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J-Pouch ForumsGeneral Discussion
GOMAD diet & Digestion.
SnipeySnipey
aka KNKLHEAD GOMAD (Gallon of Milk a Day) seems like a new advertisement for dairy farmers! While I have dairy farmer cousins, we don't drink much milk in my house. My son, who is now 8, (healthy, strong and thin) will choose water (even in a restaurant) over milk. But yes a chocolate milk is a treat! I agree with Scott that sometimes an over simplified "just do this" as a secret weapon of any kind could do more harm than good. Slow and steady. At 18 I had colitis, and I weighed close to your weight! [ more ]
Scott F Snipey, it doesn't sound like you're "flushing out" any calories. Nothing in what you have written suggests any sort of absorption issues. You were maintaining weight on a diet well within the maintenance range. I don't think forcing calories will bulk you up, but patience and persistence at the gym might well do the trick, and your increased capacity is evidence of progress. As your muscle mass slowly increases, your appetite is likely to adjust appropriately. Your diet will matter, of... [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch Removal
MysticobraMysticobra
JLH hi i too want to voice my support for your decision and think that jan wrote an excellent and emphathetic explanation, to which i cannot add. when i first made suggestions i had no idea of your situation. all of our conditions must be taken in context of how we live and our economic circumstances. this is an unfortunate reality of the american medical-industrial complex. if there is any way i can help, please contact me. one thing, about which i previously replied, is the stomach aches,... [ more ]
JLH Originally Posted by Mysticobra: Thank you Scott. Thank you all. And for everyone's support and advice. Now... I have two months to put on some weight. Need to put on a few pounds cause I know surgery will take it away. [ more ]
Jan Dollar Botox is for treating fissures. I have not heard of it for anal stricture. Dilations can be manual (with a finger), or be balloon. Another option if dilation does not work is injection with cortisone and or antibiotics. There is also stricturoplasty or pouch advancement surgeries. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
4 hour lapro at Mayo
TE MarieTE Marie
TE Marie I was diverted to a permanent ileostomy and she also spent 3 hours lysing all of the adhesions in my abdomen. She did it all laproscopically so I'm hoping they don't come back I still have my j-pouch and don't plan on a future take down. Hopefully it won't cause me any more problems. If it does then it will be excised. I tried my best for close to 5 years and it just was just not cooperating and failing in too many areas to keep using it. [ more ]
Pouchomarx what surgery did you have done? [ more ]
TE Marie I ended up with a bad UTI and pneumonia so ended up staying in the hospital for 6 nights. I'm still fighting off the UTI and trying to get a wafer to last longer than a day. Some pretty ugly skin underneath it. I'm seeing a stoma NP at a wound care clinic, twice a week but am backing off to one day as I think I'm right around the corner of proper appliance attachment. She wants me to do change it at least every other day or daily. Good instruction and she's local so she is writing my... [ more ]
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J-Pouch ForumsGeneral Discussion
Diet for upcoming pouch revision ?
PouchomarxPouchomarx
Ikh I agree with Jan; just don't eat SO many confort foods to end in an ER before the 3 weeks... [ more ]
CTBarrister I would just be leery of foods that cause you gas, or spicy foods. Since you do not have weight issues at the moment- 5'8" and 155 pounds sounds reasonably fit to me- Jan's suggestion of comfort foods is a good one. Good luck with the revision Poucho. I had two of them, although to address mechanical functionality issues, in 1998 and 2000, and haven't had mechanical problems since, although I continue to have chronic inflammation which will be treated with Remicade starting in a few weeks. [ more ]
Pouchomarx lol...thanks Jan. I would drink a few times a month, nothing too crazy. But I am not drinking alcohol for awhile due to upcoming surgery. Its been a few weeks already and surgery in 3 weeks [ more ]
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J-Pouch ForumsGeneral Discussion
VSL3
M MaryL
jeffp It does well in milk. My favorite is in a milkshake with chocolate ice cream and milk . It also seems to mix well into chocolate pudding and somewhat into applesauce. Lots of milk products I know--won't work if he's not tolerant of milk! This product is actually working for me after years of pouchitis! [ more ]
MaryL thank you [ more ]
roseviolet It mixes easily with kefir, yogurt, applesauce or other similar food. It doesn't mix as easily with water or thin juices. Rose [ more ]
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J-Pouch ForumsGeneral Discussion
question on cuffitis
PouchomarxPouchomarx
Pouchomarx I have wasted so much money and time off of work trying to fix this pouch with nothing to show. I have the chance to correct my issues with having one of the best hospitals for doing these and probably have one of the best surgeons in the world for fixing jpouches doing this, Dr Remzi. He has a great track record and i trust him. Yes there is a chance that something might go wrong or not work, but I need to try. I hate this ileostomy with a passion so I will give this a shot. If this surgery... [ more ]
SolomonSeal I had frank bleeding from the rectal cuff that stopped after takedown. That said, my cuff was bleeding during my last scope (probably from the scope itself). I would say if you have the same rectal cuff, there is no reason to think that it would be better. If anything, since diversion caused me cuffitis, I don't think that it would be a good thing. My surgeons said that often they blast the rectal stump (pre step 2) or rectal cuff (pre ileo closure) with steroids and mesalamine so that you... [ more ]
Jan Dollar To be honest, I haven't a clue. It all depends on your specific situation. I know you are playing out all possible scenarios in your mind, trying to figure your odds of a successful outcome. Try not to make yourself crazy with this. Best to assume all will go well. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Concerns after J Pouch construction
NS Nora S.
Mysticobra "None of us have anything to compare to in order to know what is "normal" and what isn't. You can make yourself crazy with it. " Jan. That is the truest statment on the board! Richard. [ more ]
Jan Dollar I agree. I had a small leak that did heal. So small that it was not known until I developed a huge presacral abscess and a fever of 105. In some ways I consider myself lucky because this prompted definitive treatment a month post op (not just antibiotics). Others here wound up with simmering symptoms for years until it was truly dealt with. My point? I am not really sure, but if you keep having the nagging feeling that something is wrong, keep bugging your doctor. It is hard to find that... [ more ]
aka KNKLHEAD Your second sentence shouldn't be overlooked, " due to a small pouch leak." Frankly I think too many surgeons look upon a "small leak" as if it's normal and sort of hope it heals itself. I welcome comments from those on the board with a history of "small leaks" healing themselves. I am very dubious. Even a small leak is not good. That's my opinion after having two sets of surgeries (with leaks) and finally a pouch redo that seems to be working pretty well, finally. I know it's weird, but I... [ more ]
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J-Pouch ForumsGeneral Discussion
regarding "emergency surgery" post on "Help Need Advice" Forum
LK Laurie K
Jan Dollar Tough call. If you think that endoscopy is risk free and preferable to imaging, then you need to step back and rethink it. It is invasive and there is always a risk of perforation, so no doctor is willing to go there unless it is medically warranted. This is especially true when you are potentially not fully healed, and you have the history of bowel gangrene that you had. Contrast may be uncomfortable, but it is a lesser evil. Still, imaging has risks too. Just remember that your surgeon has... [ more ]
Ikh I am sure you will resolve anything with the help of the surgeon. Maybe you just need to heal and in the meanwhile eat a very light liquid diet? [ more ]
Laurie K Thanks guys. Yes, my surgery was only about 3 weeks ago. I've been home about 12 days or so. I am on pain killers, but have definitely been decreasing usage, while issues have gotten worse. Trying to get off, but I just got to the point where I lost the wound vac...so my incision isn't exactly healed. I have to draw my knees up to chest to get anything to come out at all. NEVER was the case before. I am scared to death this is a change in environment that is NOT working. I know it's early... [ more ]
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J-Pouch ForumsGeneral Discussion
considering getting a J-Pouch
J Jim1980
CeeeeCeeee Just a suggestion.......in choosing a surgeon, ask how many J-pouch surgeries they have done successfully. The more the better. I'd certainly interview at least two surgeons. Best wishes! [ more ]
lablover My husband had his entire colon removed after not being able to go into remission with steroids. The steroids were making him sicker than the colitis. Anyway, that was close to 21 years ago. His J-pouch has treated him pretty well. I am amazed that you were hooked up directly. Fascinating!! [ more ]
SolomonSeal You already have a "primitive" ileal pouch so to speak. The ileum near your anus must have stretched out and become some kind of a reservoir. A jpouch would be a bigger, better reservoir. That said, that would be the only improvement. There are no guarantees about stool frequency/urgency/continence for this procedure. It may sound frightening, but you should consider an ileostomy bag. You haven't had one previously I understand, so it probably sounds frightening. For me, it was a stable... [ more ]
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J-Pouch ForumsGeneral Discussion
Fasting with a pouch?
D DanielR
SolomonSeal Shana tova. Personally, I felt that towards the end I needed liquids. So I had a few small glasses of juice towards the end. It was a good call and perfectly fine religiously. [ more ]
aka KNKLHEAD Thanks for the follow-up. I often think of fasting as a way that might help if I had issues in the future. But I do love my food .. and coffee? I think every doctor/surgeon needs to understand and prepare for coffee withdrawals. It was literally the worst thing I had to deal with after my pouch redo surgery! (I get a headache so bad that I vomit -- not good with the new innards!) Appreciate the info, hope you had a great holiday. [ more ]
DanielR That's great Joe. Glad it went well I drank small measures. Made it through ok. Not as good as usual, but that might have as much to do with the 25lbs I've shed over the past year with all the treatments and surgeries! Biggest issue has been the aftermath. Had a rough night and today's not great. Think that not eating means the pouch fills with air and just seems to enjoy pushing out whatever goes in it. Will see where I am next time around (am only 5 months out from my takedown), but may... [ more ]
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J-Pouch ForumsGeneral Discussion
Living life??
S Sonja6
Sonja6 Thanks for everyone's support. I've had a clean diet for around 4 years now. No dairy no gluten low sugars high protein low greens low fruits ( except for juicing ) probiotics antibiotics yoga medication shamanic journey work acupuncture crystal healing vitamins ect. I have a new GI now since my regular just retired. We're doing a scope next week because of the amount of bacterial overgrowth my pouch has going on right now. Plus they found something in my uterus. But they won't tell me what... [ more ]
CTBarrister Sonja6, You need to bring the pouchitis symptoms under control through whatever means necessary, and if you can't, based on what you describe, you are headed towards SSD. It's going to have to be one or the other. The middle ground is essentially torturing yourself physically and emotionally which is not only unacceptable but also will do irreparable damage on your personal wellbeing long term. I think that is the big picture here. Whether through diet, probiotics, antibiotics, Remicade,... [ more ]
lablover My husband is a Systems Engineer, most of the time he works from home (which has helped alot). He now travels more than in the past (mostly NYC which is close to where we live) sometimes, he has to go to the West Coast. If he does that, he does not eat at all on the flight and no coffee. He brings his VSL with him. Good luck to you..sending healing cyber thoughts. [ more ]
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J-Pouch ForumsGeneral Discussion
New to the group
B BPayne
Mysticobra Thanks Scott for clarifying that. Rather important because it is a prescription. And that's a good way to put it. Tinker and keep track. Great advice. [ more ]
Scott F The best advice I can give about thickeners/bulking agents is to experiment to find out what works best for you, Try more than one, try different amounts, and try none as one of the amounts. Then remember that things will change, and you may have to tinker to get the best results. I wouldn't start with Questran (there's a reason it's prescription-only), though I'm glad it's available when nothing else works. I started with Metamucil as soon as I left the hospital, and psyllium (in one form... [ more ]
Mysticobra Hello and welcome. Lots of good people here and lots of advice. For thickening and butt burn I use questran. It's not perfect but as for a thickener it helps and my burn has virtually disappeared. And it was bad. I was pulling my hair out while having a bm. Flaming for days and it stopped with the first dose. Hope that would help you. It's almost 5 am and I am having urge problems so I just got up and ate some toast. For some reason it helps me. Probably would not help you. Everyone's quirks... [ more ]
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J-Pouch ForumsGeneral Discussion
Going back to an ileostomy....
TE MarieTE Marie
TE Marie Thanks for your advice Sharon. I started seeing stoma NP twice a week as my skin was disintegrating under the stoma wafer. After 2 weeks I feel much better but it is still painful/burning. I'm back to my super duper fruit/veggie plant based protein smoothies daily except I am only making one a day and slowly adding other foods back into my diet. Pasta really tastes good. I couldn't even stand to smell a good sauce before my surgery. The UTI I picked up in the hospital is back. That is... [ more ]
skn69 Wow Sweetie, You have been through the mill, over the hill, around the block and then some...I am so sorry...that was one rocky ride (then agian nothing ever goes according to plan with you so why should this be the exception???) So, if I understand, you are home now...how are you feeling? Are you getting any broth down? It is good for both those tummy aches and rehydration because it contains the right kind of sodium...heating pads (unless you have been warned against them) help a lot... [ more ]
Jmama ❤️
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J-Pouch ForumsGeneral Discussion
Wow...Dr Remzi called me
PouchomarxPouchomarx
pammieskrh I have seen several posts about Dr. Rezi and cleveland clinic. I had my j pouch done in 1986 and am starting to have some issues. It looks like he is highly recommended. I really appreciate this site. [ more ]
jeffp ❤️
aka KNKLHEAD Hey! Dr. Remzi never called me directly. But he is awesome and he did a great job. He also told me "my problems were mechanical." Six weeks, huh? That will fly by! [ more ]
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J-Pouch ForumsGeneral Discussion
Coffee??
N NanJ
clz81 I'm a big coffee drinker! But I'm usually done with caffeine by early afternoon for the day. The first half of the day, I don't use the bathroom much so it works ok for me. So, in general, I give coffee a big thumbs up! Now, the mom in me has another viewpoint :-) I would be cautious with too much caffeine with teenagers. While a small amount will probably help with mental focus especially first thing in the morning, too much caffeine may cause the sleeping issue to only get worse. If the... [ more ]
dgtracy Originally Posted by Jan Dollar: Count me in as a lifelong coffee drinker (since at least age 10). Of course, when I was diagnosed with UC at age 15, I went decaf, at least until I was in remission. Fast forward 25 years, and I had my j-pouch surgery. Again, I went decaf for a while post op. Now, 20 years post op and I mostly go half-caf, with full caffeine espresso sometimes. I see no difference in my function overall. Jan This. i dont usually notice a difference with pouch function. i... [ more ]
CTBarrister Originally Posted by JLH: consider lactose in milk/cream, in the event you add that to the coffee. i mention these as there are other factors that go into what upsets the tummy. jlh Because of the low iodine diet I am on currently in conjunction with my thyroid cancer treatment, I am not allowed milk/cream/dairy, but organic coconut milk is allowed, and I have been using that and the So Delicious Coconut Creamer, also allowed because it doesn't contain either carreegenan or sea salt (both of... [ more ]
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J-Pouch ForumsGeneral Discussion
where does everyone buy VSL#3 from ?
PouchomarxPouchomarx
jeffp I get mine at Costco, and my insurance covers it but it's still $63 (two packets per day). It's actually working though after years of pouchitis and antibiotics, so I'm willing to pay! [ more ]
Pouchomarx lucky you..lolOriginally Posted by NanJ: We got DS at our local pharmacy. Our co-pay was $10. I bought gelatin capsules on Amazon (they come in different sizes) and filled them with the VSL#3 DS, since my son didn't like the taste of the DS packets mixed into his food. [ more ]
NanJ We got DS at our local pharmacy. Our co-pay was $10. I bought gelatin capsules on Amazon (they come in different sizes) and filled them with the VSL#3 DS, since my son didn't like the taste of the DS packets mixed into his food. [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch is gone
SH shawne h
Jan Dollar Yeah, could have knocked me over with a feather when out of the blue I developed long runs of tachycardia (rapid heart rate), well over 200 beats/min (the maximum my automatic BP cuff would measure). Turned out I had a congenital conduction defect that waited until I was over 50 years old to wake up. Fortunately it was cured with ablation therapy. Still, it is an uneasy feeling when your ticker goes haywire. We are all only a heartbeat away from oblivion. Hopefully, you are happy to sit... [ more ]
shawne h Yes they are want to find the cause as we are from the smallest prov. of Canada and would have to travel here anyhow for tests it was mentioned an echo cardiogram and stent if necessary I wish they would put in a proper I've line my veins have all but collapsed they have one going in the arm bend and use it to get blood so well will need a radiologist to set it up . I expected difficulties just not of the cardiac variety, [ more ]
Jan Dollar What a bummer! Surgery always carries risks with it and we never think complications will happen. But they do, unfortunately. At least you were still in the hospital when this heart think cropped up. Hopefully this gets sorted out soon. Are they thinking you had a heart attack? That is often the assumption when the cardiac enzymes are elevated. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
DIGestion
dennyp3dennyp3
CeeeeCeeee I can almost feel those undigested particles of lettuce sweep through my remaining digestive system and I think of it like a broom! As those lettuce particles travel they must certainly help clean out other things which need to keep on moving through! I am so thrilled to be able to eat raw veggies and fruits I don't care how much is coming back out almost as it went in! Confetti poop! [ more ]
Jan Dollar I agree with the above. Just because something comes through "looking" undigested, it does not mean it is undigested. Humans just do not digest the cellulose cell walls of plants. Without a colon to compress everything lettuce leaves are simply more noticeable. Rest assured, your are getting your nutrition. As long as it does not make you feel ill, it is fine. Jan [ more ]
skn69 Don't worry too much about it. I have a k pouch and from entry to exit a salad all by itself takes 30mins. It looks pretty much the same going in or coming out...I stopped freaking about it as soon I realised that other than the risk of it blocking my catheter (k pouchers use catheter to evacuate things) there was no other problem unless I really overdid it. Enjoy your salad and don't worry about the aspect. By the way, pretty much all fruits, especially citrus and green leafy veggies act... [ more ]
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J-Pouch ForumsGeneral Discussion
Amoxicillin reaction?
n/an/a
CTBarrister n/a, I wasn't referring to you specifically in this thread with that finger-pointing comment. I have seen a number of posts over the years from posters blaming antibiotics for numbness and tingling in the extremities. There are a number of things that can cause such symptoms. Calcium deficiency is one. Diabetes is another. Neurological issues another. I think one of the most dangerous things one can do is this type of cause-effect analysis and conclusion which is totally unscientific. Of... [ more ]
n/a OK, just to be clear - I wasn't doing the finger-pointing. My doctors - including Dr. Shen at CC - were. Dr. Shen was quick to take me off the tindamax after more than a year on it and moved me to augmentim and then amox. due to these symptoms. My calcium levels are great, always have been, as I take supplements, eat plenty of dairy, and lift weights. I have my bloodwork checked regularly. Just sayin ... we're all different. We all react to antibiotics differently. So glad you have never had... [ more ]
CTBarrister I have never had any problem with amoxicillin/augmentin. It's an effective pouchitis treatment. I have never had any real side effects from any of the many antibiotics I have taken, except higher dosages have caused yeast infections and cipro has caused a bit of sunlight sensitivity. Never had nausea, or tingling. I usually take antibiotics with meals. After I had my thyroid removed because of cancer, and more recently while on a low iodine diet due to my cancer treatment, I noticed some... [ more ]
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J-Pouch ForumsGeneral Discussion
Feeling lost
S sally85
Ikh I don't know if anyone bled at that stage but perhaps they trusted their doctors (I know it's difficult...) and didn't worried too much. You said that you see the water red as it's full of blood but you have to hypotize that it's just some tiny drops of blood which are just coloring too much transparent water, you don't need to think its huge amount. Did you have any blood work or can you let prescribe one? It would be interesting to check your iron ferritin and crp levels, in order to see... [ more ]
sally85 Thanks jlh I'll definently look at the goodman diet, such a horrible feeling the urgency, it was fine until the j pouch was created and then since then it's problem after problem! Ikh, yep they are just waiting to reconnect me but I get a strong sinking feeling they will just tell me ur just one it didn't work for when it all fails, just feels like to many problems, the bleeding is bad and I empty my pouch even though it's not connected about 10+ times a day just water a blood, they haven't... [ more ]
Ikh Hi sally! Ok, that's not the best situation, I agree that I didn't bleed nor that I had diversion colitis when I had an ileostomy. But still, you should be positive regarding what will happen, you can treat the pouchitis and / or diversion colitis there are many options. Did they prescribe something til now? Or just waiting the reconnection? [ more ]
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J-Pouch ForumsGeneral Discussion
J pouch
D Davidee
jeane I had a severe ileus after my takedown for several days with lots of vomiting. Almost got the nose tube. I did have mild nausea after I got home, but it was from the pain meds diladid. They do have very good prescription anti nausea meds you can request to help you while you are recovering. This should improve over time. [ more ]
Kahuna Lou When I went in for my consult, prior to either surgery, I asked the question about diet as I had gastric sleeve surgery 8 years ago for weight loss and there was a regimen of starting with clear liquids (water, juices, jello), followed by soft "mushies" (mashed potatoes, oatmeal), followed by gradual reintroduction to regular foods (see: http://www.bariatric-surgery-s.../bariatric-diet.html for the regimen). My surgeon said that I would be able to take regular foods immediately after both... [ more ]
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J-Pouch ForumsGeneral Discussion
healthy pouch but too many BMs/ why?
Paul HPaul H
jeane I follow what a lot of others do here also. I pulse Cipro as needed. I can go several weeks without it, but when my symptoms return, which are related to my chronic stricture, a few days of cipro helps set me straight for while and does seriously slow down my trips. I do not get this relief with anything else I have tried like immodium or lomotil as immodium just binds me and makes passing stool so much harder with a stricture and lomotil dries my nose out to where it is very uncomfortable. [ more ]
Jan Dollar Yeah, sometimes a good cleanout sets things straight, at least for a while. If the extreme gas and urgency returns, you should talk to your doctor. Jan [ more ]
Paul H Thanks so much, I find the info on this forum invaluable, I think I'm probably more knowledgeable than my IBD clinic in Barcelona thanks to you guys. Interestingly since my scope & enema prep I've gone 2 days on 6 BMs a day, maybe the enema has cleared out the bad bacteria. I'll give the Pepto a try, thanks for the advice, I wasn't aware of it. Paul [ more ]
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J-Pouch ForumsGeneral Discussion
PSC and uncertain future for J pouch
Linda2Linda2
Jan Dollar In case you can't locate the post I was referring to here is the link: http://www.cghjournal.org/arti...3%2900483-7/fulltext Jan [ more ]
Linda2 Thanks Jan I am on the road right now but will be spending time reading your links and researching others when I get home. There will be time as need to try bio logics first then look at if it is working and that kidneys are doing okay. I so appreciate everyone's support and if you have anymore links that will help with further educating myself please share. Thanks again. �� [ more ]
Jan Dollar A liver specialist sounds like the right guy. Whether pouchitis affects the PSC course or not, it is a reasonable plan to do whatever you can to bring it under control. I presume you've looked at the pouchitis article link in the "sticky" post at the top of the Pouchitis forum? I presume you have tried the traditional antibiotics? Don't beat yourself up about getting the j-pouch. Plenty of folks have been diagnosed with PSC after getting a j-jouch, and plenty more before getting a j-pouch. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
advice needed
S Step
skn69 Hi Step, Although I have a k pouch the digestive aspect of our pouches is identical. 1. When I eat fruits on an empty stomach they arrive in my pouch within 20-30 mins (ditto for veggies). 2. Fluids (juice, water, coffee, tea etc) when taken on an empty stomach also make it through within 1/2hr. 3. Carbs like breads, cakes, pastries, potatoes and pasta take about 3hrs when not mixed with meats or fruits. 4. Meats and other animal proteins (meat, fish, chicken, eggs, cheeses etc) take about... [ more ]
JHendrix Hey Step. Sounds rough. Also doesn't sound like a normally functioning pouch to me. If it were me I would likely follow up the my doctor to check for issues and I would try some diet changes - especially for the gas problem. If you search 'diet' on this site you'll find lots of information but it may feel overwhelming. It seems the common denominator in suggested helpful diets is low starch and sugar. (Also a probiotic might help). All things you've likely heard before.... [ more ]
Step thanks for all the feedback. [ more ]
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J-Pouch ForumsGeneral Discussion
Bone broth and "leaky gut"
HockadooHockadoo
NanJ Bone broth is so good for you! (Make sure to use grass fed/ free range, antibiotic and hormone free animals.) But if you are still eating things that irritate your guts, like wheat, you will still have leaky gut. Have you tried suppositories for cuffitis? How about butyrate supplements or ememas? Butter/ ghee is a good source of butyrate. There are studies that show it helps UC and intestinal health. [ more ]
CTBarrister Bone broth is the only soup stock that is allowed on the Paleo/Autoimmune Diet. It's in many recipes in the cookbook: https://jet.com/product/produc...2X9McCFcMXHwodnSIAPA [ more ]
Ikh I think it's very healthy. One of the best food I experienced to eat is the carrot+chicken soup present in the btvc book from Gotschall. [ more ]
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J-Pouch ForumsGeneral Discussion
Thyroid Issue!
CTBarristerCTBarrister
CTBarrister Sharon, Frequent showers are encouraged. Tea, however, is banned on the low iodine diet, as is instant coffee. Certain herbal teas, like peppermint for example, are very high in iodine. The next step is a whole body scan on Sept. 23, one week from today, at which point my low iodine diet will end after 24 days. The purpose of this scan is to determine if there are any remaining thyroid cells in my body (cancerous or otherwise), and if so, their location. Thyroid cells "suck" up the... [ more ]
skn69 Are you allowed to take a warm bath? Maybe a leisurely soak and a hot tea with honey would help you get through the evening...and get some rest. I find that lollypops work best for me when I need to keep salviating but don't want to ingest too much candy (does't happend often!) Do you glow yet? (sorry just had to say it!) What happens after this treatment? What is the next stage for you? How do they test for effectiveness? Good luck and hang in there Sharon [ more ]
CTBarrister Hi, just an update on my thyroid cancer treatment which may be of interest to any J Poucher stricken with papillary thyroid cancer. So as I write this I am quite radioactive due to imbibing radioactive iodine this morning. I arrived at the Smilow Cancer Center at Yale New Haven Hospital at around 9:45 am. this morning. With the radiologist’s blessing I preemptively popped an anti-nausea pill called Zofran at 9:55 a.m. I ended up drinking a 150 millicurie dosage of radioactive iodine in... [ more ]
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J-Pouch ForumsGeneral Discussion
Looking for a Doctor
Rene.maldonadoRene.maldonado
Rene.maldonado Thank You Dianne, I had my Doc submit a console to Baylor School of Medicine in Houston so we'll see if that goes through. The VA is is good for some things but when I went to see about my Crohns issues, I did not want to start all over again. Thank You for the Advice, Rene [ more ]
Jeffsmom Rene, first of all, thank you for your service to our Country. To answer your question,Mohave you tried to VA? I don't know if there is one close by or how much experience they might have, but from what I hear from my Dad, the care is great. Of course he is in VT. My next suggestion is a medical,school. I'm not familiar with San Antonio, so I can't say. After that, if you feel like traveling, Cleveland Clinic in cleveland Ohio. Good luck dianne [ more ]
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J-Pouch ForumsGeneral Discussion
Reversal Surgery Tuesday 9/15
SF Sharon Flynn
mgmt10 Just go slow with food....it's tough when you're hungry but start out with small portions. Happy healing! [ more ]
Sharon Flynn Surgery yesterday. So easy I cannot believe it! Been walking all over the place. Just ice chips and Popsicles yesterday. Had 1 small BM felt just like before. Amazing... Just want off these fluids! So hungry! At Cleveland Clinic. [ more ]
aka KNKLHEAD Marianne and my results were similar, so I won't duplicate. As she opened, each person is different, though! I truly had no "real pain" that I couldn't deal with, but there was "soreness." I had an open stoma hole that had to heal and it was honestly not a big deal to me and didn't hurt and didn't drain all that much, but I had to keep it covered. It just totally closed about six weeks after surgery. I also hope all goes very well! Best wishes! [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Colitis/Jpouch and Ancylosing Spondylitis (AS)
N nc
rachelraven Ah. You *are* a complicated case! [ more ]
nc Thanks Jan, I really appreciate your time and advice. I will take your info with me to my rheumatologist and see what she has to say. All the best [ more ]
Jan Dollar You are sort of stuck between a rock and a hard place, with no good choices. If it were me, I'd see my rheumatologist and work out a plan where you have a trial with NSAIDs (maybe Celebrex or Mobic or Relafen), understanding that you'd have to discontinue if you developed side effects. How about sulfasalazine? It is primarily useful for peripheral arthritis, but there is some evidence for some effect with the axial disease. I do take it along with the Cimzia and my pain meds. My thoughts are... [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
polyps in rectal cuff
S Sandyj
Sandyj Thank you all for your responses. I am awaiting the biopsy results to see if there was any dysplasia or malignancy of the polyps. I am assuming it will not result in any surgeries right away no matter the result. I have a very severe case of FAP and have been told I will undoubtedly end up with an ileostomy eventually. At this point we are trying to prolong it as long as possible. I have lots of polyps in my stomach and small intestine as well and have had adenomas removed from my ampulla... [ more ]
BillV I went 25 years with a j pouch and had no polyps in the rectal cuff, although a number were removed from the pouch itself and duodenum. At the time, I was on an annual scoping schedule. Then my GI biopsied a suspicious spot in the rectal cuff that turned out to be malignant. A CR surgeon removed it and fortunately took sufficient margin to eliminate risk of spreading. However, I believe my sphincter was compromised by that surgery. Five years later high grade dysplasia was found by the... [ more ]
Scott F Sandy, it is possible to perform "pouch advancement" surgery to eliminate the rectal cuff. I honestly don't know if it's appropriate for you. The surgery is delicate and hand-sewn, best done by a very experienced surgeon. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
getting redo, questions regarding pouchitis
PouchomarxPouchomarx
SolomonSeal New pouch here... was told pouchitis won't happen and if it will it will be easily controlled... here I am with ~15 BM's a day due to "mild" pouchitis. I already said that I think getting a redo is crazy. I wish I had never heard of jpouch, but I know everyone is different. [ more ]
AllyKat I too am diverted recently because of pouchitis gone bad. 15 years. My pouch is still in, how I would love to reconnect but not possible. [ more ]
Scott F There are plenty of antibiotics to try, individually or in combination. Bad side effects from one (or several) of them really don't predict anything about how well a different one willl be tolerated. At a certain point we may just get exhausted, of course, but success is more likely for the persistent person. I think *anyone* struggling to find a pouchitis treatment should probably try Xifaxan, at least if they have health insurance (it's expensive). Other options include Tindamax,... [ more ]
See all 13 replies...
J-Pouch ForumsGeneral Discussion
j pouch in one surgery..anyone??
W worriedmom
NanJ Hi, WorriedMom, I am also a worried mom. My son was diagnosed with UC at age 13. At first sulfasalazine worked. Then about 1 1/2 yrs later he started to flare. Nothing worked- steroids, remicade, suppositories, antibiotics, diets etc, and 2 hospitalizations. He got TPN in a PICC line, then a laproscopic colectomy and ileostomy last November (age 15). At that point he still had his stapled rectal pouch. Nine days after his colectomy he needed emergency surgery for a complete small bowel... [ more ]
Jmama Hi Worriedmom, I had a CT scan a few weeks after i got out of the hospital. I Hope your son feels better. I have an appt with my surgeon today and I am going to talk to him about a reversal. I am supposed to back to work in Oct. but there is no way. My sick benefits run out in Oct, so I don't know what I am going to do. I have two girls to support. Life sucks sometimes. LEt me know how your son is doing. It's a rough things for a child to have to go through, and I am sorry he is experiencing... [ more ]
thumprhare Cherries are the devil! (For me, too) I haven't found a cereal yet that I tolerate. Seriously....cut just those out for a week and see if it helps. Sadly, I loved them....but not on the menu (for now!) [ more ]
See all 14 replies...
J-Pouch ForumsGeneral Discussion
Questran.
MysticobraMysticobra
Scott F Richard- Sucrose *is* the natural sweetener. Sucrose is just table sugar. The artificially sweetened one is called "Questran Light." [ more ]
Mysticobra It has sucrose. Next time I will ask for the naturally sweetened. I didn't know and I have two boxes so I have to use it. It is expensive as my insurance covers 3 months at a time. And yes... So far I am pleased it works. I may be able to avoid surgery along with a diet plan. I am going to see a nutritionist next week. I need help getting all the calories I need. Richard. [ more ]
Scott F Like psyllium, Questran is a solid material (in tis case a resin) that bind with all kinds of things (including water and medications) and takes it all for a ride. You're describing a normal mechanical effect. I'm glad you're seeing good results. Be careful to space any medications well away from Questran doses. Are you using the artificially sweetened or the naturally sweetened? [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Rectal bleeding with j pouch
A ams
ams Thanks so much for sharing it does make me feel better. It really scared me. [ more ]
Elisa W It sounds like it could be cuffitis. Your doctor will be able to tell--good that you have an appointment. [ more ]
Ikh I advice not to worry: the first time I had bleeding I was quite scared but not too worried, then it worsened and one night I began to have MASSIVE bleeding (it was 9 months after takedown) and I went with my feet to ER, then hospitalized for some days. Intravenous antibiotics (flagyl and ciproxin) eliminated the bleeding and I am good since then (I still bleed sometimes, but only if I strain, moreover I have a light chronic pouchitis - crp levels are somewhat always a bit higher than normal... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Decision Made
K KonaBlue561
Elisa W I agree that you will feel so much better, even if you have the bag. You'll get used to it quickly, and it's so much better than being sick! I was so sick before I had surgery, and while I'm really happy with my j-pouch, I was fine with the bag too. I feel so much better. Best wishes! [ more ]
JKC You will be so happy with your decision. I did not fight it as long as you did because mine got out of control and it was emergency surgery, but it is so great to not feel sick. The bag is not great, but much better than feeling sick. I know you will do fine, good luck! [ more ]
KonaBlue561 My surgery is scheduled for October 14th. He explained the risk that I might not be able to have a pouch due to my previous surgery. He's not sure what condition my insides are until he gets in there. He went over all the usual risks with surgery in the pelvic area...impotence, ejaculation issues, bleeding, infection and a few more on the list. I'm prepared to accept a bag as a permanent option if it comes to that. I can't keep living how I am at this point. [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
liquid vitamins.how do you know if helping or working?
PouchomarxPouchomarx
Scott F My rationale for a multi-vitamin is that it takes an enormous amount of vitamin D to keep my blood levels up. I don't know why my absorption would be impaired, but it seems to be, and I'm *guessing* that other nutrients might be similarly malabsorbed. For about a week prior to surgery, though, you probably should stop the supplements, unless your surgeon tells you otherwise. Fish oil in particular can affect blood clotting, but you really need things working close to factory specs during... [ more ]
skn69 The only 'real' way to know if it is working is to have had bloodwork done before you start and then again a couple months later...if not there can be certain signs of improvement such as less exhaustion, hair no longer falling out, better sleep patterns (you fall and stay asleep for example if you couldn't beforehand), better skin colour or 'clearer eyes', less brittle nails...they are all mild and very, very subjective but my personal rule is if I am feeling generally, all round better... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Fistulotomy
JKCJKC
Megan O Great news, jkc!! [ more ]
JKC I had the fistulotomy yesterday and everything went perfect. The surgeon was happy with everything and I was discharged earlier today. I am pretty sore, but have not experienced any issues with control. This was a superficial fistula that did not require cutting much muscle. [ more ]
rachelraven Three colorectal surgeons have refused to do one of these for me. They say our type of surgery weakens our sphincters, and that it offers a high risk of incontinence afterwards because of that. Let us know how you do after. Also, what type of fistula do you have? Mine is a common simple intrasphincteric one "at 7 o'clock." Does not involve my pouch. I have had a seton off and on for over 2 years. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Another Question, I'm sorry!
NS Nora S.
skn69 I always had bladder sensitivity post op...with my 1st pouch surgery they did a contrast study at 30 days post op because I was dribbling too and they were afraid that something was going on...it resolved itself (it was often the irritation from the catheter being in place for so long). Now after over 15 other pouch/abdominal surgeries I don't panic...it is usually resolved within a few weeks...if not, I start with an ovule (the OTC stuff for mild irritations/yeast...) I then move to... [ more ]
Jan Dollar AZO might help. All opium products are prescription only. If you want to try MJ, I recommend vaping. Quick action like smoke, but without the smoke. Edibles are more long lasting, but hard to tell what the best dose is, because it takes so long to take effect. But, be sure to keep your surgeon in the loop. When I had serious tailbone pain with sitting, it turned out to be a presacral abscess. After a month of this pain, I spiked a temp of 105, landing me in the hospital for two weeks. Your... [ more ]
Nora S. No infection, just the aching constantly. I've noticed it's painful to sit, I have to be very careful to just sit down. When I do urinate I don't feel as if I'm ever done, I can sit there with little dribbles and then the pouch will start and I have the foggy liquid coming out. I can hold both the urine and the pouch, but the more I hold the urine, the more it hurts to go. No pain with holding the pouch. Can I get over the counter anti-spasmodics for the bladder, like AZO or should I avoid... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
METAMUCIL REVERSE EFFECT??
bederyparisbederyparis
lclassen Metamucil is my saving grace. I have been on it daily for over 15 years, and I refuse to go a day without it. I even take it into restaurants if I have to. It has kept me "regular" and i swear by it. What works for me is to mix just 1 tsp with a little ice, about 4 oz of very cold water, and 8 oz of orange juice. Then I drink that while I eat my breakfast. And, right now, I'm also taking VSL #3 DS, so I just add that right in... I jokingly call it my morning cocktail. My nurse did tell me... [ more ]
rachelraven It made things too thick for me after takedown, so I never used it. Never needed it. [ more ]
CeeeeCeeee My gastroenterologist told me that Metamucil is a regulator. It can help to decrease or increase B.M.s. I use it when I am feeling "constipated". I didn't start using it until about a year after takedown. I just reintroduced foods and liquids very slowly and methodically. [ more ]
See all 9 replies...

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Bill Johnson founded the J-Pouch Group in 1997.

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

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