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J-Pouch ForumsGeneral Discussion
gut friendly antidepressant?
W wiggles
suebear See, and I tolerated Celexa very well; I took it for 4 years and didn't have the symptoms you describe. Not all antidepressants treat all forms of depression. Some are tailored more for anxiety or sadness. Your doctor will prescribe the best drug to treat the symptoms you are exhibiting. If that drug negatively affects your output, try taking it with food. Sometimes we just have to make things work for us, even though it can be an inconvenience. Sue [ more ]
kathy smith Again, different antidepressants work differently for different people. I take generic Zoloft and it works very well. All you can do is give each a chance. If you notice a bit of discomfort when you start taking one, you could try to tough it out for a few days to see if it will settle in. The problem with starting and stopping antidepressants quickly is that many of them don't have the desired effect for up to 6 weeks. That's why it's very important to try to stay on one. Just because... [ more ]
Av8erchic I've taken both Wellbutrin and Prozac both (at different times...) after I'd been diagnosed with UC, but only had Prozac after my colectomy/ileo/pouch and haven't had any problems. [ more ]
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J-Pouch ForumsGeneral Discussion
Way TOO MUCH GAS
R Rocket
Jan Dollar S. boulardii is different because it is a yeast, not bacteria. It is has been shown to be useful in treatment of infections of C. difficile, H. pylori, and travelers diarrhea. It is not included in VSL#3. Whether you need it or not, I have no idea. And sure, it could cause more gas. Again, varies by each individual. Here is a medical journal article that reviews it: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3296087/ Jan [ more ]
Rocket Hi Jan, One last question. I am currently taking VSL #3 packets a Probioctic which has 450 billion live bacteria. The S Boulardii, a Probioctic that has another 5 billion per capsule. I think if I remember correctly, and correct me if I am wrong, you take Align Probioctic. Does the S Boulardii have something additional to most of the other probioctics do not have? I am just concerned because I don't want to take something that may cause additional Gas. Before I order the Boulardii, I just... [ more ]
Rocket Jan, OK thankks for the Info. Am feeling better today. Rocket [ more ]
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J-Pouch ForumsGeneral Discussion
Chronic Active Enteritis
B Bish
Jan Dollar The problem is that "negative for Chron's" does not mean it isn't Crohn's. It just means that they cannot confirm Crohn's. Still, this could just be pouchitis. If you HAVE been taking NSAIDs more than just the occasional dose, this could be due to that, and it should resolve if you avoid NSAIDs. The treatment plan makes a lot of sense to me, particularly if antibiotics are not working for you. But, I can see your reservations about steroids, even at a small dose. So, I think discussing what... [ more ]
Bish The tests showed negative for crohn's. I called for my test results, they told me that they typically don't do follow up appts to go over test results. I think he wants to see how this works for 30 days, then we'll go from there. I will express my concerns about the steroids. Thank you for help! [ more ]
Jan Dollar This is sounding like Crohn's disease. It may not be it, but something similar, since Crohn's is often described as regional ileitis. Usually with Crohn's you need maintenance medication. Not necessarily steroids, but something. I can't believe that Dr. Shen would keep you on Entocort any longer than necessary. The good news is that Entocort is considered basically topical and poorly absorbed. What does Dr. Shen tell you about long term plans/goals. Generally, they say to avoid NSAIDs with... [ more ]
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J-Pouch ForumsGeneral Discussion
Self Dilation Kit
V Valentine
Jan Dollar Which ever finger fits. You would not perforate, as pain would prevent you from going beyond your level of comfort. The idea is to dilate daily to prevent the stricture from reforming. Once it is there, you really do not want to be forcing anything in there. If you cannot get your smallest finger past the stricture and you are having symptoms, it is time to make another appointment. It is better for the doc to dilate again early than wait for it to become critical. At that time, you can... [ more ]
Jan Dollar I am sure it would be more fun, but you are correct that it would not help the anal stricture. Jan [ more ]
jeane Ooh my ignorance. Sorry. [ more ]
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J-Pouch ForumsGeneral Discussion
pouchoscopy
S Stone
Holly M Scope went well. No sedation. Doc took a couple of biopsies and will call me in a couple of days with the results. He is hoping the 30 day round of cipro knocked out whatever was going on. I sure hope so. If all stays calm I don't go back for 6months. I sure hope that is the case. [ more ]
Stone Hi there let me know how everything went good luck. [ more ]
Holly M I have my first one today at 11:30, very nervous. [ more ]
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J-Pouch ForumsGeneral Discussion
how to get same results from oatmeal?
fqfq
jdgrimm ❤️
Av8erchic As Jan said, I know that some people are worried about carbs. But....I always make sure to have a lot of carbs throughout the day and it seems to help bulk everything up. I'm just a couple weeks past my takedown, so I know my situation isn't perfect yet by any means, but it's helped a ton so far. [ more ]
Jan Dollar No, it shouldn't. That is because bulked stools still are moist. The bulk give something for the gut to contract against that is not irritating, like vegetables. Oatmeal is full of soluble fiber, just like Metamucil and Citrucel. Rice too. But, if you don't want to eat a bunch of carbs all the time, soluble fiber supplements can provide the same bulking without the carb calories. Most post op folks are not worried about carbs, but if you are concerned about too much weight gain, or want less... [ more ]
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J-Pouch ForumsGeneral Discussion
Kidney Stones
S Srf1
Srf1 Thanks for the info Rocket! Still waiting to pass the one I've been dealing with. The sucker will move for a day then takes time off for about a week. The xrays and CT scans show that it's moved significantly though over the past few weeks. Hopefully not much longer till it's out. My Urologist says the remaining two in my right kidney are very, very small. They only show up on the CT scan and hopefully won't be a problem to pass. [ more ]
Rocket srf1, Yup, that is what I was told too since we cannot absorb liquid. Then because of that, I crave salt but have to watch that too. I had a 3 step surgery in 1993-1994 then a major bowel obstruction which should have killed me as I lost 32 inches of small bowel due to gangrene. I get kidney stones quite frequently. Four times I had to have them blasted out using the Extracorporeal Shock Wave Lithotripsy (ESWL) for Kidney Stones. That is because these stones were more than an inch in... [ more ]
Mason&Mara'smom I had my surgery a little over 5 years ago and I have had more than 15 kidney stones. A few months before I had surgery I was told I had about 8 stones between my two kidneys and it is common for UC or Crohns patients to get stones when they are on steroids. I had been on high doses of steroids for over 5 years before I had surgery. It wasn't until I was about 4 months out from my first surgery that I had to deal with the first attack of the kidney stone that was about 7mm. I have gone to... [ more ]
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J-Pouch ForumsGeneral Discussion
Passed Out From Dehydration
CTBarristerCTBarrister
CTBarrister It's funny but when I passed out in the early a.m. of 12/31/12 as described in my initial post in this thread, I don't know if I was sitting on the toilet or whether I had stood up from sitting on the toilet. The last thing I recall before passing out was sitting on the toilet seat. My injuries (specifically a big scab on my right knee that I still have!) suggest I may have slumped forward from the sitting position on the commode, the knee fortunately cushioning some of the fall and then my... [ more ]
TE Marie A couple of days ago I fell asleep, didn't pass out, while sitting on the pot in the middle of the night. When I woke up my feet and legs were asleep up to my knees, I couldn't move! I eventually got them to "wake up", it doesn't sound bad now but was scary at the time. I think passing out would be much worse! Stay hydrated everyone! [ more ]
TE Marie I'm sorry about Becky's recent surgery and pray it isn't crohns Even though I have not been able to do anything but it's still better being here than at home where there are projects and all sorts things that need completed or done. Nothing here and it's a beautiful pretty new townhouse condo. No 13" snow storms either! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Post Op Discharge after j-pouch formation
GoHeels23GoHeels23
rsz The discharge will not completely stop, it should change to just mucus. The intestine used to form the jpouch will still produce mucus so you will have to occasionally empty it. Also with a loop ileostomy there still may be a small amount of stool making it into the pouch. [ more ]
TE Marie One benefit of passing this waste now is you learn you can control/hold it before going to the loo. This means your going to be ok when they do the take down surgery! [ more ]
Jan Dollar Dark red stool is indicative of either breaking down of clotted blood that is nearby, or bleeding further upstream. If this continues at the same frequency, you will need to be examined. It is possible you have a "bleeder" in there that needs to be cauterized. Also, this could be cuffitis (inflammation of the retained rectal cuff), which may need topical treatment. So, keep monitoring this and call your surgeon back if it doesn't begin to deminish in a day or two. Also, if you develop... [ more ]
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J-Pouch ForumsGeneral Discussion
Updated J-pouch Statistics
P Pkitty
Holly M Good article. [ more ]
TinCan This is a link to an abstract of a brief review article that may provide some of the information you are looking for - although it is not comprehensive by any means. It seeks "..to highlight such advances in colorectal and anorectal surgery for IBD over the last year". I was not able to find a link to the full article online, but I didn't try very hard either. I obtained my copy via a subscription service. Anyway, here it is. [ more ]
gleam I went to Cleveland Clinic Weston and had Dr. Steven Wexnar perform the surgery. Honestly, it's a very long road to normalcy and I am not at the point yet where I can say the surgery, pain, and hoops I had to jump thru were worth it. The memories are too fresh and my body has not fully adjusted yet. The pros are that since returning to work mid November I have not called in sick once! By this time without surgery I would have called in 2.5-3 weeks worth. So in that regard there are... [ more ]
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J-Pouch ForumsGeneral Discussion
6 weeks since takedown and confused
S Shannah
gleam Your story sounds amazing. You are very blessed! [ more ]
Rocket Wow you are very lucky. A good day for me within a 24 hour period is going to the bathroom 8 times a day. Sometimes, I get up once a night, but ususally is 2 times. Then when the alarm rings I go again. I eat breakfast and go again. So that is 3 times if I go once at night. I eat lunch, I go again, Before I drive home from work, I go again. That is 5 times. I eat dinner, I go again. Then I usually go 2 more times before I go to bed. That's 8. Of course I go so often because 5 years after my... [ more ]
Valentine I am very happy for you!!! Happy healing, I am sure you deserve it. [ more ]
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J-Pouch ForumsGeneral Discussion
Abx causing stomach/pouch pain--probably a Jan question
ConnieConnie
Jan Dollar Ugh! What a pain! Not good when the treatment is worse than the disease!! Thinking about you guys! Jan [ more ]
Connie Stopped the infusions altogether Jan 11 (5 weeks), because they were making him feel very bad, and infection seemed to be gone. Four days later, it appears to be coming back. Infectious disease doc ordering IV infusions to resume with Daptomycin ASAP. Alhough side effects may be similar, hoping we can hold off infection long enough for the bone to heal before they have to remove the plate. Going for x-ray today to check the status of that. Naturally the foot surgeon is out of the country for... [ more ]
Connie Jan, you are exactly right--the levels have consistently been high. He stopped the infusions altogether for 24 hrs, then resumed a dose that has been lowered for the second time, starting yesterday. Stomach/pouch pain decreased, then increased when infusions resumed. Guess we'll wait and see. [ more ]
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J-Pouch ForumsGeneral Discussion
burning lower left abdomen
W wiggles
Jan Dollar If it is where your hip bone is, it may not be gut related at all. Sounds more like tendonitis or arthritis then. Burning sensations are usually nerve related. If your doctors are aware of it, it probably is nothing terribly urgent. Jn [ more ]
wiggles ive been asking docs for years. have an appt with a great gi on the 22nd. maybe hell be different... [ more ]
mgmt10 Sounds like a question for your doctor. Especially if it hurts that bad. [ more ]
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J-Pouch ForumsGeneral Discussion
Showering with ostomy
C Cate87
CeeeeCeeee I, too, showered without the bag which gave me a chance to rinse it out....although I was told it wasn't necessary. If my stoma became active during my shower, it didn't bother me. Since I showered in the a.m. before breakfast, it never was that active at that time of day. Every seven days when I changed my wafer, I showered without anything "glued" to me. What a pleasure! [ more ]
nocolon-2000 Way back when...I always took the bag off and kept the wafer - like others have said. When it was change time, I took it all off and showered allowing the hot spray to hit very directly around the ostomy area. It was wonderful! Afterwards, I just toweled and blotted the area the snapped the bag back on. Be well! [ more ]
AyrishGrl I have always showered without a thought for my covering up my bag. On days I don't change the whole appliance I just put a dry bag on after I get out (I use a 2 piece) and I use a blow dryer to dry the flange. On days that I change the whole thing I shower "naked" to get my skin nice and clean. [ more ]
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J-Pouch ForumsGeneral Discussion
Cuffitis? Something else?
T Twinstar
Twinstar Thanks, Jeane. It is really helpful to hear what you've been through and I am so sorry that you've not responded to treatment Other than this site and a few studies pubmed, there isn't a lot of information on cuffitis out there... [ more ]
jeane Sounds exactly like what I have been battling for months. I have chronic cuffitis that is pretty resistant to treatment with canasa and hydrocortisone suppositories. I also have a fissure and use nifedipine daily. Both pouchitis and cuffitis can increase your frequency and cause discomfort. Sometimes if you have been on one antibiotic for a long period, you may need to switch to another one so it does not lose it's effectiveness. This often takes time to sort out. It can take several weeks... [ more ]
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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 ForumsHelp! Need advice now!
leaking and gas problems
Y YOUNG&LOVING
TE Marie We have a Health Savings Account (HSA) with a lower cost insurance because the deductible is so high. I get to the deductible with my medications, blood tests, and office visits without any tests. The purpose of the plan is most people don't get above the deductible and therefore the insurance cost is cheaper. I'm glad I didn't have to apply as I have the wonderful pre-existing conditions. My husband id retired and they totally changed the insurance plan to this - we had no choice. I still... [ more ]
Scott F Deductibles are strange things. They're designed to encourage much more limited use of health care. If, OTOH, you are fairly confident that you will exceed your deductible during the year then it should have *no* influence on your health care decisions. You do still have to consider copays, but the deductible itself is meaningless unless you can stay below it. And in my case the copays are the same for a four packets/day Rx as one packet/day. That would be true for many folks, since copays... [ more ]
TE Marie Thanks Scott F., I'll keep to one packet of the DS daily because as far a I know I have not had pouchitis yet and I have a high deductible insurance. I'm glad that it's covered and goes against my deductible. I pay the full insurance adjusted amount on all of our medical until we pass $4,500 annually. I hit that last year by the end of April. Hopefully I won't be having any flex pouch scopes, CTscans or anything like that by then this year. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Daytime leakage...advice needed!
P PamShea
jeane This is a common symptom of pouchitis. What confuses me is that you do not have leakage at nighttime as I never have leakage during the daytime with pouchitis and I have only experienced it at nighttime a few times. Leakage goes part and parcel with pouchitis. Antibiotics typically clear it up in a couple of weeks. [ more ]
PamShea I thought it seemed strange to have leakage in the daytime and not at night as well. I had a pouchoscopy in October, which was normal, but I was only having very occasional issues, and had contributed it just holding stool too long. I also wondered if that is a symptom of pouchitis? Thanks so much for the input, I've become quite discouraged with this issue and all advice is appreciated! [ more ]
suebear You should get scoped. Odd that it would be in the day and not at night. If the scope is normal you might want to see a rectal physical therapist. Not all kegels are the same, you may need a variation. Sue [ 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 ForumsHelp! Need advice now!
3rd Hospital Stay in 2012 for Dehydration Now Small Bowel Tests?
Txgal58Txgal58
Txgal58 It prob was due to overuse of IV because I can't convince them my normal blood pressure is around 100/75. Has been as low as 85/53 laying down after 3 days on IV. I'm perfectly fine at that BP! At 54 I'm lucky this dehydration issue seems to be my only health concern! In fact the BP machine at work often gives me a failure mssg! [ more ]
Jan Dollar Hmmm...20 mg isn't very much and I would not expect serious electrolyte disturbances from that dose. Maybe they overloaded you with IV while you were there... That can happen sometimes when they overcorrect for dehydration. It is not a mistake, as they go by your blood pressure, but it cam take a few days for your body to adjust. Jan [ more ]
Txgal58 Thanks Jan! My colon surgeon said I could go ahead and start the tapering off (1/2 tab for 5 days) of the 20mg of prednisone and stop the Flagyl. I weighed myself today and was down is down 14 lbs fully clothed and for the most part the swelling is greatly reduced! If I'm going to gain 20 lbs I want to eat something more than broth! I have an appt on the 21st with the surgeon to discuss the gall bladder surgery. Sounds like laparoscopic removal will not be for me! Too much scar tissue or... [ 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 ForumsHelp! Need advice now!
Crohns
B beckysmom
beckysmom Thank you kill. I found the crohnsforum a few days ago, just have to "learn" it. Thank you for the well wishes. TE, I'm not on facebook, but maybe I will have to join. [ more ]
TE Marie There are several Facebook groups. Some are like social clubs and some are more serious. [ more ]
killcolitis There's crohnsforum.com (i think that's it - google "crohnsforum". It's quite active and there's a lot of information there. Personally I think it's better than the HW site where people are pretty grumpy and down. Understandably but doesn't make for a good place to ask questions/get support in my opinion). Hope she's better today! [ 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 ForumsHelp! Need advice now!
last effort-kenolog injection for cuffitis
J jeane
Scott F Jeane- Just a small point: the pouchoscopy and MRI you mention will not add any radiation exposure whatsoever. They are a nuisance, but at least that concern wouldn't apply. [ more ]
TE Marie I would get the injection if only to buy time, hopefully without pain. You have been through the ringer and this your medical problems and options appear to be negative. It's easy to choose from good options but now you are dealing with the lessor of evils. It's impossible to see what the outcomes from the various options will be. So I wish you could get a few pain free weeks to analyze it all. Take care [ more ]
Jan Dollar Thanks for the link. Looks like it is slides from a seminar. The bad news is that the Kenalog injection looks like the last ditch effort before surgical repair, redo, or diversion (ileostomy). The good news is that this seminar was in 2009, so other options may be possible since then (such as the possibility of biologics). However, you need the right diagnosis for insurance to cover biologics such as Humira (like enteropathic arthritis or Crohn's). This is where having a Crohn's diagnosis... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Wow I got a painful earful from my husband this morning
S Subzeromambo
Scott F I can't find any contraindication for Bentyl in asthmatics. I also checked several common asthma drugs and found no interactions, though it's worth checking the specific drugs you're taking. I'm sorry the NP is so bad at her job. While there might be a good reason in your case for the decision, it was horribly communicated and likely not properly considered. [ more ]
TE Marie I had a PA when I went into ER. I always thought they were like the same. I was just trash talking the NP as she should know more about a pouch if she works in GI's office. I hope you are feeling better today Subzeromambo. Weekends are the worst when the doctors offices are closed and you are in pain. [ more ]
Jan Dollar I don't know which pay more, but I only see NPs in outpatient clinics, not hospitals. But, yeah, not every graduate is a star... Jan [ more ]
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J-Pouch ForumsPouchitis
Just finished seeing Bo Shen
vanessavyvanessavy
winter wish ❤️
CTBarrister I spoke to Dr. O a few nights ago and he told me he was going to speak to Dr. Shen regarding lactulose. Pending that conversation happening, he did not seem to think it would be indicated in my case. He has told me to reduce Entocort from 9 mg to 6 mg for 2 months. This based on the fact that I have done extremely well with the Entocort/rotating antibiotic regimen. [ more ]
John95 CTB, Any update on Dr. O and his position on lactulose? Have you tried it yet? If so, has it helped your symptoms? I'd love to hear any feedback. [ more ]
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J-Pouch ForumsHelp! Need advice now!
feelings like cut glass!
crick05crick05
kathy smith You don't have to worry about getting it too close to the opening. And to avoid 'sticking' apply a thin layer of vaseline over the top. It's really the king/queen of barrier ointments. After using the bathroom, just apply another thin layer of vaseline (or other greasy-like ointment/cream). kathy [ more ]
crick05 Thanks, I got the Ilex but have not used it yet . can you tell me how to use it? I was afraid of putting it to close to the anal opening for fear of it sticking together and that is where most of my irritation is. Thanks for your help! Christy [ more ]
Txgal58 As far as barrier creams go, I found ILEX worked best for me. I was only able to find it through various online sites. It does not require a prescription. Butt burn is SO UNCOMFORTABLE! Warm baths, no wiping, just rising and dabbing, soft easy diet and barrier cream made me the most comfortable. Good luck! [ 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 ForumsHelp! Need advice now!
Questions regarding Jpouch with small leak (pre second step)
F FXT
JessGoguen Hey, My surgeon dd the same thing. He had me come in, explained what he saw, the next procedure and had me sign my consent forms for takedown. I had my pouchogram 4 weeks later and surgery the following afternoon. It'll fly by and you'll be healing before you know it. [ more ]
FXT Yay thank you for taking the time to respond. Thats very reassuring. I think the surgeon mentioned over the phone that she wanted to wait and see if it improves. I have an appointment with her tommorow morning where she'll be going into detail as well as doing some prodding. My concern was the wait might not do anything because I've had the first step for a little over 4 months. I would think the healing is done by now. Always good to go in knowing all your options as Kaiser sometimes doesnt... [ more ]
JessGoguen Hi FXT, i had my step 1 in September of 2012 and my takedown in December. I too had and still have a small "leak". I had three pouchograms done and the first showed a small leak, the second it was tiny/pin hole and the third showed not much if any change from the second study. My surgeon believes it is a sinus tract and something he was not too concerned with. These things can occur. We talked about postponing ANOTHER 4 weeks but ultimately decided this is something that will be there and... [ 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 ]
See 1 reply...
J-Pouch ForumsPouchitis
First bout with pouchitis
B Biancaskye
Former Member Just reading this thread for my own problems this past week. I'm still not sure if I have pouchitis or something else. Saw my surgeon today but don't get scoped until Monday. My surgery was Apr. '94 and take down 6 months later. My only issues through 18 years were obstructions at the anastomosis site, which I had fixed in 2009. Other than that just dehydration when I get the flu or something. I feel really fortunate to have had so few problems. I hope things work out for you. [ more ]
Instigatr thamk you! since i have beem so lucky with relatively few problems, i learn as i go... Aaron [ more ]
clz81 Cipro or Flagyl or a combo of both are usually the first antibiotics docs will prescribe. The metalic taste you had was likely from Flagyl. Personally, it's not my antibiotic of choice. There tend to be more side effects, you have to take 3 times a day, and it doesn't work as well with my pouch. I would recommend Cipro 500mg x 2 times daily for 10 days. Augmentin is another great one, but I only started that since I have chronic pouchitis. It's 875-125mg twice daily (it's a combo drug). [ 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 ForumsHelp! Need advice now!
Just when I think I'm getting it down...
KelseyHey2308KelseyHey2308
TE Marie What did you find out? I hope you are doing great! [ more ]
KelseyHey2308 I made this post before I went to the hospital, and I see my primary in about an hour. Thanks though. [ more ]
TE Marie Cuffitis happens where they attach your j-pouch to your rectal cuff and is UC. They leave a small amount of your rectum, approx 2 cm, to attach the j-pouch to. Without it there is a higher probably of incontinence. That stinking 2cm can still get UC and when it does it causes bleeding, pain, increased bathroom trips, etc. It is right at the cuff and there are around a zillion nerves there, so that wee bit of tissue can cause a lot of grief. I've had stools filled with blood, drips of blood,... [ 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 ForumsHelp! Need advice now!
Does a rectal ulcer mean I have cuffitis? Effective Pain Relief?
KelseyHey2308KelseyHey2308
TE Marie Canasa is made with the same medication most of us were on at some time with our UC. Cuffitis is UC in the rectal cuff where they attached your j-pouch to your cuff. I hope they took some biopsies during your scope. After the pathology report comes back you should get a diagnosis. Mine actually ulcerative colitis. They lied when they said the operations cured us. They leave a small amount of rectum to sew the j-pouch to at the rectal stump. I wouldn't stop taking the Canasa. Just because it... [ more ]
Jan Dollar Sounds like cuffitis to me. Plus, you were prescribed the main treatment for cuffitis, Canasa. Not an emergency, so it can wait until you can see your GI. Lortab is the same thing as Vicodin. Youshould absorb it the same in tablet r liquid form, as neither are enteric cated and dissolve quickly. The point of the liquid is more for pediatric use, so you can give smaller dses more easily. Jan [ more ]
jeane An anal ulcer usually is indicative of cuffitis. Unfortunately I have been dealing with this for well over a year since my takedown. Even with regular Canasa use and intermittent and hydrocortisone suppositories I still bleed more often than I would prefer and often have anal discomfort. I also have a fissure and hot baths can help this as well as nifedipine, which is a compounded prescription cream. Your GI may suggest antibiotics but I don't feel they do much to help cuffitis at least in... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
j-pouch, pregnant, & stuffed!?! Help!
FM Former Member
JeniBeck Gturnertwo, This awful sickness that brought us to this blog sure makes time fly, doesn't it? Cannot believe I am already 41! We may have to use a donor egg but the jury is still out on that. Good luck to you! I'll keep you in my thoughts and am sending best wishes your way! [ more ]
JeniBeck Comber, Such good news about your pregnancy! And wow - 37 weeks with no jpouch issues is impressive. I always thought a c-section was the way to go to reduce straining in the anus/rectum. I'd love to hear what you decided to do. Best of luck to you!! [ more ]
JeniBeck My husband and I have been going back and forth trying to figure out whether we adopt or chance a pregnancy after all the surgeries. I'm sure you can relate when I say I was sick for 10 years and now 3 years after my jpouch surgery I feel great - and I don't want to go back! But I also feel so good and like I can carry a pregnancy. How much did you involve your GI Doc during pregnancy? You Wonderful Strong Women have given me hope! Thank you! [ more ]
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J-Pouch ForumsPouchitis
Stress!!!
S Sonja6
AllyKat Stress is a killer for me as well. [ more ]
Sonja6 life, its not anything extra. Or even if there is something extra stressful going. I get the same sick and it comes on fast. I get just as sick paying my bills as i did when I was taking care of my husband while he battled melanoma. I do yoga. The breathing excersises. Everything I can do to keep myself calm and focused. But as soon as i get uhg feeling BAM! it hits me. And this isnt new. Its been going on for years. Doctors dont really have alot of answers. Alot of maybe its this maybe its... [ more ]
CTBarrister What is causing the stress? [ 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 ]
See all 10 replies...
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 ]
See all 4 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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