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J-Pouch ForumsGeneral Discussion
traveling with tincure of opium?
U UjohnjC
not2norml not trying to hijack the thread but my g/f mixes tincture with grenadine and Coca-Cola and makes basically a shot out of it. as for travelling with meds overseas "Get a letter from your physician in case you are questioned about your carry-on medication; some countries have strict restrictions on bringing prescription or even non-prescription medications" travel.state.gov or contact the consulate general's office for the country you are travelling to. [ more ]
UjohnjC I just squirt it in my mouth and drink something right after [ more ]
ytcrockpot Hi, this has nothing to do with your question but it does have something to do with Tincture of Opium. I have a bottle of it and just cant figure out what to take it with. tastes like poison (I know the label says it is) Can you please tell me how you take yours? Thanks [ more ]
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J-Pouch ForumsHelp! Need advice now!
Leakage-Women HELP PLEASE.
A ancondry
Jan Dollar I think he is assuming you cannot tell the difference from poop that has splashed to your vagina and what is coming from it. You could get a vaginal infection, but it could also be a fistula, especially if you have air coming from the vagina. Jan [ more ]
ancondry He says its Backwash??? no sure what that means [ more ]
rachelraven Definitely call tomorrow, then. It truly sounds like a potential fistula. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Standing Urgency..
U UCBloke
Mysticobra Yep... I had the same problem.. A constant urge to go and little coming out when I tried. Antispasmodic may help you. I tried it and it worked. The urges stopped almost immediately.... Well the same day. Worth a try. Good luck. Richard. [ more ]
garry2808 I get the same problem and what I have read on this site is that I may need an antispasm drug [ more ]
GinLyn Yes, I understood that. Truly, besides dietary changes and/or medicinal help to thicken up your stool and perhaps time (not sure how far out you are from surgery...), kegels are the best help. Not vaginal, of course! If you go up to the "Information" heading, the drop-down menu has a link for kegel exercises; click there and you will find detailed directions for practicing these effectively. They really can make a tremendous difference with anal control. Good luck, Gin [ more ]
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J-Pouch ForumsGeneral Discussion
I have a jpouch for several years
MIKEEYMIKEEY
MIKEEY Thank you Sharon, will try it [ more ]
skn69 I might start out with vegetable juice...it is easy on the system, cannot block you up... Pick maybe carrot & beet or celery...just try a tablespoon or 2 the first day and see how it comes through. If you can borrow a juicer that would be great but if not you can buy all kinds of really good vegetable juices in whole foods stores or other similar places (there is a really good green fusion juice availible at walmart and other grocery stores, even costco) It is all a question of... [ more ]
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J-Pouch ForumsGeneral Discussion
Probiotics (Sharon)
G GraceB
TE Marie Dawn, Now I get it! I just couldn't imagine taking 15 Norcos daily [ more ]
dawnmarilynn Hi TE Marie- No, it was an allergic reaction to the 2 antibiotics he received at the hosp. We stopped them immediately and he is better. The 15 Norcos was the total number of pills in the script-not a daily dose! omg-no-today he had 2 pills---tomorrow it will be 1 pill.... Take care, Dawn [ more ]
TE Marie He might have had a small case of shingles. I paid to get vaccinated against shingles as my insurance company wouldn't pay for the shot until I was 60. Both of my parents had it and my PCP thought it was a good idea for me to get the shot sooner than later. There is pain with shingles so hopefully it was just something as innocent as he was allergic to your fabric softener or something like that. I'm glad your husband is doing so well. Was I reading the meaning right - he was taking 15... [ more ]
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J-Pouch ForumsGeneral Discussion
Fear of problems after takedown
BranchyBranchy
CTBarrister Yes, it sounds like dehyrdation issues. Unfortunately a lot of people either don't get or underestimate the need to be very careful with hydration hygiene and, as a result, their bodies suffer. Once the colon comes out the entire hydration ballgame changes, and you have to adapt or else feel sick and fatigued a lot. That is really the bottom line. Even after you are "out of the woods" and your body has somewhat adapted to the J Pouch, you will still be prone to dehydration if you get sick or... [ more ]
Shainy It's important to keep hydrated in the first few months after each surgery. Sounds like you are dehydrated often. I would regularly make a home made electrolyte drink on the doctors advice. The one I used was the St marks electrolyte mix. As for post takedown I had a very horrible first month and then things just got better over time. 3 months post takedown and I am now feeling great [ more ]
Branchy Thank you all for your replies. I just hope everything will go well and after 2nd surgery I will have as little complications as possible. I already bought cream for butt burn,probiotics, cotton towels,toilet paper without any additives. I prepared myself for sleeples nights and lots of inputs during day and night. Becouse I already have constant nausia that is not a problem....And oh yeah I almost forgot... I found very easy way to get rid of nausea. When it starts I drink few sips of tea... [ more ]
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J-Pouch ForumsGeneral Discussion
Just prescribed Levsin, anyone used it before? whats it for?
dgtracydgtracy
dgtracy thanks jan & mystic. it seems to work pretty good. im not where i was in the beginning when things were so nice but perhaps more time it will get there? we shall see. [ more ]
Jan Dollar The combination of Levsin and Elavil is common for IBS and IPS. Helps with the pain and crampiness. It does not do anything for gas, but can help you be less aware of it. Studies show that those with IBS do not actually have more gas, but that they are more sensitive to the movement of the gut and the pressure of the gas. Tricyclic antidepressants help with that issue and the Levsin relaxes the gut. Jan [ more ]
Mysticobra I take it to stop the urges to go. Spasms. And I was having urges almost constantly all day. I don't have the urges now which is great. Works quite well although I only take it once a day instead of three. I take it just before my biggest meal of the day. And it works. Make sure you do take it before the meal. As for going right after you eat. I do that all the time now. Some times it takes a bit longer than others. But I am guaranteed a bm after a meal. I figure it is a norm for me....one... [ more ]
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J-Pouch ForumsK-Pouch Korner
Oatmeal
vanessavyvanessavy
MIKEEY Sharon-Thanks so much for your reply, I certainly agree with your Uncle, and also agree things can be a lot worse. Blessings to you. Michael [ more ]
skn69 I tend to think that I have mastered the k pouch eating formula until my pouch proves me wrong (again and again!)...what works on Monday can react totally differently the next day. As my uncle says (a j poucher), It's not what your eating but what is eating you that matters. Sharon [ more ]
BillV Sharon, it seems that everyone’s system reacts differently in how it processes the food we eat. I love oatmeal and have a large bowl of it each morning along with cantaloupe or grapefruit and several cups of coffee and it passes through my BCIR very easily. Some other foods like mashed potatoes and pasta thicken things up a lot for me, so I avoid them or eat small amounts along with extra fluids. I like to believe that I control my BCIR and not let it control me. Bill [ more ]
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J-Pouch ForumsOstomy & Skin
Does anyone here use ostomy wraps? need help
dgtracydgtracy
thumprhare My ostomy secret belt felt tight Initially then stretched just a smidge. And no issue with pancake-ing or preventing flow. [ more ]
Sean NY The rings flatten out as they are stretched into the shape to fit around the stoma. They are about half as thick compared to before flattening and do not really cause the wafer to stick out very much. I'm using them because my nurse feels they last longer than paste with an ileostomy, but dgtracy, your number of days before a change is really good. I change every 3 days. [ more ]
dgtracy Sean, i second hollister. it has been my setup from the start, i consider myself extremely lucky having found it earlier. on average im getting 6 days, if theres any issues then i change it day 5. my setup is: stoma powder if needed (i check for redness) barrier wipe Colopast or Adapt paste on flange dry for 1 minute push on hollister flange put on hollister bag and hold palm for 5 min its worked so awesome. i have looked at the rings but theyre so thick i think it would feel awkward if i... [ more ]
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J-Pouch ForumsGeneral Discussion
3 weeks post op -heavy leg pain
C Cornwalldream
Jan Dollar I was thinking the same thing as Scott. You need to call your surgeon or primary and be examined. And yes, I did have a deep vein thrombosis that did not become evident until after discharge. I wound up on heparin for a few weeks and warfarin for six months. Jan [ more ]
Scott F I don't know how long you spent in the hospital, but I suppose it's possible you developed a blood clot in your leg (deep vein thrombosis). I'd suggest contacting your surgeon's office to find out if they want you to come in (or go to the emergency department, since it's the weekend). [ more ]
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J-Pouch ForumsGeneral Discussion
pouch re-do w/ Vikram Bommini Reddy
J jeane
TE Marie Good Luck to both of you! I've been with you all the way jeane as my take down was just a few months before yours. I don't know about any of the doctor's you've been to see but think someone with Yale must be top drawer. I think you are doing the right thing by consulting with several surgeons. I hope you are recuperating well KNKLHEAD. [ more ]
jeane Thank you. Best wishes for a successful re-do for you. I know you have had struggles also. Here is to a better jpouch future!!!! [ more ]
aka KNKLHEAD Hi, Jeane. Best wished! I just had step one of two redo. Here's fingers crossed for both of us! Hope you get a replay re: Dr. Reddy. [ more ]
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J-Pouch ForumsGeneral Discussion
Surgery May 21st
lMluttlMlutt
TE Marie I was like you and ready for the operation. I went into the operating room with a big smile on my face. When I woke up I was no longer smiling. I don't know if you've ever had surgery before but I had. I'd had a hysterectomy years before this surgery and the recovery was really fast......this is a lot more of a major surgery than that one. thumprha is right when saying you should use the pain pump as often as you feel the pain starting back up. It makes it easier for you to walk and they... [ more ]
thumprhare Try to get a pain pump. Walk even if it a few steps as soon as you can...and it may suck a lot. Kick people out so you can rest if you need to. Two or three step? Hang around on this group if you need to, you will learn a lot and it is our one given commonality. It's ok to be scared....Walk through it and you will see light at the end of the tunnel. Good luck. [ more ]
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J-Pouch ForumsGeneral Discussion
Liver Enzymes
J judyk
JeffDC Judy, sorry for the late response. The pouch was twitchy for about a year. I had several dilations to relieve strictures, the number of poops was still high, but at least I could control it, unlike the UC diarrhea, up two to three times night to poop..... It took a while to my body and the pouch to get used to each other. I am satisfied with it now, and am glad I had it done. I hope your recovered from your reversal now, and that your body and pouch get along well. The PSC is a roller... [ more ]
techwrench I've had PSC since '99. The way I was diagnosed was with an ERCP. An upper endoscopy where a tracer dye is injected into the biliary tree through a catheter. There was evidence"beading" in the biliary tree,and thus began the journey. You are so right about the disease that just keeps on giving. PSC partner's is a great resource for information on the web. I have labs every three months,and the main enzymes we watch is Biliruben,and Alk. phos. These are indicators of how "gunked" up the... [ more ]
judyk Hello Jeff, How has the jpouch worked out for you? I am scheduled for my ileostomy reversal on Tuesday, the 31st. What has your experience with PSC been like? Appreciate your insight. Judy [ more ]
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J-Pouch ForumsGeneral Discussion
JPouch
tftf
thumprhare For me it took about four weeks of PT to get them to work on it, plus I got exercises to do. Now I do the exercises -- not labor intensive. ;-P I really hope that helps, because I really think pelvic floor dysfunction after all the trauma our bodies go through is often just not the top of the differential because it isn't 'life threatening' if that makes sense. [ more ]
tf Thanks for the input. I will check into this with my dr. [ more ]
thumprhare Look into a pelvic floor trained physical therapist. You may have increased tone in your pelvic floor which contributes to the rectal pain. I had rectal and abdominal pain, which both strangely resolved after dealing with my pelvic floor. I say it's worth a good try versus going under the knife again. Get a referral by your doc...if not specialist then PCP. [ more ]
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J-Pouch ForumsGeneral Discussion
day 3 after dilation, still feel like incomplete emptying
dgtracydgtracy
dgtracy i may end up doing the water enema over the weekend. i have a business trip on Monday and would be great to not feel bloated while there for 3 days. i may start some cipro & flagyl saturday if my surgeon gets back to me tomorrow. The mucosectomy didnt bother me to bad after the procedure. i thought there would be more pain but since i didnt notice much of a change i think my problems were mostly because my small intestines had "fallen" and were in a pile wrapped around the j pouch. one... [ more ]
TE Marie I eat a lot of fruit that is emulsified in my super blenders when making fruit/veggie PlantFusion Protein smoothies. So I am getting plenty of fiber or ruffage - whatever. So I haven't used generic Metamucil in a long time. My j-pouch is over 4 years old, without the difficulties you've had. I envy your mucosectomy. Not the having operations and temp ileo part but would love to get my cuff worked over so I could get rid my chronic cuffitis..My GI at Mayo's had an appointment arranged with a... [ more ]
dgtracy It does help thank you. I'm still not noticing a difference with the additional fiber from citrucel so maybe tomorrow I will try an enema. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Proctoscopy after total colectomy
B Brad9481
rachelraven My surgeon and GI basically make me NPO (nothing to eat or drink) at midnight. However, I, to be "safe" for good, clear photos take a half dose of MOM at night (15mls), and then before the test do one or two tap water enemas (I empty a Fleets and fill with warm water from the tap). That seems to be plenty, and I've always had no issues with doing things this way. [ more ]
Jan Dollar I agree, periodic scoping is routine, so don't worry about that. However, an enema the night before will do absolutely nothing as a prep. Like spitting in the ocean. Even a few hours before is worthless. My doc just has me do tap water enemas until clear before I leave the house. Not sure why your surgeon told you to never have an enema again. Seems rather extreme to me. Jan [ more ]
jeane It is routine to check a pouch (pouchoscopy) annually with biopsies if dysplasia were found in your colectomy pathology report or you had surgery due to this. Four stools a day does not sound like pouchitis to me, especially if you are not experiencing other symptoms (cramps often in waves, urgency, increased frequency, anal burning, night time leakage, sweats, fatigue). You usually know when you have pouchitis, but people can have some inflammation (very common in pouches) and be... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Butt cream
U UjohnjC
patfos Recticare lidocaine 5% I can only find it at Walgreen for about 30.00 Now it does burn but does numb Hope that helps [ more ]
katenet I love this cream and it comes in travel size packets for travel. I have tried everything and this numbs the area really nicely. http://www.amazon.com/Water-Je...words=water+burn+jel [ more ]
Jan Dollar You can try numbing hemorrhoid creams. Jan [ more ]
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J-Pouch ForumsK-Pouch Korner
Docs in Florida
Rosie128Rosie128
Rosie128 I would love to Bill. Thanks for thinking of me. Unfortunately is too last minute though as I have 3 small kids and Orlando is almost 4 hours away from me. But I will check out the website in case he does another one in the future. I would probably be able to go if I planned in advance. Thanks though! [ more ]
BillV Rosie, here is another thought since you are in Florida. Dr. Rhenke will be hosting a free BCIR seminar this coming Sunday, May 17 in the Orlando. I attended the one in Chicago last summer as a BCIR “alumni” and found it to be very informative. This would be a great opportunity to meet Dr. Rehnke and personally ask him any questions you might have. Seminar information is available on www.bcir.org . [ more ]
Rosie128 Thank you Bill and Vanessa! I will look into making contact (hopefully this week, if my schedule allows! LOL) I will also look into the group. Sounds like something that I might enjoy being a part of! [ more ]
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J-Pouch ForumsGeneral Discussion
Stitches Post Takedown
C Chevygirl88
thumprhare Don't worry about the bleeding....like weirdly unlikely given the level of the sutures (ie above fascial layers etc). I am glad you got them out. I went in for 4 weeks follow up yesterday and my surgeon just snipped them and removed. Both were supposed to be absorbable, but apparently, my body had different ideas. Chevygirl -- I too, feel sooooooo, much better with them being gone. [ more ]
Chevygirl88 So this morning I womaned up and tugged on my stitches and they started coming out. So I kept pulling until I had some resistance. Snipped em off and much better! So thank you!! But I have anxiety so now I'm paranoid I'm bleeding internally. Lmao [ more ]
Chevygirl88 So they came completely out? Like, you pulled them from your skin and threw them away? Just making sure I understand lol. My hole was left open. It wasn't stitched closed. As it started to heal, the stitches started working their way out. I figured by now my skin would've healed over them. It's just irritating bc my pants gets caught on them constantly. It's hard to wear jeans right now. And sometimes they just kinda hurt bc they're trying to poke through the skin that's already healed over. [ more ]
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J-Pouch ForumsGeneral Discussion
Hypothyroidism and j-pouches...
TE MarieTE Marie
TE Marie I don't know what testing will be done by the endocrinologist. Because they are probably just testing for TSH most of the time it is clear they need to do more. My PCP ordered more thyroid tests in February but I don't know which ones they were. The results for those were normal but the one they always test wasn't. The range should be .3 - 4.2 and the preferred is 2.5. I had 19.8 at Mayo but was having a pouchoscope and took the medication with a sip of water before the fasting blood tests. [ more ]
dew TE Marie what test exactly are you talking about? I bet it's not a T3 test. [ more ]
Scott F Radioactive iodine (also used for some thyroid cancers) can lead to hypothyroidism, which then needs to be treated. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Need answers please!
L La-Te-Da
stellababy I also was on this site and it scared me so bad I put off having a j-pouch for 2yrs DON'T put it off I have my moments of a burning butt sometimes because of loose stools but it has been so worth it in the end Sometimes when you read all the bad its scary but it will be ok promise. Originally Posted by La-Te-Da: I had an emergency coltectomy in January of this year. I have severe UC. THey left my rectum and sigmoid, which they are going to remove. I am scheduled to have the J-Pouch surgery... [ more ]
Jan Dollar Yes, uncommon, but it definitely happens. Mostly, the mesenteric reach issue is in men, who tend to have a deeper, more narrow pelvis. You stretch that mesentery too much, and ischemic complications can ensue. Ischemia= compromised blood supply, bad news for any living tissue, and can lead to a failed pouch. Jan [ more ]
Jeffsmom Jan, this is Jeffrey's problem. And he has a shorter than average small intestine. But the mesentery doesn't stretch real far either. If God forbid he needs a redo on his pouch, it won't be possible. So this one better work properly when he has his take down! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Watery diarrhea and a day in the ER
L lhh65
lhh65 Thank you for the replies. I tested negative for C.Diff. in ER, though only one sample is usually not reliable for that. GI doc yesterday not sure what's going on, and has ordered some stool tests for various things. Also, ER had started me on antibiotic Macrobid because they found infection in urine, though that's likely because of the severe diarrhea. Anyway, today has been a bit better, so maybe antibiotic is helping guts, too, and hopefully we are headed in the right direction.... [ more ]
Scott F If it persists, I'd suggest considering (and testing for) C diff. [ more ]
CeeeeCeeee I have been experiencing the same watery.....very watery......diarrhea you have. Saw my surgeon who ordered a pouchoscopy. I had it yesterday. He took several biopsies and so I'm waiting to see if it reveals anything. My symptoms are not those of pouchitis. He did see mild inflammation during the scope but that shouldn't be causing such drastic changes. A couple of weeks ago he did tell me to add Citrucel to my daily regimen. It seems to make a slight difference. My J-pouch is over 10 years... [ more ]
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J-Pouch ForumsK-Pouch Korner
Nervous!!
vanessavyvanessavy
Rosie128 Praying for you Vanessavy! Really hope things get better ASAP. [ more ]
skn69 Any results back yet? Sharon [ more ]
vanessavy Adhesions don't show up actually on scans. Really rare if they do. Mine are most likely 6 desmoid tumors. Had laproscopic biopsies done yesterday. Never had lapro surgery since my BCIR. Nightmare. Can't get the pain under control and it is horrible. Almost as bad as my procto. [ more ]
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J-Pouch ForumsHelp! Need advice now!
burning and itching
G gotguts
UjohnjC I am 10 week out I tried almost every cream found 1 that worked for me sensi care its a convatec product I was same way at 5-6 weeks burn and itching have gotten better [ more ]
golflady1119 Sitz baths help alot in the beginning. Also, I got a bidet sprayer attachment for the toilet (HomeDepot...$35...easily installed!). I found that early on the creams didn't work too well for me so I switched to using corn starch powder and it did the trick. I'm now at 15 weeks post-takedown and am able to just use a little A & D after each bathroom trip and I have very little burning or itching (only have it now if I eat something that causes looser stools). It will get better...7 weeks... [ more ]
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J-Pouch ForumsGeneral Discussion
Bump in the road - gall bladder ... ATTACK!
aka KNKLHEADaka KNKLHEAD
aka KNKLHEAD Originally Posted by skn69: I've had GB problems my whole life, even pre-pouch but 3 yrs ago it reached the absolute limit and my surgeon removed it laporoscpically...found a huge stone (over an inch) and a 1 kg GB which was at the point of rupture...I should never have waited that long! Don't know what it was doing to my pouch beforehand but since then I am much better...The 'heart-attack' feeling in mostly gone...get the occasional pains, sharp or dull and some sub scapular pain but mostly... [ more ]
aka KNKLHEAD I have chest pain, pinches in my upper right side, light headedness, dizzy spells and nausea. From what I have researched, I still think it is my GB. Should I call my PCP about the functioning test or just wait to see if goes away? What would you do? Donna, I'm sorry, I can't advise you. I think there is a hydascan (?) test or something to prove your GB is okay, but it really could be lots of stuff. Example, my wife had pneumonia that caused pain, light-headedness and dizziness, etc. I think... [ more ]
JeffDC Kinkl, I also have PSC and am 8+ years post colectomy. My PSC likely started after the colectomy, since I have read in my doctors notes that an MRI in 2006 showed no problems with the liver. Assuming the films were read right! That said, I have had issues with PSC, but have not sensed any issues that the PSC has brought to the jpouch. Jeff [ more ]
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J-Pouch ForumsPouchitis
Best UK hospital specalising in J pouches
F Fazz
Fazz Thanks, Going to get a referral to see Prof Sue Clark. Hope it goes well [ more ]
jm St. Marks at Northwick Park are the most experienced in looking after problem pouches. Your first port of call there, with something like pouchitis or cuffitis, will be with one of the specialist pouch nurses (they have 3 now). You can contact the pouch nursing team direct via e-mail on nwlh-tr.internalpouchcare@nhs.net . You could also contact IA ( info@iasupport.org ) who can give you local support from others in a similar position - Zarah Perry-Woodford, one of the specialist nurses at... [ more ]
winter wish I also had my surgery under Prof Nicholls and Prof Tekkis. Definitely recommend Prof Tekkis. [ more ]
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J-Pouch ForumsGeneral Discussion
water
Paul HPaul H
skn69 My bad....sorry [ more ]
Jan Dollar Sea salt, not sea water. Jan [ more ]
skn69 Unrefined seawater? Not sure what that means exactly...it would need to be sterilized more than just filtered. There are a lot of different chemicals and other toxins in seawater...so I would be very careful. Our guts a very fragile and need babying so just make sure that you are not adding unknown bacteria or other nasties to your guts. I would also have my drinking water tested regulary (there are very cheap strip tests that you can buy in the pharmacy or order online...Worth the... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Does anyone take Belladonna/Opium
FrancesFrances
Bill A Hi Frances I take morphine sulphate oral liquid I have been taking for 1 year. How often do you take suppository? Does it help on spasms? [ more ]
Chrissey86 Hi Frances, I take the belladona opium suppositories. Aside from the fact that they are hard to come by, they work wonders for me! I don't know what I would do without them. I've been taking them for a year now because of terrible rectal spasms. Did you make an appointment with Dr. Bo Shen? He is amazing when it comes to pouches. I hope you start to feel better, and I hope these work for you! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Stomach cramps
GS George Shaikh
George Shaikh Thanks for that info. I am seeing my GP tomorrow morning and maybe he can give me something else for pouchitis. I am already drinking a lot of water and take the psylium stuff every day. I will start taking some pouchitis meds again and be aggressive with the constipation because the cramps have taken over my life. Thanks again, George. [ more ]
Scott F You might be able to prevent the constipation side effect if you're aggressive about anticipating it. Substantially increasing your water consumption might help, or some recommend white grape juice. Stopping any bowel slowers (Imodium or Lomotil) is important. Adding psyllium might even help, though it will also bulk up the stool. Also, there are a number of other pouchitis meds that might be easier for you to tolerate. [ more ]
George Shaikh Thanks for reply. I did not include in my first post, to keep it short, that I get pouchitis off and on. Definitely have it now because of scope check and cat scan [although my G.I. says cat scan can't show it]. The problem with treating pouchitis with me is that both Flagyl and Cipro give me constipation. I have even tried half a cipro pill a day and it makes things worse. Of course I want less bowel movements but with the constipation, I get less out each time and that makes me go for a BM... [ more ]
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J-Pouch ForumsGeneral Discussion
Question about abdominal pain?
A Andreathmpsn
George Shaikh I find chewing and swallowing two cloves helps with nausea. For me they do a better job then nausea medication. [ more ]
Jan Dollar Could be an obstruction, symptoms sure fit. But could also be pouchitis. I used to think abdominal pain that was not low pelvic was not likely to be pouchitis. But, after nesrly 20 years with my pouch, I proved myself wrong. I thought for sure I was obstructed or had gallbladder/liver problems, but labs were good and the pain would come and go, not associated with eating. Had a scope and sure enough, a serious case of pouchitis. A couple of weeks of Flagyl set me straight. Now, with a... [ more ]
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J-Pouch ForumsGeneral Discussion
just had 2nd takedown
dgtracydgtracy
dgtracy I used to work in health insurance and far back as i can remember the lengh it takes to fill out forms should not matter. if your having a procedure no matter if its outpatient or inpatient it depends on the time you are in. if its 24 hours or less its outpatient. anything above 24 hours is inpatient. aside from the fact the dilation only took 45 minutes and i met my deductible in that short frame of time. unfortunately im positive theres not much i can in this scenario. on the plus side... [ more ]
Jeffsmom Oh, I also have severe asthma, so helps my case. I'm sure they can come up with something as to why they had you stay. Dianne [ more ]
Jeffsmom Dgtracy. Here is how it's done. They write up the reports that you were initially supposed to be outpatient. The survery was long, too late to send you home and the doctor decided to keep you overnight or for however long is was. I've had this happen to me several times. I had a sinus surgery that was five hours. It was scheduled for 1 p.m. When I went in that day, checked in sort of thing, I asked the lady if the ins. Company really thought this is a out patient procedure. She said yes, but... [ more ]
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J-Pouch ForumsPouchitis
Severe anal/rectal pain as a result of Pouchitis
MM Mike March
ScottishRose I had 2nd and 3rd degree burns but the pain of my current bout of pouchitis / cuffitis is right up there with the pain level of 10. Cipro was working, but no longer. I had been gluten free due to hidradenitis suppurativa for the past 5 years, but that is when my UC developed. I'm completely lost. For the most part I eat healthy - no processed - AND I'm on VSL 3 DS, twice a day. Has anyone tried the SCD diet that ppl with Crohn's swear by? [ more ]
Mike March I did really well without antibiotics, addedvsl3, and strick Paleo from three weeks after I started (Feb 10) up until April 1st. I felt great until I sabotaged the diet. Talk later [ more ]
Mike March Hi. Lots of developments and just had follow-up late last week. I will write more, tonight or tomorrow. Quickly: one must stay strict Paleo and stop antibiotics. I was doing great. Vacation to Italy threw the diet and my pouch off. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
travel size neutral air freshener?
I iHateColitis
skn69 Essential oils work wonders...1little flask can last years...litterally. Pepermint works well (smells very sweet and people think that you were sucking on a mint and not spraying away smell) but you can use musk, rose etc...just put a drop on a tissue or piece of tp...it will keep the air fresh for hours...put a drop on a hand towel when you walk in...or get a purse-size empty perfume spray bottle and mix it with water or alcohol to make your own spray. Sharon [ more ]
marz Correction--Just A drop--amazon. [ more ]
marz Just one drop--amazon. put drops in toilet after. They come is small travel sizes. [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
3 weeks out post take down today
thumprharethumprhare
thumprhare Thanks for the input. As far as jobs....I am moving and looking for a new one as we speak and part of me says lay it all out there but I wonder if it's their business and legal or not, could prevent hiring. Thoughts? A colleague of mine said get yourself healed before searching but I have righteous student loans and three kids to take care of. On the food front, I have been bland but I have found that I really do have to drink water every 2 hours which keeps my consistency more 'consistent'. [ more ]
rachelraven I never ever used psyllium or Imodium or things like that (guess I'm lucky on that front), but I remember definitely taking it slow on the food front, once I was reconnected. I remember them saying if Metamucil didn't work, try Citrucel, but again, I didn't need it. And I cut off all pain meds before I left the hospital. I stuck with "thickening" foods, like potatoes, and bread, etc. and slowly added things to the mix. I had my takedown in mid-May, and was back to a full time semester that... [ more ]
Scott F I use the psyllium before breakfast and dinner. I found it helpful during early recovery to slowly try to increase my pouch capacity. This was described as "stretching" the pouch, though I don't know if that's literally what happens. Once you're well healed you will most likely have no urgency, and be able to put off using the toilet for quite a while, within reason. I generally use the toilet once or twice during the workday when I work at an office (beginning of day, end of day,... [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Muscle pain
SH shawne h
Jan Dollar You can get IBD related arthritis years, even decades, after colectomy. Pouch inflammation can make it worse, but if you have spondylitis related to IBD, it can have a course independent from your IBD. For me, it all began with persistent plantar fasciitis and Achilles tendinitis. Later came the sacroiliitis and my diagnosis of enteropathic arthritis. Jan [ more ]
cbinks Trying to understand these posts. Is there a correlation with j-pouches and inflammation in feet/ankles? Just wondered since I've had huge problems with my feet for a few years, but never thought about this being connected with the pouch issues. I had my colonectomy in 92 after 3 yrs of severe UC, and take down a year later in 93. I have done remarkably well, pouch-wise, but have had other issues with inflammation. [ more ]
Jeffsmom Sounds like me! It turned out to be my feet, ankles, threw out the hip, which threw out my lower back. I now am blessed with 5 bulging disks and 2 pinched nerves. Find a good foot doctor and then a sports medicine doctor for your back! And good luck! [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Fistula... May be crohns??
GN Gentle Now
Pouchitis is painful! I had a fistula 5 years ago. Had surgery to remove it. Never had any problems with the fistula since. I've had a batch of scans and cameras twice since and have not got crohns. [ more ]
Jeffsmom Hi! My son had his take down in September of 2014. We are not sure exactly when, but sometime between then and Noember developed a huge fungal abscess and fistulia. We know that the fistulia was connected to the pouch and that explained the abscess. But like I said, it was fungal. In December they put in a drain in his back to drain the abscess. In January they found the fistulia and immediately but him on light bowel rest. No food, just clear liquids by mouth and put him on TPN. Introvenus... [ more ]
mgmt10 I'm no doctor but since your surgery is so recent I'm more inclined to think the fistula is a result from the surgery. Although I can't speak of the ulcers that were found. I had a fistula that resulted in a huge abscess after my first surgery. I was very fortunate that it healed quickly (within three months) and I was able to have my takedown surgery. I suppose time will tell for you....best wishes. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Ginger Root
MeganMegan
Megan Thanks guys!!! I might have to start taking ginger periodically and see how it goes!!! [ more ]
skn69 I take ginger tea for nausea, eat candied ginger when feeling 'blah' and it seems to help my pouch to digest fats and other difficult foods. I also love the taste. Warning...it 'un-constipates' things so good for blockages but bad for a fast pouch. Sharon [ more ]
GinLyn I don't specifically take ginger for anything, but I do love the taste so I use it a lot with cooking. However, ginger is known to help settle stomachs, calm nausea, and aid in general stomach/gut health. (Think ginger ale when you have a tummy bug, etc.) So I guess it makes sense it could help with reflux. I can tell you that here in the Netherlands ginger is use A LOT for general stomach health. A common breakfast food is "ontbijtkoek" (literally, breakfast cake), which is like banana... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Opium Tincture Changed my Life
Sonoma-ErinSonoma-Erin
Sonoma-Erin Great to see all the suggestions. I have not tried the marijuana products but that is something to consider discussing with my doctor. My primary concern is the potency and dosage. With the opium tincture I can be really precise in limiting my dose to the exact amount that I need and after the initial first month I never feel high or spacy or anything like that. I work a very focused and intense job and cannot be out of it. It wears off every four hours so I can take just the minimum needed... [ more ]
Mysticobra It's ridiculous that some people still hold on the thought of evil weed when alcohol kills way more people than weed has in its whole history. There are so many uses for cannabis it's unreal. It's just flat out stupid to keep it illegal. Keeping old laws that are so outdated in this day and age... is hurting the people that need it. But the fools that surcumvent just to abuse it keeps it that way. They prescribe so many other drugs that are way worse than this. I will never understand what... [ more ]
TE Marie Thanks Gentle Now, I live in a state that's only approved the oil type of marijuana for children with a certain type of epilepsy. The problem is there is no place to purchase it. I assume their parents need to go to a state that recognizes their prescriptions. Depending on the state I usually have more than one medical condition that would allow me to obtain a prescription if I lived there. Narcotics are very cheap compared to it but edibles are better on our livers. I would like to try low... [ more ]
See all 55 replies...
J-Pouch ForumsGeneral Discussion
Cruising with my new J pouch
J Jodih
CeeeeCeeee I have to share the wonderful bidets made by TOTO of Japan. In the Tokyo Narita airport public bathrooms are every variety of TOTO bidets made. On my last trip there a couple of years ago, TOTO had an added feature to their bidet.........a button on the bidet that activated a "courtesy flush"! The toilet didn't actually flush but made the sound of a flushing toilet when the button was pushed. So......all of you techies........it wouldn't take much to invent a very small hand held device that... [ more ]
Jodih Thank you all. You e put my mind at ease, at least a little. The whole public bathroom thing scares me a bit as I feel I'm so loud! LOL. But I guess I do need to get used to it! [ more ]
Jan Dollar I always bring a course of antibiotics, just in case I develop pouchitis while traveling, unless it is just a few days of local travel. But, I particularly make sure to do this when traveling out of the country. I have not done oceanliner cruises, but I have done small river cruises. No matter how careful you are there is the potential for picking something up. We learned the hard way to also pack any OTC meds you might need, like antihistamines, decongestants, etc.. It all depends on the... [ more ]
See all 5 replies...
J-Pouch ForumsPouchitis
Metronidazole Gel 0.75% topically for pouchitis
C ccolbymontucky
ccolbymontucky Hi guys, just an update. The gel is still working really well for me. I find "less is more" and still am using every 2-3 nights. Just two tsps of the Metronidazole gel per application which is probably 3 grams or so (1/2 fill of the supplied applicator). Yes, Metronidazole is secreted in breast milk therefore there is "some" systemic absorption, but I really find no side effects from it's use in this way. Jan, I am going to check into Flagyl supps as these would make travel and just general... [ more ]
TE Marie http://www.mayoclinic.org/dise...ts/art-20046983?pg=1 I know of several off label uses of amitriptyline, which is a tricyclic like Jan mentioned. It was prescribed by my neurologist to treat my 24/7 migraines. My psychiatrist increased the dose of it to take the place of an antidepressant I was taking. It's primary purpose is as an antidepressant. The third benefit has been my improved j-pouch function because I haven't taken a loperamide (Imodium) since I started using it. I still have... [ more ]
CTBarrister OK, thanks for the replies. I am going to look into oregano oil. Is there a possibility of oregano oil by enema as well, or should it be taken orally? The flagyl gel enema seems interesting but in the past, all retention enemas that I took I had problems holding. My Pouch is not retention enema-friendly, for whatever reason. [ more ]
See all 8 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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