctor. [ more ]
dgtracy This was just done this past Thursday, would it already be back? [ more ]
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J-Pouch ForumsGeneral Discussion
What to do about persistent cough
I iHateColitis
iHateColitis Okay, I will try the Zantac. Thanks. [ more ]
Scott F I'm with Jan on this. Endoscopy can be very useful, but not all upper GI conditions can be diagnosed that way. Your doc is most likely considering a diagnosis of LPR (laryngopharyngeal reflux), which is very had to definitively diagnose. Endoscopy would be useless to rule that in or out. The simplest way to make the diagnosis is a therapeutic trial: try the treatment and declare success if it works. [ more ]
Jan Dollar Gee, I'd just take the Zantac and see if it is useful. Endoscopies are invasive, and if you can use a cheap and easy way to rule out reflux, it just makes sense to me. You would not hesitate to take Tylenol for a headache, instead of scanning for tumors, eh? If it does not help, that also is useful information. There are pulmonary extraintestinal complications of UC, so something else to consider if this is not reflux. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Feeling your the only one and the odd man out?
S SonnyJ215
TreblePouch My J-pouch surgery happened April 6th, 1998. I will never forget it and the year that followed. At the time I had a 5 and 1 1/2 year old. I really had to rely on my husband, family and friends especially during the first month of recovery. I felt so guilty!!!!!!! Since that time I have had a scar tissue stricture which landed me in the hospital for 8 days, an ileus after my back surgery that put me in the hospital for 10 days and most recently a partial obstruction which required a day in... [ more ]
Jeffsmom My son felt the same after his first surgery. I would think that its normal to feel that way. How could anyone not. My son was 23 when this happened to him. A year later, he was diagnosed with PSC. Something i repeated over and overvis this. You are not your disease. Dont let it define you. Ifvyou let that happen your disease controls you. You are notvyour disease. Crsp gapoens, it sucks. And yes, not everyone has to live like thus. But you havd a life. Live it. Go Out into the world and... [ more ]
aka KNKLHEAD I know I fall short of assuring others that have a rough go like we've all had. Everyone handles these things differently. I'm an optimist, happy that we have surgical options that literally save our lives. I couldn't wait to go golfing the first time without my colon to see if it would help me play better. Of course, it didn't, but it was sort of funny. Imagine how may pros would elect to have their colons removed if it did help! Anyway, that's the crazy way my mind works. I also joke to my... [ more ]
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J-Pouch ForumsGeneral Discussion
Can you have pouchitis but no real urgency and not alot of frequency?
dgtracydgtracy
dgtracy I believe my stricture was further up where the pouch and small intestine meet. I think not 100% sure [ more ]
UKSue I must admit I haven't had much pain or difficulty evacuating post dilation but maybe it depends on location ? Mine is where the pouch joins the rectum . I would imagine it's possible for some swelling to be present for a while ? Because of the location I am able to use a dilator on mine regularly ( particularly important since I had radiation for cancer last year .) [ more ]
deweyj not for my strictures but might be location of stricture? my strictures are mid pouch and above pouch opening. I have heard others who have had strictures in their colon for example experience pain from dilation. so to be candid I'm not sure what is normal. I suspect but don't truly note any material difference in my ability to evacuate. [ more ]
See all 19 replies...
J-Pouch ForumsGeneral Discussion
Free Cholestryamine
MysticobraMysticobra
Mysticobra Ben. I pm'd you for your address. [ more ]
Benito I get my from Kaiser, I also get 3 boxes at a time. I can use them. contact me and I will make arrangements to pay fro the postage. Thx, Ben [ more ]
deweyj I just asked a friend who I though was on it, but she's not. I just posted in the fb Team Challenge closed groups so presuming TC administrators don't freak out, I will hopefully locate a patient in need. I agree its ridiculous to throw away expensive meds that others can use. notwithstanding the official rules re scripts. which I can understand some of the basis for. this is just wasteful and should be avoided if we can help it. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Calling all Martial Artists
Epic ScotsmanEpic Scotsman
shogun Hi all. My name is Martin and just had pouch surgery and waiting for the final stage so I am new to the pouch thing but taking it all in my stride. As a martial artist of 30 years you can do anything with an ostomy. I attach an image of me being thrown by my teacher 1 and 1/2 to 2 years after my colon removed. This was at a demonstration in the Uk. As it was a demo you have to allow yourself to be thrown and the downside of course is the landing is higher and harder. I had no additional... [ more ]
vanessavy I sparred full on in BJJ other day. I was nervous at first but I was in a kimora pretty much and a knee right on my pouch full pressure. I was fine actually so I am not even worried about it. I am getting ready to train for Olympic Weightlifting competition. Been Oly lifting for almost 2 years so pretty excited to see what I can do without a sphincter since that is a key to lifting, a strong one! [ more ]
Karbear Here is a picture of me doing my form in my first tournament in 10 years. I placed 3rd overall. I wish I could have posted one of my sparring pictures, but it is on the wall at the gym. I have earned the reputation as being on of the top sparrers in my gym only 3 months after my return. [ more ]
See all 16 replies...
J-Pouch ForumsGeneral Discussion
Does Gas Pain Ever Go Away
SpartyDreaminSpartyDreamin
mgmt10 I would say it's just part of the healing process. Our bodies went thru a pretty big trauma with these surgeries. It takes time to adjust That being said, if you're experiencing severe pain, that's not normal and you should call your surgeon. [ more ]
SpartyDreamin Ok thanks for the feedback. Is there information on why this occurs right after surgery? Are our new pouches simply tender from the surgical trauma? I am curious if there is a way to speed up this recovery process. I seem to have much worse pain in the middle of the night than during the day, and as a result, am not sleeping. [ more ]
mgmt10 Oh yes, I remember those gas pains. They will go away. If I remember right, around three weeks after my takedown they subsided significantly. [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Teenager with new J-Pouch Struggling with Recovery
BM best mommy
best mommy Thanks so much to everyone for their thoughts and feedback. My daughter had a CT-scan -- two of them actually -- and her pouch is totally normal. Turns out this was all recovery related issues. I think after the second scan she had much more confidence that she is actually getting better and is no longer a 'sick' person. In fact yesterday she said she "felt really good." That is the first time I have heard her say that in 5 months! Hopefully the move back to her regular old teenage life will... [ more ]
MNpoucher This hit home for me as I was 17 when I had my surgery and in hs. I was so happy to get rid of the ostomy but the first few years with the pouch were not what I was expecting. Has been checked for a ln anal fissure? Had one myself for years that would only get slightly better using steroids. Then I was prescribed nifedipine paste and it made all the difference. Occasionally I will still get a little burning but the paste relieves it right away and my fissure has been gone for years. The pain... [ more ]
Momma Hi Mommy, I just saw your post. My 15 yr old son had his surgery in December at Mt Sinai too. He just had his step 2 on 3/4. His take down is not until June. I would love to chat and share stories. Who was your surgeon? I think we actually chatted in the hallway. I will private message you. [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Looking for Health Coach Client - I Have a J-Pouch
temotytemoty
temoty Sonny, I've gotten a couple of replies, but you can email me at temoty@hotmail.com and we can chat. Thank You, Tyler [ more ]
SonnyJ215 Hi Tyler I may be interested as well if your willing ? I'm 5 weeks post takedown and still crawling with my new plumbing emotionally.. Plz let me know thx Sonny [ more ]
temoty Sounds great Emily! I'll reply to your email soon. Tyler [ more ]
See all 5 replies...
J-Pouch ForumsK-Pouch Korner
What's a normal diet for a k poucher
skn69skn69
Janit That is pretty much my routine although I do stray in the nuts and olive dept. For some reason ever since I got the K-pouch I can't eat mushrooms because they make me sick! When I just had the bag they would pass on thru no problem but now it's like an eruption of some sort, odd.. [ more ]
Rosie128 I think twice about anything I have to "pick" out of my tube while intubating. I never eat corn as the clogging and picking and long night of multiple emptying are so annoying that to me they are not personally worth it. Never painful, just a pain in the neck! I like things that are low residue and break down in the stomach acid. I do like carbs for this reason, although they do increase output and make things thick so I drink copious amounts of grape/fruit juice with them. As long as I make... [ more ]
skn69 Hi Roza, First off, I have a k pouch and not a j pouch so nothing is left 'down there'...it was all removed. When I did have it (35+yrs ago) it was such a mess that I cannot remember it. As for the diet...Well the first 10yrs were a disaster. I had no idea what I could or couldn't eat, no rules, no advice...just hit and miss...and many, many mistakes, tons of pouchitis, blockages and frustration. Then, in my case, I discovered a method that worked...it happened to be Fit for Life but it... [ more ]
See all 12 replies...
J-Pouch ForumsHelp! Need advice now!
Can't eat -get full easily
M Momma
skn69 Surgery, illness, fear of not controlling his bowels....can all put pay to his appetite...give him time...tempt him with small, easily digestible snacks (a couple of crackers w/peanut butter, apple sauce heated up in the microway with a sprinkle of cinnamon and brown sugar, oatmeal...). Maybe he will do better with 6 tiny meals than 3 large ones. As long as he is staying hydrated, eating small protein snacks (cheese cubes & Peanut butter works well too, chicken) and is not weak and... [ more ]
Momma 3 weeks ago [ more ]
Scott F How recently was the surgery? Sometimes the bowels take a while to fully wake up, and that can cause a bit of a logjam. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Switching Surgeons after surgery Plz read
S SonnyJ215
Spooky I agree with others who suggest a GI who is experienced in j-pouches for ongoing care. I don't feel necessarily that surgeons "don't care" but they tend to have very busy practices that are literally like a turnstile; in most cases they see the patient pre-op, do the surgery, and then see them maybe one or two times in follow up before ultimately discharging them from their care. It's actually not common practice that a surgical patient would need ongoing follow up care indefinitely from... [ more ]
Lesandiego My surgery was emergency. Super nice guy with a great memory of my family members, but honestly... I think he "butchered" me compared to somebody skilled in a colectomy. Then I switch surgeons to a specialist to create my J-Pouch... I am very satisfied with his bedside manner. Now on to my orthopaedic surgeon - Emergency Trauma surgeon only (I was in a car accident and had no choice). He was a number one A**hole. He "reprimanded" me in front of friends and nursing staff, because my knee was... [ more ]
skn69 Sonny, I agree, most surgeons do suck at bedside manner...that is why they become surgeons (not true but...sounds good) so that they do not have to deal with 'awake' patients...well, sort of...They do not teach them psycology they teach them to cut out the sickness and sew things back together. What you need is a G.I. who deals with "awake" people....who is used to dealing with disease on a daily basis and the results of surgery. French surgeons are notorious at having very low points on... [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
Freaking out I can't take it !! Help
S SonnyJ215
TE Marie Unfortunately I am getting my j-pouch removed in the morning. I have had a permanent ileostomy the last 6 months and it is not horrible. I was covering it up with press and seal wrap and expensive waterproof tape to shower. I read a comment by a gal that goes swimming in the ocean and gets wet whenever she takes showers and so on. She has never had a problem with it leaking. I started showering and bathing with nothing over it and she is right. All I do is use a hair drier on low and air... [ more ]
Angie Wilson Wow - a kindred spirit - I had the Compazine thing too - ER and IV benydryl - twice. Have had many of same problems - and yes, it's all been worth it. I think I was about 30 when I had the Compazine issue- had a day surgery for ovary issue and this was for nausea...wow - that was fun! Ovaries, uterus, etc. are long gone now - you gotta laugh at how much they can take out of you and yep - you still function. The toxic thing is something I will bring up to my GI person - something is off for... [ more ]
maryloar I too have a long term J pouch. Mine was in 1984.I had Ulcerative Coliis for 10 years prior and was told I was at risk for colon cancer. I would not be without mine. The first year after surgery was a nightmare. I had dehydration, swollen legs and several problems. The main problem was that I had Compazine poisoning and after 5 different doctors telling me basically it was all in my head, a sweet nurse in the ER diagnosed me with Compazine poisoning (symptoms similar to Parkinsons and... [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
navigating site
L lifescircle
Jan Dollar I would suggest doing a search by keywords. You can get to the search option by going to the option list by clicking on the icon in the menu bar (the appearance will vary, depending on what device you are using). Jan [ more ]
deweyj I am not sure, but I think you cannot read the survey responses unless you have participated in that specific survey. maybe that's why you aren't seeing the comments? [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Hemorrhoid after step 2
M Momma
Scott F Hemorrhoids don't necessarily heal on their own, though the swelling and discomfort from them can come and go. At least he won't be straining on the toilet for the time being, since that tends to make hemorrhoids worse. I hope his stop bothering him! [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
12-15 bm a day
U UjohnjC
Angie Wilson Great advice - yep - Walmart butt wipes - always - but had not thought of witch hazel - will get some and add it to my toilet seat top! [ more ]
Brianblack Try butt wipes with witch hazel. You can get them at Walmart. I've had a pouch for 15yrs and nothing helps more than them. Use a wipe after every bm. [ more ]
deweyj early days. very early days post takedown. people talk about up to a year for adjustment period. crazy went crazy and gave you a very detailed menu to follow. you can also reference the dietary guidelines found here under the information tab. we each respond fractionally differently to food but some hard facts are that INSOLUBLE fiber will make you go, however, soluble fiber, especially for those missing the bodys natural dessicator, will help form stools. for decades, i used soluble fiber... [ more ]
See all 10 replies...

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Bill Johnson founded the J-Pouch Group in 1997.

After a life long battle with Ulcerative colitis, Bill finally had his colon removed and was given an ostomy in 1993. A failed attempt for a j-pouch and then many surgeries to get back his health gave Bill the motivation to create a web site dedicated to giving support to patients who have had or are considering j-pouch surgery.

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