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J-Pouch ForumsGeneral Discussion
new meds....if these dont work...its back to an ostomy!??
dgtracydgtracy
dgtracy No nsaids. Not for a few months now. My surgeon has been great at getting me to be seen and she's pretty compassionate when it comes to trying to get me on the right track she has called in another gi surgeon at the clinic when she did my last scope for her own second opinion so I feel like she is reaching out for answers as well. [ more ]
Jan Dollar Not really. It is basically a return of the UC in the retained cuff. No offense intended to your surgeon, but I would opt for a second opinion before considering another surgery with her. The current plan may be correct, but I would want more reassurances, since the first repair did not seem complete. I know "stuff happens," but this seemed like a missed opportunity. It is not as if she was unable to remove more cuff, because she planned to take the minimalist approach. Jan P.S. I did forget... [ more ]
dgtracy Jan, I dont know why she didnt remove more cuff during that first surgery. kinda wish she did. I'm just unsure of the way its all turning out. really want to be in a better spot and get back to life. is their anything natural that i can do to help with inflammation in cuff area? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Obstruction?
CC colonless commodore
Txgal58 Sorry to hear you're having trouble. Are you passing gas? If you aren't passing anything sounds like a total obstruction and you'll be feeling very bad, probably vomiting, soon. Partial obstruction is similar but for me, I was usually able to pass a little gas or stool. I've have several obstructions and they are not comfortable. You know your body and when something doesn't feel right. I hope everything turns out well. [ more ]
Scott F It sounds like an obstruction to me. Hopefully it's already passed. If it persists or gets severe you'll need a hospital, but it may just calm down. Do a search here and you'll find all kinds of coping advice. [ more ]
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J-Pouch ForumsHelp! Need advice now!
haemorrhoids I THINK, need advice
E EoinMaxwell
Scott F First, remember that you don't know if you have cuffitis. There's no benefit in gravitating to the worst/best/first idea somebody spouts. It's easy for a knowledgable doc to identify. The ones who don't know pouches will never have heard of it. Cuffitis can vary from trivial to extremely troublesome, from occasional to constant. It's basically UC in the little bit of rectum left behind (the "rectal cuff") during the usual surgical technique. [ more ]
Rebe0505 think you need to get yourself to doctor see whats going on..no point in just guessing [ more ]
EoinMaxwell Ahh dammit. Is cuffitis common? Ie nothing serious? [ more ]
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J-Pouch ForumsGeneral Discussion
pouchitis
G GraceB
GraceB I do want to ask another question. I see that some of you are on the remecade even after j-pouch surgery. Is it helping any of you? [ more ]
GraceB I did change my diet I am slowly adding gluten free products to my diet and I stay away from sugar and try not to eat to many carbs. I do add honey to my toast,tea and any thing I want to add a little sweet too. I am trying very hard to try and figure out what agrees with me. I know we all try very hard trying to find good nutrition for our condition. You are all very helpful in giving tips on what to do on all symptoms that we may have. Thanks Grace [ more ]
Rebe0505 chronic pouchitis..no easy answer it seems but for years and i mean years) i was simply rotating full dosages of antibiotics because staying on same always resulted in resistance.. also flagel hardly the only good antibiotic for pouchitis just one of them..maybe its time to change..and yes drs.think in terms of doing the least harm to get results but if you have pouchitis and you need antibiotics than thats what one does..for me it never worked just being on a low dosage of same one... [ more ]
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J-Pouch ForumsGeneral Discussion
Augmentum question
AllyKatAllyKat
AllyKat I have the 875 but it's making me sick so I switched down to 500. This is a hard drug. My surgeon only gave me enough for 5 days but my GI wrote me for 30. Having a hard time on this one. [ more ]
Rebe0505 hi scott maybe you need to give bump up a little more time and perhaps dropped it to half too soon.... shen says take two weeks not less ..and f.y i. my bottle of augmentine was 875 mg to take one tab. 2 times a day.. [ more ]
Scott F Augmentin is a combination of two antibiotics: amoxicillin and clavulanate. "Basic" Augmentin tablets are available in three different strength combinations: 1) 250 mg amox/125 mg clav 2) 500 mg amox/125 mg clav 3) 875 mg amox/125 mg clav There are a couple of liquid formulations, too, as well as extra strength and extended release tablets. My GI put me on the basic tablets with 500 mg amoxicillin. I started at twice daily, got decent results after a few days, and after 10 days backed off to... [ more ]
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J-Pouch ForumsGeneral Discussion
Rectal prolapse surgery?
M Megals
Kelsie Yes, I held a mirror so I could see the anus and it was very obvious when she pushed I could see the tissue from the pouch start to come through the opening. Dr. Shen does see it during a scope by either having the patient push or he applies suction. If there is a prolapse the pouch will protrude into the anal canal. The first time he did a scope he dx her with prolapse but at that time it wasnt very severe. My daughters got so bad that she sometimes had to manually push it back in. That was... [ more ]
Scott F It sounds like they saw the pouch prolapse and emerge through the anus (inside out). [ more ]
Savannah Hi Kelsie, What were your daughters symptoms that you could see and the docs could see as they observed her? I understand she was having difficulty and pain trying to empty her pouch and this was not dx'd with scopes, etc. when she was lying down. Thanks. [ more ]
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J-Pouch ForumsPouchitis
Help with constant "D"
AllyKatAllyKat
Rebe0505 alleykat so so sorry to hear about your latest issue..non stop D SOUNDS LIKE WHAT JAN SAID NEED FOR C-DIFF TEST..please keep us updated as to find..also meanwhile if you read my thread on pedilik (babyhood section)that you can buy in grocery store..keep drinking when depleted for D..eat bland and low carbs.. [ more ]
Jan Dollar My first thought would be either norovirus or C. difficile. If it is norovirus, it should play itself out in a few days. C. diff, not so much. Xifaxan would not help either one. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
epidural or morphine injection...?
FM Former Member
Former Member Of Course, definately paracetamol as initially it was administer via IV drip, not sure in regard to ibuprofen. I have 20-30 staples in my abdomen and had no pain whats so ever, so surely I must be on something stronger as well as than paracetamol. [ more ]
Shainy Are you taking any pain meds strange? I was taking paracetamol and ibuprofen for the first few weeks after surgery [ more ]
Former Member Also, epidural the patient has no control, it administers whatever it does automatically via a pump. [ more ]
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J-Pouch ForumsPouchitis
update on visit to dr. shen..
R Rebe0505
AllyKat Thanks for the update. [ more ]
Rebe0505 thanks jan,well said. ... yes i think there is no doubt in my mind i have totally come to accept i have and will always have issues and not normal function ..and yes its the less manageable symptoms of course i am trying and hoping to get a handle on ..i think any of us who hold onto our pouches have come to terms with accepting this and we are a strong group of souls we are!!! hope burns eternal in us humans!!!! a little more and longer time of manageable symptoms between the not so... [ more ]
Jan Dollar Rebecca, I think you pretty much said it all. There is no one best plan. There is no perfect roadmap to get us to great function. If we did not have a messed up GI tract, we would not have to have a colectomy in the first place. Once we understand that the j-pouch is just an option to get us out of our previous pickle, not to restore us to when we had the carefree life without bowel disease, maybe we can relax a bit. Some may think of it as giving up or settling, but i like to think of it as... [ more ]
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J-Pouch ForumsPouchitis
Cipro and flagyl, yuck!
SavannahSavannah
AllyKat Flagyl, oh g-d, no. The last time I was on it my system shut down and I ended in the hospital for a week. I have no problems with cipro, just never did anything. [ more ]
Rocket Savannah, I ditto CJB and techwrench. I have been on both Cipro and Flaygl and its the Flaygl that is so disgusting. I too have this horrible metallic taste in my mouth and all food taste like crap. Perhaps I should switch to dog food the next time I am on flagyl. That would be an improvement over flaygl. Rocket [ more ]
Savannah Thank you techwrench and CJB. I have taken my last dose of flagyl and hope to feel better soon on the cipro alone. Thanks also for the warning on the sun. My kids and grandkids are coming for a visit tomorrow and I don't want to be lying on the couch feeling nauseated. At this point I can't even tell if the c-f cocktail has had a healing effect on my inflammation as the flagyl side effects have taken center stage in the misery domain. Blah!! [ more ]
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J-Pouch ForumsGeneral Discussion
What kind of doctor for yearly?
T Teddybearlady
Dort I go to my GI. Perhaps the Crohn's and Colitis Foundation(http://ccfa.org/) can help you locate a GI that understands j-pouches. [ more ]
mgmt10 I go to my surgeon only because he told me to keep coming to him for scopes. If and when he gives me the boot then I'll go to my GI who happens to be familiar with j pouches. [ more ]
TE Marie Ask your GI to help you find a GI that is familiar with j-pouches. Can you contact the University hospital in Alabama and ask for referrals? I'm not familiar with your state but would think any larger metropolitan area would have GI's familiar with j-pouches, like Birmingham or Huntsville? My daughter lives in AL and she is an hour plus away from Atlanta, GA too. It all depends on what your insurance covers. Maybe your insurance company could help you locate a GI close to you that does pouch... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Squatty potty opinion needed
W Wife
Former Member ❤️
Bebekspor I will second that the coco bidet is amazing! Mine has the enema function but I've never used it, I'm scarred from using mesalamine enemas so much from when I was sick with UC, ha ha. I would absolutely recommend the coco! Katie [ more ]
Jan Dollar Yes, the Coco and Toto have models with an enema function. And, these are toilet seats, not the whole toilet, so if your porcelain is fairly new, this would be an upgrade. A number of people here have gotten them and wonder how they ever lived without them! I am jealous, as I don't have one but I guess I am fine without it. By the way, I was just looking at Squatty Potty, and it looks like it is just a stool, not a whole toilet. It is pretty cheap, so if you wanted to try it first, at least... [ more ]
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J-Pouch ForumsGeneral Discussion
for jan
R Rebe0505
Jan Dollar Pulse treatment is where you have periods on and off the drug. Every other day prednisone is an example. With long term antibiotics, it is usually a one or two week cycle on and off. This prevents constant exposure and tolerance. You could even do one week on and three weeks off. Whatever keeps you in a stable state. It does not work for everyone, but is a good option and worth exploring. It can help develop some predictability. Even a few days of drug holiday can be worth it, if it works... [ more ]
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J-Pouch ForumsGeneral Discussion
Dr. Bo Shen
tammykathleentammykathleen
TE Marie I hope it all works Pouchomarx and you are hooked back up soon [ more ]
Pouchomarx i have had 4-5 needle/knife procedures with Shen to open up my sinus. During a recent consult with him and my surgeon to discuss a new area of concern, the tip of j leak, they did an in office scope and the sinus is opened up to the point of where Shen is happy with it and no more procedures. End of August im going in for a new procedure he will be trying with one of his colleagues to close the leak with whats called, Apollo endo stitch. Never used for this type of leak, if can close it i... [ more ]
aka KNKLHEAD I enjoyed Dr. Shen very much. It's my opinion that he can sometimes be a bit over-optimistic on what he can do with his sinusotomy procedure. He was ultimately confident he'd fix my "leak." I sure felt great after that visit! Then the first procedure, he said there you go. All done, fixed up. See you in six months. But that wasn't the case. Then another procedure that should fix it up then we may need to do it multiple times. Then my local surgeon recommended a scope with Dr. Remzi and Dr. [ more ]
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J-Pouch ForumsGeneral Discussion
chronic muscle tightness
S scallop
Jan Dollar Robaxin is pretty tame stuff. So is Flexeril. Nothing like Valium and the dependency it causes. But, they are tame enough that they don 't make a huge difference. Norco is hydrocodone, so there is the chronic opiate issue (slippery slope and all that). I am very conscious of it, so according to my rheumatologist, I tend to under treat my pain. Been on it for years without increasing my dose. Jan [ more ]
scallop Hi Jan-- Nobody has recommended Mg infusions but I will ask. What are the downsides to the robaxin and Norco? (I have another muscle relaxer and have only tried it once. I'll give it another try). Thanks so much, Debbie [ more ]
Jan Dollar I have chronically tight muscles as part of my inflammatory arthritis. I take robaxin muscle relaxer at night and Norco during the day. Not ideal, but helps. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Fresh water supplies on the ward......
FM Former Member
Former Member Currently in the UK, we're experiencing a very hot summer we seldom get and not just me but everyone within the wards, including the staff are all complaining to the longevity of the water once replenished, so I wonder whether a more suitable system had been implimented within hospitals located in much hotter countries, such as the US. When watching US Tv shows, water coolers are often depicted within offices or the high school enviroment, it'd certainly not a reality in the UK and it is... [ more ]
Jaypea Get up. Get out of bed and walk to the water and ice dispenser! I know this is impossible for the first 2 days post-op but other than that you need to be up and around as much as you can. Getting fresh water could be great incentive. [ more ]
Former Member Yeah, St Marks milk shake type drinks been prescribed initially but didnt like taste of any of them, they too were severed at room temperature. The last hospital I was in many yrs ago, fresh water replenishing regularly but same issue occurred, although, I was in private room which had a refrigerator. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Chronic Dehydration issues-EnteraGam?
Txgal58Txgal58
Shainy My hospital gave me a home made solution to drink when I'm dehydrated. It works very well http://www.gloshospitals.nhs.u...eaflets/GHPI0247.pdf [ more ]
Rebe0505 dr. shen recommends pedialyte.(gotten at any grocery store..oral electrolyte..or gaterade..one loses lots of salt when having D.he said need to replenish it..the pedilyte is perhaps better as its used for children with diarrhea and has far less sugar..i aced him about the sugar taking in since i try to reduce intake with s.c.d. like diet..he aid not problem as this sugar does not remain in system to cause issues.. [ more ]
Jan Dollar It looks like this is a beef protein isolate used to treat diarrhea predominant IBS. It is a medical food product (not a drug). The idea is to reduce the diarrhea and that will improve nutritional status. I haven't heard of anyone here using it. Please let us know if it works for you! Here is a link to the product page. http://www.enteragam.com Jan [ more ]
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J-Pouch ForumsGeneral Discussion
need advice asap
A Archer
Archer Seems like we have some things in common. I'll try to add fruits in my diet. Been keeping it pretty bland the past few months. Mainly carbs carbs and more carbs. No fruits or vegetables. I have a very sensative stomach. Things come out the way they came in. Yogurt, pudding, don't agree. Just found that out. I guess too thick? Hopefully I can get this food thing down before I go to college in 2 months. I want to start working out once I am there. To bulk up a lot! I want to put on 15lbs of... [ more ]
GraceB I must have hit the wrong button I wasn't finished telling you my story. I did one vegetable at a time to see how I would tolerate it. The next week a would add another. I find putting organic carrots, baby spinach and green apple, banana, coconut water sometimes almond milk in the drink. I also have problems with constipation. I have been dilated 4 times and going in for another I hope this is the last. I also have problem gaining weight because I always feel bloated after eating anything. [ more ]
GraceB I have my j-pouch for 4 years. I am also having problems with food. It has taken me a long time to figure out what foods to eat . I am still having problems. It is true that the doctors do not give you enough info on what to expect. I struggle with vegies also. I started putting vegetables in my lactose free protein drink about a year ago I stay away from any gassy vegetable. I [ more ]
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J-Pouch ForumsGeneral Discussion
too good to be true?
A Amstobar
Bebekspor Wow, that's great! I hope it stays that way for you! Katie [ more ]
Amstobar That's good to hear. I've read that before, but it's nice to read results from people that are more than studies I'm happy that I'm getting very good results from such low doses, since it gives me a place to go if things get worse. I appreciate the feedback! [ more ]
Jan Dollar Studies indicate that there is no tolerance issues with Immodium. I've gradually reduced my dose over the years, and that has been since 1995. So I guess that is proof there is no tolerance. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
How Do You Know When You Need to be Dialated.
MysticobraMysticobra
Mysticobra Sorry to hear you did not get anything resolved. I hope it is not too serious. I think I may have to go in several times to get mine dialated. I don't mind...I don't find it serious...a bit uncomfortable but bearable and rather a minor thing to deal with. Keep us updated on your situation. [ more ]
dgtracy I didn't get great news from mine. I'll probably be making a post tomorrow when I wrap my head around it but she seemed convinced I didn't have a stricture, she didn't check but I did have a scope done 1 week ago so I guess she is going by that. She had me go on bentyl and resume canasa suppositories. I'm praying this takes care of my issues. [ more ]
mgmt10 Glad you got an answer Mysticobra. The last time I went to my surgeon for dilation he mentioned to me if the scar tissue continues forming that I could do it myself and he would show me how with the proper tool. I was like um, no! I just didn't want to do it myself....scared I guess. Luckily after that last time I never had a problem with it again and it's been good since. [ more ]
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J-Pouch ForumsPouchitis
???Prefect Blookwork???
AllyKatAllyKat
Rebe0505 yeh aleykat my blood work after exam like you and ct barrister..however the ups and downs with pouch now continue..check out my update after shen.. [ more ]
boy's mom A cal protectin test might be helpful to know if that shows inflammation. Besides the night leakage are you feeling ill? [ more ]
CTBarrister My blood work is also perfect. Having chronic pouchitis does not mean that your blood work or even your cardiovascular picture will be impacted. Other than my pouchitis I have no health issues. My blood labs, PSA, cholestorol, blood sugars etc. are all excellent according to my Doc, my EKG was excellent, I look 10 years less than chronological age according to my Doc, and when I did the stress test last year the cardiologist told me I had less than 1% chance of developing cardiovascular... [ more ]
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J-Pouch ForumsGeneral Discussion
Crisis diet vs. maintenance diet?
SavannahSavannah
TE Marie Savanna, You have been through hell and I feel so bad for you. I am 5'8" and would love to give you around 40 pounds! You need some more weight for sure and healthy is a good way. I still think the smoothie idea is a good way to get nutrients to your body, we digest them better. I mostly use frozen fruits and the basics I get are huge bags of blueberries, strawberries and mixed fruit. I've also gotten cherries but they didn't taste as well, plus were more expensive. I also cut up fresh... [ more ]
skn69 Savannah, Some people like to say, 'what doesn't kill you makes you stronger', others like to say, 'God does not give you more than you can handle'.... NONE of those people have had to deal with what we have. If they had gone through bowel resection, pouches, ostomies, abscesses, infections, fissurs,fistuals, wounds dehyssing and re-surgeries for failed this and that they would not be whistling the same tune...they would be crying and moaning in their jell-o! God (if you believe in him)... [ more ]
Jan Dollar Well put, Savannah! Some of us are lucky enough to be born with the temperament to "roll with the punches." I think I am one of those, but I also don't think my mettle has been fully tested. Time will tell I guess. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Stage 2 in A Couple of Weeks
ATXGuyATXGuy
Lesandiego I had multiple complications from the 1st surgery too and needed to gain back a lot of weight. I would think 6 months is average, but your doctor must think your healthy. I had open surgery for all three steps. Only had laparoscopic for a hernia that developed from the first surgery. Laparoscopic surgery is no walk in the park and it took almost 10 days for the pain to subside and about 6 weeks for the swelling to go down. [ more ]
ATXGuy Total colectomy was performed as an emergency open surgery in mid Feb. My bowel had perforated and I had systemic sepsis. The recovery was brutal, but there were post surgical complications due to an allergic reaction to an antibiotic that set me back. Stage 2 will be in Mid July, with take down 12 weeks later, provided everything goes well. My surgeon doesn't think he can do laproscopic surgery because of the scarring from the first surgery, so he's got to open me up again. [ more ]
Lesandiego How long since last surgery? I had emergency colonectomy too and stage 2 was 8 months later. All went as good as you can expect I guess (no complications, unlike the first) It takes some getting used to the "new" you. [ more ]
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J-Pouch ForumsGeneral Discussion
St Mark's electrolyte solution
S Shainy
Scott F If you've got severe diarrhea, replacing the electrolytes is a fine idea, and the sugar helps the water get absorbed, at least for folks with colons (and probably J-pouchers, too). Drinking water doesn't cause electrolyte loss, though - diarrhea does. The water simply isn't the problem, though it may be an inadequate solution when circumstances are severe. IMO if your diarrhea is routimely severe enough to require elecdtrolyte replacement then you should be looking very hard for a better answer. [ more ]
Allison Thank you for this. I suffer from dehydration because of diarrhea and I don't agree with Scott that it takes an awful lot of water to cause electrolyte problems. If you have chronic diarrhea, drinking water is the worst thing for you. Thankfully I have found pedialyte works for me and has saved me from going to the ER for dehydration after fainting in the past. I think those of us with diarrhea need to pay attention to our electrolytes and ensure that we eat enough salt and things needed to... [ more ]
Scott F This is certainly right for severe diarrhea, and is a near-miracle for dehydration in children, but it creates a bit of a problem for folks trying to limit their carbohydrates. It takes an awful lot of water consumption to cause electrolyte problems, so it may be best not to overdo it. [ more ]
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J-Pouch ForumsGeneral Discussion
Yale Changes Anesthesia Protocol On Scopes: Propofol in, Fentanyl Out
CTBarristerCTBarrister
CTBarrister Jan and Rachel, Thank you for your posts, they are very informative and they make a lot of sense to me. I can understand now why Yale likely made the decision to use propofol as their "standard scope anesthesia", but I am still going to reject it in favor of conscious sedation. I will go with either fentanyl or demerol and versed - neither combination was ever a problem in the past. I have never done a pouchoscopy without sedation, for reasons already discussed, and the grogginess... [ more ]
rachelraven I administer Propofol to ICU patients daily without an anesthesiologist, though the amounts I can give are lower than what anesthesia can give, and we don't "push" the med any longer, unless an MD (not necessarily an anesthesiologist) is present (we can give in a continuous titratable drip). But no way would you want what they push given in a conscious sedation scope! They'll push 200mg without blinking an eye during an intubation. Demerol has fallen far out of favor in the opiate world. It... [ more ]
Jan Dollar It certainly is possible that there are local laws governing how propofol is administered, but it probably was just hospital protocol. However, what you were told and understood to be true before, could now be obsolete. Medical standards and protocols are constantly changing. Here is a Gastroenterology position statement from 2009 that pretty much tells all you need to know. http://www.google.com/url?sa=t...vm=bv.69411363,d.cGU You really cannot compare propofol administered by doctors and... [ more ]
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J-Pouch ForumsGeneral Discussion
vasectomy causing autoimmune response?
pouchingtonpouchington
pouchington thanks for the explanation jan. youre right, the what ifs only cause more stress. gotta get that under control... [ more ]
Jan Dollar Sure. There are a great many triggers for UC. Infection seems to be a common one. But extreme stress has been noted to be a trigger to. I don't mean the "my mother-in-law really stresses me out" type of stress, but the type of stress associated with surgery and trauma that causes prolonged secretion of stress hormones. Extreme pain is one of those. You can play "what-if," but realistically, you were likely to encounter some triggering event somewhere along the line. Jan [ more ]
pouchington it really doesnt matter in the long run but it was definitely traumatic as it caused severe testicular pain that eventually lead to several surgeries and finally their removal. could that have caused an immune responds that otherwise wouldnt have happen? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Question on partial blockages
S Shainy
Txgal58 Shainy, I'm sorry to hear you're having this issue. I'm 17 years post take-down and have had a number of partial or complete bowel obstructions. My bowels have been tender for even a couple of weeks after the obstruction resolved itself. So far I've not needed any surgical intervention, thank goodness! My doctor always advises me to eat soft foods for a time after I leave the hospital. You didn't say if you'd been hospitalized but I always had to go because the pain was so bad. As Jan said... [ more ]
GinLyn It really depends, but as a short answer: yes, it can. You are having output? Keep on top of that; if that stops or majorly slows and/or if you show any signs of dehydration get in to be seen ASAP. And be careful with what you eat! Chew, chew, chew. Gin [ more ]
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J-Pouch ForumsGeneral Discussion
Need advice
ccanepa456ccanepa456
ccanepa456 Thank you everyone! Regarding the oatmeal, does it have to be a specific kind of oatmeal? [ more ]
dgtracy These are all solid replies so I just wanted to stop in and tell you it will get better. I had a lot of issues after my takedown as well, my mood was pretty dim but when I started seeing/feeling small improvements my mood lifted. It takes time but we get there. Touching base on oatmeal though, I have that every single morning, from all that I have read it seems to be a pretty easy on the pouch type of food for everyone. I don't really recall ever seeing someone who couldn't do it..always... [ more ]
Dog Search on butt burn and butt itch. The itching might be the fissures healing. I know when I had butt itch, I took a q-tip to scratch just inside my butt. I don't know if that is good advice or not, but I had to do something! Diet changes to make them more formed? Try oatmeal, bananas, or marshmallows. [ more ]
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J-Pouch ForumsGeneral Discussion
New J-Pouch
Kathy AKathy A
shawne h hi Had my pouch done in NS at the VG in 1986 now live in PEI. I have found I always have problems with gas ovoid most foods that will cause this like raw fruits and veg. NO pop and do nt use a straw. I found while on the toilet at the end of a BM lean to the right side an bear down it may help you release the gas. It is for sure a problem with most of us. Some are lucky to have no problems. Shawne [ more ]
Pluot Kathy, it's pretty safe to say that however you're doing this soon after surgery, things will almost definitely change with time. Definitely work on chewing and eating more slowly. It's good for everyone and will likely improve your gas situation. Make sure your mouth is closed while you're chewing and swallowing. Try to do smaller meals more frequently as well. [ more ]
Scott F It generally gets easier. Most of us can't safely fart off the toilet, so we have to hold in the gas. Preventing it, when we can, works best of all. [ more ]
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J-Pouch ForumsGeneral Discussion
Changes in bowel movements
BebeksporBebekspor
Bebekspor I would be sooooo happy. I went only 4 times today, not much output but no urgency or accidents. Keeping my fingers crossed! Katie [ more ]
Scott F Cipro doesn't fix sphincters. It does, however, fix pouchitis pretty quick. It sounds like pouchitis to me. Ideally the scope would have been done before the Cipro, since things may already look just fine, but might have looked clearly diagnostic a couple of days ago. Yes, that's how it's supposed to be. Hopefully a single course of Cipro will fix you right up and hold you for a long time. [ more ]
Bebekspor Yes, I've been doing kegels, not as much as I should but I have been working the muscles. I only had my ileostomy for a couple months, I hope the muscles didn't weaken that much! Thanks, Katie [ more ]
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J-Pouch ForumsGeneral Discussion
Upcoming 3 step J-Pouch Surgery on July 7 and freaking out a lot!
K KRF2523
Lambiepie I had a three step, too, exactly the way you explained it in your post. It makes a lot of sense, especially after being sick with UC and on many meds. There is immediate relief after the first procedure, once your diseased colon is out. Surgery number two is the most difficult with a longer healing time. Takedown is the easiest procedure. Like Jan said, it can take some effort to keep a pouch functioning well, possibly with meds and all. Having said that, you won't feel sick, as you most... [ more ]
Lew KRF2325 I had a 3 step procedure but I left 1 year between each step. It was my decision as I wanted to be sure I was well healed after each step. My surgeon generally left 3 months between steps but was very supportive of my decision. I had been suffering for 9 years with colitis and nothing was working at the last. My GI was afraid I wasn't going to make it to surgery as I insisted on waiting for a particular surgeon. I almost didn't make it as I got bacterial pneumonia 2 weeks before my... [ more ]
KRF2523 I don't know if it's new but it's not commonly done. My surgeon only does the three step because he feels like there are less complications with it. With patients being unable to be fully healthy for surgery he likes to give the body time to heal. Thank you for your response! It was a little funny when I counted the years because even I said Really it's been that long? haha I know before the surgery I'm going to back out about 30 more times. But at the end of the day I can't deny the pros to... [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Salad days?
HockadooHockadoo
Lesandiego Dog, we have Souplantation (same company as Sweet Tomatoes). Love the place. I have been going here since the early 80's, but it gave me gas when I had a colon too. Sometimes, I swear they add MSG. My friend calls it Souplantation farts syndrome. It affects everybody the same way. I do crave their tuna tarragon and that is why I keep going. Must always remember to put on a clothing that has an expandable waist line when you eat here. [ more ]
Pluot Take it slow but do give it a try. I have mild cuffitis on and off and if it's "on" when I eat salad it can be really uncomfortable for the ~36 hours or so it takes me to get rid of all the plant fiber (yes, it really does stick around for that long!). Start with a small portion, chew well, and pair it with something binding like crackers, a roll, pretzels, etc. [ more ]
mgmt10 I was eating salads right after takedown. The only way you'll know is to give it a try. Have a small salad and see how it goes. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Take down in a couple weeks could use some sucsess stories
B Bryan2323
Dog Takedown should be a breeze. The only complication I had. . .which is actually pretty normal. . .the ostomy site had to heal from the inside out due to an infection. I think you've made it through the hardest parts. . .this is like having a splinter removed compared to the other surgeries. Good luck! [ more ]
hfc After takedown, I started to absorb nutrients/water/salt. I gained 40 lbs, pulse came down from 120 to 60. Happy days! I am now 10 years post surgeries, 55 years old, finished in the top third of ultramarathoners in Comrades run from Pietermaritzberg to Durban, South Africa (56 miles)! [ more ]
Bryan2323 Thanks all im just a little nervous my second surgery was very hard for the doc it was tough for him to stretch my small bowel to the pouch said the surgery took him 7 hours [ more ]
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J-Pouch ForumsGeneral Discussion
finally: surgery date; now getting nervous
GinLynGinLyn
Mahshelley I'm with you Gin. I'm having my pouch advanced in the next month and I'm nervous too. I've been dealing with a really awful recto-vaginal fistula that has been inflamed to no end. But it's normal to be nervous about these big surgeries. My doctor has gone as far as suggesting an epidural for pain managment for the first few days after the surgery. I dont know how good of an idea it is, but there are plenty of options for pain management. We're all pulling for you! Keep us updated on how it goes. [ more ]
skn69 Good luck Gin, I really hope that this is the end of the line and that you can finally get off of this roller coaster. I hope that you have a wonderful, attentive staff around you and that you breeze through this one. Hugs Sharon [ more ]
BillV Gin, I wish you the best in your upcoming surgery and the long term results. Don't be afraid to ask your nurses for adequate pain medication (I had the pain med pump hooked up to my IV, and I must have pushed the button at least 100 times during my hospitalization). I was given Vicadin to take home, but did not need it. Relax, think pleasant thoughts, and soon this will just be a memory. Bill [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Pouch advancement?
MahshelleyMahshelley
Mahshelley Yeah, It looks like I'm getting a temp iliostomy for a few weeks as they advance my pouch. My "rectal stump" is all inflamed and sad, so my doc thinks it's best to just get rid of as much of my rectal tissue as possible. I'm a tad scared because the first time around, I had a leak at my connection site that resulted in Peritonitis. That infection nearly killed me. So i'm hoping this surgery goes a little better. Do you guys have okay continence with the pouch advancement? i'm worried that... [ more ]
Kathrine I had a pouch advancement on May 19th due to a pouch-vaginal fistula. I had a temp ileo created 3 months before the surgery - I haven't had the reversal done yet. I spend four days in hospital. Now I'm feeling great and almost ready to go to work again. I don't have a full-time job and I'm not sure I would be able to work full-time yet if I had. [ more ]
dgtracy Mike, mine was done without creating a temp ileo. I had an NG tube in for a couple of day. [ more ]
See all 6 replies...
J-Pouch ForumsOstomy & Skin
Bag question
PouchomarxPouchomarx
aka KNKLHEAD I give Coloplast a lot of credit for engineering the Mio. It certainly is a very valiant shot and they obviously worked hard on the new design! I was very optimistic and gave them a very good test for several weeks. The filter worked great for one night .. but not for two. I also had premature leaking on the two piece and the one piece leaked underneath prematurely, as well. I am really running through the products and paces -- Hollister, Convatec and Coloplast. So far, the Convatec has the... [ more ]
chiromancer Regarding the new Mio system there have been a number of reports on the HealingWell ostomy site of failures. It was originally released for people with colostomy and may not work well for a ileo. They have sent me a card to request samples but seems like they need to work on the design. I use a Coloplast slightly convex Sensura one piece with Eakins seal and Brava strips and it works quite well. 1" was too small and 1 1/8" which I use is too big but the Eakins seal fills the gap. [ more ]
Pouchomarx well i tried the new Coloplast Mio bag, i cut to 1 inch and also used a seal. less than 8 hours go by and stoma starts hurting and burning. I take the bag off and sprung a leak. I will stick with my 7/8 Hollisters i guess [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
absence of large intestine
H hd0112
Jan Dollar More than likely. Imperforate anus is not too uncommon. Jan [ more ]
skn69 Jan, I have a thought. I was born without a rectum. The whole decending colon was 'missing'. But not really. Because it was not anchored down to the sphincter at birth it 'rose up into the abdomen'. But the sphincter was truely there. On all of my medical records they wrote 'imperforated anus'. But it was there along with a sphincter. At 2 the operated and 'reattached' the decending colon & rectum to the sphincter. If it would have healed properly I would have been fine. (whole other... [ more ]
Jan Dollar Well, he must have had sphincters, otherwise it would not work. If he has been living with a straight ileoanal connection without a j-pouch, and having difficulty, then a j-pouch would help him. But, considering his prior surgical history, he may have too much scar tissue. Still, worth exploring his possibilities with a qualified surgeon. Jan [ more ]
See all 13 replies...
J-Pouch ForumsHelp! Need advice now!
Pain with what i think is constipation :(
Z Zee87
Jan Dollar Sure, this is fairly common. Your Imodium use is pretty small, but everyone's tolerance is individual. There is a carry over from day to day, so over a few days it builds up to a constant level. I would suspect that you are just more sensitive to it than many of us. The other thought is that there just is a temporary partial obstruction due to adhesions (internal scars) that we all have. Either way, treatment is the same. Stop all bowel slowers, increase fluids, and back off on eating... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
how do u explain this reddish stool....
dgtracydgtracy
Jan Dollar To rule out or confirm something as the culprit, just eliminate it for a couple of days and see if it makes a difference. Dyes in one thing you consume can absorb into other foods. That is how it can take variable times to transit. Jan [ more ]
rachelraven My transit is 12-24 hours. It could be the morning drink responsible for it. Also, anything strongly "fake" colored really affects stool color. I about died years ago after eating Fruity Pebbles: my stool was neon green. [ more ]
mgmt10 Some things definitely take up to 24 hours to exit my body. I never would have thought it can take that long in the absence of a colon but it can. [ more ]
See all 6 replies...

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William J. Johnson
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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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