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J-Pouch ForumsGeneral Discussion
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FM Former Member
skn69 Yes, pipefitter, Belladonna can make you a bit loopy and cause drowsiness in some people so take the first doses while at home or in a place where you do not need to drive... I am very interested in what the sphincter repair will be all about and what the new method is...please post on it as soon as you hear...there are quite a few people (including a few Aussies here) who would benefit from the surgery... Thanks for posting Sharon [ more ]
vanessavy I haven't heard anything but I have the BCIR so no sphincter here. Just wanted to comment I just spent a week in Cleveland and saw Shen. He tried to kill some nerves where I have had cluster of cysts grow and no other GI ever mentioned that to me. He is pretty awesome! Transferred my care there. [ more ]
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J-Pouch ForumsGeneral Discussion
Five Weeks out from Takedown...
S Srf1
Srf1 Two more days of surfing yesterday and again this morning! Mornings to mid afternoon have been nice, quiet times for me so far so no problems with needing to go while I've been out in the water. [ more ]
Onwisconsin If youre five weeks out and already able to go surfing and are able to do a physical activity that leaves you away from bathrooms you are already in really good shape. I'm two months out and still getting to that point, but I think I'm on track. [ more ]
Disneynut Wow, that reminded me of girls' weekend 2002 Surf Diva Camp in SoCal...I had such a hard time learning how to pop up. Takes a lot of core strength, so I'm impressed you could do it just 5 weeks take down. Incredible! So glad you're getting your life back! [ more ]
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J-Pouch ForumsGeneral Discussion
Not sure what to do next
A Allison
Spooky I agree that the duration seems far too short for pouchitis, or any bacterial infection for that matter. Typically, a prescription would be 10 days. You may also need a combination of cipro and flagyl. When I had my bout of pouchitis, I was prescribed both, and though I am not an expert, from what I've read, the combo of the 2 seems more the norm than the exception. Definitely call your doctor and request another round, and ask about adding the second antibiotic. Best of luck! [ more ]
Epic Scotsman 2 days of antibiotics isn't going to clear things up. I'd definitely go to your doctor and ask for an actual course of antibiotics. [ more ]
Jan Dollar Yeah, when I am on antibiotics for pouchitis symptoms, my doc prescribes a 10 day course, and can repeat another 10 days if necessary. One time, I had to take it about six weeks. Since you've had symptoms so long, you'd think you'd need a longer course. Often, symptoms do not necessarily coincide with the severity of the inflammation. You can have bacterial overgrowth without overt pouch inflammation, with the same symptoms. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Hollywood 48 hour diet
B Bethie
Bethie thank you all so much - it's not for me - it's someone else who claimed they heard this was good and I KNEW it was not!! Just wanted to make sure I was right...you never know. I did call her out on it and she is not doing it...thankfully [ more ]
mgmt10 This is the diet the stars use to drop weight so they can fit into their size 0 dress for the red carpet. I wouldn't do this with a j pouch. [ more ]
Jan Dollar So here is my concern about it: This is a diet designed for folks with a colon. While I doubt it is dangerous, you WILL have plenty of diarrhea, so I don't see why you'd want to subject yourself to it unless you were planning on being scoped or something. The "detox" claim is nonsense. The ingredients are pretty much just fruit juices, known to cause diarrhea if that is all you consume. There is zero protein in this stuff, all carbs for calories. What is the sense in that? [ more ]
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J-Pouch ForumsGeneral Discussion
Whey vs Milk
R Rocket
Spooky http://en.wikipedia.org/wiki/Quinoa Quinoa has been described as a grain alternative; technically it's not a grain. It is gluten free and supposedly very easy to digest. It's also very high in protein. When cooked properly, I would say it it has a texture similar to couscous. It has a slightly nutty taste. You can have it sweet or savoury. I like to add a little bit of cumin to mine, along with chopped tomatoes, but I've also added spinach, zucchini... the list goes on. It's good served cold... [ more ]
Rocket Spooky, Never even heard of quinoa. U will have to look that one up. Thank you. Suebear, Vega Power protein poweders I have seen in my Health Food Store. I know they come in different flavors. Thank you. Rocket [ more ]
suebear Another option you can try is Vega Power protein powders. They are vegan and you can purchase on Amazon for better pricing. Taste is very good for this type of product. Sue [ more ]
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J-Pouch ForumsGeneral Discussion
The More active the better!
AlexisAlexis
vanessavy The more your mind is free to think and stress about your illness, pain, etc. the more it just feeds the body and brain those signals. I try to force myself to get up and move. Sometimes I need a sliver of Norco to do so but it helps. Reason I didn't finish appealing my SSDI. I need to work and stay busy talking to people and feeling normal. [ more ]
Spooky So true! If I didn't go for 15 hours I might start worrying about a blockage. *LOL* [ more ]
Epic Scotsman I take immodium for now. I'll probably try to go off of it in the future. On the night in question, I did have to get back up about and hour later (guess I missed a bit). After that, I slept just fine. [ more ]
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J-Pouch ForumsGeneral Discussion
Pooping Schedule and RE-Training
fqfq
Laurie49 In the beginning, scheduling your poop is like trying to schedule a nursing baby. Fagetabotit. It takes up to a year for your pouch to grow to full capacity and holding it for as long as you can, helps that process (and strengthens muscles). I know in the beginning for me, I was running to the bathroom constantly because I didn't know what the exact feeling was when I had to go -- so any/every twitch had me in the bathroom. I was also obsessed with counting the number of times I went --... [ more ]
Rocket I agree. My pouch also has a mind of its own. I do try and hold it in as long as I can sometimes. That is one of of training your pouch. I eat a big lunch and small dinners most of the time. I still have not gotten into the habit of not eating later then I want. Work being so busy, I sometimes do not eat dinner until 8:00. Based on what I have read on this post, I try to make my dinner just soup. Rocket [ more ]
mgmt10 Also, you cannot deny the law of physics. A lot of food going in= a lot of poop coming out. Little food going in= less trips to the loo. Maybe try making your lunch the larger meal of the day and your dinner smaller. I have done this and it actually works but it's not always practical for me and my schedule plus I have a family to cook for. [ more ]
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J-Pouch ForumsGeneral Discussion
VSL #3DS problem
TE MarieTE Marie
TE Marie The young lady at Walgreens called and my VSL#3DS prescription will be there tomorrow and their supplier will carry it in the future. In one day it went from not going to carry it anymore to they will be. VSL's website that it is carried by Walmart, Kmart and HyVee so I was getting ready to call them, so I don't know if they carry it locally or not. Grandmaof1 - I checked their website and I could have ordered it directly, in the non prescription strength I could have used 2 a day to equal... [ more ]
grandmaof1 I thought you could order it directly from them. I would look into that. Just a thought. Thanks, [ more ]
Karbear I get mine at CVS. They order it direct from the makers of VSL#3DS. Is there anyway Walgreens can do this until your CVS is built? [ more ]
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J-Pouch ForumsGeneral Discussion
Bidet owners
RM Rowans mom
grandmaof1 I love my bidet!!! But my hubby doesn't. I don't have that brand you are buying. But my simple one is hooked to the toilet seat and my grandson has a seat that sits on top of the toilet seat. He doesn't use the bidet but I don't see why it wouldn't work. I would also call the company. A lot of bidets have moveable parts. Instead I just have to move my whole body to get everywhere I want. But let me tell you, I have it mastered. It is the best thing in the world. I try not to use the... [ more ]
Subzeromambo Call Coco and ask them. I do not like our bidet but they were extremely helpful and took a lot of time to answer my questions. [ more ]
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J-Pouch ForumsGeneral Discussion
Anti Depressants
N new2thisstuff
merrymommy I was just going to add. Abilify was originally approved for use primarily with a diagnosis of Schizophrenia. It acts as a Dopamine Antagonist I believe.) Dopamine receptor antagonists are used for some diseases such as Schizophrenia, Bipolar disorder, nausea and vomiting. It is classified as an Atypical Antipsychotic and has been associated with some blood sugar issues. Some patients have experienced a condition called DKA which is basically a sharp rise in blood sugar and if not treated in... [ more ]
merrymommy I did use Abilify effectively with Pristiq but after about a year...it became less and less effective. I never had any of the oddball side effects many have with Abilify...ie...the super intense dreams...lol Welbutrin is great because of the lack of sexual side effects...but made me kinda irritable and a cranky camper. lol I do not know for sure if your Dr could use Abilify to "boost" Lexapro. But if its been working therapeutically for awhile...and you are just experiencing some "break thru... [ more ]
new2thisstuff Cataja- which one was the most helpful in your case? Thanks [ more ]
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J-Pouch ForumsGeneral Discussion
Adult Diapers
runner4449runner4449
CeeeeCeeee So much easier to "strip" a waterproof pad from the bed and replace it with a dry one in the middle of the night than to have to change all the sheets and the mattress pad! At first I purchased some flannel backfed waterproof material from a fabric store and used it. Just like a baby's crib pad. [ more ]
runner4449 Thank you all for your responses! They help me know what I'm going to buy to have on hand if needed. Definitely going to protect the sheets and mattress to start though. Take good care! [ more ]
Spooky Though I never had leakage issues with the j-pouch, I had a more than a few nighttime leaks with my ileostomy. I bought a mattress pad and slip cover which was inexpensive and protects the mattress. Plus, it was easy just to pull off and throw in the wash as necessary. You can look into something like that if you are concerned. I never used diapers, but I did use Always long pantyliners after my surgery just in case. [ more ]
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J-Pouch ForumsGeneral Discussion
Metamucil clear (inulin) thoughts or experiences?
TheresaSTheresaS
Rowans mom So how is it going now that you have been using it a while? [ more ]
DJ H I just started with the inulin this week (Metamucil Clear) and so far so good. I really like that it just mixes in to something I was drinking already Vs having to make up a special mix with Citrucel or Benefiber. I can't handle the psyllium style Metamucil due to gas from it, so we shall see how it goes with this Metamucil Clear. Is anybody else having luck with it? Thanks. [ more ]
Guest Good? I don't see what's good about leaving your and Kathy Smith's hate attack posts up here? It's nothing but a black eye to this site [ more ]
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J-Pouch ForumsGeneral Discussion
Immune system
RM Randi M
Epic Scotsman From what I know, the colon doesn't have a whole lot to do with proper immune function. The small intestine plays a fairly significant role. If you're off all of the meds (especially biologics and immunosuppressants), then your immune system is going to be in much better shape than it was previously. [ more ]
skn69 Doc says that I am healthier than most of his 'normal' patients...I get sick about every other year and then it comes and goes quickly (but I do take a lot of suppliments). Sharon [ more ]
CTBarrister I never get sick. My immune system is ratched up 5 notches higher than what it needs to be. It still attacks the bacteria in my pouch when it shouldn't. The down side is pouchitis, but I never even get a flu shot as I don't get the flu and if I catch something it gets hammered out of my system pretty quick and I never even miss work because of it. I always thought most of us fall into this category. Biologics ratchet DOWN the immune system from its heightened state so as to stop the response... [ more ]
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J-Pouch ForumsGeneral Discussion
Patency Capsule - How long to go thru?
K kereen
Jan Dollar I've had mushrooms hang around a couple of days without problems, so I don't think there are any fast rules. I think your doc was pretty smart doing he patentcy capsule first. Hadn't even heard of it before, but sure makes sense! Jan [ more ]
kereen The patency capsule is a pre capsule endoscopy test. It's given to people when their doc is worried the camera might get stuck, so it's kind of a "test run." I felt nauseated last night but it cleared up, I assume because capsule began to dissolve. Was just wondering what is the norm for the capsule to hang out in our no-colon GI tracts. 24 hours is probably too long huh? [ more ]
CTBarrister When I was talking to my doctor I was told 6 hours on the capsule endoscopy but this info may be dated. This was in 2008 and at that time the size of the capsule frightened me and I refused the test due to a history of blockages. I hear they are smaller now. Is the patency capsule a capsule with a camera that dissolves? Why are you nauseous if it will dissolve or at least should have dissolved? [ more ]
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J-Pouch ForumsGeneral Discussion
Reporting medical mistakes
C cassiecass
cassiecass For me in NYS I am filing with the State and The Joint commission..Hospitals do not like you to know the Joint commission does respond to complaints. Too many complaints filed with the commission hospitals can not get accrediation. Your state dept of hospitals , your insurance company. You can file with the State licensing dept. You are correct the article does not guide us yet to the right area to complain but the above is a start Cassiecass [ more ]
Connie Where do you send a report now? I don't see any instructions anywhere? I can't imagine how many man hours it would take to screen thousands of complaints or how such an office or agency would function. [ more ]
cassiecass HI It is better to make a report.Keep your records.You never know when they will contact you.Always write down who you talk to date n time.They have to respond.I been told to write my story and send it to President Obama.His office I hear does respond. In a hospital you can ask to have an incident report made and request a copy for your records. We do have a voice.It needs to be heard. Cassiecass [ more ]
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J-Pouch ForumsGeneral Discussion
Dr. Kalady anyone?
Natisha1971Natisha1971
Natisha1971 Sorry to hear you had complications. Thank you for the information. We had that with our oldest daughter who had her first surgery in a different hospital and her pouch never healed so we took her to Cleveland and they fixed her up. At first we blamed the surgeons but we realized that our bodies heal differently and we are made so differently, and it just wasn't meant to be. We are thankful that she is doing pretty good now. Hope you are doing good now too. Thanks again for the info! [ more ]
Pouchomarx I did, he was highly recommended. I had many complications, but not sure if you can blame surgeon? [ more ]
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J-Pouch ForumsGeneral Discussion
Diarrhea?
Z Zee87
Jan Dollar Unless you are taking things to slow the gut, I would be a bit concerned you have a partial obstruction, unless what you mean by "complete opposite" is that you are not having any problems. If you are feeling constipated, then you need to address it, as your stools should not be firm or too solid without a colon. You could just be one of the lucky ones. Just make sure you are drinking enough fluids to keep things moving and eating enough food. Since you did not have IBD, you are probably... [ more ]
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J-Pouch ForumsGeneral Discussion
One or Two Step, two opinions
D Dutchy
JG I was in remission and had low grade dysplasia just about 1 year ago next week...whew time flies. Anyway, I went for the one step since I was in remission and only doing the surgery for cancer (or to prevent) purposes! I don't regret it at all and felt completely comfortable having it done since my surgeon is very experienced at doing one and two steps. Best of luck to you. I had no issues once I was out of the hospital (14 days for me)...but I had no leaks or infections or anything like that. [ more ]
CTBarrister Dutchy, I had the 2 step procedure and I agree with your reasoning, as well as the reasoning of JPouch 2001. Good luck and let us know how it goes. [ more ]
Blake D. I did a 3 step surgery because my surgeon told me there was a slightly less risk of becoming impotent with a 3 step than a 2 step. The 3 sureries were in a span of 9 months. If I had to do it over, I would've done it in 2 steps to save my body a surgery. Good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
Weight gain
Uc-DanielleUc-Danielle
ActiveUC'er I agree with comment above regarding olive oil'ed pastas, nuts, nut butters, etc. In addition, Odwalla makes protein/fruit shakes that are around 300 calories but only 12 ounces. They can generally be found in the refrigerated "health food" section and the ones I've tried so far taste pretty good. There are also "weight gainers" on body building sites. I'm pretty sure they are just high density protein/calorie mixes kind of like normal protein shakes. I can't say how they taste as I've never... [ more ]
Cdub You need to get into the habit of eating, eating a bit more, and then some more! You do get rather fed up of medics telling you to eat "little and often" but they're right. I went into hospital weighing 9 stone, and came out weighing only 6. And ever since my pouch, by weight fluctuates massively in the course of day. I imagine that's because as j-pouchers our output is much more liquid (and we're going more frequently), but I can easily gain/lose up to around 6 pounds in a day and feel just... [ more ]
liz11 Eat 5 meals a day, maybe even 6. I am not saying snack for meals 4,5,6. I am saying eat 5 proper meals a day. So for me, when I was clinically dramatically underweight my doctor had me have a meal at 8AM, 10:30AM, 1PM, 4PM, 7PM, and then in the middle of the night when you get up to use the toilet. Focus on protein with every meal. It must be the main ingredient of every of the 5-6 meals. Ask your doctor about a prescription supplement called Peptamen prebio. It tastes completely disgusting... [ more ]
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J-Pouch ForumsGeneral Discussion
Hair loss- post takedown
Uc-DanielleUc-Danielle
TE Marie LOL Sharon, good catch! My hair is growing back in. I've never had thyroid surgery so believe it is full grown by now. [ more ]
Onwisconsin Oh my! I had no idea this could even happen! I wish you the best of luck- not only have you had to go through so much, but now something you should be able to take for granted is being taken from you. [ more ]
skn69 tough, I hope that you meant that your hair is growing back and not your thyroid!!! Sharon ps...nice to know it is growing in and I honestly believe that you must be beautiful with your natural colour! Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
Anyone have a pouchoscopy for functional pouch issues?
J jeane
TE Marie jeane, It is just one thing or another. I am interested in what you find out with the natural path and/or functional medical doctor. I went to both years ago with my UC. I think I could have found a better natural path. She had me put a drop of blood on some kind of paper so she could send it off for analysis - didn't make sense at all so I only saw her 2 times. I went to what I called an alternative MD 2 states away. $2,000 later nothing helped. That was probably 10+ years ago. I'm glad... [ more ]
jeane Toughenough, Funny thing..my cuffitis has improved. No more bleeding and minor irritation at times and no more canasa for the most part. I actually found canasa burned when the cuff was flaring. I am very interested in having the pouchogram done and any other test to rule out any functional/structural issues with my pouch. From there, I may see a natural path doctor or a functional medicine doc as I am looking up some things on the internet that may hopefully help. I am wondering at this... [ more ]
TE Marie When I had my flex pouch scope at Mayo I didn't take any sleep/pain IV medication. The nurses assured me the doctor did colonoscopies like that and has the "touch". He went up 2 feet into my small intestines and examined and took biopsies from above as well as inside. He said it was the best j-pouch he's seen in 5 years. I almost said I bet you say that to all the pouches. He showed me the scaring from where it was constructed and it was just like a regular scar. He said it was a good size... [ more ]
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J-Pouch ForumsGeneral Discussion
improvements from month 6 to 1 year mark
N new2thisstuff
Cdub I saw different degrees of progress - it was probably a year until I was able to go through the night without having to get up, but probably in reality three or four years until I stopped leaking a little bit at night. It will get better, though, all the time, in small degrees. [ more ]
Disneynut I thought I wouldn't see any difference after 6 months and I did, a lot. I went from being happy with my pouch to being very happy with it. I still go around 6 times a day, but I am in and out of the bathroom much quicker. I remember kind of obsessing about going all the time and thinking I will always obsess about it and then one day I stopped thinking about it. I really don't know how many times I go a day anymore. I don't have any of the spasms anymore and I am one of the lucky ones who... [ more ]
Epic Scotsman This is another good case for the old adage of "everyone's different." I'm 6 months out right now and I consider anything over 3 or 4 trips to be an off day for me. I very rarely need to get up during the night. Usually the only time I end up using the bathroom at night is if something else wakes me up (like a certain 2 year old). [ more ]
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J-Pouch ForumsGeneral Discussion
Severe Diarrhea
FM Former Member
CTBarrister Lucy, I was going pretty frequently when I had the motility issue post takedown but it was mainly after eating meals and I don't think it was quite 30 times a day. The bathroom trips came in explosive bursts after eating meals. [ more ]
Former Member Thanks! I'll ask my doctor about that ASAP. Although I do tend to go all the time, it's definitely worse after meals. But we're you ever going as frequently as me? [ more ]
CTBarrister Anti-spasmodics are a class of drugs designed to slow down excessive motility of the bowels - examples are bentyl, levsin, and donnatal. They are taken 45 minutes before meals so that your bowels do not have excessive motility. It stops them from churning constantly. Frequently people throw anti-diarrheals at this problem with bad results. If you find you go a lot right after eating it could be a motility issue. I had this problem for about a year after takedown and then it chilled out. [ more ]
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J-Pouch ForumsGeneral Discussion
4.5 weeks post takedown update
U 1970UC
Onwisconsin very similar condition that I'm in nearly 2 months. Though I feel like I've improved a bit over the last few weeks. I was 8-12 at one month. Now I'm 6-10. Night-time hasnt improved too much though. was 4 at one month, now its 3-4. There is still the demoralizing day every so often that just doesn't go my way. Today was one of those days. I went to eat with my in-laws and they chose Famous Daves- a BBQ restaurant. Feel crappy when you can't get anything BBQ at a BBQ restaurant because it... [ more ]
Blake D. Hey Mark, You pretty much described what I'm going through at this point also. I think we had our takedown around the exact same time if I remember correctly. The gas pains where you have to clench your b-hole closed for 10-15 seconds, I know exactly what you're talking about. Those are the worst part of this J Pouch for me. They have much improved since week 1 and 2 though, so hopefully that will continue to get better. My sleep has been awful. I blame myself for part of this though. I'm... [ more ]
Jeff P. I'm about 8 weeks out and you did a very good job describing my symptoms, so if it helps, you're in good company. I suspect that any irritation comes from seepage - sounds better than leakage. Wipes and barrier cream seem to help. Also an occasional bath. Not getting a full night of sleep is the worst. I'm up at night too and feel tired because of it. Good luck on your recovery. [ more ]
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J-Pouch ForumsGeneral Discussion
Pouchoscopy 9/18
SpookySpooky
TE Marie I don't see why we should be scoped more often than we had colonoscopies. When I had problems, UC & diverticulitis, the scopes were more frequent. So I would think if all is ok we can go a few years with our pouches. I've had 3 this year so am planning on one next year because I've had problems. I know the Cleveland Clinic and the doctors are great but they are not the only word on the subject. I believe those of us that go to the Mayo Clinics and to other prominent surgeons and GIs are... [ more ]
Spooky Yes, I'm now being seen at Mt. Sinai. I am aware of the Shenite teaching, and I have discussed the frequency of scopes and my concern about cancer risk with both my GI at Mt. Sinai and my surgeon at North York General, and I will continue to ask on my follow up visits. I personally have no issue with having a scope every year, but so far I haven't seen a doctor who would be willing to do them that often; they just don't think it's necessary and in fact, have advised against it. So I can only... [ more ]
_Jeffrey_ Even though I had dyslplasia in my colon before it was removed I was told I only needed to be scoped every 3-5 years. Spooky I presume you are being seen at Mt. Sinai? [ more ]
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J-Pouch ForumsGeneral Discussion
Fevers go with what problem (s)
TE MarieTE Marie
Spooky While I was hospitalized during my severe UC flare, I spiked daily fevers (38-39 Celsius, which is about 100-102). I got my IV steriods in the morning, and the fevers would come on late afternoon and continue more or less until the next dose of steriods, when they would go down. I could reduce them with Tylenol in between steroid doses, but they never entirely went away. It was only when the colon came out that I stopped getting them. For me it was definitely indicative of severe... [ more ]
TE Marie Thank Jan, I am as it reminds me all the time I'm not pain free but am doing better since the C-Diff is gone and cuffitis is under control. I'm only taking half of the pain medication I was. Of course then the headaches rolled in..... [ more ]
Jan Dollar Unfortunately, negative labs can be misleading. Keep a close watch on that pain. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Bleeding with a j-pouch
B Brittnicole528
TE Marie If you have UC I'd suspect cuffitis and a GI or surgeon could diagnose this with a physical exam. I also have stinging inside when it's active. I'm sorry about your joint pain. Take Care [ more ]
Brittnicole528 To clarify the blood is a deep red tint and I don't have any stomached pains just in my joints thanks for the info [ more ]
mgmt10 Have you been seeing blood for a while? Your fatigue may indicate that you are anemic. Hope you get some answers at your appt. [ more ]
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J-Pouch ForumsGeneral Discussion
Butt Burn: What Works for Me at 1 Month Post Takedown
FM Former Member
Lew Questionman My wife suggested the vaseline to me several years ago and now it's all I ever use as it seems to do the job. Pretty cheap solution for what can be a miserable issue! Lew [ more ]
Former Member I think I will continue this posting with another update. I saw a Stanford dermotologist for my butt burn and had her do an exam. Her recommendation was to use only Vasoline or Aquaphore, and not things like Nystatin or powders like Gold Bond. She said, "Keep it simple, clean and dry and use LOTS of Vaseline or Aquaphore." What I can say is, despite diarrhea outbreaks because I either am not taking precautions--like a pre-emptive dose of immodium or not monitoring closely what I eat--I am... [ more ]
Former Member I want to give an update and say that a few things that my surgeon recommended have made my life incredibly better in just two days. First, she ordered lomotil for me, and I am taking that 4x a day, which has dramatically slowed down the number of bowel movements. She also prescribed a mixture of three ointmenst that I am now using that are already clearing up my skin irritation at the anal opening: lidocaine, nystatin (both prescriptions) and the over the counter desitin. I also am using... [ more ]
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J-Pouch ForumsGeneral Discussion
rectal cuff cancer
L lively752
Former Member ❤️
TE Marie It is never good to have a blockage but fortunately they discovered the clot before it could reek much havoc. [ more ]
lively752 Take down surgery went well. Was released after 3 days. Was doing fine for 1 week, then developed a blockage and went to hospital. It cleared after 3 days. The scan they performed while there, also revealed a clot in the portal vein to the liver. They say it occurs at least 20% of the time with this type of surgery. Have to be on coumadin for 3 months as a precaution until that resolves. I, got out this past Sunday. Luckily no surgical intervention. They seem to think it was caused by... [ more ]
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J-Pouch ForumsGeneral Discussion
Crohn's and genetic variants
n/an/a
Jan Dollar I would imagine the study focused on CD because there is more known about the genetic link for CD than UC, meaning, there is more data indicating a stronger genetic risk for CD than UC (twin studies and the like), plus known markers. UC is more nebulous in that regard. Jan [ more ]
n/a Also, my brother wasn't dx'd w/CD until he was in his late 40's, and he has a very serious case of it (from the esophagus on down). He was/is a smoker and tends to drink a little too much, so that didn't help matters, I'm sure. [ more ]
n/a According to this study, age contributes to the risk of IBD. Can't get the chart pasted in, but the number of adults in the U.S. with CD seems to flatten out around the age of 50-59; the number for UC continues to increase through 60-69 years old and older. [ more ]
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J-Pouch ForumsGeneral Discussion
Diet
CR CC Rocks
Jan Dollar Yes and no. Strictly speaking, insoluble fiber does not ferment or cause gas, because it is inert. But, many insoluble fiber containing foods, like some vegetables do contain gas producing components (think broccoli or cauliflower). So, you just have to experiment and figure out what your tolerances are. I have been avoiding a diet high in carbohydrates (which also avoids most foods high in soluble fiber) mostly because of my type 2 diabetes (same with my husband), and it seems to agree with... [ more ]
fq Interesting.... so then is INSOLUBLE fiber better compared to SOLUBLE for us? Does the same thing happen in our bodies if we eat INSOLUBLE FIBER? Does it also ferment in the colon/pouch? thanks! [ more ]
Epic Scotsman I'm up about 14 pounds from my low point earlier this year. I'd like to put on about 25 more, but I've got plenty of time for that. My diet plan pretty much consists of throwing different foods at my system until it knuckles under and does what I want it to. It's not always fun, but I think it will get me to where I want to be. [ more ]
See all 16 replies...
J-Pouch ForumsGeneral Discussion
J pouch removed rectum only
FM Former Member
Jan Dollar So, I presume you have a colonic j-pouch? Your function would be quite a bit different thanmost of us here, who had total proctocolectomy. But, there have been a few with the same surgery as you. They are not regular posters though. You should expect near normal function eventually, but could take up to a year. Jan [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
pre take down anal pressure?
G Guest
runner4449 I haven't passed mucus in a while, probably a couple of weeks, but when I have it passed easily. I'll be 14 weeks post second surgery tomorrow. I wish I could be of more help. Please keep us posted. Wishing you well. [ more ]
Guest thanks very much. are you saying you dont pass mucus or you do but its always easy? this has me a little creeped out now. i was hoping to hear someone chime in and say its normal for it to be difficult to pass mucus on occasion before takedown... [ more ]
Guest thanks very much. are you saying you dont pass mucus or you do but its always easy? this has me a little creeped out now. i was hoping to hear someone chime in and say its normal for it to be difficult to pass mucus on occasion before takedown... [ more ]
See all 18 replies...
J-Pouch ForumsGeneral Discussion
Cramps
O Onwisconsin
Blake D. Thanks Wisconsin, hope you can kick these cramps soon. Take care! [ more ]
Onwisconsin Well, It doesn't seem to matter whether its night or day. They come and go at any time they please. My doctor said to eat a little less whole wheat over the next few days and I had been drinking a lot of Gatorade and he said to go to water only because the sugar might be causing problems. I am going in on Monday to check if I have a stricture of any kind that may be causing the pain as well. I did have a stricture while I had my temp ostomy, so it may have reoccurred. To Blake: they seem to... [ more ]
TE Marie I'm 20 months post take down and have some advice for you all. The cramping where you stand or sit still for 10 seconds or whatever is normal for several months after take down. I found if I waited a bit after going to the loo and stood up and then sat down again more BM would come out. Your pouch is getting use to it's job and is trying to send the BM's right through like it did when it was a small intestine - that's how I look at it. Some say to hold it as long as possible to "train" your... [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Takedown question
FM Former Member
Epic Scotsman You should most definitely have to pass some mucus every now and then. The cells in the lining of your intestine are constantly churning out mucus to basically lubricate the tract. The excess mucus usually comes out with everything else, but since nothing is coming out right now it's just going to be mucus on its own. [ more ]
Blake D. I had the J Pouch in 3 steps, I wore the ostomy bag for 9 months and I had to pass mucous once a day or once every other day for the whole 9 months. Doctor told me it was nothing to worry about. I'm one month after takedown right now and I have been able to go out no problem. I wouldn't plan anything the first couple weeks though. I just too my son to an airshow last weekend where I was away from home for 8 hours, only went to the bathroom once this whole time. I avoided stuffing my face at... [ more ]
CC Rocks I had mucous after my second surgery J-Pouch formed, my surgeon told me this ahead of time so I knew it was a possibility I had it only about 2 times after my second told me it was normal to have mucous the pouch even though not functioning gives off mucous. But talk to your doctor, everyone is different. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
A note about decorum
Jan DollarJan Dollar
Rocket Well put Breezie. I also wish I had gotten my pouch sooner too but can't focus on would of should have either. Someone on this board had to do exactly what you described because their pouch did not work. He accepted it and moved on. This troll must enjoy being miserable. I wonder what his home life is like? Does he have any family or friends or has his poor attitude chased them away too? On one of my posts to Dog Day, I even stated that when I had Kidney Cancer, when I had to go for... [ more ]
Guest They're not "trolls" because they're between a rock and hard place. All the alternatives are way too freak for me and others. I'm just praying for the possibility of a Colon transplant, while I grin and bear it with my pouch [ more ]
Guest They're not "trolls" because they're between a rock and hard place. All the alternatives are way too freak for me and others. I'm just praying for the possibility of a Colon transplant, while I grin and bear it with my pouch [ more ]
See all 18 replies...
J-Pouch ForumsGeneral Discussion
surgery next week-nervous!!
FM Former Member
runner4449 I'm through the first two surgeries of the three step process myself. My 3rd step is scheduled for October. I can confirm what others have said here about living with UC being just awful. I can also confirm that it will get better. I feel loads better just being 2 steps into the process, and I say that even though the 2nd step has been a bit of bear...it seems anything is better than living with UC. However the great news is that the vast majority of people do very well with their pouches... [ more ]
SBS Njwhaley, it's a pleasure to meet you & your husband. The nerves are entirely understandable; it's major surgery that does have it's risks; as you've found from reading the posts in here. But don't let them deter you. Instead, let them inform you and arm you with questions to ask the surgeon and the confidence to ask them. As for me, my UC story is sadly similar to your husband's and others posted here; diagnosed a year out of college; fought it for 4 years with Prednisone (all that was... [ more ]
Rocket njwahley, Your husband's story is similar to mine. I went through all this many years ago. I had UC for 7 years from 1986 - 1993 and the flare ups increased each year. Any stress to my life would cause me great havoc on my body. Without fail, a few weeks before Christmas would cause major flare ups. I know all about those drugs and I hated Prednisone. I too got acne all over my back, head and face from it. I kept putting off the surgery myself due to my own fears. It got to a point where it... [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
Getting a second opinion.
L Laney
TE Marie I was thinking that too Jennifer. The Mayo Clinic in Rochester, MN is awesome too and they work as a team very well. I had an incisional hernia that was causing mechanical partial obstructions. MY C/R surgeon did the hernia repair surgery and he ended up opening my entire incision, again, as apposed to the one inch scar I was expecting. He didn't realize until he got in there is was so big. I think you are right about getting in to CC. I am partial as I love the Mayo Clinic. It is also just... [ more ]
JenniferG uh, dumb question here, wouldn't fixing the hernia maybe solve your staining problem?? [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Cheap Immodium
S seagull
JJA 350 for about $5.95 at Sam's Club (generic). I used to spend $60-80/month (I take 8 a day) and now I spend less than a dime a day!!! [ more ]
kathy smith 400 caplets from Costco - $7.59 (just under 2 cents per tablet). These are small caplets. The name brand imodium pills are huge. I can swallow 8 of the small loperimide without water. I have to do 1 at a time with the name brand if I'm taking them without fluids. kathy [ more ]
liz11 Even though its an over the counter med, you can get your doc to write a prescription and get it filled st the pharmacy. By far that was the most cost effective way for me, cheaper than anything i found mail order or costco and sams. [ more ]
See all 4 replies...

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Founder, Creative Director & Web Master

William J. Johnson
bjohnson@j-pouch.org

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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