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J-Pouch ForumsHelp! Need advice now!
Obstruction
P phonix2g
ladyjane I also have bowel obstructions that send me to the ER. I've had 3 in the last two months! My last CT scan showed lots of adhesions which I understand can attach the intestines to the bowel wall. Maybe this is the pain you are feeling. [ more ]
Ljz I just want to add, though by now I hope you're feeling better, but following a blockage, there is often continued pain. My doctor explained that the continual motion of your intestines keeps on pushing and pounding the tissue during blockage. That can make it swell, and feel bruised. I found it lasted several days with long, severe blockage, and just one day with a shorter (6-10 hour) blockage. Not sure that is the pain you're having, but blockages do cause residual pain. [ more ]
GinLyn Sounds like at least a partial obstruction still, or some damage. Time to get it checked out. Gin [ more ]
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J-Pouch ForumsHelp! Need advice now!
Loud Gas
T tiffanygoad
Lesandiego Picture your pouch like a "water balloon".... if you lay on your side, the stool sinks to the bottom and gas rises. Generally about 99 percent of the timer I can release gas without stool if I lay on my left or right side. [ more ]
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J-Pouch ForumsHelp! Need advice now!
ADHESIONS
ladyjaneladyjane
AllyKat Yes I had it 4 years ago. Still get some minor blockages here and there but nothing like before I had it done. [ more ]
Megals I had it done about 8 years ago. They were able to do everything laparoscopically (this was before my j-pouch was created though) hopefully they'll be able to do it this way for you. The recovery time was very minimal, though I did has some discomfort for about a week after. Best of luck to you and I hope it helps! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Stricture on CT scan?
M Megals
rachelraven Next time try milk of magnesia. It's non-stimulating. It's the only thing I can take that doesn't cause horrid cramps but I only need about 10mls, though, a full dose is too much. [ more ]
Megals It's very frustrating! I finally took dulcolax tab (had tried miralax several days ago) within about 2 hours I had a watery BM. Now I can't stop going and the burning is horrible. I feel like I can't win [ more ]
jeane I have a stricture and have your exact same symptoms. I had a ct scan a month ago to check for a fistula and nothing in my report indicated anything about a stricture. I would contact your gi. I get mine dilated every six months or so and I am going in next month as I have been struggling with mine acting up for over a week also. It takes several passes and straining to empty and when stool is formed it is very thin also. The symptoms are just miserable. [ more ]
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J-Pouch ForumsHelp! Need advice now!
how long to wait for takedown surgery
K kdmos75
bladen88 I had my takedown 3 weeks after my first surgery but like everyone else depends on you as well as your doctor I feel as though I should have waited longer bc I ended up having two blockages from scar tissue and swelling after the second I was put on a TPN until it went down about a week and a half the first blockage was a bad situation I didn't get to see my doc but an associate of his and she didn't seem to care as much good luck to you! [ more ]
rachelraven Back when I had mine done, my surgeon used to ask me about the mucus discharge the J pouch was putting out, while it rested. At first, the mucus was more, then it slacked off. He used that "slacking off" as his indication for takedown... mine was almost 4 months to the day between first and second surgeries. Diet after? I was 19, and probably not as careful as I should have been (and pretty much ate whatever I wanted for the longest time), but I'd say hit your thickening foods at first... I... [ more ]
grandmaof1 I had mine done at 7 weeks. I ended up in the hospital 4 different times for dehydration and so the forth time she checked to make sure there was no leak and we went forward. She told me she had never done any that early so it would depend on the results of the pouch. Well she did a great job in both of my surgeries. She is so awesome. So 7 weeks for me. I am almost 2 years out. I also went home with a PICC line and glad I did. The reason I was in the hospital is because of dehydration. It... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Headed for a possible operation to eliminate J-pouch
B BarbC
Jan Dollar Barb, I presume your surgeon told you that incontinence was a possible complication of sphincterotomy? Sometimes it is permanent. That is why Botox injections should be preferred before surgical sphincterotomy. At least with Botox, the effects wear off after about 3 months. Hopefully, you are still in the period where this symptom can turn around for you. Nerve trauma can take 6-12 months to repair itself (if it is going to). In the meantime, you have to wait and see. Maybe at least a temp... [ more ]
Solomin Hi, I currently have a temporary ileostomy and I pass a white opaque fluid rectally. I am told that this is mucus. Perhaps it is same thing that you are passing. Good luck. Solomin [ more ]
CeeeeCeeee I was 60 when I had my first of two steps and am now 73. I consider myself lucky. My J-pouch gives me almost no trouble and when it does a course of Flagyl takes care of it all. Best wishes in finding the best answers for you. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Jpouch removal
heverhever
hever Hi everyone, thanks for your replies, I've decided that should I need one more adhesion op then I'll have the J-pouch removed, sick of the constant toilet trips and butt burn, plus the specialist said my bowel,which now has a partial prolapse is massive,due to all the work it has performed over the years, and it would have alot less work on the bag. I have been depressed lately as all my meds were stopped for a year due to bad liver blood tests, but now have been restarted a few days ago, so... [ more ]
PoucherInTO Hi Heather I am 34 years old, had the jpouch for 18 years and had it removed almost 5 months ago. Anal pain, incomplete emptying (the jpouch can "fall" making is impossible to empty), chronic pouchitis plagued me for years before making the decision to go permanent ileostomy. I have ZERO issues with my ostomy, no issues with quality of life. I do what I want to do, eat what I want to eat and wear the clothes I want to wear. I don't even feel the bag anymore, and unless its full and time to... [ more ]
BillV Heather, high grade dysplasia in a critical area made it necessary to have my 30 year jpouch removed. I strongly wanted to avoid having the bag, which was a quality of life issue for me, and I was fortunate to locate a surgeon who removed the J pouch and gave me a BCIR (similar to a Koch pouch). The most difficult part of the surgery was the pouch removal due to significant dense adhesions from prior operations. My surgeon never mentioned anything about a long term pouch creating its own... [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-pouch rupture
R Riley
skn69 Riley, One word: Girlfriends. You are a fantastic guy and I hand it to you for being so loving and supportive but she is going to need her female support group too. Sisters, girlfriends, mom or aunt or whoever it is that she calls when she has a problem with you. (yup, us girls call each other when the guys get on our nerves)...I love my hubby but no matter how often he rassured me or showed that he desired or cared for me the bottom line was that I needed my sisterhood. Yes, to group... [ more ]
L.DL Riley, You are truly an amazing man for being there for your girlfriend, I commend you for that. This is gonna be a difficult journey for both of you to go through. It's nice of you to be as well informed about her illness as you can, that will help you to better understand what she is going through medically, but as for the emotional part, find out if there are any group therapies in your community that you can both attend.Ask at the hospital or the ostomy department they may be able to... [ more ]
L.DL Riley, You are truly an amazing man for being there for your girlfriend, I commend you for that. This is gonna be a difficult journey for both of you to go through. It's nice of you to be as well informed about her illness as you can, that will help you to better understand what she is going through medically, but as for the emotional part, find out if there are any group therapies in your community that you can both attend.Ask at the hospital or the ostomy department they may be able to... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouch advancement surgery
G Graemek
Graemek Thanks a mill Jan! I appreciate all the bother of reading my posts. I looked into it and the new surgeon seems to be very highly recommended and has just returned from a stint at the Cleveland clinic, which I've read is the sort of Mecca of j pouch surgery? There is also the option of traveling to London which is covered under HSE(Irish healthcare) if the need should arise. I'm okay with a temporary ileostomy, had it for a year before and once it's healed its do able. A new problem has... [ more ]
Jan Dollar As lovely as it is to sit around watching Game of Thrones, I am sure you would like to be accomplishing a few things. I agree with you that it seems like there is a bit of a rush to surgery without a full evaluation to see what is happening in there. Sure, you now know there is a functional/structural problem and that will need repair. But, it would also be useful to know if there are other challenges going on. It would seem to be a real shame to go forward with surgery only to find out... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pain 10 weeks post pouch surgery
A AliceMay
Kashi That is very similar to what I'm experiencing. I did not have this pain as early on as you. Also, I don't seem to notice it as more - or less - after any certain food. [ more ]
wsh6745 What kind of spasms are you talking about? Is this common? I have been getting severe cramps recently and it doesn't seem to depend on what I eat. For example, today I only had an Ensure shake (Ensure, banana, a little peanut butter, fiber and ice all blended up). I have had this pain episode about 4-5 times today but sometimes it is 10-15 times in one day. It is a severe cramping type pain that almost brings me to tears. It is really sharp, feels like it is all around my stomach, it lasts... [ more ]
Jan Dollar It is not uncommon for digestive symptoms to erupt as you advance your diet. Mostly, it is by adding more adventurous foods too rapidly or increasing your portions too much. Basically, if you eat more than you can readily digest, the bacteria work on it, causing gas and churning in the gut. You can try scaling back on your diet (carbohydrates in particular). Another thing to try is digestive enzymes, as some people get good results with them. Probiotics may help balance your gut bacteria,... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Internal Pouch - Low Iron + Supplements
A Ashman
Ashman Been using this Sytron Elixir for a few days now. So far no issues. It does leave an odd taste in my mouth but i suppose that's normal for all liquid iron supplements. Also i am starting to feel better now i'm taking the Metronizadole. Just so you know, the Sytron is Sodium Feredetate. [ more ]
Ashman So i saw my doctor today. I was given metronidazole and another iron supplement to try, this time it's Sytron Elixir. I've tried Ferrous Gluconate, Sulphate, Fumerate in both tablet and liquid form. Nothing works, it all affects me the same. [ more ]
mgmt10 I have on going anemia issues. However I'm not bleeding...it's more of an absorption problem. Oral iron doesn't help me plus its harsh for my stomach. Iron infusions seem to be the only thing that helps me. I see a hematologist for this. [ more ]
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J-Pouch ForumsHelp! Need advice now!
No Control of Bowels 6 months after takedown!
K Ki
Ki Surgery for the ostomy is scheduled for Thursday here in Philadelphia. The tailbone pain is being controlled by the Belladonna Suppositories Dr. Shen prescribed. My question for anyone is...should the tailbone pain go away once he has the bag? No one is even sure why it is there? [ more ]
Jan Dollar They will do the ostomy if indicated, and it may well be at this point. I wonder if there was a perforation or something, as this sounds pretty serious. But, the good news is that he is in the best possible place. Sending all the good luck I can muster! Jan [ more ]
Bebekspor I hope they get him some relief ASAP! [ more ]
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J-Pouch ForumsHelp! Need advice now!
GI or Colon rectal surgeon
K kk
Jan Dollar True and false. True that a GI does not make j-pouches. But false that he cannot know enough to treat them. A GI is trained in medical management and might be more apt to consider a variety of treatments. It all depends on how well the surgeon and/or the GI stay up to date. It seems rather arrogant of a surgeon to assume he is the only qualified provider. That said, yes, many GIs are not well informed about j-pouches. Why is that? Also, many surgeons do not seem interested in maintenance... [ more ]
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J-Pouch ForumsHelp! Need advice now!
completed 1st,2nd step for pain/breakout/whats next
K kk
Jan Dollar Yeah, we walk a fine line sometimes. Partly because we are sick of seeing doctors, and partly because we can worry about being perceived as hypochondriacs. Not likely, since we have so many things go haywire. Half the time I wish I WAS a hypochondriac, rather than have these things going wrong with me! Sometimes waiting pays off and whatever it is goes away. Other times, not so much, and I wind up at the doctor's office or worse (the ER). Jan [ more ]
kk Thanks Jan. Thank goodness I do have a high tolerance to pain so I am not one to have something going on/start thinking what is wrong with me. That is why w/bowel obstruction I suffered for a wk/dealing with it thinking it was a virus. Then after being put in hospital after going back/forth to doctor and what they were doing was not getting me anywhere I finally said I don't know what but something different needs to happen. Even after hospitalized did not get better/got in worse shape/asked... [ more ]
Jan Dollar I do understand. Sometimes we have to just let the focus be off of us for a change, as long as we know that nothing serious or dangerous is going on. I can handle pain, as long as I know that I am not making myself worse. There have been a number of things like unexplained pain or rashes that I just have to chalk up to a big question mark. So, I just plan my life and expect things to work out. Sometimes I get blindsided, but usually not. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
CDIFF! AGAIN!!
Lindsay~n~SDLindsay~n~SD
desisn00ps Can you please consider fecal transplant either locally or in NYC or Cleveland Clinic? I've heard about amazing results and this might just do the trick for you. [ more ]
BENNO__64 Ok, thanks Rebecca. [ more ]
TE Marie Sorry, I omitted that I took at least 5 courses of Flagyl to finally get over my c.diff. I was discussing it on a different thread and thought I'd talked about it here too. I edited my above post. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Are these really the effects of a block?
K Kris1979
ElmerFudd Hard to say, really. A blockage will cause pain, increasing in frequency and intensity - so if that was what it felt like, that's probably what it was. Getting that NG tube is kind of a last-resort but usually brings relief. Not surprising your CT and x-ray didn't show a blockage. They are hard to see on x-ray. If you had happened to drink a bunch of barium and then had your x-ray when it happened, it would have been visible if there was a problem. That is why often doctors will schedule you... [ more ]
Scott F Others can share their experiences, but of course this isn't normal. The key questions to pursue, I think (though you might not get satisfactory answers) are 1) what caused it, and 2) is it likely to recur? It might just be a one-time thing, whatever caused it. I hope so. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pain at stoma site
D Dj77
ElmerFudd At four months, that site can still be a little tender. And given the adhesions that are probably there (even if they aren't causing any blockages), when he moves it pulls on the already-sore area. So I'm not that surprised. The pain around my stoma site has lessened over the years so I really don't notice it at all. Steve [ more ]
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J-Pouch ForumsHelp! Need advice now!
Remecade IV? Worth the scary risks?
L LorieSly
ElmerFudd Sounds to me like the surgeon wants the inflammation in the rectum down prior to surgery to make the anastomosis (connection of j-pouch to the rectal cuff). Severe inflammation could make the rectal cuff more prone to bleed, harder to work with, etc. After my surgery, my surgeon's associate visited and said my "path" (pathology) was not typical. I had a LOT of inflammation in my rectum and he asked if I had been having trouble prior to surgery. My surgeon has a real issue with steroids... [ more ]
Jan Dollar If it helps, this article indicates that using Remicade before surgery does not increase surgical risks. http://onlinelibrary.wiley.com...7d34c94dbd6f056ad94a Jan [ more ]
LorieSly I appreciate your taking the time to reply and encourage. Time will tell if this treatment will reduce inflammation enough for surgery. We will scope after two to see if we need a third or more. Hopefully not. Again, thanks! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Lack of feeling - urination and rectum
W wsh6745
wsh6745 Thanks CeeeeCeee - this makes me pretty nervous. Since it takes effort but I am able to go - I think your post is saying I should give it a couple of months to see if it resolves, or if it gets any worse, go to my doctor and ask about the self catheters. Did that hurt to do? [ more ]
CeeeeCeeee I had complete urinary retention after Step 1. I've met others who have also experienced this. I saw a urologist. He set me up with an ET nurse who taught me how to self catheterize. What a relief that was! Every 4 hours or so I'd empty my bladder by self catheterization. I began appreciating not having to wait in line for bathrooms while keeping my legs crossed. The urologist told me to try to urinate naturally a little bit before self catheterizing. He had me measure my output and liquid... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Stricture/Scar Tissue/J-Pouch/NOT HAPPY!
13 Years & Counting13 Years & Counting
13 Years & Counting Glad to hear she's doing somewhat better. I really admire her determination through her illness! We had absolutely no snow yesterday!! I'll take the freezing cold over snow any day at this point! Thank you again for your good thoughts! [ more ]
beckysmom Glad to hear you are feeling better! I agree the snow for everyone is too much, but it's temporary so that is good Thank you for asking, my daughter is doing somewhat better. I wish she was finishing this year, she has 3 more to go, it's a 5 year program. I am proud of all she has accomplished! [ more ]
13 Years & Counting Beckysmom,Thank you so much for checking in! Yes, I'm done with the dilations...a total of 3. Feeling much better in my belly, not swollen & tight. Still experiencing some difficulty going to bathroom. Not sure if it's do to a lower stricture near the "exit" (which seems to be a recurring thing) or something else. I'll follow up w/ my GI doctor in NJ. Last procedure was at Carnegie Hill Endoscopy instead of the hospital. MUCH nicer experience & if I ever need to go through this again... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Anxiety
Rosie128Rosie128
liz11 and calming music... with headphones. [ more ]
Rosie128 Thank you Mary. I will try the breathing right now, and the scented candles soon. I love the smell of lavender, I can imagine it will be calming! [ more ]
MaryL I have had anxiety for years. I have found a few things that have helped and I would like to share them with you 1) when I get them, I take a deep breath inhaling to 5, then hold it for 5, then exhale for 5 (seconds). It helps enormously. I also use vanilla candles or lavender, they have a very calming effect. Hope these help you. Congrats on the baby!!! [ more ]
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J-Pouch ForumsHelp! Need advice now!
5 months after Reversal Surgery
E EddieW22
EddieW22 Good to hear things are improving with you. I did have the glove test done at my colon and rectal doctors appt and the doc said everything seemed normal. I will have to ask him about the c diff test. Thanks [ more ]
Pluot Yes, huge. My pouch function is the best it's ever been. I think some things that I accepted as normal for j-pouch (difficulty emptying, spasms, burning feeling during BMs) were actually a sign of underlying issues because they're mostly gone now. Not sure if it was pouchitis, cuffitis, C. diff or some combination. I just hope the improvements continue after I stop taking antibiotics tomorrow. If not a scope you can check for C. diff with a stool sample (make sure the sample is tested... [ more ]
EddieW22 I have not maybe I should but I really hate that scope. I read your blog are you noticing any changes since you have been on the medication? [ more ]
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J-Pouch ForumsHelp! Need advice now!
C Diff test valid while on antibiotics?
BM boy's mom
Pouch4Wf From what I remember there are 2 types of Cdiff diagnostic tests. One of them is a PCR test and is incredibly accurate, 99% or something. If you're interested you many want to ask what type of test was used. Dan [ more ]
Jan Dollar Fecal calprotectin is supposed to be useful in helping with IBD screening and for monitoring of treatment without the need for repeated endoscopies. However, it is not specific to any particular type of inflammation other than GI. So, it could be any number of things. He could have relapsing pouchitis, Crohn's, or other possible reasons for inflammation. The fact that it went up and down would lead me to believe it is more likely an IBD type inflammation, rather than an infection, which... [ more ]
boy's mom I believe the c- diff test was valid. His cal protectin had gone up and now back down again. Trying to understand what made it go up. [ more ]
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J-Pouch ForumsHelp! Need advice now!
beginnng to think i might have ips too
R Rebe0505
Rebe0505 jan i agree i usually do not bother with frequency either but what i am talking about is literally going from 8at night to 8 in morning..in the can all night ..that is what i meant by bd nights.. a good day/evening for me is probably anywhere from 8 to 10 times but maybe only 2 or three at night..i live with that fine because i feel ok too.. but you are also right that figuring out what is what is not easy but i believe more doable since eliminating all simple carbs(starchy foods) it leaves... [ more ]
boy's mom I dont know if you saw an earlier post in which I mentioned that foods high in seratonin impact my son's feeling of needing to go to the bathroom often - almonds are among those foods as are walnuts, avocado, bananas. [ more ]
Jan Dollar Simple, yet complex. How much is too much? And, what you combine can have an effect too. That is why I try not to focus on my frequency as much as how I feel. Of course, there's a limit. You can't spend all day in the can... Good luck with figuring it out! Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Chronic Nausea after Partial Bowel Obstruction
Txgal58Txgal58
Txgal58 Thanks Beckysmom!i have kept some hard candy available as well as some saltines. I think I just expect too much too soon! Thanks for the well wishes! [ more ]
beckysmom Hi. My daughter has had obstructions and it usually takes a few weeks for her to feel better. She is very tender and has nausea afterwards until things get back to normal. Hope you feel better soon. Maybe sucking on hard candies will help with the nausea, seems to help her sometimes. [ more ]
Txgal58 Thanks Ciz81 and welcome Jublilee1962! I have to agree with your posts. I probably am not giving myself enough time to recover. It's not like I haven't been through this before, it's just really inconvenient right now to be off work. I did return to work today and was able to make it all day. The nausea seemed better but perhaps I was so busy I didn't notice it as much. Jubilee, doesn't your Dr want to find out why you've had so many obstructions? Mine talks like if this continues he will go... [ more ]
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J-Pouch ForumsHelp! Need advice now!
ongoing issue with needing to go to bathroom every time i put food in my mouth
R Rebe0505
Rebe0505 hmmboysmom interesting findings..my serotonin levels already been adjusted for years i guess take prozac 20 years now..prozac works on the serotonin receptors.. but i eliminate all simple carbs now and most dairy(sibo) but do eat a lot of bananas as well as alvocados..so maybe ..it just might be more complex for me but thanks for info.. [ more ]
boy's mom REBE0505 - I followed the link Jan posted about gastrocolic response and it notes that seratonin induces the response. For the last two days I have cut avocados and bananas out of my son's diet as those foods are high in seratonin ( along with chocolate, pineapple, walnuts, kiwi, tomatoes) and his bms have deceased slightly and he has not rushed from the table to the bathroom. (He was already not eating the other foods.) [ more ]
TE Marie Thanks Jan. I take heavy duty probiotics too. I've wondered about SBO too. I just got over a week of antibiotics and the last time I needed to take them was in November. I think I'll email my GI and inquire about SBO testing. [ more ]
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J-Pouch ForumsHelp! Need advice now!
possible obstruction?
S Solomin
Jan Dollar It depends on how persistent this is and/or if it is escalating. If you are worried, but do not want to sit in the ER unnecessarily, you can call the ER department and ask to speak to the advice nurse. She could tell you whether you should come in or not. It does sound like a partial obstruction, but perhaps not critical (yet). I definitely would stop solid foods at the very least. You can try massaging your abdomen to see if you can coax some stool through your stoma (the typical site of... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Blockage/Cramping Question
W wsh6745
wsh6745 Thanks for your replies. I will try to do a clear liquid diet today and my husband just went to get me some white grape juice. Thank you. [ more ]
dawn58 Try some white grape juice. Helps with the cramping and blockages. [ more ]
Ljz Hi Wendy! I'm kind if new to this too, had my 2nd surgery and loop ileo on Jan. 9. Some blood is normal around stoma, but I've never had lots. Whenever I wipe it, there is blood, so I doubt that's a problem unless it increases or seems to be flowing. Regarding cramping, that can be caused by sugar, like from pears. I have had to cut all sugar due to cramping. I had blockages, but most likely as long as you are continuing to have output probably not blockage. My understanding is that the loop... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Ulcers on J pouch
Chel RichardsChel Richards
jeane I agree with Jan. I always have ulcers in my pouch. I've never been told I need to remove my pouch due to this. A fistula, however, almost always requires surgery but not necessarily jpouch removal. I also have fissures. [ more ]
Jan Dollar Do you have a fissure or a fistula? If it is a fistula, that is the reason you may need surgery. It is not uncommon to have a pouch ulcer as the presentation of pouchitis, so typical pouchitis treatments are usually prescribed for that. Jan [ more ]
Txgal58 Wow! You actually had a colonoscopy? Do they have any explanation for the ulcer? I'm not familiar with that; I've had my J-pouch for 17 years. I had a fistula repaired as a day-surgery procedure a few years after my takedown. I hope they find answers for you! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Jpouch Diets
L LilMoe03
MarkGregory Diarrhea and lots of gas sounds like he has bacteria overgrowth. FODMAP, SCD, and GAPS diets are something to search the net about, that may help with this problem. Generally, the idea is to not eat things that feed the bacteria such as sugars, complex carbs, etc. Is he lactose intolerant? Is he fructose intolerant? It could be lots of things causing problems, and will take some detective work to find a diet that may help. And it may be he he needs a round of flagyl or such to get things... [ more ]
skn69 Thinckeners include, peanut butter, bananas, apple sauce, bagels, rice, pasta (whole grain works well too), oatmeal, etc Citrus can irritate and should be avoided if you are still really sensitive, ditto for grape juice, prune juice etc but tomato juice is great and full of potasium to help with dehydration. Astrigient foods help too...I have just learned that if you boil the skin of a pomegranite (very astringient) and drink it then it will stop severe diarreah practically immediately. [ more ]
Jan Dollar The proper diet varies from person to person, based on individual tolerances. Keeping a food diary should help. You can also start with the Dietary Guidelines link above for some basic ideas. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pill Coming Out Same As It Went In!
C CeeeeCeeee
Scott F There are many different methods used to delay pills from starting to dissolve (in the stomach) as soon as we swallow them. In addition, we each have very different transit times. The trouble is that neither your doctor nor your pharmacist will know for sure which of these formulations might work reliably for you. My answer is a bit more ambiguous than TE Marie's (I'd say "sometimes"), but it ends up at the same place. I don't take delayed release or coated pills, because they may not be... [ more ]
TE Marie No [ more ]
boy's mom Is extended release different than enteric coated? Do J pouchers do OK with enteric coated? Thank you. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Rock vs Hard Place
LE Linda E
Scott F Txgal, are you also taking the Tylenol #3 for pain, or just for the effect on the gut? If not for pain, then the acetaminophen in the Tylenol #3 is unnecessary and inappropriate. The codeine in Tylenol #3 may be helping you, and just codeine would be the more appropriate prescription, IMO (though I'd try Lomotil first, if you haven't already). [ more ]
Txgal58 Linda E., I completely sympathize with your situation. I train new employees 6 hours a day for 3 weeks. It does become an issue when you can't leave the classroom. I have even stopped eating lunch because I know I will have to go later on if I do. I take Lomotil about 4 times a day and Tylenol 3 twice a day to control my bowel movements. I have always had diarrhea; diet and medication only affected how many times I went. The Tylenol was just added last year and with Ambien I take at bedtime... [ more ]
Lew Thanks for the info Jan I'll look for them. (I must admit that I've learned a lot more respect for my daughter after starting this diet. It is the hardest one I've ever tried. It'll take all of my willpower to stick it out for the 6-10 weeks. I don't know how she did it for the 12+ weeks). I'm only in my second week. Constipation is not an issue but I have increased my Metamucil for bulking due to some diarrehea in the afternoon. It's not going to be a fun time but I'll have to stick tour or... [ more ]
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J-Pouch ForumsHelp! Need advice now!
need advice on best anal fissure care
R Rebe0505
Rebe0505 thanks ladies.. [ more ]
Debra I use diltiazem/lidocaine ointment on a gloved finger to gently dilate and stretch a stricture at my anastamosis (right at the inner sphincter) which tends to spasm and cause my fissures to recur. Because my fissures are chronic, the likelihood of botox (used to relax the muscles and prevent spasms) or surgery to excise the fissure, to be successful are diminished, and I am reticent to risk the chances of worsened incontinence. There is a fissure support group online @ anal-fissure.org [ more ]
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J-Pouch ForumsHelp! Need advice now!
Liquid output and urgency
C Cézanne
Jan Dollar Everyone has gas. I don't mean all j-pouchers, but all people. The difference is that most people can fart without loose stool coming out too. The average person passes flatus 13-21 times a day. Most gas is caused by bacterial action on undigested carbs, so that is why we are always talking about reducing carbs and improving the gut flora. http://digestive.niddk.nih.gov/ddiseases/pubs/gas/ Jan [ more ]
TE Marie I take VSL#3DS and added the s.boulardii after my c.diff infections that would not go away. I tested positive for c.diff while taking VSL#3. So I take both probiotics daily. The 2nd is not expensive at all. I refrigerate it after I get it but it's not required. The bottle says it will extend it's life if you refrigerate it. So that is the rest of the story. I also have the explosive gas but think that is normal. Mine comes after I empty my pouch and sometimes I bend over several times to get... [ more ]
Rocket Pluot, I notice that you are not currently on any Meds acording to your profile. Gosh what is that like? Many times I have to run to the bathroom just to pass gas and it sounds like an explosion. Some stool comes out but that is it. Consequently, even though I go to the bathroom, and nothing more will come out even if I try to force it out, I am back in the bathroom within an hour. In your opinion, do you think a poor diet is the culprit? Rocket [ more ]
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J-Pouch ForumsHelp! Need advice now!
What is going on with me?
HockadooHockadoo
ElmerFudd Prolonged use of NSAIDs can cause pouch and intestinal inflammation, so that is a no-no. However, occasional NSAID use may be more helpful than not - but you have to know your body. I actually find that when I take them, they slow my gut - unless I take them for multiple days. Then, I start to have some issues. Steve [ more ]
TE Marie My adhesions are still here and still hurt. I was told they don't operate on adhesions as to do so would cause more adhesions, unless they are causing problems, such as obstructions. You might want to do a search on the topic as we have discussed them here before. I still am not happy at the learn to live with them answers I get. They do say them in nicer words but that's the real life translation. All I can say is Super Digestive Enzymes helped me an others on the board and you need to give... [ more ]
Jan Dollar Adhesions never "go away." But, what does happen is that your gut settles down and adapts to them. This is evident in the fact that as more time elapses since your surgery, the risk of obstruction lessens. Still, the risk is never totally gone, so you should always be mindful and chew your food well (as your mother surely taught you!). Sometimes though, when symptoms are persistent and/or severe, surgical intervention can be necessary. Another possibility, but less likely this far out, is... [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
Blood after surgery
BebeksporBebekspor
Jan Dollar My cuff inflammation resolved in the first few months, but returned again later as a chronic condition. Jan [ more ]
Bebekspor Would rectal cuff inflammation go away on its own? The surgeon said unless there's a lot of blood or clots, not to worry. I didn't have any today. Katie [ more ]
Jan Dollar It could be your rectal cuff is still inflamed. But, since there was enough bleeding for there to be a clot, definitely touch base with your surgeon. Sometimes there is a little "bleeder" in there that can get worse if not attended to. It can happen from all the BMs and straining with the diarrhea. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Cephalexin 500 mg
H hopetofeelnormalagain
Jan Dollar Well, it is not just cephalexin that can lead to a C. diff infection. It is pretty much any antibiotic except Flagyl or Vancomycin. The question I would really be asking is why on earth would your doctor prescribe antibiotics for the flu!?! Antibiotics are totally inappropriate for a viral infection. Unless you had a secondary bacterial infection, I just do not get it. I was put on IV antibiotics when I was hospitalized in December for a presumed virus, but they could not figure out what was... [ more ]
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J-Pouch ForumsHelp! Need advice now!
hair loss whilst tapering prednisolone
winter wishwinter wish
draegs My hair started to thin and fall out while on prednisone...even while tapering off of it. Eventually it did return to it's original state though. [ more ]
winter wish Thanks Jan. Its been falling out over the last 4 months and still hasn't stopped hoping it will soon Linda [ more ]
Jan Dollar I am certain it is not just the prednisone taper, but also the amount of time you were so sick that you needed the prednisone! I have not had any issues with hair loss with short term use or low dose. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
J Pouch and Gastric Sleeve = I don't know what's wrong
TheaThea
Jan Dollar Yes, arthritis is the most common extra-intestinal manifestation of IBD. http://www.ccfa.org/resources/arthritis.html It can be quite insidious too. Mine started 30 years ago with bouts of tendonitis in my elbows and wrists, then came plantar fasciitis and Achilles tendonitis, followed by knee pain when I was around 40. A few years later came the low back/upper buttock pain. Then I was sent to the rheumatologist and was diagnosed with enteropathic arthritis, a form of spondylitis. I am now... [ more ]
Thea Thanks so much for the info, my Dr won't give me antibiotics without seeing me mostly due to the fact that I have a long list of meds that no longer agree with my insides. I have never experienced pouchitis which is prob another reason. I did get some MiraLax this afternoon it has helped some. I'm trying to just deal because I do not want any part of the ER...I'm going for my yearly physical next week I am going to ask for a full blood panel including for pre menapause. Is joint pain common... [ more ]
Jan Dollar Being 40 and night sweats sounds a lot like me until I turned 50 and my periods stopped. Yep, I had 10 years of perimenopause with night sweats and hot flashes with the smallest amounts of alcohol. I wasn't in full on menopause during that time because my hormone levels were reportedly OK, at least during the moment my blood was drawn to check them. Many of your symptoms could be partially or completely due to perimenopause, but the fact that you've lost both your colon and most of your... [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
Feeling so lost, please help!
EricEric
liz11 The products josh mentioned are good. But taste DISGUSTING. I have tried ceralyte.. it is a true WHO solution. But I couldn't tolerate the taste. I now use Jianis Brothers packages of oral rehydration salts and mix them with crystal lite. This is very cheap too. That is ALL I drink (well other than the occasional wine or beer!) Also yes.. peptamen. I was on that with that ileo #3 that I wrote about earlier. Peptamen Prebio is the one Dr. Shen put me on. Extremely expensive, but he knew the... [ more ]
skn69 Hey sweetheart, Just been surfing and happened on your post...I am so sorry that this whole situation is not getting better but worse...I do know how bad it is and how bad it gets sweetheart and you need a close loved one to help you walk your way through this all. I started having those chest pains a couple years back...just like you I had started to clean my house when...Boom, chest pain, couldn't breath and then panic...turned out that in my case it was my galbladder that had gone... [ more ]
Goody2shoes You do have very positive thoughts underneath it all !! Try to be positive and stay positive. I wouldn't worry about 'only' having 13 feet of small bowel - that is 4 metres, and that is actually double the length of mine !! [ more ]
See all 9 replies...
J-Pouch ForumsHelp! Need advice now!
Frightened fellow looking for encouragement after take-down surgery :(
F Fredrik
Scott F Most of us will never risk a fart off the toilet again, at least not on purpose. A few folks here seem to manage it, and I envy them. OTOH they often describe astonishing postures to accomplish this, so perhaps it's NSFW anyway. That means that the best way to minimize the nuisance of this is to minimize the gas production. You'll have to experiment, and re-experiment as your body changes over the coming months. Several big factors include diet, air swallowing, and soda consumption. People... [ more ]
Fredrik ElmerFudd, or Steve, my doctors didn't explain these things to me either properly. I understand exactly what you mean when you say that stretching is only one among multiple factors (gas, healing, bacteria). Say gas for instance, I do find it somewhat problematic. It's not that I've been particularly gassy after the operation but it causes other problems. The first one is that it can be quite painful as the gas goes down through my intestines . The second problem is that it can in a sense... [ more ]
Fredrik Hey everyone! I want to thank you all for reading my story and sharing your own experiences and tips. I am very sorry for not getting back to you sooner. Perhaps it's a good thing though. The last couple of days when I wasn't here talking to you guys I have been doing quite well. Day 8, I was in constant discomfort and it really broke me. It wasn't really pain. It was just constant discomfort and that can maybe be worse in a sense because it's not really treatable like pain. That day I cried... [ more ]
See all 13 replies...
J-Pouch ForumsHelp! Need advice now!
Scared of due to being pursponed
L L.DL
Lesandiego WOW! You have had a very unfortunate journey with so many complications. My prayers to you that your future will be less bumpy. [ more ]
Jan Dollar General discussion is a good place. May I suggest that you start a new paragraph for each new surgery or complication? It is difficult to follow the story in one huge flow of worrds like that. It seems that you have had a multitude of serious complications. Sometimes, minor misjudgements turn into huge complications. Once you are weakened, you are sort of "set up" for a cascade of unfortunate events. Having a Crohn's diagnosis would help make more sense of this, but it sounds like they have... [ more ]
L.DL So sorry Jan, again I'm new to this sight n well when I start writing I go on n on because a lot has happened n is still happening. I touched the post button by mistake but probably was a sign... I get carried away writing not because I want to but I would your opinion, or someone in a similar situation. Where do I post my long story? My story is complexed and I could benefit from the support on this sight. I'm just afraid of writing to much [ more ]
See all 5 replies...

Join Us!

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William J. Johnson
bjohnson@j-pouch.org

Bill Johnson founded the J-Pouch Group in 1997.

After a life long battle with Ulcerative colitis, Bill finally had his colon removed and was given an ostomy in 1993. A failed attempt for a j-pouch and then many surgeries to get back his health gave Bill the motivation to create a web site dedicated to giving support to patients who have had or are considering j-pouch surgery.

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