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J-Pouch ForumsGeneral Discussion
11
JG Julie G
Julie G 11 [ more ]
impossibleprince Hi Julie, I live in Leicester and I am always in pain, Ive had my j-pouch since 2009 and had pain, bleeding ever since, The gas is awful and so painful to go to the loo, at the moment I have some kind of blockage and am just on liquid diet, awaiting a ultrasound scan. I am constantly on Cipraflaxin but I can't say they do much for me. [ more ]
Julie G 11 [ more ]
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J-Pouch ForumsGeneral Discussion
Questions to ask at a j-pouch consult
U UCWarrior2010
Pkitty Looks good! With regards to your question on vedolizumab having any implications on surgery, I would add that Cleveland Clinic mentioned that remicade, because of it's immunosuppression, increased the liklihood of spetic infection post surgery - so you may want to also ask if there is a risk for you for that b/c of prednisone and vedolizumab use and if so, if you would benefit from a wash out period. I asked the surgeon these questions and they said they weren't sure but didn't think so with... [ more ]
kathy smith Thank you for posting this list. Wishing you the very best surgical results possible. Sending healing and healthy vibes your way. kathy [ more ]
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J-Pouch ForumsGeneral Discussion
Cook book?
skn69skn69
UCWarrior2010 Sharon, I think this cookbook is a great idea. I bought several cookbooks as I tried the SCD diet and different variations of it and I found that the ones I liked the best had recipes with simple ingredients and not too complicated recipes. It will be great if your cookbook could have suggestions for what foods to eat when flaring or trying to reduce the number of trips to the bathroom, etc. Either way, I think this is a great idea. Good luck!! [ more ]
skn69 I think that low or high sodium are not priorities in this sort of book...nothing to do with IBD or pouchers...there are enough cookbooks out there for diabetic or hypertensives etc...this is purely IBD and/or pouch (no, I can not do pure K pouch because there are just not enough of us)...but IBD/pouch there are certainly enough...will work on the chapters first but I have a good idea of what might work but would love your input... Sharon [ more ]
CTBarrister It's a great idea but is this going to be a cook book for K pouchers, J pouchers, or more generally for anyone who has been de-coloned? I think you need to establish the target audience and then think about how to organize the book. As you have indicated in your posts K Pouchers and J pouchers seem to have different dietary tolerances. You may also want to consider organizing the book by categories of recipes, like low residue recipes, low sodium, high sodium, low carb/high protein etc. Good... [ more ]
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J-Pouch ForumsGeneral Discussion
Third Anniversary of Step One Surgery
M Meesh62
Jan Dollar Yes, thank all of you for taking the time to come back and share your success. Everyone needs hope, and it can be difficult to cling to when recovery is so long... It's been 17+ years for me and I've never looked back, even with complications and associated diseases. Jan [ more ]
Meesh62 Glad people are finding my post helpful. As far as toilet cleaning, at home I keep some Clorox Wipes in each bathroom and just give it a quick clean when I am done. For anything that stays in the bowl I also have Dow flushable Fresh Brush toilet cleaners. Public bathrooms -- meh, I don't worry about them. When visiting friend's homes I do give a quick wipe around with toilet paper if I've left a mess. The noise can sometimes be an embarrassing issue in public. I try to keep things in... [ more ]
Cowboy Congrats Meesh, I too am just over three years since 2-step and don't visit as often as I should. I was miserable and found this site to be such a wonderful reassurance that my decision would be a good one. And, I don't regret it one bit! For those that are suffering and considering surgery, do it! It was the best decision for me and such a blessing to get my life back and enjoy travel and seeing kids and grandkids. Prayers going up right now for those of you still suffering from UC....it is... [ more ]
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J-Pouch ForumsGeneral Discussion
Strange feeling in pouch
D dilion
dilion Thanks for the input. The biopsies were normal. I guess it's back on the Flagyl. Yea!!! [ more ]
RLC That sounds like me all the time! You should see my face when I get that movement...very painful until it makes its way out! This is not fun at all! Roberta [ more ]
jeane Diane, Did they do biopsies with your scope as that is the best way to check for inflammation in your pouch. You could have pouchitis as this sounds similar to what I experience when I have it (a lot of cramping/gurgling in my pouch with urgency). [ more ]
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J-Pouch ForumsGeneral Discussion
Oooo oooh that smell...
SP SemiColon Phil
Former Member ❤️
Manchester CTBarrister I got it. I was just having a joke. I think the original poster was aware it wasn't about J-pouches or IBD. It just reminded him of the song after he had used the bathroom. Sorry [ more ]
CTBarrister Manchester, I posted an explanation of what the song is about earlier in the thread (3rd post). It is not about IBD or the smell of stools of a person with IBD. [ more ]
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J-Pouch ForumsGeneral Discussion
pouchoscopy
S Stone
Scott F A pouchoscopy is a pretty minor procedure. Remember that the pouch just isn't very big. I had no sedation and experienced no discomfort. It could be argued that sedation is inappropriate for pouchoscopy. [ more ]
Holly M I am having my first one done on Tuesday and because I am not having any issues right now (tapering off cipro) and my rear end is not in distress I did opt to have it without sedation. My doc's office said no prep, but I still intend to eat light the day before and the morning of. Good luck on your scope on Monday. [ more ]
mgmt10 I had my first scope of the pouch back in July and it didn't hurt at all. I had no sedation and I prefer it that way. Yes, it's a bit uncomfortable but really no big deal at all. It's actually really cool to see everything on the screen. You'll be fine. [ more ]
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J-Pouch ForumsGeneral Discussion
blood test results wacky
crick05crick05
crick05 Thanks Jan It is so comforting to know that you are there to bounce things off of and you have so much knowledge. I will wait to see the specialist and go from there. Crick [ more ]
Jan Dollar None of this is because of what you've been eating or not eating, so don't worry about that. The increased levels of aldosterone normally would cause abnormal sodium and potassium levels, so it was either caught very early, or perhaps it is a false positive test and should be repeated. Presumably, your doctor has referred you to an endocrinologist and he will get to the bottom of this. If the result is accurate, this can be serious, as it could mean an adrenal gland tumor (possibly... [ more ]
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J-Pouch ForumsGeneral Discussion
Help any have both of these issues???
TheaThea
Torg I have had both of those done. I am about 2 years out. I had to loose some weight so they could hook me back up. I am finding I am having some pain issues and my GI Dr. Suggested I see a Pain specialist. We are working on some headache issues first as he thinks those will be easier to fix. What problems or what are you looking for help with? [ more ]
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J-Pouch ForumsGeneral Discussion
pouchitis and nobody will help!
Akk3769Akk3769
Connie This is crazy. Find a GI with pouch knowledge, even if it means you have to travel a bit. [ more ]
Akk3769 I refuse to take any steroids since I was on them for 2 years. They did more harm than help. So far I have started the flagyl so hopefully that kicks in soon. I am just so miserable right now. When I go to the GI tuesday I will ask for a scope and biopsies to be done to prove to everyone that there is a problem. Until them I am just resting and staying hydrated! [ more ]
Spooky Yes, this. Can you call the specialist's office and ask for a prescription in the meantime? Explain what is happening with your primary care doctors. You shouldn't need to suffer like this in the interim. [ more ]
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J-Pouch ForumsGeneral Discussion
saw my surgeon about cipro yesterday
W wiggles
wiggles was scoped a few weeks back and no stricter. only pouchitis and cuffitis... [ more ]
jeane Wow Alex. You sound like me minus the self dilations. I'm still suffering though and I know my stricture is also Acting up but my surgeon frowns in self dilating. I am at my wits end and now Dr Sgen is suggesting Kenolog injections but he in nine hours away and I'm concerned about my local GI doing this. Cipro seems to constipated me which us bad for the stricture and cuffitis. How long have you been on cortifoam and what dose ? I have tried Canasa and then cortisone suppositories and... [ more ]
NurseAlex Wiggles, Have you been examined recently? It sounds more like you may have a bit of a stricture there. I have been suffering with cuffitis for over a year now with recurrent strictures. After numerous dilations and a slew of medications, what is finally working for me is Cortenema foam every other day, Hyoscamine antispasmodic twice a day sublingual, daily self dilations with a Hagar dilator and xylocaine jelly, along with carafate or nifedipine cream, VSL#3 and the number one thing that... [ more ]
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J-Pouch ForumsGeneral Discussion
Biologics
L LisaT
RLC You are right Marianne end of April. That is what I thought too long for same old same old. Off to acupunturists today. Hope she can help me out! Roberta [ more ]
mgmt10 Roberta Sorry you are still struggling. It certainly does sound like something is still going on inside you. I hope you can get some relief and answers soon. If I recall right, you had your takedown back in the Spring. That's a long time to still be feeling poorly. [ more ]
RLC Marianne- Regarding the prometheus test the GI and surgeon agree with you regarding the test. However, I am reluctant to think this way because I am still having trouble and I still feel like I have a disease within me. I have contractions going, nausea, vomitting and 3 weeks before Xmas I had mouth sores in my mouth. Not sure what the hxxx I am doing wrong. Trying to stay positive but......! When I had UC even with all the bleeding I did I still felt stronger. I am so weak and muscles still... [ more ]
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J-Pouch ForumsGeneral Discussion
Calmoseptine UK
F Fazz
jwil44 Thanks so much TE Marie I cant wait to go get them on Saturday.... [ more ]
TE Marie I buy a bottle of Witch Hazel and apply it with folded TP or cotton. (You can use it on your face too.) I bought my last Calmoseptine, in a 6 pack on Amazon, for a cheaper price than by the tube price per tube. [ more ]
jwil44 @Spooky, Thanks so much I will definately try the witch hazel wipes and yes I do think its a yeast thing...so aggravating I've had problems with that. I do want to try the Calmoseptine cream sounds like it might work good for the butt burn, I wonder if you can get it in Walgreens not sure if you have a Walgreens in Toronto or not or I do see the site to order it from. [ more ]
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J-Pouch ForumsGeneral Discussion
‘RePOOPulating’
kathy smithkathy smith
Lew Kathy I'm really waiting for them to grow me a new colon from stem cells. (Perhaps I'll need another lifetime for that. LOL) Lew [ more ]
kathy smith Here's another link from today. kathy [ more ]
Lew Kathy I was aware they were using the real stuff but reading this in the newspaper yesterday was a bit of a surprise. Sure hope it works over the longer term. These researchers are doing some pretty amazing things! Lew [ more ]
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J-Pouch ForumsGeneral Discussion
Problems after recent surgery
P pouchinandout
RLC pouchinandout that is my doctor/hospital as well! Good to hear you are a success story! Going to acupuncturist on Friday to see if that can help me out! Thank you for your input. Roberta [ more ]
pouchinandout I had it done at Miriam Hospital. That is where I have all my stuff done. Dr Vrees of RI Colorectal Clinic is my doc for the pouch. He is great and Miriam is a fantastic place (if you have to be in a hospital, of course). Good luck. Time and attention to diet worked well for me. Good luck. [ more ]
RLC Good luck! Where do you go for treatment? I have had all my surgeries at Miriam Hospital in Rhode Island. I am 8 months from takedown and still struggling with my j pouch. They did a prometheus test (blood work) and the markers came back with Crohn's disease. GI and surgeon are not 100% convinced that is what I have. I am still not any better and not sure if it is because I am only 8 months out. Still struggling! Roberta [ more ]
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J-Pouch ForumsGeneral Discussion
straight connect?
W wiggles
Jan Dollar You need a pouch for pouchitis, just like you need an appendix for appendicitis. But with a straight pull through, you can still get ileitis. So, in that sense, you can develop inflammation in any part of your body. Jan [ more ]
TE Marie I don't know but think it's possible. I think that means there is still a rectum and there is a "pull through" to connect the remaining intestines to the rectum. Is that correct? [ more ]
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J-Pouch ForumsGeneral Discussion
Abscess and Treatment
S SloanNYC
bootstrap Yes, the radiologist puts the drain in. As long as you are fully sedated when they do it, which is standard practice, then it does not hurt - you should be so out of it that you don't care or feel anything, similar to when you get a colonoscopy... so just make sure they plan on sedating you or yes it would hurt a great deal. Remember you will be all drugged up afterwards, so you will need someone to drive you home if they do it as an outpatient procedure. If you were asking about the CT... [ more ]
SloanNYC Thank you. Does the radiologist do it? Does it hurt? [ more ]
bootstrap I recently had an abscess after surgery while I was still in the hospital. Antibiotics don't necessarily work because an abscess is a closed system - not connected to your circulatory system - and the drugs can't get into the abscess to treat it. If the build-up is tiny enough, sometimes your body can resolve it on its own, but if it is enough to cause you discomfort, I'd suspect you'd need to have it drained. In addition to antibiotics, I had to have drains put in my sides at the... [ more ]
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J-Pouch ForumsGeneral Discussion
Surgery Scheduled
L LisaB827
Uc-Danielle I always go in expecting the worse praying for the best. And trust me you'll be happy when it comes to the warnings Bc now you are prepared somewhat and won't be blind sighted. I hate when someone says oh this will be easy! And in reality it's not and I have yet to have that happen each procedure they were right on how I would feel and I was prepared mentally for it. One of my surgeons fellows told me today chip up not down, and I think that is good advice! My 2nd surgery I had on may 17th... [ more ]
runner4449 I know what you mean, Isb2719. I know it's hard to read all of the worst case scenarios, but I think it's best to be prepared for the worst, and hope for the best. Hopefully you'll fall somewhere in between if it can't be the best case scenario. There will be an end in sight. Keep your chin up and your heart strong! [ more ]
LisaB827 Thanks for all the replies! Although now I'm slightly more nervous about my upcoming surgery. I'm also nervous about missing so much work during this process. I already took over 3 months off in 2012 for my initial surgery, along with its complications, and a pregnancy on top of it... And now I don't know how long I'll need for these 2 surgeries. Ugh... I can't wait for this all to be over with! [ more ]
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J-Pouch ForumsGeneral Discussion
ATKINS diet & Jpouch
LA Lee Ann Pal
Lee Ann Pal Thank you so much Ladies...this is day 2 and I seem to be doing ok.... Lee Ann [ more ]
skn69 Lee Ann, Although I have a k pouch and not a J pouch (same pouch different exit strategy) I have lived on a modified Atkins diet for the last 30 yrs...I used to give myself 1 carb day a week where I would eat my bread or pasta etc but for the rest of the week it was coffee+juice+vitamins for breakfast and lunch/dinner was a protien (beef, fish, chicken, dairy, soya...) + salads or cooked green veggies and my fruits were usually at 4 or 5 pm...for my pouch it was a good deal and worked... [ more ]
suebear If I recall, Atkin's is high protein. Eat your protein first, then your vegetables. You should be fine. Sue [ more ]
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J-Pouch ForumsGeneral Discussion
Vitamin D level too low
S Subzeromambo
Torg Not by IV but I have tried taking 50,000 units. I have to take 5,000 IU hard pills a day. If I take the gel tabs then my levels drop. Just something to consider. [ more ]
Cataja No...I didn't do infusions, but my Vit D all but dissappeared after my surgeries. I took a prescription suppliment and it came back...seems to be OK now....we hear this type of thing alot on this site...not sure what causes it. [ more ]
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J-Pouch ForumsGeneral Discussion
My world has just collapsed......
G Guest
TE Marie When a divorce happens it is sad. You have conducted yourself well and your world didn't crash. Here's to a HAPPY New Year and New Life for you and your girls. I got a tattoo for my birthday before Christmas. My family was laughing when I told them I wanted one. It symbolizes all the suffering I have had in the past and is a reminder, to me, to keep putting one foot in front of another. It is a symbol that means "Acceptance of Optimal Health". It's an ancient angelic symbol, supposedly. I... [ more ]
mgmt10 A new year and a new start on life for you. Wishing you the best with your health and your personal life. I have helped a friend cope thru a recent divorce. It's so hard on everyone but she will make it thru and so will you. Take care of yourself! [ more ]
Pouchomarx Hey guys, So my divorce was final this past friday. I cried like a baby and she treated it like just another day. I am doing ok though. I havent seen my therapist in over a month cuz cant afford her now, especially since beginning of the year and deductible not met. still on Lexapro. Im finally starting to move on. I will be ok. As far as my health, still have this sinus in my pouch but all is calm. Lets hope it stays that way [ more ]
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J-Pouch ForumsGeneral Discussion
J Pouch Bathroom Trips Question....
A Av8erchic
RWNC It really varies from person to person. When I had my takedown I remember seeing people who were down to 6-8 BM per day two weeks out from their surgery and I could still barely function at that point because was constantly still running to the bathroom. Also I think people get stuck on a number, but to me the urgency was the main thing. It went away within the first month and bathroom trips settled into a more predictable manner. Leakage at night stopped at about three months out. But I... [ more ]
TinCan It took me 6-8 weeks. [ more ]
daviwyat First symptom of UC June 19 2012 (stomach pains, blood in stool) I am 10 days out and staying with simple soft foods I am down 3 trips from yesterday. And I increased my food today. Diagnosed with UC July 3 2012 Hospitalized July 20 2012 due to blood loss and other complications. Loss of 54lbs in weight between July 19 and August 4 2012 Total removal of large intestine July 30th after large intestines completely ruptured. Initial J-Pouch construction November 13, 2012 Final Take-Down... [ more ]
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J-Pouch ForumsGeneral Discussion
Fistula
Uc-DanielleUc-Danielle
Uc-Danielle I am waiting right now for the EUA I'm first so we had to be here at 530 am but thank you. I don't know how much my surgeon will look into it though. [ more ]
GinLyn Danielle: There is a different option being used here in Europe with MUCH higher success rates... Seriously worth the surgeon looking into! Can't at the moment, but will PM you later with details. Gin [ more ]
Uc-Danielle I had my Pre op appointment today and tomorrow the way I understand is that there Are 3 options Dr. Remzi could lance it, tighten the seton, or put a draining seton in. Not looking forward to waking up after the procedure and bein miserable. [ more ]
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J-Pouch ForumsGeneral Discussion
Is this dehydration?
G GraceL
jax17 Do you think you could tolerate drinking some sort of sports drink like Gatorade? It's not my favorite, but just prior to having my first surgery in November, I was pretty chronically dehydrated and my doctor suggested that I just drink Gatorade instead of water for a while. It did make a difference, so anytime I suspect that I am getting dehydrated, I switch over to drinking Gatorade for a few days. For me, one of the biggest signs is an awful headache, so I can definitely relate to what... [ more ]
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J-Pouch ForumsGeneral Discussion
Surgery #2 of 3
J jax17
jax17 Thanks for the replies! I know this is such an individualized experience, but I'm trying to prepare as much as possible. I've also heard from others that the loop can be tricky...hoping that it's not the case, but it would be my luck especially since I have just gotten the hang of dealing with my end ileostomy! [ more ]
TrustyShellback I think my second surgery was about the same as my first one recovery wise. I left the hospital after 3 days and had really bad back pain. Probably from the bed.The loop ileo was very difficult to manage compared to the end ileo because the stoma was flush with my stomach which made it hard to get a good seal on the wafer. I ended up having to use a convex wafer. The output was very watery and heavy no matter what I ate. And I had to empty it much more frequently. I hated the loop so much I... [ more ]
n/a For me, the second surgery was by far the more difficult one to recover from. They spent a lot of extra time removing adhesions - this may (or may not) have been part of the problem. Also, I felt much better going into Surgery #2 than I did for Surgery #1, so didn't get the same feeling of RELIEF as I did after Surgery #1. Loop ileo was a bit more difficult than the end ileo. Liquid output was heavier (in quantity AND weight), and required more attention to staying hydrated. But remember -... [ more ]
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J-Pouch ForumsGeneral Discussion
nutty bars too hard to chew
B buzzatsea
buzzatsea Thanks everyone! I found this (i'd sub almond or sesame butter... and it likely needs some more protein... and kelp/molasses sound interesting!): http://chocolatecoveredkatie.c...ookie-dough-cookies/ Happy chewing! [ more ]
Subzeromambo I agree with Suebear. The ThinkThin bars taste great and do not hurt at all as they go through my digestive system. I tried Kind, Lara's bars, Cliff and Luna. ThinkThin were the most successful for me. [ more ]
skn69 I love nut butters mixed with protien powders too...But sesame butter is great too and I used to use kelp, lecitin and B6 in the mix or blackstrap molases (sp?)...depending on flavour I am looking for...honey is great for energy and some people use soya protien... Cocoa powder gives great flavour too... Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
Camping
S SimpleX
Subzeromambo Yes. I use wag bags. It turns liquids into soft solids so it is easier to pack out. They come with a black double sealed bag, tissue and hand sanitizer. [ more ]
SimpleX Where do you put the trash bags? just carry them with you during the trip? [ more ]
suebear Yes, I frequently camp and backpack for up to 10 days at a stretch. Really, using the woods is no problem. Be sure to take wet wipes, and I pack my own small trash bags for my used TP/wet wipes. Don't be scared, have a great time! Sue [ more ]
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J-Pouch ForumsGeneral Discussion
New Hope for those with Chronic Pouchitis
P Pkitty
Pkitty Majority of article copied and pasted below in case you can't access link: Background: Pouchitis is the major long-term complication after ileal-pouch nal anastomosis for ulcerative colitis. Ten to 15% of patients develop a chronic pouchitis, either treatment responsive or treatment refractory. Aim: To evaluate the efficacy of oral budesonide in inducing remission and improving quality of life in patients with chronic refractory pouchitis. Methods: Twenty consecutive patients with active... [ more ]
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J-Pouch ForumsGeneral Discussion
Cigarettes surpress my pouchitis
RB Rupert Bear
TE Marie Smoking can cause Crohns then why didn't I get crohns instead of UC? Just saying as I thought know one knows what causes these diseases. [ more ]
CC Rocks I use to smoke could not though when my colitis flared it made me run, plus just the smell made me sick when I was not feeling gooe. I quit when I got sick about four months before my first surgery, when I saw Dr. Shen at Clevleand CLinic he told me never to smoke again becasue it can cause crohns in the pouch, not in everyone but in about 30% of j pouchers he said, that enough made me not want to ever pick one up again. I want to keep my pouch forever if possible. [ more ]
TE Marie My GI told me soon after my diagnosis that maybe I should talk to him before I quit smoking. I had cut way back to 1-5 a day and never was a heavy smoker. A family friend had to have his bladder and colon removed due to cancer caused by smoking and has 2 bags. There are reasons other than lung and heart problems to quit smoking. The prednisone really did a number on me, I gained 65 pounds I could never loose until my colon was removed and then it just fell off. I also had diverticulitis pan... [ more ]
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J-Pouch ForumsGeneral Discussion
Recent Takedown Surgery Questions
A Av8erchic
CC Rocks I to had trouble urinating afer my second surgery, I had three stage. My surgeon at Cleveland Clinic told me that the nerves of the bladder get stunned during surgery I had single port laproscopy. The nerves take some time to wake back up, I saw a Urologist also at Clevland and he confirmed the same thing. They put me on valium because it relaxes the muscles and it worked, but I did not fully start to urinate until about a year after my take down. With the pouch not being empty your body is... [ more ]
Av8erchic I appreciate both of your responses! I am still on pain meds-so that could very well be it, in addition to the anesthesia. I go back to the doctor on Monday, so if I'm still having an issue, I'll be sure to bring it up. [ more ]
vstRN I've had this with some of my surgeries. Pain meds can often cause urinary retention/hesitation. Are you still on them? I had issues with Dilaudid but it cleared up very quickly as soon as I switched to something else. [ more ]
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J-Pouch ForumsGeneral Discussion
Breakfast thoughts
GinLynGinLyn
kathy smith I found when we were visiting Prague that a couple of scrambled eggs in the morning worked really well and staved off hunger for quite a long time. Also, I wonder if you can cook oatmeal in the evening and then just warm it up in a microwave in the morning. I don't think you'd be killing any nutritional value by adding honey or sugar. Although, n/a's suggestion of adding a big dollop of greek yogurt sounds pretty awesome. kathy [ more ]
skn69 Hi Gin, You can make the cooking oats in the microwave oven to speed things up ( )...what I do is boil water in my electric tea kettle and mix it with the cooking oats and then add the honey or sugar/cinnamon on top (I like to add raisins) and pop the whole thing in the microwave for 3xs 30secs...you can figure it out with your microwave and its cooking times...works just fine for me when I need to thicken things up or just want a quick, hot meal or desert...I only have liquids for breakfast... [ more ]
n/a Some days I have oatmeal topped with a big scoop of greek yogurt, bananas, peanut butter and cinnamon. I'd prefer it with sugar of some sort, but the cinnamon and plain yogurt adds some flavor. Other days, I have a couple of eggs, either poached or fried, with bacon and toast. Coffee, too. My pouch handles both well. [ more ]
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J-Pouch ForumsGeneral Discussion
Veteran J-poucher Forum?
KelseyHey2308KelseyHey2308
mgmt10 Kelsey, If you are on Facebook, PM me if you are interested and I can add you to the two j pouch groups I belong to on there. It's a private group so you have to be added. It's just another support area like this but sometimes you get replys quicker. [ more ]
GraceL Aww Kelsey it's the moving on with the life that is hard. I'm going for my first stage of the jpouch surgery now in jan and it terrifies me but what terrifies me more is not having the support I had with my first op. our hospital has support group every 3 months for those with stomas and nothing for those with internal pouch why is internal pouch any different to having a stoma we still deal with all the same problems. So why should having a poich for three years be any different to havig a... [ more ]
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J-Pouch ForumsGeneral Discussion
abdominal exercises
J Jason4
TinCan If you can tolerate something more intensive than what has been mentioned - I have one of those exercise machines that utilizes your body weight for resistance (can't remember the name of it). It consists of an inclined bench, so for greater resistance you increase the angle of incline. Anyway, for sit ups I lay on the bench at an angle (my head above my feet!) I find comfortable. This provides a meaningful workout but reduces stress (including on my back) quite a bit. I don't think you need... [ more ]
skn69 Jason, My surgeon taught me a safe way to start to build muscle (I am hernia prone so I need to be careful)...laying on your back you take very deep breaths, pulling the air down as low as you can, filling you abdomen and stretching it out as far as you can....hold for 5-10 seconds and release....blow out the air completely while pulling in your abdomen as tightly as possilbe...until it is totally flat (concave?) and tight...hold 5-10 seconds and repeat...It works wonders to build abdominal... [ more ]
bootstrap I would start small to build a foundation and work from there. One very safe one is if you have a large stability ball. Sit on it and rotate your pelvis in circles, first one direction and then the other. Start with ten circles each direction and build from there, adding sets over time. Yoga can also help stretch and strengthen core muscles. Do those sorts of exercises for a while before moving on to crunches and more intense ab workouts. [ more ]
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J-Pouch ForumsGeneral Discussion
Going for a j pouch
G GraceL
GraceL Also just been thinking are there any exercises i can do to help strengthen everything I've been doing the exercises I was given when I came out of my first up in feb. is there anything else I can do? I'm worried about control as I'm getting my rectum removed due to it not going into remission [ more ]
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J-Pouch ForumsGeneral Discussion
Returning to Work After Takedown Surgery
A Av8erchic
daviwyat I am 10 days Post op Take-down and heading back to work Jan.14 in an office environment. At this point everyone I work with knows the details of my ordeal with UC. At one point on Live TV the Council asked my Boss on my status while I was in the Hospital dying. And of course he gave them details and continues each month. Everyone has been supportive when I have came back to work between surgeries. So I am heading off to work with a supply bag and extra clothes. I guess my muscles down there... [ more ]
Holly M I have a handheld bidet I used at work. Gets area so much cleaner. I would just run the water to get it warm for the bidet then keep the water running for noise reduction (just in case), as everyone else says have wipes and other supplies with you at all times just in case. I have started using baby powder with pure cornstarch in it instead of the creams because it seems to keep the area dryer and sometimes the creams can stain your clothes (even if you have a liner on ). Hope these tips help. [ more ]
gleam Great advice, also pack a pair of underwear and some gas-x. You should be fine. [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Tissue Engineering
Epic ScotsmanEpic Scotsman
CTBarrister I am reading a book right now called "Next" by Michael Crichton. It's the last full book he wrote before he passed away in 2008. It's about the very issues discussed in this thread. Tissue engineering and transgenic experiments, including a transgenic chimpanzee (which are called humanzees) and a transgenic grey parrot. Like most of Crichton's books it is an interesting weave of science fact and fiction. Indeed, in true Crichton fashion the forward message to the book is: "This novel is... [ more ]
new2thisstuff Lou, It's interesting you say you got colitis after an accident. Same thing happened with me, three months after an auto accident (where the car flipped three times going about 60 mph on the hwy) i was diagnosed with UC. [ more ]
Laurie49 I believe some of us are born genetically predisposed to certain diseases. What happens in our lives in terms of diet, environment, physical activity, stress...etc., all contribute to what happens. Some with a predisposition will never suffer with it and others will. If autoimmune disease wasn't in our genetic make-up, we never would have had UC/Crohn's/Cancer/FAP regardless of car crashes, other illness's, parasites, etc. [ more ]
See all 79 replies...
J-Pouch ForumsGeneral Discussion
Vitamins
C Cate87
Cate87 Awesome. Thank you! Looks a little pricey but ill try it! [ more ]
kathy smith I think Forvia is the very best. It's specially formulated for people with IBD, celiac disease, or for people who've had surgery that may interfer with nutritional absorption. It comes in tablet or chewable form. kathy [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
cipro
Holly MHolly M
kangaroo woman Hi. I have had several pouchoscopies without sedation/anesthesia, and they are not bad at all. Nothing compared to a colonoscopy...there must not be as many nerve endings in your small intestine. You just feel a little bloated when they add some air to increase visualization. With that being said, I have had them with anesthesia as well, and the only time I didn't was when it was more of an emergency/on the spot necessity. [ more ]
TinCan I definitely agree with CT and Spooky regarding your desire/right to have sedation. It was not difficult in my case, but I wasn't exactly looking forward to it given the number of times I had been poked and prodded. I think we all reach a point where we just can't take it anymore, even if the pain is relatively minor. If you are at that point, then sedation is a reasonable option. By the way CT, I actually opted to have my last colonoscopy without sedation. One reason was simply for the... [ more ]
CTBarrister Spooky, I am glad you brought up this point. In my case it is essential that they go higher up in the ileum since I have inflammation in my ileum 30 cm above the pouch. Another reason why I choose sedation. The thing is that if Holly M has a good GI, he/she will take a "peek" above the pouch at the neoterminal ileum to see if anything is cooking up there, and if it is, there will then be a deeper penetration further up the neoterminal ileum. No way to know whether this will be happening in... [ more ]
See all 67 replies...
J-Pouch ForumsGeneral Discussion
Back to Cleveland Clinic Dr. Shen
CR CC Rocks
buttout I am going to see Dr. Shen in 3 weeks. This will be my 1st visit. What can I expect? [ more ]
Jeremy S I've had that problem and the best way I've handled it is to eat like you but in small portions throughout the day. Limit anti-diareheal and take stool softener when you can't go to bathroom. I take gas ex too. Lately I have been taking one or two lomotil, one or two loperamide, one or two gas x (green pill) and two to three stool softener before I put any food in my stomach and it seems to be working pretty good. I think the key has been not overloading my stomach at one time. I am a... [ more ]
wiggles i have the same lower left abdomen burn now and prior with uc as well. is your stool loose or formed? [ more ]
See all 3 replies...

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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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