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J-Pouch ForumsHelp! Need advice now!
UTI or Regular Healing Pain??
M mom2panda
mom2panda Thanks all. I think it must have been one of those random pain things. Or, I could have been ovulating on top of everything else. I do get pain when I ovulate, but this seemed different. Anyway, today = no pain. Weird. If it comes back, I'll go for the urine test. In the meantime, I'll get some cranberry juice or tablets. Thanks again! [ more ]
skn69 Can I add something? Whenever they did pouch surgery on me they catheterized me and I always had problems for a couple of weeks post op...occasional leaky bladder (would stand up and the urine would dribble out), mild bleeding occasionally, irritated urethera, mild bladder discomfort and lower back pain. Usually an increase in fluid intake + a glass or 2 or cranberry juice was enough to put pay to most of it. They always told me it came from the catheter irritating the area and that mild... [ more ]
Jan Dollar This isn't sounding like a UTI, a simple urinalysis could rule it out, and quicker than a urine culture. If the bacteria or cell count was too high, then a culture would be the next step. It is pretty common to have odd pains following a big surgery like this. Lots of nerves getting cut and having to regrow. In the meantime, those signals can be jumbled up on the way to the brain. Especially when the discomfort is related to ostomy activity or other gut sensations, this seems more likely. [ more ]
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J-Pouch ForumsHelp! Need advice now!
New bleeding after more than a year
G Gutless♥
Gutless♥ Thanks Jan- I was just reading through some of the other posts and I am beginning to get the same feeling. I'll call the doc tomorrow and see what he will do for me. At least I'll be doing something instead of hoping it just goes away. [ more ]
Jan Dollar Sounds like cuffitis. Bleeding is almost exclusive to cuffitis. Occasionally it occurs with pouchitis. I'd call the doc and see about getting a prescription for Canasa suppositories. Usually this is not serious, but it can get bad if not treated. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Cramping
C Chrislee
Chrislee She did start her period. However she is still cramping and she says that sometimes it will last for twenty minutes. We have gone to see her pediatrician, who is not sure what is going on.She recommended going to our gastroenterologist. Everything seems to be normal except for the periodic cramping. [ more ]
skn69 Any specific dietary changes? Change in physical activity (new sports or exercise plans?), new drugs or meds that she is taking or stopped taking? A change in the fluids that she drinks? (more carbonated drinks?)...unless there is a direct relation to one of the above or something else that I didn't mention then I agree with Jan...pain is a symptom of something...persistent pain is a symptom of something persistant (doctor told me that one)...and it needs checking out. Sharon [ more ]
Jan Dollar Sounds like something bad enough to see the doctor. Could be she is premenstrual, but I would not want to assume that. Pain is a sign, and when it is persistent, it should be explored. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Post op nerve pain, possibly shingles?
P Pluot
TE Marie If you don't know it or not there is a shingles vaccine for those of us that had chicken pox. My insurance wouldn't pay for it until I was 60. I paid $225 for it. My Internist wrote the prescription and someone at Walgreens gave me the shot. Both of my parents had shingles and I was scared of getting it on top of everything else. A lady in the doctor's waiting room said she's had shingles and it was well worth paying for the shot to not get it. [ more ]
Becky Boo I had a bit of numbness and pain near my belly button as well, post op, and was told the same thing by my surgeon -- cut nerves, and it would subside over time. It did. I had a spot of numbness for a long time, but the pain went away fairly quickly (maybe a few weeks?). The pain I experienced was different than you describe, however. No pain meds necessary -- more like an itching/burning that was quick and didn't last -- more like pin *****s than an iron. So perhaps you have the same thing,... [ more ]
mgmt10 I don't recall having any burning sensation after surgery and I would think there would be a rash if it were shingles. Definately possible that its your nerves there reacting. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Swallowed a Coin!
LaurelNicLaurelNic
CTBarrister So it took 48 hours to do the tour and find that your son had no strictures? I guess that quarter was a good luck charm after all. I think your son will have to keep it, maybe even wear it around his neck as a pseudo St. Christopher medal. As for George Washington, he had a rough winter trip in 1777-78, but this was probably a little wilder. Anyway, it is great news! But I hope the news does not embolden him to start placing quarters in his lips or mouth whenever he decides to clean up the... [ more ]
Jan Dollar Great news! An unrecommended experiment that proves there are NO strictures! Jan [ more ]
LaurelNic Breathing a huge sigh of relief!!! The quarter made its exit with no problems. I will actually sleep tonight! Thanks for your helpful responses! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouch reconstruction vs. Pouch revision
S Solomin
Solomin Hi, Thanks for the information. I had a minor procedure (stapling) for what could have been the same issue as you, but the results did not change anything. I am due to go in for surgery within the next few months to move to what I hope is a temporary ileostomy to see where my problems are - with the pouch or other issue. Solomin [ more ]
CTBarrister As it was explained to me, a wall developed in the pouch and the contents were not emptying because of it. My surgeon called it a "septum." I knew something was physically wrong with me because when I sat down and pushed it felt like the stool in my pouch was hitting something, like the natural pathway for stool out of the pouch was somehow blocked. The feeling was clearcut, I knew 100% I had a structural pouch issue. The problem was detected when I saw my surgeon and he manually scoped me... [ more ]
Solomin Hi CTBarrister, What do you mean by "septum"? I seem to have similar problems as you describe. Thanks, Solomin [ more ]
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J-Pouch ForumsHelp! Need advice now!
Liquid Diet
M Megals
Jan Dollar Ensure is usually a pretty safe bet when you are on a full liquid diet. It is lactose and gluten free, and tolerated by most. the main thing is that it is balanced nutrition, without any roughage that could add to obstructive symptoms. It is not as low residue as an elemental diet formula (which is prescription only anyway), but it should suit you fine. You should shoot for a minimum of 4-6 cans a day, which would be 1000-1500 calories. 4 if you getting calories elsewhere, 6+ if you are not. [ more ]
Megals He didn't say clears only, just that he wanted only liquids to see if things would begin to pass. I figured I would do mainly clears, but also maybe for dinner or something get some other non-clear, liquid like smooth tomato soup. I will forever hate broth, Gatorade and jello because of all of this crap. (Pardon the pun) [ more ]
JillM Is this a full liquid diet - meaning only clear liquids? Or can you have milk and milk products? I guess I would want more info from dr, unless you know he said clear liquids only...Chicken broth is a big one, pedialyte (an electrolyte replacement for kids that doesn't have added sugar like Gatorade), apple juice (which goes right through me), etc... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Post-op bleeding after step 2 - now clots????
M mom2panda
mom2panda Thanks, Jan. I ended up having a lot of bleeding on Sunday overnight. It wasn't just in the toilet, I had to wear pads - 2 of which I bled through. Weird stuff coming out too. Yesterday morning, the bleeding had stopped. My Dr ordered a blood test and said if it continues, I would need a pouchoscopy to check. Bleeding started again last night, but not nearly as much. Just passing some with small clots when using the washroom. I have updated my Dr and am waiting to hear. [ more ]
Jan Dollar If it hasn't resolved by now, you should call your doctor. Jan [ more ]
mom2panda So the bleeding is increasing and now I am passing small clots. Is this still normal? Thanks so much...trying not to be a nervous nellie but not entirely succeeding. [ more ]
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J-Pouch ForumsHelp! Need advice now!
fluid behind incision??
B beckysmom
beckysmom Thank you Jan. When the surgeon drained it last week, when it was the size of 2 eggs, it had blood tinged fluid in it like when it was left to drain. Now it is much smaller, like a smashed marshmallow and the GI dr saw her yesterday for follow up and said it was okay. Thank you! [ more ]
Jan Dollar This is a seroma, pretty common complication, but fairly benign. It is caused by a pocket that does not collapse right away, usually due to some bleeding between tissues. I had this after 3 of 3 surgeries (c-section, j-pouch, hernia repair). The last time, I had to have needle aspiration drainage 3 or 4 times. Eventually, the pocket stayed collapsed. Jan Jan [ more ]
skn69 If there is no infection then she is fine to go back...she just has to watch it carefully and avoid physically stressing the zone...(no surfboards or bodyboards please!)...I litterally popped one open 8weeks post op by laying on a body board and floating in the sea...it never occured to me that the pressure would pop it, I am dumb that way. It ususally feels like a hard oval of round lump under the scar and it will slowly get smaller...she only needs to keep a vigilant eye on it and let her... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Stricture?
M Megals
beckysmom Call the service. You shouldn't have to wait till tomorrow. [ more ]
mgmt10 I'm in Ringoes which is about 30 minutes north of Trenton. Hope your dr. Gets back to you soon. It's always aggravating waiting for those call backs! [ more ]
Megals Well, the on call doctor never called me back :/ I guess I'll try again tomorrow. I live in South Jersey...Marlton to be exact. How about you? [ more ]
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J-Pouch ForumsHelp! Need advice now!
GI tract waking up after surgery
P Pluot
beckysmom They were talking about doubling up on the rooms when my daughter was there. Are you drinking enough? Well, I guess so now that they have you back on liquids. The food they serve in hospitals always amazes me. The jello is always RED and then they ask have you seen any blood in your stool? Get another color jello! I was always running to the store for my daughter. Hopefully things will be moving again shortly for you [ more ]
Pluot Sigh... having a bit of a setback... I haven't had any stoma output since before lunch, about six hours ago. I had a pretty light lunch -- a few bites of mashed potato, some cottage cheese, some chicken soup and then went for a long walk hoping to get things moving before I started eating again. Still waiting. Until then I'm back on clears. [ more ]
mgmt10 Ha ha Holly. They did the same thing to me with the lasagna! Wth?? Problem was I, like an idiot, ate it. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Remicade/Imuran
K Kerry062
jeane I know how difficult this must be for you as I am in a very similar predicament. I am going to discuss biologics with my GI this week. I imagine the ulcer may have been there awhile if it is that deep. I too have bleeding often and will be getting scoped again. If it were me I would go the biologic route. I know the side effects seem scary but so is major surgery again and Im not sure about you but Im willing to try anything to svoid the bag again. If they work and you have minimal side... [ more ]
Kerry062 Thank you for your response and story. Let me try to explain a little better. So they didn't actually diagnose Crohn's, other then there is no other explanation. They said if I would have developed these ulcers shortly after takedown, it would have been a different story. (And also I should mention that with my coloctomy removal they did find symptoms of what could have been Crohns.) They did biopsy the ulcers, but to determine if they were precancerous. The reason they are having me start... [ more ]
jeane Kerry, I am sorry to hear this. I wanted to share my situation as it is similar to yours, but appeared sooner after my takedown in May 2011. Maybe this will help you if you have more questions for your GI/surgeon before starting biologics. I have had rectal ulcers in the cuff for over a year and no one has diagnosed me with crohn's, although I am struggling to get in remission with the standard rectal suppositories with no luck. They suggested pouch advancement surgery for me. I also have a... [ more ]
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J-Pouch ForumsHelp! Need advice now!
rectal bleeding-fissure or cuffitis?
J jeane
liz11 yup.. exactly.. ended up back being a surgical patient because I WAS NOT "anatomically correct" as previous surgeons had screwed up! [ more ]
Jan Dollar In surgeons' defense, their focus is surgery, not medical management, so I can understand a surgeon opting not to treat a medical problem. However, this does not mean they should not facilitate you getting the care you need! Of course, it seems that you wound up being a surgical patient after all, but only after failing medical options. This is why I am in favor of the coordinated clinic, where all specialties work in concert for you. My Kaiser system is similar to CC, with everything on one... [ more ]
jeane Wow..this is so sad Liz . I am so sorry for your pain. [ 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 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 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 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 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 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 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 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 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 ForumsHelp! Need advice now!
Help with school
J JAX
Connie Take the California High School Proficiency Exam. "If you pass both sections of the CHSPE, the California State Board of Education will award you a Certificate of Proficiency, which by state law is equivalent to a high school diploma (although not equivalent to completing all coursework required for regular graduation from high school). Although federal agencies are not bound by state laws, the U.S. Office of Personnel Management has ruled that the Certificate of Proficiency shall be... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Possible Stricture?
R rvm1111
beckysmom My daughter had some strictures, one at the inlet (top) of pouch and one just found about 40cm above the pouch. The only way she knew she had them was she had blockages. At first she was dilated with the one above the pouch, that worked for a while. Sorry I can't give you more answers. Hopefully your drs will be able to figure this out. [ more ]
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J-Pouch ForumsHelp! Need advice now!
puking up air
S Sonja6
Rowans mom Low FODMAP diet for gas? If yes [ more ]
Rowans mom SIBO? Are you bloated? Distended? A good link I found about jpouch issues. http://www.practicalgastro.com...icle_ShenArticle.pdf http://usagiedu.com/articles/p...is09/pouchitis09.pdf [ more ]
Sonja6 Rowans mom, I dont think so, what kind of a procedure is it? Blood work? Scope? Biopsy? I rarely go to the doctor anymore. I mean Im sick all the time. But Ive always been sick all the time. Before and after my surgeries. So I only go when I really really think something is wrong. I found that for me, the stress that was involved with them just tossing up there hands every week. Just made it so much worse. So when I get really really bad. I go in they toss up there hands. I get pissed and... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Do's Dont's 4 days after Take_down Oooo the Burn!! Am I eating the wrong foods
D daviwyat
daviwyat 8 days post take down now!!! YEA!!! Well I am staying with soft foods. Eating the mornings and a early dinner. Chocolate pudding too rich, plain grilled chicken good. The first week has been good and still a good bit of ouch!! I am using Desitin and other creams with hi zinc. That's helping the rawness and burning. But I am going a good bit which is normal. I realized I am doing too much. I have been working on my rental houses inside and out. All the moving around is causing the food to go... [ more ]
Eric Forgot to say, as silly as it may seem, keep a log of everything you eat for the first few weeks, and your reaction to it. Generally, after any GI surgery, the entire intestinal tract is traumatized and completely shuts down, but only for the duration of the surgery of course. However, it can take several days for some people's systems to fully recover, not to mention freshly sutured bowel should not have a heavy load of, say, hamburger, running through it. From a medical perspective, it can... [ more ]
Mhg26 I agree what others have stated and and somewhat with Sue. While it is important to take it slow and reintroduce foods back into your diet, I do believe that us pouchers definitely should not be eating pizza, burgers, and fries a few days from the takedown! Yes every poucher will react a little differently to each food. However, very fatty, greasy foods like french fries or burgers have a notoriously bad reputation for gas, butt burn, etc. for those still in the early stages of the recovery... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Incision infected?
J JessGoguen
JessGoguen I did end up having a small infection that was cleared up with antibiotics. The incision is now healed and jpouch is working pretty good. [ more ]
BarbieG I had a nasty infection by my inscision that needed to be packed w gauze & changed several times a day. It just got worse. Finally had to put a put a tiny bag on open infection because it was draining so much. Two months to heal! Go to the doctor before it gets too bad. [ more ]
TE Marie Is it red or inflamed around your incision and/or is there any drainage coming from it? That's what mine looked and acted like when infected. You can check for a fever too, but I never had much of a fever. Unfortunately for me the one week they put me on antibiotics wasn't enough and I developed an ugly abscess. Otherwise please don't lift much at all. A gallon of Milk weighs around 9 lbs. Somehow I developed an incisional hernia later on as well. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouchitis constipation on Cipro-Flagyl
RM Rowans mom
Rowans mom Going for contrast study tomorrow. It is not constipation but partial obstruction. She is pooping just not enough. [ more ]
SandrineV Hi, I am also having some constipation issues and I found this website that suggests foods to help with it: http://ibs.about.com/od/consti...tforconstipation.htm I hope this helps. [ more ]
Rowans mom Doctor said all her numbers were spot on. So I don't know if it would even help. I am guessing stricture from too many operations, she has her ileostomy and laparotomy followed by a fascia correction. So lots to run amuck! Doing a contrast enema on Friday. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Feeling totally fed up!!!!!
EricEric
skn69 Hey sweetie, Quick question...What kind of pouch pain are you having and why are you taking stool thickeners? At this point there should no longer be any pouch pain other than something related to the stoma/valve and the fact that it isn't doing well...but your pouch should be absolutely painless by now...if it isn't then that might be a clue as to what is going on inside your body (could the pouch be off the wall? that could cause pouch pain, or a hernia...?)...as for the bubbly pouch, that... [ more ]
Eric Finally got an early apt to see my family doctor today, got my Px for pain meds, all is right with the world again (well, minus my leaky valve). I just can't believe what a HUGE difference my beloved Percocet can make. Don't really care if people think I'm addicted to it (some people have called me a drug addict, the nerve!). I take them faithfully twice daily at 3pm and 10pm, if that makes me a drug addict, then fine, I'm an addict, but an addict that feels better, not stoned, at all, but... [ more ]
Jenmystique One other thing.. As you stop taking percs, your body will tell you it is hurting more than it really is because it wants that pill. I'm not saying that is what is happening now but be prepared when it is time to stop them. [ more ]
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J-Pouch ForumsHelp! Need advice now!
TakeDown Surgery - What supplies wil I need afterwords ?
N NewLifer
TE Marie I forgot to add I take Charmin Ultra Soft with me everywhere we are going to spend the night, along with the hand held bidet. It does make a difference. If they get insulted just tell them their TP is perfectly fine and smooth but now you require TP that is more fabric like, as that is the truth. [ more ]
NewLifer Thank you so much all of your tips are very helpful and things I did not know. especially the tp and bidet. Now I can be prepared. I dont have a husband or family who can help me really. [ more ]
Av8erchic I am 6 days out of takedown surgery. The three things I've invested in that have been lifesavers for me are super soft toliet paper, baby wipes and vaseline. Don't forget that you'll need those for the hospital--you will be in so much pain if you have to use the hospital toliet paper! One thing that has frustruated me that you might prepare yourself for is the amount of restroom trips you'll make just after surgery and the amount of time you'll spend there. Of course I was warned, but I... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Oops! Forgot the clear liquids!
MB Mountain Baker
Scott F It depends on where the scope is going. If it's just a pouchoscopy then a Fleet's enema before leaving could clear things up nicely (that's my only prep). Give the doctor's office a call in the AM and perhaps you can get some reassurance or an alternate prep. The scope can rinse things off, within reason. [ more ]
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J-Pouch ForumsHelp! Need advice now!
How can I have IBS without a colon?
S Subzeromambo
Holly HM I was having a lot of problems that I thought were pouchitis. My GI scoped me and I ended up being diagnosed with Irritable Pouch syndrome. He put me on 50 mg. of Elavil everyday and my symptoms were relieved. [ more ]
Subzeromambo Jan, You are right the doctors called it gluten intolerance but really I am wheat sensitive. I still am but at first I ate bread as often as possible because it tasted so great and the doctor said I could. I am back to eating wheat free products. [ more ]
Jan Dollar This puzzles me, since removing your colon would not affect gluten intolerance in any way. That is an enzyme deficiency and affects the small bowel, not the colon. However, if celiac disease was ruled out, then it probably was not really a gluten intolerance, but more of just a sensitivity that was worse with the IBD flare. But, yeah, you can still have IBS type symptoms without the colon (IPS). Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Blood on stool
S SandrineV
Clicky I have had many periods of bleeding. I have antibiotic dependent pouchitis and cuffitis. After some severe bleeding recently they did a scope and found that the tissue in the pouch was inflamed and friable and bled when touched. They found a particularly bad area and cauterized it as it kept bleeding. There was major blood loss but then I am pregnant and they felt that made it worse. It's just been part of the whole thing for me - I have bleeding almost every day and was instructed to come... [ more ]
Spooky I'm currently having intermittent episodes of bloody stool (occuring over the last 3-4 months) which we're in the process of trying to sort out. I'm presently being treated for pouchitis though a scope in September did not show inflammation (I also don't think I have pouchitis). I've had bleeding from time to time since takedown, but until recently it's always been bright red blood after a BM and never mixed in the stool. My GI is away until the 7th and have to call to follow up when he's... [ more ]
Rowans mom My DD had blood and has had it intermittently since takedown. A couple times they thought it was pouchitis. We did a round of Cipro once and it did nothing for the bleeding. After 2 months enough was enough and they wanted to try Cipro again which I refused. They did a flex sigmoidoscopy and found a staple in the rectum was causing the intermittent bleeding. Regardless of cause it is a good idea to know why it is happening rather than just taking the antibiotics like they wanted us to do. [ more ]
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J-Pouch ForumsHelp! Need advice now!
My Story - Need Help
FM Former Member
Jan Dollar This far out from surgery and the lack of improvement from antibiotics would lead me to believe it is not pouchitis, but sphincter weakness. You may want to increase your Imodium (loperamide) dose, as you are taking half of the maxium dose. It is a good choice because it tends to improve sphincter tone (the sphincters tend to relax during sleep). You may want to take it morning and night, so that you have a good 24 hour coverage (there is a long half life and overlap from day to day). Pelvic... [ more ]
Dog Sodium Chloride is just salt; I don't think that would cause a problem. You might consider kegel exercises, if it's something simple like lack of muscle tone. Might sound silly or odd, but it can help. [ more ]
Former Member Hi, thank you for the reply, however I don't think that is the issue, as there is no food that I regularly have. It could possibly be one of my medications? I take sodium chloride tablets, would they have an effect? [ more ]
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J-Pouch ForumsHelp! Need advice now!
C.diff, ileus, blockages, j-pouch
RM Rowans mom
Rowans mom She only got that high once, and at the time did have a warm heating pad on her so it probably was more like 102. Which jives with the fevers she got at the hospital. She is my fever kid... always gets a fever. Infectious disease tested her for everything possible and all came up negative. They are still growing cultures but so far all are not doing anything, 4 days later. We were released today with antibiotics for Pouchitis. She also had a scope and it showed Pouchitis and they took... [ more ]
Connie Tom has been on 1500 mg IV Vanco b.i.d. for three weeks and has three to go. When I asked about it causing PI a week ago, Jan said she did not think it likely. That said, it is definitely causing both stomach and pouch pain. He also had a recent day or two of low grade fever and currently has elevated wbc--but with a mouth full of canker sores, I'm thinking those things may be due to a virus. Pouchitis could be verified with a scope, but I'm not sure Vanco would cause it. Also, 103 was a... [ more ]
Rowans mom Rowan was readmitted on Christmas for dehydration with fever and diarrhea Just so my side of the story is published... I am a complete control freak and this is how I made logic of what went down this month. Rowan 5 year old Jpoucher from UC... Beginning of Dec Rowan was hospitalized for a possible food blockage, after testing positive for c.diff. I was refused a requested ID consult. I was requesting this bc it just didnt seem right to me that she had c.diff never had it before and had not... [ more ]
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J-Pouch ForumsHelp! Need advice now!
What does a blockage feel like?
dennyp3dennyp3
kcmillwright My blockages are usually around my scars try chugging Gatorade helps me break it up stretching and making myself throw up helps too the pain for me feels like stabbing or stretching in my guts [ more ]
Jpouch8888 My blockages sound similar to what you are feeling. In addition to what you described, typically every few minutes or so I will get a gurlging noise and intense cramp for a brief period of time. Also, your tummy will distend. Sometimes I will wait in the toilet for that intense cramp to come. That is typically a good time to try and use the bathroom. Sometimes works. Good Luck! My advice is to walk, drink lots of fluid (hot tea is good), talk very warm baths, go on liquids. If the pain does... [ more ]
CTBarrister Depends on whether it is a blockage due to a physical obstruction or blockage due to ileus/cessation of peristalsis. Blockages due to physical obstruction have a very distinctive sensation based on my experience having 4 complete blockages and 2 partials that resolved. It is best described as a knotted up feeling in a distinct area which causes pulsating pain every time there is peristalsis of the bowels. In other words it is not constant pain but it increases over time as contents build... [ more ]
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J-Pouch ForumsHelp! Need advice now!
BM's very frequently after surgery
DN D. Nocerino
CeeeeCeeee I didn't keep a diary and so I can't remember when things finally slowed down. I believe it didn't happen overnight, though. I always have used food rather than meds to control consistency and frequency. I have nothing against meds at all but eating certain foods works for me. I think it's easier to aim for a liquidy output than one which is more solid. Best wishes! [ more ]
JessGoguen D, I do take imodium and eat psyllium. I even have it on a schedule so I can keep ahead of things. I began see it thicken up once I increased the imodium. I also find if I take these about a 1/2 hour before meals things moves along better. I also cut some things out of my diet for the time being. It's all trial and error for me. [ more ]
Txgal58 D., my doc had me taking lomotil from the beginning; I am 15 yrs post surgery and still take it daily. I've not been one who can "thicken" BM through diet, the lomotil just slows things down a bit. Sounds like your experience is normal. Your pouch will stretch and learn how to function better over time! I still have "oopsies" every now and then but MUCH better than with the UC! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Constipation, why so?
GW Guy with j pouch
Solomin There could be many reasons why you have constipation. It could be related to diet. You could be suffering from pouch disfunction. I am in the same boat as you ; I had a defacography, where they insert barium through the anus and watch how you go to the toilet (empty). Another test was CT enterography. I also has a barium test where I drank the stuff. By having the tests above done, it was determined that my pouch is not in a correct shape, and that the constipation is due to its shape. Ask... [ more ]
Guy with j pouch Did all kind of checks, including MRI, scope and Manometry. The only thing they found is I have fissure, which is caused by constipation. No stricture. My question is why I get constipation at the first place? I thought all j pouchers always have watery stool.... Right now, in order to empty the pouch, I use an anal cathether and irrigate the stuff out... Just wondering what caused the consptation... Thanks. J Guy [ more ]
SM Maybe talk to the doc. My son had the same thing--watery to hard to expel. His pouch has changed shape and narrowed. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Abscess?
AyrishGrlAyrishGrl
AyrishGrl A couple days later and I'm still improving. Pain is reduced more every day. I finally tried some Preperation H wipes for the itching and they helped a little bit. When the major itching spells hit though there was nothing I could do but writhe and cry until they passed. My only saving was taking my Percocet every 4 hours and sleeping most of the time. I will take pain over that any day of the week! I am still draining from the biopsys but it is getting less. I switched to the Vicodin today... [ more ]
AyrishGrl I am taking 1 Benadryl with my pain meds since Percocet makes me itchy in general but the anal itching is an entirely new torture. At times it actually has me squirming in an agony of itching sensations. I wish I had thought to ask my surgeon yesterday for something when he called to check on me but it wasn't real bad at that point. We have some Calmoseptine but I don't know if that would help or if it would be a good idea. [ more ]
Jan Dollar Some people like Epsom salts, but I don't know if that would reduce itching. Does she have any topical anesthetic like lidocaine? Oral antihistamines might help, Benadryl. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Maybe crohn's????
B beckysmom
beckysmom Hi. And thank you for asking! I sent you a pm. More testing. Thank you again. [ more ]
LionsPride How is she doing Susan? [ more ]
beckysmom Thanks CT. We are hoping for the best. After 9+ years, she has never tested positve for crohns either and has never shown inflammation anywhere else till now. The problem lies not with the diagnosis title, but the treatment.....my daughter had life threatening pcp pneumonia when she was 10 and on immunosuppresant meds. Therefore, she had to have surgey rather than risk it again with remicade, etc. IF she has crohns, I don't know how it could be treated since no one has ever wanted to try her... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Help with Kaiser ASAP
Lynne2Lynne2
Lynne2 Liz and Jan, You bring up excellent points that are rooted in real experience and knowledge. Your posts are so helpful to me and I will include your ideas as I prepare my notes for meeting with a more experienced surgeon next month. If I learn anything new to add to the conversation,I'll post when I get back. I'm grateful for your help and am wishing you very happy holidays. [ more ]
liz11 Lynn. so sorry for all the difficulties in your decisionmaking. Are they sure you have crohns? From what I understand.. in the simplest sense, is that if a jpoucher has crohns and then the jpouch is removed... if crohns wants to keep attacking then it only has the bottom of the small intestine and onward and upwards. That can become dangerous. Dr. Shen said that they worry very much once a jpouch is removed if they find crohns.. because those cases become difficult and potentially very... [ more ]
Jan Dollar I think I can address your question. Sure, the goal is to preserve as much small bowel as possible, even if it is not fully functional, and here are the reasons: Surgery does not cure Crohn's and most Crohn's patients eventually need surgery, often multiple times in their lives. There is a limit to how much small bowel can be removed before health, and even life is threatened. So, the younger you are, the more of an issue this is. In addition, there is a tendency for Crohn's to recur after... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Seeds, nuts and dried fruit!
K KiwiPoucher
Scott F There are some meds that have off-label uses with different dosing trade-offs, so they may be mindfully and reasonably exceeding the labeled max dose. OTOH it sure sounds like it's not very effective for you. [ more ]
KiwiPoucher Thanks for that Scott. Have googled it and you are right. Both my Surgeon and Gastroenterologist said there is no upper limit and in hospital I was taking 28 some days. Think I will write to my Gastro and query it again. [ more ]
Scott F I'd advise against taking 20 loperamide in one day. The maximum safe dose in 24 hours is 16 mg (8 tablets). If it's not working for you, perhaps a different medication would be worth trying. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Modern Western Medicine vs. Natural "remedies"...
RJGRJG
RJG Hi Ms. Frustrated. I'm glad you appreciated what I wrote and the responses. I have the tendency towards writing much more than most "Americans" wish for reading; always a bit personal. However, I believe the issues of and around and preceding the J-Pouch are horribly personal and isolating that part of relaxing around this incredibly personal issue is hearing from within another person with similar experiences... Although I have the tendency towards writing much and very personally, I tend... [ more ]
FrustratedButFighting very good points you made here! Interesting read, thank you. [ more ]
RJG Thanks for your responses Sue. [ more ]
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William J. Johnson
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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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