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J-Pouch ForumsHelp! Need advice now!
Cherrios and bananas
MIKEEYMIKEEY
Linguist Oranges and pineapple? I wish I could too I would have to plan to stay at home all day long and have the pain relievers and buscopane ready by my side if I wanted to eat those fruits... How lucky you are! [ more ]
Jan Dollar I eat any and all cereals, with the only qualification being that I like the taste. Cheerios, Life, Special K, granola. I do avoid "sugar bomb" cereals, but not because of effect on my pouch, jst health reasons. I also eat fresh fruit every morning. Bananas, oranges, pineapple, blueberries, strawberries, kiwi fruit, you name it. No juice (too high in glycemic index). Jan [ more ]
MIKEEY Thank you so much, have a great day and God Bless. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Gaining weight
alecz222alecz222
Scott F If you haven't actually had any problems from fibrous foods you might want to reintroduce them, slowly and in moderation, as part of a more normal diet. If you're actually getting dehydrated that's both preventable and terrible for your health. Neither of these suggestions relates closely to your original question, though. Nutrition is absorbed along the small intestine, and almost all of that should still be working fine. If your transit time is too fast your food might be getting by... [ more ]
alecz222 No, I do not have any issues with my GI tract. The total collectomy caused most, if not all, of my UC symptom to go away. Now the only issues that I have are side effects of the j-pouch (i.e. dehydration, drowsiness, etc.). As far as skipping meals go, I never skip a meal. I am usually the one pushing others to not skip meals because I feel like maintaining at least 3 meals a day is very important. The only food I avoid are fibrous foods that may cause blockages or natural laxatives (such as... [ more ]
Scott F Aleczz, are there any issues with your GI tract other than a short bit of your small intestine being repurposed into a J pouch? Are you skipping any meals or avoiding certain foods? [ more ]
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J-Pouch ForumsHelp! Need advice now!
NYC Pediatric GI
AllyKatAllyKat
Jeffsmom My son is treated at Cornell. I don't know any peds drs but everyone we have worked with has been awesome. [ more ]
AllyKat Thank you [ more ]
TMG Dr Marla Dubinsky is amazing! I do not believe she treats kids only, however, she was my child's 2nd consult re: j Pouch surgery. Dr was located at cedar Sinai in CA. In 2012. I hv heard she moved to NY in 2014? [ more ]
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J-Pouch ForumsHelp! Need advice now!
The worse pain I've ever had
EricaLeeJpoucherEricaLeeJpoucher
EricaLeeJpoucher Yes I'm very naseous and I have been burning up. I don't have a thermometer to check my temperature though. I'm going to call my doctor in the morning because it's 1:05 am here. It's not going away either. [ more ]
J moons Are you nauseous? Could be a small bowel obstruction or if you have a fever or feel nauseous possibly an asbscess? I'd call you doc immediately. [ more ]
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J-Pouch ForumsHelp! Need advice now!
c diff after hip replacement
B BethM
Scott F C diff is pretty easily transmitted, as you clearly know from your bleaching plans. S. Boulardi (Florastor) may help prevent C. Diff for folks on antibiotics or otherwise at risk. I don't know if does anything to help treat an infection. If the antibiotic (usually Flagyl or Vancomycin) doesn't clear the infection it turns out that FMT (Fecal Microbiota Transplant) works brilliantly. This is basically a stool transplant from a tested/cleared donor. Good luck! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pain and heaviness
Anthony1977Anthony1977
Scott F For CareFirst the most that's needed is a simple doctor's letter citing their policy and declaring VSL #3 DS medically necessary for maintenance of your ileal pouch. You might even be able to skip the doctor's letter if you cite the policy. The VSL will be denied at the pharmacy in any case. Once they agreed to cover it they gave me instructions for mailing the receipt in monthly. It eats through my deductible pretty quickly. [ more ]
J moons Thank you. The doctor did prescribe the VSL (non DS version) so I will have to work on that. I do, in fact, have CareFirst BCBS so this'll definitely be helpful if I move forward with it. [ more ]
Scott F If it's really the same Blue Cross plan (CareFirst) then the insurer would promptly agree (on appeal) to honor their own policy. If it's a different Blue Cross plan then they might be influenced by CareFirst's policy. I definitely encourage you to use this well-researched and well-written document. You may have to be willing to appeal to a higher authority than the insurance company. My state's insurance administration was very helpful, but it still took a long time. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Dealing with Piriformus Syndrome
L 10larry10
Scott F I'm dealing with this today. There are some very helpful stretches that keep me functional when my piriformis is acting up. You can find videos on YouTube demonstrating them. They sometimes hurt like a #*!+@, so I wouldn't recommend doing them in a cubicle. This is one situation that causes me to use an NSAID for a couple of days. [ more ]
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J-Pouch ForumsHelp! Need advice now!
My 13 year old daughter was just diagnosed with IBD-Most likely Crohns!!!
NurseAlexNurseAlex
EricaLeeJpoucher I just now found that there are kids with IBD and I didn't even realize that's possible. I guess I'm just clueless lol. I'm glad to hear that there's good outcomes for some kids. I've never had IBD and got my colon removed due to high chance of colon cancer. I have fap and it caused me to have hundreds of precancerous polyps on my colon. I also have hundreds of polyps on my stomach. I don't know if my GI wants to remove my stomach polyps or not. I do have to get an EGD every six months to... [ more ]
Pouchomarx What were some of the first signs your younger children had? I have 11 and a 9 year old daughters, and as you can imagine they don't really care to talk about their bathroom habits at all. I ask but they get all embarrassed and don't like to talk about it. I do know that my 11 year old has had constipation since she was a baby. She is always pushing and turning red on the toilet. 3 years ago when she was 8 we had an upper and lower endoscopy done on her and they found nothing wrong or of... [ more ]
BuckeyeNate First off, I'm sorry to hear that news. That is a bummer and coupled with the issues you have with your two children. It also have a 5 year old son with sensory / behavior issues that my wife and I are working through. Also, GI diseases/disorders suck and I would feel awful if any of my kids end up with UC (what I had). I guess my word of encouragement is that sometimes hardships can be blessings. I have to speak from personal experience, but getting ulcerative colitis, and then having to... [ more ]
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J-Pouch ForumsHelp! Need advice now!
blockage question
M MandiG
MandiG I appreciate your responses promptly. around 5 am I was finally able to sleep and when I woke at 6 the pain was mostly gone. I have no idea if it was a blockage or not but I did take steps that everyone has suggested for it. thank you all! [ more ]
skn69 Hi Mandig, I have some experience with blockages and I can tell you that no two are identical. Depending on where the blockage is and whether it is a full or partial blockage and how much can get through...is how I interpret symptoms. A total blockage usually feels like a mule kicked me. The site of the blockage is where I feel the kick. I cannot eat or drink anything...I cannot swallow a pill or take even a few drops of liquid under the tongue...it will start waves of vomiting, cramping,... [ more ]
Aussie I have read that drinking grape juice helps with blockage but I don't have any experience with it. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Peri-anal abscesses
J Jaypea
Jaypea Thanks Jeffsmom. I live in Vancouver BC and have access to great surgeons. I have a follow up in 3 weeks with mine (if I don't end up in hospital again) and will ask regarding a drain or something that would be a permanent fix. Hope your son continues to do well. Michelle [ more ]
Jeffsmom Michelle, it sounds like you are out of the US. My son had a terrible time with abscess and fistulia. You may want to see someone in Interventional Radiology. They inserted a drain through his butt cheek. It was in a really long time and I must say depending on placement, can be painful it hitting a nerve. The abscess has to be coming from somewhere. Do they know where? Something sounds weird to me. And is there a fistula? Usually they go together from my understanding. Perhaps find another... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Unbearable pain
D davebree7
Winterberry Jeffsmom, sometimes taking a remedy back to its simplest, pure form works. I don't know personally if raw unpasteurized honey works on butt burn, but I used to use Zincofax, the brand for babies' diaper rash burns. I was given a jar by the hospital after takedown. Calmoseptine and other stronger creams didn't really help, taking days to show relief, sometimes never, so I finally gave Zincofax a try. It healed my skin within hours. Now whenever I have occasional burning I use the cream just... [ more ]
Jeffsmom Oh, does the honey work on butt burn? Jeffrey has terrible butt burn. While the plus is working, he seems to have lots of BM's, over 10 a day and of course mostly in the middle of the night. [ more ]
Winterberry SKN69 is right about honey. I know someone who applies it to burns or cuts. Look for the label that says raw, unpasteurized honey. This is natural honey that has never been exposed to heat during the processing, and retains its natural antibiotic healing properties. I have this in my coffee or tea. It has a different consistency to processed honey. It's hard, and not liquidy like the additive-stuff that comes in a cute bear shaped squeeze bottle (that I used for years!!). [ more ]
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J-Pouch ForumsHelp! Need advice now!
Tailbone pain and pouchitis
B Bugs
Pouchomarx what did he say? lol [ more ]
Scott F I don't know what he'll tell you, but I hope you let us know. A couple of years ago I developed significant tailbone pain (it was worst when getting off a chair - I would make quite a face getting off the stationary bicycle). I never really did much about it, and it very slowly receded and is now essentially gone. OTOH I've been on antibiotics the whole time, more or less, so who knows? [ more ]
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J-Pouch ForumsHelp! Need advice now!
4 years after surgery and lots of blood
JN J-pouch Nick
Jan Dollar You really need a primary doctor. Your surgeon and GI only focus on their areas of practice. ER departments focus on emergencies. My back pain started a decade post op. I could not take ibuprofen anymore due to liver inflammation. My primary referred me to a rheumatologist. That was when I was diagnosed with IBD related (enteropathic) arthritis. All my labs and imaging were negative. Certainly, the fact that you have abdominal symptoms in addition complicates things. But, you need doctors of... [ more ]
TE Marie Seizures are Scary! Have you asked them why they think you are asking for pain relief for the 1st time in 4 years? This is the first time the OTC pain meds have not worked. Some take Flagyl or other antibiotics together. Just saying that they are not exploring all of the options yet. The doctor gave you steroids and you still have blood in your stool! If it is cuffitis I bet that is not picked up in a CT scan. That is why more tests are ordered, right? My cuffitis caused blood and pain. [ more ]
J-pouch Nick Hi TE im already on cipro and im taking 500 Tylenol. Had a friend run to the grocery store for me. They cant prescribe me tramadol because im extremely allergic (seizures) from it. Ive been calling non stop and voicing my concerns and they aren't going to do anything or expedite the tests. I believe they think im lying which if i was a drug seeker how do you constitute the last 4 years i was on nothing beside otc ibuprofen. It doesnt make any since to me. I havent had for than 3 hours a... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Dysfunctional jpouch
S sudie
TE Marie Not unless the blockages are in your j-pouch or right above it would your j-pouch cause blockages. I had 2 surgeries that included work on my internal adhesions/scarring. My surgeon never said my j-pouch caused the adhesions. All the open abdominal surgeries I had caused them. [ more ]
Scott F A dysfunctional pouch can make you miserable, but I'm not convinced it can cause blockages (someone please correct me if you know otherwise). Maybe you need a new doctor? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Cuffitis and Idk whether to get temporariily diverted
J moonsJ moons
Scott F Hemorrhoids (like fissures) are often described as being caused (or prolonged) by straining on the toilet. Managing whatever might be causing straining (stool consistency, stricture, whatever) would help the most in the long run. [ more ]
jeane Yes my fissure can reappear after spinning. Mine are chronic and are there more than not. As long as there is not seething pain after bowel movement I just grin and bear it. When it gets debilitating I do baths and nifedipine and lidocaine. [ more ]
J moons Scott, Yes I have been for 5 weeks now. It was called a thrombosed hemorrhoid at first back when the pain was extreme and since then it has shriveled so that the remaining skin is not tender but the slit next to it breaks open intermittently. Is the skin breaking open just secondary to the protrusion of the hemorrhoid? That is what I am describing when I talk about the ulcer opening and closing. Yesterday I went a full day without pain during my bowel movements and the skin remained closed... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouchit - crohns - or what...?
C Cath75
Cath75 Thank you Scott! Kind of freaking out here. It's been a lot... I got so surprised, disappointed and overwhelmed at the hospital and can't stop thinking about what this inflammation means. Just have to try to calm down and wait for more examinations and results, I guess. Have a nice day, [ more ]
Scott F It could be backwash ileitis, but 60 cm seems unusually long for that. Crohn's is just a word. Even if it is Crohn's, the course can be quite benign, and the treatments are often quite effective. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Bowel movements and leakage in sleep
K KC23
CTB23 I had disposable pads on the bed at night in the first few weeks. Also was able to borrow some hospital ones from my dad. I haven't needed them in quite a while. After a few weeks, I started taking Immodium at bedtime to help slow things down, and it really helps a lot. I get the Costco brand, 400 pills for a little over 5.00. It has lasted since late August and I probably won't need to buy more for another week or so. I also try to eat dinner around 6-6:30 and I don't snack at night. Low... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Black feces, butt burn and excessive gas
SW Sharon W
EricaLeeJpoucher I had black stool after I woke up from the 2nd surgery. Eventually my stool stopped being black though. I have never taken iron supplements, but my surgeon said it's nothing to worry about. As long its just because of iron supplements, then I think you'll be okay. If it worries you though, call your dr. [ more ]
averyo99 Scott, thanks for that insight! I just started taking iron supplements after finding out that my levels were low, that could be what it is for me. [ more ]
Scott F Black stool is always worrisome because it can represent old blood from high up in the GI tract (esophagus, stomach, or duodenum). But other things can cause black stool, for example oral iron supplements, Pepto Bismol, or dark-colored food. I hope it turns out to be insignificant. External butt burn can be managed by protecting the skin around the anus with zinc oxide ointment *before* stool reinjures the skin. This is easiest if you apply it after every BM. People prefer a variety of... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Small intestine resection recovery
Danab07Danab07
EricaLeeJpoucher Speaking of getting people to help when you're recovering, is a great idea. My boyfriend he takes care of me because it's hard for me to do things. I can't even carry any heavy things anymore because I'm so weak majority of the time. My mom and boyfriend carry the groceries in. My roommates also help out by doing the household chores and cooking for us. It is hard for my boyfriend to do everything himself, so it's good to have help. My roommates or my boyfriend bring me food and drinks to... [ more ]
Danab07 Adam427- Shortly after my post I ended up back in the ER with a blockage and I believe it was a blessing in disguise. I also refused the tube and after the pain subsided the blockage cleared itself, but of course I had to stay a couple days. Turns out all my electrolytes were dangerously low. After I left the hospital the 2nd time I finally started to feel better because I was given iv and vitamins. My suggestion is to drink Pedialyte, Gatorade or whatever it takes to get hydrated and see if... [ more ]
adam427 Hi Dana, I recently went through something similar. At 4am on Feb. 24 I woke up feeling like my gut had ruptured. The pain would not subside and went to the ER around 7am (after the kids were awake). They said I had a partial blockage, I didn't want the ng tube so went home to tough it out. Not surprisingly I wasn't tough enough and was back in the ER the next day, got the ng tube and waited 3 days and it never corrected itself. I had bowel resection surgery and now feel similar to you what... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Twist in JPouch
M MShampan
AllyKat No one surgery thru the anus, I still had the ileo at the time but I have spoken with others who used him for the same procedure and they did not have to have a ostomy. I guess it depends on many factors. [ more ]
MShampan Thanks for this reply. Was your pouch taken apart and re-sewn during one surgery, or was this done in several parts with a colostomy bag in place in the meantime? [ more ]
AllyKat I had my pouch taken apart , problem fixed, re centered and then hand sewn back in place. I don't know if Dr Milsom is taking on new patients but u might try a consult with him or one of his associates at Cornel. Good luck. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Fistula
C Cate87
Jeffsmom Lindsey my son went through the same thing he had his first surgery in 6/14. Takedown 9/14. He had his second ostomy, a completely open surgery in 3/15. He said the second time with the ostomy not so bad. The surgery was just as bad as the first 2. Its the same thing but in reverse. Its all difficult. There really is nothing you can do. Its all hard. Im so sorry you are going through this. But depending in where and what the fistula is connected to, they dont clear up easily. Jeff's fistula... [ more ]
Lindsey R. I'm dealing with an awful fistula and can't take it anymore! My surgeon says I need to go back to temp ileo for it to heal. How bad was the surgery to reconnect the ileo? What was recovery like? The thought of another surgery scares me to death. Do you have any suggestions for things I could be doing on my own that may help? Thank you, Lindsey [ more ]
Jeffsmom This is my area! Find the fistula before takedown. I cant image a surgeon doing surgery knowing there is that possibility. Have an MRI, CT scan, go see Interventional radioligy. If there is a fistulia IR will find it. Im in a meeting right now so i cant get into it more but let me know if you need more info [ more ]
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J-Pouch ForumsHelp! Need advice now!
Abdominal Muscle Pain after 5 years with no problems
D daviwyat
Jan Dollar Well, anything that is fixed by yogurt can't be very significant! Glad you are on the mend. Maybe just some minor bacterial overgrowth. Jan [ more ]
daviwyat Thanks Not sure what was the cause but I ate Activia and other yogurts for 3 days and the pain stopped. I will be seeing the doctor next week for a regular check up. Thanks [ more ]
Jan Dollar If it is continuing, yes you need to see your doctor. This may or may not be related to your surgery. So many things this could be. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Levator pain and abscess?
Tara GTara G
Tara G Thank you! I am trying to be strong, but as we all know, feeling poorly for long periods of time can make you not so brave! I'm heading into my next appointment with a written list of questions so at least I can walk away with a clear understanding of what's going on. And yes, he is my original surgeon and you are SO right about the proprietary thing - I had surgery done in the ER by another surgeon, and when I mentioned what that surgeon saw, my current surgeon did get a bit ruffled!!!! [ more ]
Tara G Thank you for this response - I'm not sure why, but I will ask when I see my doctor next. The abscess is draining currently - but it's not healed in over two months, despite three surgeries and non-stop antibiotics. [ more ]
Winterberry Hello, Tara. Is he your original surgeon who created your pouch? Can you ask why he believes it needs to be reversed? Are you comfortable seeking a second opinion? Your surgeon shouldn't mind if you do. Some doctors can be proprietary! You just want to know what is going on with your body. Ask what all of your options are (make a list of questions) until you are satisfied and confident in the answers so that can direct your next decisions. I hope it can be fixed and you will keep your pouch. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Humira Questions
C capper
Jan Dollar Sometimes scopes can trigger a pouchitis flare or even an anal fissure. Perhaps that is your issue. Have you tried a course of Flagyl or Cipro to get back on track? In regard to Humira have you been on weekly injections or every other week? When I was on it, I needed weekly injections. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Unbearable pain episodes
S shoflo
shoflo Thanks Scott I wandered about that if I'd not have to wait. I'm not using any of those meds or anything to cause slowing. [ more ]
Scott F Shoflo, are you using any bowel slowers (Imodium, Lomotil, opiates)? You could be overdoing it. Also, if you go to an ER with signs of a small bowel obstruction they might not make you wait very long. [ more ]
shoflo Thanks so much my GI doctor recommend I go to ER when the pain is happening but it so random and severe I can't even walk or stand when it happens. I see the surgeon on Monday hopefully he'll have some answers. I thought the jpouch was a "cure all" and I'd have no more problems. I can't possibly sit through a long ER wait when in that kind of pain. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouchitis, cuffitis and a planet of regret....
HaidalynHaidalyn
Haidalyn Thanks Alibee for the great tips!! Thanks to all of your combined wisdom and advice I'm doing a lot better at the moment. Drew you're a rock star buddy! I think it's awesome you have the mojo to go to Panama and live your life. Sometimes you just have to say screw this disease, I'm not gonna roll over and die. Yes I'm sure it's not fun having to go to the bathroom off a boat but I admire that you're out there experiencing things regardless. I've been so scared to travel that I haven't for a... [ more ]
Former Member Wow. I love you guys. I'm on vacation in Panama. I was doing so well... Yesterday I'm 2 hrs off shore fishing and had to have my guide stop the boat so I could empty my bowls in the ocean. My body waited until I landed in a foreign country 3k miles away to act up. So I jumed off the boat 3 different times to crap in the ocean. Wow. My disease is not just a job it's an adventure. It could've been worse. I could have been eaten by a shark I guess. I had my take down oct 19 2016. I feel no... [ more ]
Alibee ask your GI about ENTIVIO, it's a brand new, 1st line biologic infusion strictly for UC. If your insurance doesn't cover it there is a program for financial needs. Try it. Another WONDERFUL diareah stopper that is BRAND NEW a pill called VIBERZI. ENTIVIO took too long to work for me (3months) when I decided to get jpouch, but if I had waited, my GI's patients are doing well on it now. About VIBERZI- Drug reps can send samples to your doc if your insurance doesn't cover it. Please take this... [ more ]
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J-Pouch ForumsHelp! Need advice now!
After about 2 years I am weaning myself off the morphine sulphate.
BA Bill A
Alibee I have been given bottles of opium tincture far too generously by my careless surgeon. I live in an opioid epidemic state. My surgeon told me I'd be on it for life so I just gave up and started taking more. I have an Excellent GI who told me no surgeon should ever have told me about it and he helped me wean with a small daily dose of methadone (5mg). It has been working perfectly, it also has a lot of off-label uses. methadone is also excellent for shutting down bowels LONG TERM, while the... [ more ]
Jan Dollar Yes, but be sure to avoid sugar "alcohols," like sorbitol, mannitol, etc.. These cause diarrhea. Unfortunately, many sugarless sweets contain sugar alcohols. Nutrasweet and Splenda are fine, as long as you do not have a sensitivity. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Abrupt Discontinuation of TPN
Randers.USARanders.USA
Alibee Oh Josh, I am so sorry!!!! All I know of is the Cleveland clinic in PA and MT Sinai in NYC to be specialists. I'm alone and broke, needing a new pouch with no way to get one but if you have people to take what you've written and find the right doctor, start an urgent GoFundMe and use the doctors/ hospitals name in your claim so they are publicly seen- they will want to help. I really hope you have someone to help you do this advocating. Hang in there brother! You're not alone! [ more ]
Jan Dollar Wow Josh, that is a mouthful! I am sorry that you are having so much trouble. It would seem that you already have asked people with more knowledge about the ethics and legality of your treatment, so I don't think I can help you there. Playing devil's advocate here, perhaps they felt your best option was to try and repair your reason for needing TPN. Refusing their recommendations might have meant that you did not need their expertise, since you can get TPN most anywhere. Do you not have any... [ more ]
skn69 Hi Josh, First off, it is great to hear that you are still alive and kicking albeit still suffering horribly. Next, do you have a lawyer? Seriously. I have never been very into law suits and attacking anyone for anything but this situation requires some rather decisive action and no one is going to listen to the sick guy...on the other hand, they will listen to a legal document sent using strong language and lots of threatening jargon about putting your life in danger, being liable for your... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Nausea, Headaches, and Sleepiness
alecz222alecz222
alecz222 My yearly appointment with my doctor is coming up soon and I plan on discussing these issues with her. My job actually requires me to be on a computer a good bit of the time but I am going to try to find some ways to get my eyes off the screen and maybe do something else, if I can. That could be beneficial for not only my mentioned symptoms but also the fact that my back hurts alot due to my always sitting. [ more ]
skn69 Another thought Alec, How much time do you spend on a screen? Whether it be smartphone or computer, the constant ocular activity could cause both the nausea and the sudden headaches... Just a thought. I think that you can track a lot of your symptoms on a health app available on Samsung and Iphone. Sharon [ more ]
Jan Dollar What does your doctor say about these symptoms? In particular, I'd want to get to the source of these headaches. They seem like migraines. Since they are frequent, even though fleeting, they may not be benign. The nausea and fatigue could be part of same issue, but they all be completely unrelated. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Anal bleeding, Pain, Cuffitis? Annucort Need j-pouch Dr. in Atlanta area
O oreoparent2
Jan Dollar It would seem that you still have a fissure, which would explain the pain and bleeding, and even the spasms of your sphincters. Fissures tend to be recurrent, so it is unclear to me why your current doctor is not considering it. If you can't get the HC suppository in, you may also have a stricture. It is easy enough to diagnose by attempting to insert a finger past the suture line. If it is too tight due to spasms, you might try inserting the suppository after a warm sitz bath. This sounds... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Leakage with j-pouch
FM Former Member
Former Member The surgeon also mentioned that a scope will be necessary to actually see what's going on that's why they cannot positively identify what the issue is. [ more ]
Former Member So today I seen a surgeon who works at the hospital I had my surgeries at 6 years ago. He said that he believes it could either be a prolapse or it could be many different things, however, since it's a children's hospital I have to go see an adult colon and rectal surgeon which I do understand it's just hard to find someone with experience with j-pouches. So I guess for now I am being treated with a hydrocortisone suppository to help with the inflammation they do suspect in my last section... [ more ]
Pouchomarx I had my pouch redone about 1.5 years ago by the great Dr Remzi who used to be at Cleveland Clinic. He also did a mucousectomy which is pretty standard with a redo. I have had very minor leakage as well even when I had the ileostomy. I was told it is somewhat common with a redo. Its not horrible and I do used a small square of toilet paper up against the hole, sometimes there is a small spot of stool and sometimes not but I keep it there just in case. I had a scope 4 months after takedown... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Potassium levels very low
G grandmaof1
Golfdrumst I recently developed a deep vein thrombosis in my left calf following 4 long haul flights in a 3 week period. Blood tests done in the diagnosis of this showed that i was dehydrated, had acidosis of my blood and very low potassium levels. I have a high output pouch and the doctors believe that this is to blame for my problems. Further tests showed that my kidney function is very poor and is about 1/3rd of what it should be. All of this goes to explain why i have been feeling so poorly for the... [ more ]
grandmaof1 Thanks everyone. You really opened my eyes up on just how our jpouch works. I guess I'm looking at it in the wrong way. Having it very runny is not a good thing. Thanks again. This site so amazing. [ more ]
Jan Dollar Unless you have a kidney or adrenal/pituitary problem, most likely this is due from too much diarrhea. Taking the concentrated potassium supplement is important, as a proper level of potassium is critical for heart and nerve function. If this is a persistent issue, you might need evaluation by an endocrinologist. Hopefully, it is just a blip. You definitely will more frequent testing than annually! Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Defecogram
BritBrat88BritBrat88
JJA Mano Tory and anal ultrasound (and even the old finger probe) can tell a lot about how the sphincter is working (or not). It is possible to get surgery to tighten the sphincter. I had that done after surgery to fix an anal fistula damaged my sphincter. It helped a lot, but I still had incontinence. Bulking the stool with fiber and Imodium or even narcotics helps too. I did notice when on heavy mess after I shattered my wrist, that high doses of narcotics actually made my incontinence... [ more ]
Jan Dollar Gee, you are already taking a boatload of powerful meds, so I do not recommend you seek more. Generally, oral pain meds are not very effective on anal pain. The pain you describe sounds more consistent with an anal fissure than a fistula. Yes, it is very possible to have both. It is also possible for your doctor to miss a fissure when doing a scope, unless he does a careful visual exam of the anus before inserting the scope. A fiisure can hide in the folds of the anal canal. Hot sitz baths... [ more ]
BritBrat88 Ok so still haven't gotten any test results but one reading from radiologist thinks I have a fistula and right noway actually thenjoy last 3 days I've been in excruciating pain..I'm having lots of fecal incontinence and it hurts like hell coming out..the burn makes tears come into my eyes and I'm bleeding and the spasms are killing me..the burn seems to be coming from deep inside my anus..could this be a fistula?? Or is there anything I can do to lessen the pain?? I'm already on percocets... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Is having gas of any value to a J-pouch owner?
LB Larry B
Larry B Thanks, guys! You answered my key question about whether gas was "necessary" to help digestion, out through the pouch. I take strong probiotics and eat a pretty low-carb diet, now, but am also on a run of Sulfasalazine to prevent pouchitis, after a bout with returning anastomosis strictures, which i now keep open by self-dilating with an18mm Hegar Uterine dilator, once-a-week. Maybe when I get off the Sulfasalazine I'll have less gas, and I 'll use Beano when I eat those veggies! Thanks... [ more ]
Scott F Beano is only helpful for gas from beans, cruciferous vegetables, etc. It does work well for those foods, though. You don't *need* gas, but to some degree you're probably stuck with it. [ more ]
skn69 I am not sure but the question may be a moot point...meaning, gas is a by-product of what you eat and what is eating you (bacteria...) and the interaction between the 2... Gas is produced most often during digestion (although you can drink it by ingestion carbonated drinks like coke or bubbly water etc). Depending on what you eat and how your body feels about it, you can produce less or more, plus pouchitis and bacterial overgrowth can also be culprits...you can find yourself in trouble due... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Loop ileostomy and anal discharge/leakage
V Vesp
Vesp thanks for the reply and things actually seem a bit better the last day or so, I think it was partially phantom bm feelings down there, my body was probably used to movement down there meaning I need to go, as with my UC it was always urgent. Been trying to stay calm and unlike with UC the feeling of actually needing the loo seems to pass. I managed to do small walks with out the urge to go after as well and actually slept through the night for the first time since surgery, though I did take... [ more ]
Winterberry Hello, VESP. When I had my ileostomy (loop), I had some discharge. A few times I even had solid BM as if I still had my colon. I told my surgeon and I don't think he believed me. I wasn't too worried about it since the nurse told me some discharge was just old blood and mucus from the big surgery being expelled, and I was getting nearer to takedown so i was okay with it. I think with the loop ileostomy some food can bypass the exit to the ostomy bag and food will go down into your anal area... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Using Rowasa Enema. Any advice?
S Sunflower70
Sunflower70 I tried the Lialda first but it did not break down in the pouch. Came out almost whole. I don't know why my doctor didn't suggest another oral form of mesalamine. I'll ask her. [ more ]
Jan Dollar How about oral mesalamine? Pentasa, Lialda, or Colazal? More than one way to skin a cat! Jan [ more ]
Sunflower70 Thanks, Jan! I wish I could use Canasa but I'm sensitive to an ingredient in it. I'm actually using Rowasa SF (sulfite free) which I had been able to use when I had UC. OK, I'll see how I do tonight. I think that I'm going to have to switch to Flagyl anyway. This was my doctor's very kind attempt to help me avoid antibiotics but I don't think it's really doing the trick since I still have a little blood. Too bad because the recent scope showed only a tiny little patch of mild inflammation. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Abdominal muscle spasms
J Joshinwash
Bodoni A couple of years ago, I experienced some minor spasms near my K-pouch. I had no pain, no cramps. I continued to eat as usual. And stuff traveled thru my intestines as always. I did tell my surgeon, whereupon he wanted me to get a MRI. He said I could have a partial obstruction. I put off any tests, etc. Finally, I agreed to have the MRI. And wouldn't you know it, on the scheduled day of the exam - they disappeared totally! Once in a while I may get a little twitch. It may last for just a... [ more ]
shaney Joshinwash, just curious as to what was the cause of your discomfort and what you did to make it better. I am about 4 months sisnce my takedown and am having some of the same issues and don't know what to do. Thanks so much for any help you can give. Steve [ more ]
Jan Dollar Sounds like this could be obstructive symptoms. If the pain is severe and not letting up, you need to go to the ER. If it is more intermittent and you are not distended, you can wait and see. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pain clinic
K KC23
Scott F The classic opiate to slow the gut is deodorized tincture of opium. It can be hard to get a prescription, and hard to get a prescription filled, but it's extremely effective. [ more ]
Cate Codeine is the most constipating of the narcotics, so it may be the most effective for you at slowing your bowel. I couldn't take it because it made me nauseous. But if you can tolerate it, it could be very helpful. I know we're in a time when prescription narcotics are coming under close scrutiny, but they are still used regularly to treat patients. I never had any of my doctors question my need for them or their usefulness in my treatment. I live in Seattle; maybe this is a more... [ more ]
KC23 Cate, codeine also slows my BM's, unfortunately I haven't gotten lucky enough to find any doctors who would openly prescribe it for that purpose l... maybe after my takedown.. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouchitis annoys the dream
T Tino2000
Jan Dollar I took Humira for a couple of years, but it was for arthritis, not pouchitis/cuffitis. Then, I switched to Simponi, then Cimzia, and now Remicade. Always just one biologic. You never take more than one. I did travel while on Humira, but only when I was on it every two weeks. I planned my travel between injections so I did not have to deal with keeping the syringe on ice. Simponi was once a month and Cimzia was every two weeks. My Remicade schedule is every six weeks. Jan [ more ]
Tino2000 Scott and Jan, thanks for your answer, My doctor saw me on saturday and told me i have some cuffitis, he didnt see upper part so i dont know how the pouchitis is. but the blood test the c reactive protein is a little high, i hope its only for that I am starting with cipro and flagyl every 12hs for two weeks and cortifoam at night(rectal administration). I hope it will get better. One doctor thinks that i could have crohn but he s not sure. Jan how long did you take humira? do you leave it... [ more ]
Jan Dollar I needed weekly Humira when I was on it. Also, switching to a different biologic is not a bad idea. I am having good results with Remicade right now. Hopefully, the azathioprine will help, but it generally should be started before you go on a biologic. You may have already developed antibodies against Humira, so it may not work. I would also prefer rectal steroids over Entocort, but a number of folks here have had decent results with it. Is your doctor thinking you have Crohn's now? Entocort... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Cuffitis
J moonsJ moons
jeane Best of luck DDS. Let us know how you make out with your surgery. [ more ]
dds Jeane, My surgeon needs for me to lose fifty pounds before I have surgery. I will have an ileostomy for a while and I am overweight so he wants me to be lighter for my own good. [ more ]
J moons Thank you. I'm not on any antibiotics since they didn't give me any at discharge But I will ask. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hemorrhoid Help Please!
J moonsJ moons
J moons Yes, I had my surgeon and another attending look at it along with a pouchoscopy. The hemorrhoid has a fissure adjacent to it which makes the pain worse. They were more concerned with the cuffitis but I don't seem to have pain from that. [ more ]
Scott F Surgeons seem to avoid hemorrhoid surgery for J-pouchers. Topical treatments may help, depending on what symptoms you're having. Are you sure it's a hemorrhoid and not a pouch prolapse? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Frequency and anal pain
I ittybittykira
EricaLeeJpoucher Thanks Winterberry, I will definitely buy that squeeze bottle. The shower does wonders for me, but I think a squeeze bottle would be more gentle on my sore butt. [ more ]
Winterberry Hello, Ericaleejpoucher and ittybittykira. The bidet that you have to attach to your toilet can be pricey, around $95 on Amazon and you *might* need a plumber, but the plastic squeeze bottle from Amazon cost around $12 - $15. I bought one before I went to my big surgery, just to be prepared. I took it with me whenever I went out, and had another that stayed home. It saved my life and my bottom. Fill it from the tap with warm water, and after you finished your BM aim the nozzle at your bottom... [ more ]
EricaLeeJpoucher After I go the bathroom, I get in the shower and wash my bottom. Then I dry myself off. After I'm dry, I use calazime with olivamine cream from Medline. It works wonders for me, so maybe you could try that. If you can get a bidet, that would help too ( I'd get one, but I can't afford it right now). [ more ]
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J-Pouch ForumsHelp! Need advice now!
Nightime
KR Katie R
Mysticobra Potatoes. I know it's weird. But mashed or otherwise have slowed me to a crawl with a pouch and with my ileo. Peanut butter does the same but not as good. But we are all different. Of course I don't know if you want to eat some mashed potatoes before bedtime. But I love buttered mashed potatoes! Lol. Good luck. R. [ more ]
Scott F In addition to Jeane's very useful suggestions you could try a small, fatty "meal" at bedtime (like a spoonful of peanut butter). Also, I'd suggest using the soluble fiber at mealtime. [ more ]
jeane You can try immodium or lomotil before bed and also adding fiber like Metamucil . Your pouchitis may not be fully under control if still having nighttime issues [ more ]
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J-Pouch ForumsHelp! Need advice now!
Anyone develop thyroid issues after jpouch?
J jeane
TE Marie I had hypothyroidism before the surgeries but afterwards it went crazy. My dosage could not hold steady and I was getting a different strength every 3 or 4 months. I also had hair loss but part of that was due to going under for the surgeries. My GI was adamant that it be under control as the swings I was having were not good for my j-pouch function. A lot of it had to do with weight loss too. So there are many factors and I think going to a new doctor for a second opinion might be the way... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Tags
J moonsJ moons
Winterberry Hello, J Moons. After my reversal I had frequency and output that burned. I developed screaming fissures and a skin tag, also called a sentinel tag or sentinel piles. They come with fissures and frequency. They form at the opening and you can see and feel them. I googled "anal skin tag" and found information on these sentinel tags. One article referred to the tags or piles as "guarding" (sentinel) the injury that is caused by the fissures and burning. I thought that was funny. I used a sitz... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouchogram :(
K KC23
Lin I was so excited to get rid of my ostomy I would have done just about anything before the take down (kidding). If you have an ostomy then you would not have been using your rectum/anus for a while and nothing should be tender. I had no issues with the pouchogram--a very narrow tube is inserted , but not very far at all. No pain and no sedation needed. They need you to be awake to use your muscles to hold the tube in. You do not want to have the take down and have a leaky pouch. Think about... [ more ]
JordySimo I had to go through 3 pouchogram's before my takedown. Because things are tender down there, you'll maybe feel a slight discomfort when the thin tube is inserted (there will be a lubricant used to make it easier), but once it's in, you'll be fine. The tube is quite thin it won't cause you any harm. You'll be asked to roll into different positions which can sometimes cause a little tug but trust me, coming from someone who has been through 3 of these, it is nothing to be worried about... [ more ]
CTB23 My pouchogram was not difficult at all. No pain that I can remember, they just inserted a thin tubing with fluids, very controlled. It lasted about 10 mins. No discomfort. I remember my surgeon saying it would be more embarrassing than uncomfortable, but considering all the other "stuff", I had been through, it was a breeze. The radiologist and his team were great as well, and told me to let them know if it was uncomfortable in any way. Just my experience. I remember the prep being just... [ more ]
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Bill Johnson founded the J-Pouch Group in 1997.

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

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