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J-Pouch ForumsGeneral Discussion
still having trouble figuring out what is best to eat
Spooky Unfortunately like many other things, food and pouch function is highly individual. A food that may be fine for one person may cause numerous problems in another. It would be so much easier if there was one universal diet for pouchers to follow, unfortunately that is not the case. When I first had my colon removed, I was referred to a dietitian. She suggested keeping a food diary for at least 30 days, where you literally write down everything you eat and drink, and I do mean everything. You... [ more ]
Winterberry Hello, AKT2. In your restaurant if you have access to bones you could make bone broth! I have jars of homemade bone broth in my fridge all the time and have one jar a day, adding rice and well cooked carrots or sometimes yam noodles to the broth. For some reason it keeps me "normal". If I run out of the broth and go a week without then I start to have real problems with consistency. I don't know if it's because the broth is hydrating and has sodium, minerals, etc., but for me it works. Some... [ more ]
AKT2 I also love that chili garlic flavor as well as the kimchi that I used to eat for the natural probiotics. Now, the skin burn can be pretty harsh. I've tried eating it with white rice or pasta..something to couch the spice, and that seems to help. I do try to avoid cabbage, Brussels sprouts, broccoli, asparagus,onion, beans, etc...not only because of the indigestibility but the gas that seems to kick off spasms. I agree with Buckeyenate...oatmeal is great! At this point in my life its... [ more ]
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J-Pouch ForumsGeneral Discussion
MY NEPHEW NEEDS HELP, DOC REFERENCES IN ORLANDO AREA?
Caty The Colon and Rectal Clinic of Orlando has a number of excellent physicians. Doctor Samuel DeJesus, in particular, is very knowledgeable and compassionate. Caty [ more ]
Bodoni Sue Kay at BCIR.com could help you, I'm sure. They are fairly close to Orlando. [ more ]
aka KNKLHEAD HI, Poucho. Sorry I can't help with doctors, but it sounds like he should go to the emergency room? [ more ]
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J-Pouch ForumsGeneral Discussion
Pre-pouch ileitis, it's not "Crohns"
Linguist Hi IKH, I feel the same here. After so many years of being a UC patient, my new GI is now certain that I have always had Chron's, but not UC. In one of my scopes my doc said I had pre-pouch ileitis too. In 2013 - 2014 I had lots of ulcers in my pouch and there was a stricture in the neo-terminal area resulted from excessive inflammation. The ulcers went all the way up to 30 cm (1 foot) through the ileum. I was awake during the scopes (multiple scopes) and watched the procedures on the... [ more ]
Linguist ❤️
Ikh Yes but in the literature "backwash" term is mentioned for UC and "pre-pouch ileitis" for people who underwent IPAA; then there is at least one document which says that the etiology could be the same. I believe that's the same, in my case I tend (when I'm at work for example) to retain more than I should and probably I developed SIBO in the pre-pouch area. [ more ]
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J-Pouch ForumsGeneral Discussion
Abdominal/Jpouch Pain?
Scott F Another possibility is a garden-variety GI infection. [ more ]
Winterberry Hello, Jpouch8888. Could it have been something you ate that your pouch didn't like? Do you keep a food diary so you can check? Whatever it was, your pouch did a good job of getting rid of it. When I eat something disagreeable my pouch will tell me within a few hours, and eliminate it. Beets or blueberries will colour the stool and can be scary. [ more ]
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J-Pouch ForumsGeneral Discussion
I'm so confused
Mysticobra It good to hear people that have em that work. I know you guys are out there! I can relate to the old dog syndrome. I have one 12 and a 13 year old. Another that's 5. She is the one I don't trust. Lol. [ more ]
CTB23 It has been 8 months for me and doing well. Still some adjusting, but so far it has been good. Give yourself time! I very rarely get up to use the bathroom unless it's to pee. We also have a very old dog, so I end up getting him up and then try to go back to sleep. None of it is pouch related lack of sleep. Immodium before bed also helps. [ more ]
Mysticobra Oh. 3 months. Definitely. I was told minimum 18 months for it to straighten out. I gave it 26 months. It's a huge adjustment and takes more than 3 months. Body and mind. I hope it smooths out for you. Truly. Richard. [ more ]
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J-Pouch ForumsGeneral Discussion
I just have some questions
EricaLeeJpoucher I'll try to get a prescription then because this no appetite is making things worse. A lot of people are worried about me because of this and the weight loss too. I do want to lose weight, but not this much weight.This has made me very weak and I hardly have any energy anymore. [ more ]
CTB23 I didn't hear of the until I was hospitalized. Never understood why my GI didn't prescribe them to me. Might have saved a hospital trip. As a side, when my cat wouldn't eat, even the vet. prescribed them for him. Worked right away.. [ more ]
CTB23 No I had a prescription for it. [ more ]
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J-Pouch ForumsGeneral Discussion
Help me fight VAC. Retired Canadian Military.
toiletcamper Our health coverage is amazing, that is not the problem. I am looking for a favourable decision so any meds, devices, treatments, are covered. Right now I have coverage that I pay for but it only covers so much. I am going to have a hard time with working, my pension covers the bills at home, but the extra cost of the meds, devices, and treatments is going to bury us in medical expenses pretty quickly. While I served the medication was free, now retired I have about 70% coverage. If VAC... [ more ]
Jan Dollar I don't know how Canadian armed services policy works, but in the US diseases contracted during active duty are considered service connected disability. At least that was how it used to be. What are they telling you? Are they saying you are discharged and on your own? Even so, doesn't Canada have universal health care? Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Question on ilex paste/butt burn
Scott F Itching is sometimes a sign of a fungal infection, and moisture barriers can make that worse. Keeping the area dry and treating with an antifungal cream (or powder) is better *if that's what's going on*. [ more ]
Former Member I wouldn't worry too much about passing gas at present, it's still early days, but best err on the side of caustion and any sensation or urges to pass anything, even urinating, do so on the pan, be safe, not sorry. After my takedown, for maybe at least 4 week I was unable to urinate stood up, could only do so while stitting during a BM, so I didn't even try, just all occurred naturally and without even thinking about it; same too with passing gas; for maybe 9 months, I only passed gas during... [ more ]
Bobish Kc23, sorry to state the obvious, but if your worried about paste in the hair, why don't you shave the hair? Just exfoliate the area after and you should be fine. As for the itching, yeah it's the same sort of thing as butt burn, mine tends to start inside the sphincter. Good anal care really helps because a sore anus does mean you feel the need to go sooner. Clean any dirt immediately (even of still sat on the loo), use soft paper and blot, don't itch the area, try to keep the area clean... [ more ]
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J-Pouch ForumsGeneral Discussion
Heartburn after surgeries
AllyKat Yes I had it after my last surgery it lasted a few weeks. I was given some med, can't remember but decided to ride it out my surgeon said it's common I hope you heal quickly. [ more ]
jodiloveslife Protonix has helped me with my heartburn and reflux. Hope you find some relief soon!! [ more ]
Dtoews13 Lol, no relation to Jonathan unfortunatley. But at least a few more people can pronounce my name now. I was told to try Nexium next, so thats what im going to ask for next time i see my dr. If that doesnt work i will inquire about dexilant. Thanks for the suggestion [ more ]
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J-Pouch ForumsGeneral Discussion
spot bleeding from skin tag or hemorhoid?
Pouchomarx ok, I was also on Cipro for 10 days up until 2 days ago as well, I was able to get my phone camera back there and I can see the little hemorrhoid next to the anus, its maybe a half size of pencil eraser. The thing I did notice more is my area an inch or two from the butthole outward is red. not angry red but not happy red. I am thinking maybe from all the hemrhoid cream and the Cipro maybe I have a fungal issue now?? I have Nystatin powder still from my stoma days, should I dust it on back... [ more ]
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J-Pouch ForumsGeneral Discussion
Alternatives to Zoloft
Erik R I take 50 MG of Zoloft and 1 MG of Ativan at night. And man has my body become dependent on them. If I miss my Zoloft dose, I get these weird dizzy headaches (never got these odd type of headaches until I started taking antidepressants about five years ago) If I miss my Ativan dose, I can't fall asleep. I don't think neither seem to affect my digestive system but they sure affect other stuff. It gets frustrating taking these pills. I got this surgery so I could get off the meds (Asacol,... [ more ]
Goentropo ❤️
Lesandiego I thought Zoloft was going to rip my pouch apart after one dose. ativan (or Xanax) is my go to happy pill. Lexapro could have been one of the reasons for my serious hair loss after step one. [ more ]
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J-Pouch ForumsGeneral Discussion
Fistula and low iron not anemic
J moons I had drains inserted and removed for 13 months (with seton bands and debridement procedures) but the fistula finally closed on its own. Ideally, getting a temporary diverting loop Ileostomy while have a drain placed would work best but I really didn't want to have the Ostomy. I still worked during all of this. I was lucky to have an interventional radiologist willing to continue working on it with me. You can PM me if you'd like to discuss further. [ more ]
bwillis77 Thanks for the response. I am hoping for no surgeries, but not feeling confident. We will see after my visit this afternoon. I am going next week to a hematologist/oncologist to see about the iron infusions. Thanks! [ more ]
min990 Hi BWillis, It's good that you've arranged to see your surgeon so he can examine you further. With regards to treatment of fistula-in-ano, theres nothing you can do except opt for surgical management with a minor procedure. The procedure is called a fistulotomy which unroofs the tract to allow for drainage. A seton stitch can also be placed which allows the area to heal. Again, I wouldn't get too caught up with these procedures unless you know for sure you have a fistula! Iron infusions are... [ more ]
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J-Pouch ForumsGeneral Discussion
Indefinite diversion with pouch in situ (no excision)
Kushami ❤️
TE Marie I had surgery to divert my stool to a permanent ileostomy 6 months before I decided to have ,you j-pouch removed. My Mayo Clinic surgeon said this would give me more options. The permanent ileostomy is night and day better than from the temp one! But it takes a while to get used to. You might want to read in the ileostomy topic here. The hope is that by resting your j-pouch it will heal. Then they might take your ileo down to your j-pouch after it heals. My surgeon also said the surgery to... [ more ]
PeskyPouch Hi *CJB* and thank you for your reply. I hope your cancer treatment has been successful. Whilst the recent chemo is contributing to the problems, they started about nine months after my takedown and I have had ups and downs ever since. My surgeon considers the pouch to have failed. So I think it's definitely the right option for me to have it diverted now while I'm fit ish. I coped through the chemo first time round as there was an end in sight. But now the cancer is incurable so I'll be... [ more ]
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J-Pouch ForumsGeneral Discussion
Traveling to Rome
mgmt10 I was in Rome last summer. Please go if you have the opportunity! I had no issues finding bathrooms. There is a restaurant every 100 feet! And the food is so good and fresh in Italy. I did not have a problem the entire time with anything I ate and I ate like a Queen! I want to go back! Enjoy! [ more ]
gemdori Kudos have a wonderful trip. Please let me know how you find Rome if you are traveling there as well. Thanks so much for all the information. [ more ]
iHateColitis I'm about to go to Italy in April. I thought I wouldn't be able to travel internationally after my surgery. In the last year, I've been to Mexico, Turkey, Paris, London, and now Italy. I won't let this stop me from living life. [ more ]
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J-Pouch ForumsGeneral Discussion
fillings?
iHateColitis thank you! [ more ]
skn69 Not only was it unfounded but it made a lot of money for dentists who were unnecessarily changing perfectly good amalgam fillings (about 30 + yrs) for composites (15+yr). They claimed that they cause arthritis, cancer, blood diseases and a whole basket of other diseases...do not know who started it but it caught on like wild fire... My dentist refused to change mine telling me honestly that it was all hooey... That said, the white composite fillings are much prettier than amalgams but that... [ more ]
Jan Dollar I don't know about any correlation with UC, but a number of years ago there was a phony health scare about the mercury in amalgam dental fillings. The scare was regarding systemic absorption of heavy metals, leading to all sorts of health problems. People were having all their metal fillings replaced at great expense. These fears were unfounded. Unless you have a very serious allergy, I would not worry about it. https://www.fda.gov/MedicalDev...malgam/ucm171094.htm Fast forward to today. [ more ]
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J-Pouch ForumsGeneral Discussion
Butt burn tip!
Lin I use Calmoseptine, which works, but I can't stand my clothes being stained (I have tried putting petroleum jelly on top of it but that is just as difficult to get out of clothing in the laundry). I have also used Critic-Aid clear by Coloplast, which was given to me at the hospital after my take down (August 2016). This works very well and very little staining. I am hoping to find a butt burn solution that is clear like the Critic-Aid but is over the counter. The ingredients in it are:... [ more ]
Jan Dollar Yes, in the US those tablets are sold as Colestid and Welchol. Essentially the same as cholestryamine. Jan [ more ]
clouwho2 ❤️
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J-Pouch ForumsGeneral Discussion
Dry Eyes
Jan Dollar I also have dry skin/eczema in addition to dry eye syndrome. One thing that has been very helpful, other than Restasis for maintenance, is daily eyelid cleansing. I use Occusoft eyelid cleansing foam when in the shower. This has been a big help. When I have a lot of irritation I use warm compresses on my eyes. This helps the natural lubrication to flow (not the tears, but along the edge of the lids). The only moisturizer I use on my eyelids is Vaseline. Jan [ more ]
J moons Chrissey, do you wear contacts? Can I ask what other meds you're on? Yes BC cause dryness but not very commonly. Anything that dries your skin out can dry your eyes out. For instance, taking anti allergy meds like Claritin will dry your nose out (which is what you want) but it'll dry your eyes out and allergens will remain in the tear film longer. Any drugs that stimulate your sympathetic symptom cause dry eyes and blurred vision. CaffeOne also causes problems. Changes in hormones in pre and... [ more ]
Bobish Spooky, I was told me eyes were dry because I stare at a computer screen all day, and therefore forget to blink (that turned out to be wrong). Appreciate that's considered different to dry eye syndrome where the tear ducts fail to produce 'sufficient' eye juice, but I wonder how many people would benefit from just trying to keep moisturised hands and face moisturiser well away from eyes. people think that as long as the cream doesn't go in the eye they are fine, but actually the skin is so... [ more ]
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J-Pouch ForumsGeneral Discussion
Incision site clothing
Former Member This doesn't sound right; is your Doctor, Surgeon or Nurse aware of this ? Is the the wound hot to touch or noticabily warn compared to other areas of skin of your abdomen, if so, I'd say you have some kind of infection. After the creation of my J pouch; other than discomfort when getting up whilst in bed or moving from the bed to a chair, I experienced no pain at all and within 10 days my wound had healed to an extend that a dressing wasn't even required but was still applied to reduce risk... [ more ]
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J-Pouch ForumsGeneral Discussion
1 Week post-takedown. Feeling really discouraged.
Scott F Beano works great on gas from beans, broccoli, Brussels sprouts, and similar vegetables. It has no effect on any other sources of gas. [ more ]
Vran23 Thank you so much! I think she was more along teasing me because she said also this is a Type A thing it doesn't happen as often to Tybe B people. She knows my history of going to chiropractors for my back problems from soccer and knew previously that I can't not relax to get adjustments fully. I had an incredible surgeon at the Cleveland Clinic and she honestly had the best bed-side manners and is very intelligent. She's the top J-Pouch surgeon currently there and her husband does the same... [ more ]
Vran23 ❤️
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J-Pouch ForumsGeneral Discussion
excess gas, yellow fatty stool and burning anal pain
Betty Boo Just thought I would post my results in case anyone has similar problems. I had an ultrasound on my gallbladder and it showed a lot of sludge! My consultant said I need my gallbladder removed as this seems to be what has been causing my anal pain, along with all my other symptoms. Hopefully this will help anyone who may be experiencing anything like this. Thanks again Bernie [ more ]
Betty Boo I appreciate it isn't caused by the pouch, but in hindsight I have had the oily output for over a year but didn't take much notice as what comes out varies as to what you eat with a pouch.....I do know that every time I have been on ciproxin, the gas and fatty stool goes, but then after about 10 days the pain starts up again and eventually all my symptoms are back. It's definitely not a fissure or ulcer as I had the scope last week and my consultant is the top man in this area (I'm in the UK... [ more ]
Scott F Fatty stool isn't caused by a J-pouch. It can be caused by medications, olestra, or small intestinal, liver, or pancreas problems. The combination with excess gas suggests SIBO to me. None of this directly causes anal pain, though. I still suspect you may have a hard-to-see anal fissure, or perhaps a very painful ulcer in the area. You could try sitz baths without any cost or risk. Good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
Need Recommendation for Cleveland Clinic surgeon for yearly pouchoscopy
Bruce D For a pouch exam you might consider Dr. James Church at Cleveland Clinic. He is a colorectal surgeon and did my pouch procedure sixteen years ago. He suggests follow up exams on a two year interval. [ more ]
Ryannsmom I'm sure there are different severities of pouchitis, depending on how much inflammation is present. Sounds like your case was definitely severe. I was treated with Cipro for several weeks after I was diagnosed. [ more ]
Anne B. Obviously, you must not have been experiencing pouchitis when the surgeon did your pouch exam. A C.C. surgeon did the exam when I had pouchitis, and the pain was unbelievable. Later, I was referred to Bo Shen, and he promised a pain free exam with IV meds. I will go to Dr. Shen again in the future. [ more ]
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J-Pouch ForumsGeneral Discussion
Reactive Arthritis
Anne B. After my horrible reaction to NSAID drugs last year, I will never take another one. Sulfasalazine seems to help the pouch; not so much with the arthritis. But I can deal with that pain, so far. The most important thing is to protect my j pouch. Thank you all for the feedback. Makes me realize how fortunate I was for 20 years, before the NSAID. Just wish I was informed prior to that [ more ]
JLH celebrex is suppose to be a NSAID that doesn't upset the GI. it did, however, trigger pouchitis with me. pity as my joints had far less pain. it works for others and perhaps it could for you? ask your doc. levequin caused extreme tendonitis throughout my entire body. i was very fortunate in that it went away once i stopped the meds. that too was a pity as it kept the pouchitis under control. others can never get rid of it, according to web testimonials. hope you feel better, janet [ more ]
Anne B. Thanks for your replies. Now I know I'm not the only with associated arthritis to our bowel problems. I recently had cataract surgery, and having very slow recovery. Inflammation there too. [ more ]
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J-Pouch ForumsGeneral Discussion
MLB pitcher Jake Deikman talks j-pouch surgery
Mysticobra No shame in what we have gone through. We should be heros. In fact. We are heros. Anyone who can go through this and come out the other side with a positive attitude. Well. Is a hero. We go through alot to get to our destination. R. [ more ]
KC23 Always good to see "famous" people come out and talk about there conditions to the world, unashamed and as encouragement to others who have suffered similar health issues [ more ]
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J-Pouch ForumsGeneral Discussion
Red raw irritation around stoma
EricaLeeJpoucher My incision was stitched close and my surgeon took the stitches out after a while. Am I the only one who had stitches in their incision? [ more ]
min990 I should add that my incision site healed in 3 weeks, and I was dressing free then. Now the scar is just shrinking and changing colour (which in itself is a year long process) [ more ]
min990 Hi KC23, Most surgeons opt for an purse-string suture closure (aka open closure). It looks like this: FIGURE-2-Pursestring-closure.png The muscle layers underneath are closed the traditional way, just the skin is left slightly open. It heals in about 3 weeks and ends up looking like a gun shot wound. So you might want to get creative with your story. Studies have shown that cosmetically, the outcome is similar in terms of patient satisfaction. It just looks uglier for the first few months. [ more ]
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J-Pouch ForumsGeneral Discussion
Medical Cannabis
StarryNight Here is a link to a brief article explaining, among other things, why some CBD oils are legal in all US states and, therefore, are available OTC at many health food stores. https://m.facebook.com/LifeSou...38533821/?type=3#_=_ [ more ]
TinCan Yes, I take medical cannabis everyday in the form of a tincture. I predominately take a CBD heavy form of cannabis as it has shown the most promise to date as an anti-inflammatory. As mentioned in a previous thread, I also take an over the counter form of CBD oil called Charlotte's Web offered by the cwhemp.com. It contains an extremely small amount of THC (thus making it legal to sell as a hemp oil food). [ more ]
Tino2000 hey bobby, what type of cannabis are you triying? do you smoke or you have oil? do you take it all day? [ more ]
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J-Pouch ForumsGeneral Discussion
15 days since takedown surgery
rlblife Thank you all so much- today marks 3 weeks since my surgery and I am literally taking it one day at a time, yesterday I was out walking around for 3-4 hours, today I had to come home after less than 20 minutes... I know in the grand scheme of things that this will all pass, but wow, this last surgery really has me wiped, and getting off the steroids isn't helping things at all. I am sure its a big contributor (because my bloodwork is back and my counts look good, I am not dehydrated and I am... [ more ]
Jan Dollar I'd like to say there was some vitamin, diet, or exercise regimen to speed up this process or make it easier to deal with. But, unfortunately it is time and patience that is needed. Forcing yourself to go out, feel sun on your face, interact with others, etc. does help. It does not speed up the process, but does help get your hormones pumping and your brain working. It helps to ward off depression, which is easy to fall into when you are dealing with chronic fatigue. Jan [ more ]
rlblife Thank you guys, I agree that the combo of surgeries and adrenal insufficiency is a really tough one to bounce back from. The encouragement means the wold, and any tips to help get my energy back would be AMAZING! Without an appt or NEED to leave the apartment it feels like I could easily stay all day, yet I always feel better once I get outside, hmmm. [ more ]
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J-Pouch ForumsGeneral Discussion
Endoscopy phobia, anyone?
Ikh Ciao Jan, my problem is the air... We in Italy are using the flexible sigmoidoscope... Thank you. [ more ]
Jan Dollar Some folks here still get their exam via a rigid sigmoidoscope (sometimes called the chrome broomstick). I haven't had that since flexible fiberoptics were invented many decades ago. That device is indeed painful. Most of us are scoped with a flexible sigmoidoscope, or even the more slender pediatric scope (what my GI uses). These are not painful, but there is some pressure and cramping from the air that is pumped in. I have not had sedation since my colectomy, and haven't needed it. Jan [ more ]
Ikh Thanks to all! Perhaps my first endoscopy was unconfortable because of my tension or perhaps the equipe was not very good (I'm not the kind of person who always criticizes but the doubt could arise). [ more ]
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J-Pouch ForumsGeneral Discussion
Cuffitis or Pouchitis or Combo
Jan Dollar You can have an abscess without obvious pus draining. Often, it is just bloody or blood-tinged serum. With an abscess, it is very painful before drainage, and just tender after it drains. If in the anal canal, the open edges will be sensitive to fecal or urine drainage. Jan [ more ]
KP Thanks for the reply! That makes sense. I can add cuffitis to my other issues. I recently read that before fistulas open, they often feel like a bump, boil, bubble, or zit. I've definitely felt what I would describe as a bubble on the right side of my anus when having issues emptying. I've probably felt this bubble 6-7 times over the past year. Not typically painful to sit down or touch, but it burns once it's open. I thought it was an inflamed hemorrhoid and maybe it is. When I notice the... [ more ]
Jan Dollar Bleeding is the hallmark of cuffitis, but you can have minor inflammation without it. Otherwise, the symptoms are the same as pouchitis. There are no pain receptors in the rectal or ileal tissue, so that "broken glass" pain is due to damage in the anal canal. There are a lot of pain receptors in the anal canal. Fissures are the likely culprit of pain with bowel movements and minor bleeding. The discomfort associated with pouchitis is due to stimulation of stretch receptors (like gas... [ more ]
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J-Pouch ForumsGeneral Discussion
What to expect with takedown
GB2014 The surgery itself is easy compared to the others. What follows afterwards is different for every person. Many people have a rough time of it at the beginning and in the following months but personally speaking, I was out of hospital in three days, I don't remember any great pain, I had no urgency, no issues going to the loo and although there was some painful butt-burn for a month or so, I got by just using normal, wet toilet paper. A year later I have an excellent quality of life and the... [ more ]
CTB23 Sorry to hear that. Yes, I do remember having to move around in different positions. Did they insert a tube and then run fluid through your rectum and into the bag? That's how mine was done. I remember they had to get a thinner tubing because things were a little tight down there. Anyway, good luck with upcoming appointments and takedown. [ more ]
KC23 It sucked. I wish I had taken my pain medicine before lol. But they are strict in here in GA about it that I just try to conserve it.. I thought it would be like a fleet enema , but nope. They taped the enema down and made me move in all these different angles. They weren't allowed to tell me if my jpouch was leaking or not but I knew that before they did the x-rays. Hopefully all is well. I could see my jpouch for the first time on the computer screen but idk if my surgeons office will call... [ more ]
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J-Pouch ForumsGeneral Discussion
Jpouch Art Model
jakedude also, I got a lot of compliments and not a word about the scars. defiinitely felt good and hope it encourages you all as well. we can do anything that anyone else does but IMO even better [ more ]
jakedude thanks everyone. so the modeling went great. nobody mentioned the scars . [ more ]
Jpouch1064 What a great thing to do!!! Perhaps you will get a chance to educate others!!! Every scar has a story. Out stories are ones of courage! Of coming through the flames and being forged, rising out of the ashes like the Phoenix!! [ more ]
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J-Pouch ForumsGeneral Discussion
Oldest People with a J-Pouch?
sweet honey ❤️
JLH Cyndi Have you tried pelvic floor PT? It's a very humiliating process but boy did it work for me The key to control is developing your core. Do you do Pilates? I have a k pouch now, but that was for other reasons. J [ more ]
Cate I just joined this forum after suffering alone with complications of colectomy and j-pouch surgery for about 10 years. For me, the use of opiates to slow my gut down was essential. It was the only medication that slowed down the transit time of food without giving me gas. Not to mention, it helps with pain too. But once transit time increased and there weren't so many stomach and bile acids reaching the pouch unprocessed, my gut and pouch improved immensely. I just can't believe how many... [ more ]
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J-Pouch ForumsGeneral Discussion
After eating how many hours does it take to go thru system
TCM Speaking of Imodium, you may already know this but in case not, you can buy Loperamide (the generic) at Costco (perhaps Sam's Club too) for a lot less than Imodium. I recently paid $5.49 for 400 pills at Costco. Also, a couple of years ago when we thought Costco might stop carrying them (false), I bought a year's supply of Loperamide through Amazon at a good price. (don't remember the details but it was lower than Imodium. I take 3- 4 pills every 3 - 4 hours so I really go through them. My... [ more ]
Jpouch1064 Right after my surgery, I was not prepared for how different things come out. I would see some really weird colors and wonder what did I eat or drink? I had to think about it. I don't think about it now however. Grease goes though me in no time flat. Grapes, I just don't eat. I will be in bathroom pronto. It just varies for me and it may depend on if I have immodium on board. It could be 5 min or 5 hours. [ more ]
Carey Mine vary with what and how much I eat sometimes it's an hour and sometimes if I get lucky it's 3 hours before I have to go [ more ]
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J-Pouch ForumsGeneral Discussion
Surgeons
Jpouch1064 Total colectomy with one stage Jpouch 1991 Mayo clinic by Dr. Wolfe!!!! Wonderful life, can't get colon cancer if you don't have a colon!!! [ more ]
Joan Gilbert Eric J. Fonkalsrud, one of the pioneers of the pouch, ileo-anal pull through. He was cheif pediatric surgeon at UCLA in Los Angeles. I had not one complication and have not since my 1989 surgeries, thank You, God. Amazes me how I could have such a life altering disease just pulled right out of me followed by 26 years of life without UC. joan [ more ]
ZUPPSS Original surgery Dr. Greenstein @ Sinai in NY. Pouch advancement Dr. Sonoda @ NY Presbyterian. [ more ]
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J-Pouch ForumsGeneral Discussion
SBO - First One
Jan Dollar I agree with Scott. Until this becomes a chronic problem, there is no way to predict whether it will become one. Also, there is probably nothing you did or didn't do to contribute to this. Just one of those things. If studies could find no evidence of obstruction, my guess is that this is temporary or something else. Last year I could swear that I yad obstructive symptoms or gallbladder attacks. Investigations were negative. Turns out it was all pouchitis and maybe small intestine bacterial... [ more ]
Scott F Yuthgi, your question was about the future, and no one can really predict that very well. A partial obstruction like this is most often caused by the bowel twisting or kinking around an adhesion. Once it gets fully unkinked it will act like it has for the last 20 years. The kink or tight turn narrows the path through the gut, and solid food can get backed up quite painfully (though the food generally doesn't cause the obstruction). Liquids should cause you much less trouble. If it hasn't... [ more ]
Yuthgi No replies in here... that's disappointing. After and EGD and a ileoscope this morning there were no apparent reasons for what seems to be obstructions/adhesions in the small bowel. The next step is a lower GI/barium study of the entire small bowel. After eating lunch today, an hour after I am cramping again as the food seems to have hit the snags in my small bowel. I'm still in the same place. Any suggestions for how to break these "blockages/slowdown" myself? Laxatives? Anything over the ... [ more ]
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J-Pouch ForumsGeneral Discussion
Afferent Limb Syndrome - constipation
Scott F This is called Pouch Advancement Surgery. A number of folks here have had it and may be able to share their experiences. [ more ]
TomU Thought I'd give an update - the title of this thread should actually read Efferent limb syndrome (not Afferent). A small but important distinction as it is my pouch outlet rectal cuff that is elongated not my pouch inlet. Anyway I have finally been diagnosed with Efferent limb syndrome and am to have abdominal surgery in London to take out the pouch and cut the excess rectal tissue off that is causing all the problems (3-4cm of rectal cuff I'm led to believe). This will then be pulled down... [ more ]
Caroline Seguin When I can't empty my pouch completely or have trouble, I use my anal catheter and it works wonders. when I am constipated I found that the only cure is to drink two big glasses of Welch's grape juice. No my favorite but it does the trick. Good luck [ more ]
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J-Pouch ForumsGeneral Discussion
Almost two months post take down
min990 Hi Erica, For buttburn, I use a bidet seat (you can buy them on Amazon) and calmoseptine paste. They've been a life saver. The bidet washes away the acidic output and also gives your bottom a break from the rubbing / irritation of toilet papers. In terms of difficulty evacuating, I bought a squatty potty which seems to have helped! I've also found that sometimes I just have to sit on the toilet for 10mins and wait.... Also, I try to keep my stool a bit more towards the liquid side as I found... [ more ]
EricaLeeJpoucher Thank you all for help and I'm glad there's others who know what I'm going through. I will try your suggestions and hopefully it will get better soon. [ more ]
Former Member Apply ilex Paste to affected area either to prevent of relieve pain and discomfort. I also insert ilext paste just to the inside of the sphincter, as far as comfortable to apply on tip of finger, this works for me and durring application, due the cooling effect of the ilex, I'm able to pinpoint exactly where the fissure is. [ more ]
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J-Pouch ForumsGeneral Discussion
EVENING BMS ,PAPRIKA AND RED PEPPER
min990 I'd try a more bland diet for a couple of days and see how you get on. If your BMs are still much higher than usual, maybe get in touch with your doctor to discuss the possibility of pouchitis. Also, in terms of lying down, some people have mentioned in the past that lying on their back rather than the side helps. Worth a shot! [ more ]
GriffN Spices can definitely irritate your guts. It's so individual. Certain spicy food actually helps me out. However, even the same spices cooked with different food (that I usually tolerate) will keep me planted in the bathroom. I have the same issues with lying down. Basically, my guts seem more willing to move when I'm in bed. Also, I can only safely pass gas when I'm on my back. Most nights I'll try to sleep, then feel urgency for the bathroom. I'll sit for 10+ minutes on the toilet and not... [ more ]
skn69 Your body and pouch are very individual but yes, certain spices can stimulate output, gas and irritation. It is possible that both of you don't like paprika or red peppers (sort of the same thing)...Avoid them for a few days to see if it is you or your wife's cooking! Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
J pouch
J moons Awesome. Good luck! Let us know. [ more ]
tf Just received the xifaxan today. My ins approved the drug 100%, it was $2000.00. Thank the Lord. I will give a update after my treatment is over and if it helped . I pray it does and for everyone who has to face these challenges daily. [ more ]
tf I can say that my dr would have prescribed the antibiotic without the test. I insisted. These symptoms I have been having could have been over a yr or 2 now. At some point our dr's don't know what else to say. My surgeon told me he doesn't have enough knowledge to help me anymore. He said if I need any other surgery in the future I have to go to Cleveland clinic. [ more ]
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J-Pouch ForumsGeneral Discussion
Meds Ideas PLS
jeane I also use flax seed to bulk up and slow down my stool and as Scott mentioned, many docs really prefer Imodium over lomotil as it does not cross the brain and my GI used to say. [ more ]
Scott F Wendy, I'm not sure what side effects your doc is concerned about. Imodium works similarly, is OTC, and works just as well for many. I prefer Lomotil, but I only take 1-2 daily. Metamucil doesn't exactly slow the ship, and actually bulks up the stool, but it feels like a slower for some people. I use it twice a day. [ more ]
Wendy@work ❤️
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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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