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J-Pouch ForumsHelp! Need advice now!
Night time leaks after none
JB Jordan B
Scott F Cutting back on fluid, unless you were drinking quarts near bedtime, seems to go badly for many folks here. The one nearly-universal thing that J-pouchers experience is a tendency to become dehydrated. [ more ]
Jordan B I upped the amount of Imodium and cut back on my fluid intake and that seemed to do the job. [ more ]
JJA Agree-in my pre-challenged sphincter days, night time leakage was my main pouchitis symptom. Had it about once a year in the early years-flagyl usually worked. If not, Rowassa or Cory enemas did the trick. Hassle, but relatively easily fixed. Good luck! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Bleeding 4 weeks post takedown
S sally85
Scott F Hemorrhoids can bleed a fair amount, and they can swell. Do you have a good GI or primary care doc who can take a look? That's better than speculation. In any case, it's important to find a way to stop straining on the toilet. It is doing you more harm than good. [ more ]
sally85 Thanks Scott, can there be quite a bit of bleeding with hemeroids? And also do you get the pressure feeling with it? at the moment it constantly feels like the pressure build up down there is going to drive me mad, it's always the same day and night, and whenever my eyes open at night I fee like I have to go straight away, is this all normal? Sally xxxxx [ more ]
Scott F One possibility is that you may have given yourself hemorrhoids with the straining. You're still figuring out the sensations down there, but it sounds like you're getting plenty of signals that *don't* mean it's time to empty your pouch, but you're going anyway. It's important to be gentle on your body and experiment with waiting longer, even though your new body part may object, and it's possible you may misjudge in the beginning. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Take down or permanent end Ileo?
natenate
Scott F If things work as they usually do, folks can usually go back to fairly normal activities in about six weeks after surgery. There's still plenty to adjust to, but typically those adjustments can be made while living a full life. I felt well enough to go back to work (desk job) after four weeks, but I took the full six, since I didn't like the job I had then. Some folks get complications or have a much more difficult adjustment period. There are more of them posting here than there are folks... [ more ]
Clever1 I've have a "temp illeo" for years now. I've lost count to be honest. I had a lot of issues so once I started to get better I didn't want to go back. But I need to get on with it at some point. [ more ]
LORI726 Hi Nate, So you look crazy young and I will tell you my experience with J pouch surgery. I had my J pouch surgery done in 3 steps after weeks....maybe more like 1.5 to 2 months of living on TPN in the hospital when I was 18. I had step 1 done in August, step 2 done in October, and step 3 at beginning of January. I was in the hospital for a week after step 3 and felt terrible...think it just took some time for my bowels to wake up. At the end of that week, I was eating my usual foods and able... [ more ]
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J-Pouch ForumsHelp! Need advice now!
My GI retired.need a new one in Iowa
H Halo52208
Halo52208 The only other one for the pouchitist was Xifaxan. All it did was clean out my wallet. Problem is I need to find a new doctor to get something else. After the last one, I want to make sure the dr is experienced. I don't know how much my family dr will do for meds until then. Wish I lived closer to mayo. In the mean time I have used my flagyl as i still have refills from my old dr. [ more ]
Scott F Have you tried any other antibiotics? There are a number that often treat pouchitis successfully. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Has anyone had success treating pouchitis with VSL3??
KW Kim W
Scott F At home I mix VSL into some Greek yogurt, and generally add some blueberries and whatever flavor of preserves I'm in the mood for. I use two packets at breakfast and two before dinner. I find it just about undetectable in yogurt. When I'm travelling I sometimes mix it up with Metamucil (orange flavor with sugar), which I take on the same schedule. It doesn't taste that great (kind of like the world's worst Creamsicle), but hey, it's medicine, not snack food. [ more ]
SarahXYZ Scott, that's great to hear about that success. I had to give up on vsl3 because of the cost. I'm currently taking align after a month on Cipro, but I know vsl3 is supposed to be the best. When I tried it I found it unsavory - how do you manage 4 packs/day? also, ditto to what ppl have said about treating vs. preventing pouchitis With antibiotics vs probiotics. [ more ]
Scott F Poucho, I first appealed to the insurance company. After that failed through a couple of steps I appealed to my state's insurance administration, based on medical necessity. That was eventually successful, but altogether it took almost a year. I'd be happy to share the general parts of the appeal letter, which included footnotes from the medical literature. The scary part was that I kept taking it during that year. I think that may have made the case more persuasive, but it was a significant... [ more ]
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J-Pouch ForumsHelp! Need advice now!
What should I do! Specific j pouch Qs
D donutz
deweyj I run half marathons regularly, I think 15 in the past 6 years. I just ran my second full marathon in 4:50:00. I stopped twice for pit stops, short and efficiently in and out in probably a minute and a half. I have managed to run several of my halfs without stopping at all. I usually run my halfs in about 2:15. Hydration is a serious issue that one has to be highly aware of when participating in endurance sports. There is a guy who was recently featured in Runners World, who won his age... [ more ]
donutz Thanks for all the replies and I definitely appreciate the point that the forum isn't a great sample of jpouchers as anyone with a perfectly working one might not need to be here. I'm struggling to choose the jpouch mainly for the reasons listed in my first post. [ more ]
skn69 Hi Graham, Welcome to the board! Yes, you are rather unusual but not exceptionel. Your calorie intake is not a problem...you just sort of have to decide how you want to intake those calories (I did it regularly using animal proteins, nut butters, dried fruits and chocolate, like Jan, my problem is of the 'not eating them' kind)...I don't like carbs that much so my diet is essentially low residue and high calorie and my pouch is very happy that way (that is me and not necessarily everyone... [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch removal vs permanent ileostomy
S Sunflower33
BillV Hi asset, You are wise to be doing plenty of research on your options and obtaining surgical consults. Although I did not have my surgery at Cleveland Clinic, I have read a number of posts from those who had consults and surgeries there with good results. Two surgeons’ names that I have seen mentioned in posts are Dr. David Dietz and Dr. Feza Remzi. I am sure that there are other surgeons there who could deal with your situation. I had my BCIR surgery at Palms of Pasadena Hospital in St. [ more ]
RHolt Originally Posted by Mysticobra: This post ended over a year ago. But to add and I will start a new one later... I am having mine removed on Monday November 9th 2015. I will be sewn up and an end ileo installed. And hell yes I am scared! I know the pain that is coming. Been there done that. But I hope for the best and that it be one surgery and done. Richard. Richard, it is 11/12 and I hope you are recovering well. Did you have an end ileostomy or K pouch? I hope you are doing fine and ... [ more ]
asset Originally Posted by asset: Originally Posted by BillV: Before you call it quits with your j pouch, I suggest that you consider having a consultation at the Cleveland Clinic where they specialize in dealing with problem pouches. If your entire colon has been removed, you would not be able to have a colostomy. Your options would then be a conventional ileostomy, a k pouch or a BCIR. The latter two procedures do not require an external bag and its associated issues. In my case, my j pouch had... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Permanent ileostomy or remicade
C Crystal<3
LHetti Remicade was helpful though. I felt good and only had to go for infusions 6x a year. (Setons were still in the r/v tracts at the same time). For me, I do have a better quality of life with the ileostomy, but I did exhaust all my other options first before making that decision. Permanent is permanent and I was scared too of having issues AND an ileostomy. Praise God that all I have to "deal with" now is the ostomy care. But even then, some people have issues with that. It's a hard decision! Laura [ more ]
Crystal<3 So do you think a permanent ilieostomy gives you a better quality of life? I guess I'm asking because I am just so sick all the time and just want to be able to do the things I want to do minus all the problems .My colerectal surgeon suggests I get a permanent ileostomy but I'm just confused as to what to do..I am waiting for approval for Remicade but just not 100% sure as to what to do.. And also it is great to hear you are doing well..I wish you the best of health [ more ]
LHetti I agree- try the Remicade. I was on Remicade for r/v fistulas and it totally helped me for two years. After that I had to stop and couldn't get back on it, but for two years I did well! I hope it helps you, too. For what it's worth, I now have a permanent ileostomy since I finally ran out of options after Remicade. I have a Crohn's diagnosis, too. I'm doing so well now and just pray that the Crohn's doesn't show up anywhere else. Laura [ more ]
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J-Pouch ForumsHelp! Need advice now!
any ideas? 21-year-old pouch!
P pgslaw
Jan Dollar I agree that this sounds like an abscess and/or maybe an anal stricture. If it was just a stricture, the dilation the doc did would have improved things. Jan [ more ]
Scott F One possibility could be an abscess or fistula that drains a bit. An abscess would often be painful or tender at a fairly specific location. The cloudiness could be a bit of pus. This is just a guess. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Incontinence at night after 18 years
Olive OilOlive Oil
LHetti I now have a permanent ileostomy, but before that I was having lots of accidents at night, too. Kegels, maybe? I also changed my diet and cutting out sugar (except for honey) really seemed to help, too. It's a huge commitment (I did GAPS/SCD) but found that it fixed a lot of my symptoms. Laura [ more ]
DorisR Originally Posted by Olive Oil: its been a while but I'm having trouble so thought I'd stop by. Short story, I've had 13 surgeries and have had a j-pouch for 18 years. I've had occasional accidents at night over the years but of late it is increasing. They told me incontinence could be an issue when they scraped some of my muscles in one of my surgeries...I just thought it would happen in my 70's not my 30's... i had had an emergency surgery last summer for an obstructions and I actually... [ more ]
Scott F Flagyl alone never helped my pouchitis. Cipro was like magic within a day or two. Perhaps it's worth a try? There's no need to stop the Flagyl to do this easy experiment. [ more ]
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J-Pouch ForumsHelp! Need advice now!
BUTT RASH
C Candice3035
SaraJ I had my surgery in 2001. My husband installed a hose with a spray, like on a sink, to the faucet in the bathroom and I water cleanse before patting dry. We just changed to a bidet addition to the toilet for less than 30.00 on amazon and it works great as well. I think water cleaning prior to patting dry is essential. Any flair ups, I use calmosetine and it works great. [ more ]
Dottie R Whenever my behind gets irritated, I put a small amount of Balneol on a cotton ball and place it at your anal opening. If it is really bad, you could smear some around the area. It is very effective and works amazingly quick. I can be very sore when I go to bed and wake up with no irritation. Balneol is available at drugstores as an OTC, small white plastic bottle. Worth every penny. D [ more ]
Scott F Questran certainly has a longer list of possible side effects than most other methods of dealing with butt burn. As a last resort it definitely beats suffering, but it's best to try the gentler tools first. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Do I seek more help or not? losing control of pouch
R Rhianne
deweyj I agree it sounds like Pouchitis. but i am very curious why are you seeing your GP? do you no longer have a GI that follows you? [ more ]
Jan Dollar I would call your GI or get a referral ASAP from your primary. Blood tests will likely show nothing even if you have pouchitis. Waiting does nothing other than let symptoms get worse. Most of us have been there, done that. Jan [ more ]
Scott F Rhianne, I don't think there is any blood test that can reliably diagnose pouchiitis. The easiest path is a course of Cipro, IMO. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Bright Red...
J JessGoguen
deweyj I have just recently after 29 years developed a different manifestation of pouchitis. i have a scope on Monday which will confirm or deny my self dx. the reason i belive it is, is because i self administered two separate courses of Flagyl and immediately my symptoms (nightly partial incontinence) cleared. my frequency didn't change, nor has my pain, so this was a wholly new manifestation for me. in fact it took me a few weeks to finally put my finger on it. my point is i think pouchitis kind... [ more ]
Jan Dollar My guess would be cuffitis with pouchitis. Bleeding usually means cuffitis, but all that abdominal pain points more to pouchitis. I never knew that pouchitis could cause such far reaching pain. I was sure I had a hot gallbladder! But, just bad pouchitis. A year later, I still have not shaken it. Hope you get an answer from your doc soon. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Feeling miserable
Mema 1Mema 1
Mema 1 I was checked for c.diff and it was negative. I still have very smelly stool, but think it's the remicade. It's a very strange consistency at times and pretty nauseating but it proved to be negative. There was a big article about cipro just recently about how dangerous the drug was. It was on TV the other night as well. I swear, I don't think it's doing anything for me anyway.....I'm going to try to go off of it soon and just stick with the suppositories. My GI doc really doesn't know too... [ more ]
TE Marie Mema 1 I had a problem with Cipro when I still had my colon. It caused a c.diff infection. I can't use it again. I wish it could have been taken i for my pouchitis but they said I couldn't use it. I had c.diff with my pouch that took 4 or so rounds of flagyl to get rid of. Have you been checked for c.diff? Any doctor can order the stool test to test for it. My PCP was the one that caught it, before my j-pouch. The symptoms include smelly diarrhea so you might want to get it checked out. It's... [ more ]
CTBarrister Thanks- my Doc has a very distinct plan with the Remicade: 3 infusions at 0, 2 and 6 weeks; scope to measure progress at 12 weeks; if no progress, on to Entyvio. We are currently awaiting insurance approval on Remicade which I was told should come within a week, and then we will schedule the first infusion. I seem to be controlling my symptoms better than you are with antibiotics, but I am not controlling the inflammation, and I am hoping the Remicade will dial it back. If not we will just... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Prioritizing Issues...Anemia And Pouchitis
merrymommymerrymommy
TeresaLG Hi Merrymommy. I"m just wondering how things are now, 3 years after your posting regarding your anemia. I have UC, had a total colectomy and pouch surgery, chronic pouchitis and chronic anemia, B-12 and vitamin D deficiencies. How did your course of action work? Is the Ferritin better now? Thank you. [ more ]
Txgal58 I too have had some anemia issues and am on iron supplement 3 times per day. My main issue seems to be potassium, magnesium and sodium being out of balance. I am separated from my husband currently and admittedly my diet could be better but I've now been in the hospital 3 times in 2012 for dehydration issues! The extremely low potassium leaves me so fatigued! I have no explanation at this point for why this is happening. Good luck! [ more ]
merrymommy I don't know if Im experiencing an allergic reaction...but many times...my arms are very sore and tender...not just at iv site...it's little things but can be uncomfortable and has definitely required some "workarounds" at times... Im rethinking the whole infusion thing while waiting on latest lab results. Ive had these weekly for three months with mediocre results. Im a small bit better as far as my daily functioning. That's not much to show for all this invasive and painful "therapy". Im... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Removing jpouch
ManuelitaManuelita
Mysticobra Scott. I think my surgeon knows what she is up against. She seems very confident.... And positive she does not want to leave it in as it may cause problems later in my life and I do agree with that. But as I grow closer to the day I am getting anxious. I wonder if I am doing the right thing.... On the surface I wonder. Deep down I know I have to do it. And quit thinking about it. It's been a bit more than two years since it was made and the three surgeries I had in that time are still a... [ more ]
Scott F J-pouch removal surgery is sometimes complex, because the pouch can be difficult to separate from the delicate structures next to it. It doesn't alwas turn out that way, but I'd suggest you choose an expreienced surgeon who has removed plenty of J-pouches previously. [ more ]
Mysticobra I will let you know after I have mine removed on the 9th of Nov. May be awhile after because it's going to be an open surgery so I have to heal a bit before I can get back here. I don't have an ileostomy but will have one when it's removed. Richard. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Jpouch 1 1/2 yeras
BA Bill A
Scott F Four sachets daily costs just over $600/month (about $7300/year). Some insurance just covers it without fuss. Mine stopped coverage a while back, and I kept appealing (including to the state insurance administration) based on medical need, and after about a year I beat them. They had to pay retroactively. I may have to fight them again in January, when my insurance changes. The appeals process is designed to defeat you. During the fight I kept using the VSL, and paid for it out of pocket,... [ more ]
Bill A May I ask how you pay for it. Have you found an insurance. 4 sachets a day could cost 20k Thanks [ more ]
Scott F I take a "maximum" dose of VSL #3 DS: 4 sachets daily (2 with breakfast and 2 with dinner). I mix it in Greek yogurt. I take Metamucul twice daily, too, at the same time. It's safe to experiment on yourself with these things, and if you only change one thing at a time it can be very informative. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Bleeding
B beckysmom
beckysmom All good advice. Thank you so very much. [ more ]
skn69 A little trick that she can try (if she has the stomach for it)...when next she goes, she should try to use a container or a plastic ziploc bag (I can see the commercials now...)...that way she (and the doctor) can better judge the amount of blood in her stool. (she can freeze it to make sure that it is not altered before she takes it in (just don't forget to take it out of the freezer...nasty suprise in 6 months if she doesn't). When you use the bowl you cannot really tell how much blood... [ more ]
beckysmom Thank you Sharon, In the past 2 hours she has gone 5 times. She says she has a sense of urgency but it can also be the panic of wanting to keep checking to see if she is still bleeding. I can't tell if its a lot, she lives hours away from me, but she says it is and then again it is in water so I don't think she is even sure.... At this time she said she is staying hydrated and waiting to see if she has to go to the ER. Of course we hope it stops and she can see dr on Monday. Thank you. The... [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-pouch removal
Maggie MaeMaggie Mae
Mysticobra Originally Posted by discjockeyman74: It's not giving in. It's about your quality of life. I had mine taken down after 2 years. My body obviously rejected it. I was sick of being sick. I couldn't gain weight and was always in pain. Now with a bag I can live my life. I eat whatever I want, I'm on no meds, Im healthy and feeling great again. Having a great surgeon is critical though as its a complicated procedure. It's not my first choice but its the best decision I made. Life with a bag is ok... [ more ]
powder Originally Posted by Maggie Mae: I need some advice. I have had my J-Pouch for 20 years. After years of continuous pouchitis and every known drug, I have decided to have my pouch removed. Can you please tell me about the removal surgery and life after a J-Pouch? My husbands jpouch is still there, it just has to be checked yearly, [ more ]
Mike March Hi Judy, I am glad your doctor is not 'rushing' into anything. A decision like this is a full-on one way bet. I have been contemplating the same with ten years into this tempermental pouch. I find it to be as hard as getting the surgery to begin with. That bet didn't pan out as it was purported to be! Thanks all for your input. I am pursuing all other options before locking in the ostomy idea. Good health to all. Mike [ more ]
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J-Pouch ForumsHelp! Need advice now!
Blockage or pouchitis?
Pilot DebbyPilot Debby
Jan Dollar Oh dear! Sorry you have multiple things going on. But, it did sound like more than just the pouch. At least there is a plan. Good luck! Jan [ more ]
Pilot Debby Well I had my appt with Dr Church today. By the time I got there I was in pretty sad shape. I was very nauseated and my j pouch certainly was not working correctly. So in the end Dr Church went in with the scope and drained my pouch of almost a gallon of fluid. He could not get the regular scope in me and had to use the pediatric one. So the biggest problem I have is that I have strictures or I guess you can say a blockage keeping me from emptying completely. On top of that yes the gall... [ more ]
suebear I agree with Jan, it sounds like a gallbladder issue. Sue [ more ]
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J-Pouch ForumsHelp! Need advice now!
ICE CREAM
bederyparisbederyparis
suebear Over the years I have had some ice cream brands give me those problems, and others not. I think for me it's a particular ingredient in the ice cream; unfortunately the times I have experienced have been when it's served to me, not with purchased product. I am not lactose intolerant. Sue [ more ]
Jan Dollar This is true Scott, since lactose (and other nutrient digestion/absorption) takes place in the small intestine, not the colon. Lactose intolerance is very common in the general population, particularly as we age and if we go a period without consuming lactase. Also, major illness or surgery of any type can trigger digestive disorders, such as lactose or gluten intolerance. So, it is not the lack of the colon per se, but the trauma of illness and/or surgery that be the common thread. Jan [ more ]
Scott F Hard cheeses have no lactose at all. Lactose intolerance is pretty common, and it can appear (or worsen) if the small intestine is acting up (e.g. from a virus) when things are running too quickly. I think Sharon may have exaggerated a bit about how common lactose intolerance is for the colon-less. I don't think it afflicts a majority, and I don't think it's any more common for the colon-less than for folks with colons. [ more ]
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J-Pouch ForumsHelp! Need advice now!
long term cipro and its side effects
GypsyGypsy
Gypsy Thank you to Scott, Sharon and CTBarrister for answering my message. You have given me more insight to this problem. I am going to try cutting back on the Cipro to one a day and see how that works. If It helps, I will speak to my doctor to try different dosages to see if the lowest one continues to work. Thank you again for your input on this matter. I will keep posting on my progress. Take care all.....I am so glad I came across J Pouch Group........... it has made me feel less alone with... [ more ]
skn69 My only prolonged cipro treatment was for 1yr between 1999 and 2000. Biggest side effect? My ligaments became fragile, breakable?, swollen, painful etc...I started to get tendonitis all over the palce. Don't remember any other specific ones. Sharon [ more ]
Scott F I've been on Cipro more or less continuously since 2009, with no significant side effects. It has enabled me to thrive with an active and essentially normal life. While it's preferable to rotate antibiotics every 2-3 weeks, and I'd encourage you to work with your doctor to explore that option, I'm here to point out that you can be just fine even if that doesn't turn out to be satisfactory for you and you need to stay on just Cipro. None of the other antibiotics individually worked for me. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Permanent Ileo or J pouch?
Becky18Becky18
NancyJo It is a tough decision to make. I have, at times, wished I kept my ileostomy. I was getting used to managing it and developing a routine by the time I had the take down. However, I have had equal positive results with the j-pouch. The issues I do occasionally have with the j-pouch, like occasional diarrhea and frequent bathroom visits, would have manifested themselves with the ileostomy. as well, just in a different way. I don't find one or the other more or less convenient. With the j-pouch... [ more ]
deweyj As others have said and a friend here locally is doing, you can proceed with the 3 step jpouch surgery, the first step is I believe an end ileo. my friend has chosen to wait and see, perhaps punting the other surgeries until much later or if she decides she's okay with the end ileostomy might then decide to have the rectal stump removed. Personally I had a nineteen year run with occasional bouts of pouchitis but med free and for the past almost ten years have been battling to keep my jpouch... [ more ]
Jan Dollar If you are going to have a 3-step procedure, you WILL have an end ileostomy and time to decide if you wish to stay with it before going on to step 2 and j-pouch formation. But, once the rectal stump is removed, you cannot go back and change your mind that you want the j-pouch after all. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Problems 9 days after J-Pouch Surgery
RR Rafal Rybak
skn69 I am so sorry, this is adding insult to injury! First off, I agree...the mucus slows to a halt after a while...mine did stink horribly (no one warned me about that pre-op)...they did my total colectomy 5 months after my k pouch creation... A couple of suggestions for the bag change....try doing it in the bathtub or shower...makes clean up easier...also 1sth thing in the morning on an empty stomach... I have a k pouch and with every surgery I had to wear it hooked up to a tube/flange/bag... [ more ]
deweyj oh boy I am sorry to hear you feel so discouraged. but take heart the early days are the worst days. Rachel is spot on, the mucus discharge from your bum will slow and eventually cease. 9 days out is very early days, not sure if youre still on pain meds, that might or might not have anything to do with control. as to odor, how frequently are you changing the appliance and maybe consult with other suppliers, I hear nowadays they make a variety of bags with filters etc. might also be the food... [ more ]
rachelraven The fluid from the pouch/your bottom is not indicative of how things will be after you have your takedown. Intestines create mucus, always, but with stool mixed in, you rarely see it. After my surgery, at first, I couldn't control the mucus discharge, but slowly it became less and less. My surgeon used the decrease of it as a way to gauge when I was ready for takedown. For me, that was at 4 months. However, you mention a foul smell; my discharge did not have any real smell at all. Maybe ask... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Leak in j pouch
*Zoe***Zoe**
*Zoe** Hi Jan Thank you for your reply. At least I know I do have hope. My pouch is so precious and I really want the best for it to operate well. I am sure everyone feels the same way who go through this procedure. [ more ]
Jan Dollar I had a 1-step and developed a presacral abscess from a leak. It caused a lot of pain and a high fever. I was hospitalized and a drain was inserted and left in place for a month (I was sent home after 12 days). I did not need further surgery. This was in 1995 and I still have my pouch. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hernia Surgery
F FrankH
skn69 Talk to him...maybe he is willing...mine wasn't...depends on how nice they are or are not... The worse thing that he could say is no... Sharon [ more ]
Gayla I have 4 hernias but was wondering if my plastic surgeon that is doing the repairs could make my stomach look a little better with out it being labeled as "cosmetic" surgery. I am really hoping my insurance will pay for a little more than the hernia repair but I am afraid since the defects are not on my face and on my abdomen that they will say it is cosmetic. I just have a big bulge above where my stoma was that bothers me through my clothes. I guess just wishful thinking. I thought maybe... [ more ]
skn69 I had my hernia repairs done by my laporoscopy surgeon and my abdominal repairs (with a hernia repair thrown in for the fun of it) done by my plastics guy...I've had about 4 of each....I only wished that one of the 2 would have been able to do both! Would have saved me a lot of anesthetics! Good luck...most often the plastic guys can do a simple hernia repair. Sharon [ more ]
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J-Pouch ForumsHelp! Need advice now!
Help, need to make scary decisions
AllyKatAllyKat
Lambiepie Originally Posted by skn69: Hi AllyKat, I am so, so sorry...I understand perfectly...you are at the end of your rope and all of the options that they are offering to you seem booby-traped...they all have potential side effects but sometimes we feel like magnets for anything and everything that can go wrong...so are pretty sure that if there is a side effect to 'catch' then we will... So hard to go from a success story to a full out disaster is so short a time...you have really tried it all... [ more ]
JLH What is ischemia? Oh I looked it up. No I have good blood flow. It sounds like a great option for you. allykat--ischemia was a result of the initial surgery--wan't appraised of this situation until years later. it's complicated Will they use your jpouch or make a new pouch? I hope u don't need to lose more intestine. the cleveland clinic doc says j is too diseased to reuse, so will use 80cm or so for the k. will ask him to reassess the situation when they take the j out. ( mind you bauer... [ more ]
skn69 Hi AllyKat, I am so, so sorry...I understand perfectly...you are at the end of your rope and all of the options that they are offering to you seem booby-traped...they all have potential side effects but sometimes we feel like magnets for anything and everything that can go wrong...so are pretty sure that if there is a side effect to 'catch' then we will... So hard to go from a success story to a full out disaster is so short a time...you have really tried it all thus far. I am a risk taker... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Feels Like UC All Over Again
M mrwizzer
mrwizzer ❤️
clz81 mrwizzer, to your questions about being on the antibiotics for a longer period. typically, your GI will prescribe you antibiotics over the phone based on your symptoms with your first bout of pouchitis. if it comes back, they will generally have you stay a slightly longer course. if then, symptoms still return, it'll be time for a pouchoscopy. from that, that can tell if you have a more chronic issue going on. i do have chronic pouchitis and have to treat it every day. [ more ]
Goentropo Originally Posted by chalmersd: My daughter has somewhat the same issue. She had a pouch revision in December and her take-down in May. She has been getting pain & spasms they believed to be pouchitis. sonce she is allergic to Flagyl, they put her on Cipro. She did very well while she was taking it but the symptoms quickly returned after she finished the prescription. She started feeling bad about a week ago and she was just admitted to the hospital with acute kidney failure they believe... [ more ]
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J-Pouch ForumsHelp! Need advice now!
duke surgeon advice
MN marc nolan
Muddygirl I had my takedown in April 2015 at UNC. I did not have any history of UC symptoms. I went to the ER and was admitted. After 1 week of unsuccessful treatment for inflammation, I had to have surgery to remove my colon. Dr. Rahbar saved my life. I feel I doing great and I am confident I will be back to close to normal in one year as I was told. Note: My husband's PCP works at Duke. When I was faced with having to have surgery, he contacted her asking if I should be moved. She called him back... [ more ]
JeffH I'm in the process of surgeries right now with Dr. Sadiq at UNC (Koruda's protege). I highly recommend him and the whole team at UNC. I don't know much about Duke. My gastro team was most connected to UNC. I drive all the way from Asheville because we don't have anyone they recommend here.(Go Heels!). Good luck! [ more ]
dwd01 Since you are in the triangle, you might try Dr Koruda at UNC.... Did my surgery 4 or 5 years ok... Great talent.. nurses love him (that says a lot) and for surgeon, has agood bedside manner.... He teaches the surgery, and a real pro [ more ]
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J-Pouch ForumsHelp! Need advice now!
ILEOSTOMY CHANGE TO A K POUCH
D dgr 123
BillV Other than a temporary ileostomy (which I hated with a passion) many years ago, I have not had an end ileostomy. I now have a BCIR, which is very similar to a k pouch in function. You can google k pouch and BCIR to get lots of information on these procedures. Although there are risks of complications for any major surgery, these two procedures have a very high patient satisfaction rate and under 10% failure rate where the pouch must be removed. A very large percentage of these procedures are... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Rectal itching and bleeding
J JanetRose3
NancyJo Like, Zman, I use Prep H most of the time but I have had success with zinc oxide creams and also powder, depending on the situation. I do have a small hemorrhoid that flares up and that is when I have the most leakage, itching and a tiny bit of bleeding. I then go to a Prep H suppository. In other words I have an arsenal of remedies that I used and change up. I, also, have come to taking baths. That helps me all around, mentally and physically. [ more ]
NancyJo Originally Posted by Scott F: If it's fungal then the barrier creams might make it worse by keeping the area moist. Some folks have reported good results with Zeasorb powder. I find that powder does help help me as well in certain cases. I do it all, ointments,Desitin cream (zinc oxide), Talcum powder and PrepH ointment or suppository. [ more ]
KOB Originally Posted by JanetRose3: Does anyone with a j-pouch suffer from chronic rectal itch? Look, I'm 364 days after takedown so I profess not to be an expert, but I know itching for me is a precursor to butt burn and a result of overly acidic output. Unlike a 'normal' itch which goes when scratched, it seems to be the initial signs of irritation. If I've had something (even mildly) spicy to eat I get the itch followed by burning. So it is followed directly by some blood (usually the... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pyoderma HELP PLEASE
S sally85
sally85 Thanks jan in a way it's good to know that the colectomy isn't a cure for pg at least I can hang on to hope that it can still be uc and not chrons, and thanx so much for the link! I've read some on the diversion colitis, really helped I've said it before and I'll say it again this life is a godsend! Xxxx Thanks again! Xxx [ more ]
Jan Dollar I don't think that colectomy is considerd a cure for PG. IBD is in your DNA. Plus, PG has unclear etiologies and disease course, according to the article I cited above. Diversion pouchitis is caused by having a diverting stoma. It is more common than you'd think. There are a number of active threads here discussing it. Jan [ more ]
sally85 Thanks so much for your replys I really appreciate it, my nurse just called me and said 'you shouldn't have pyoderma now because the entire diseased rectum had been removed' so I asked do they think it could be chrons and she said 'the histology on your large bowel showed uc so we're baffled' As far as I can tell I've never had blood in the ileostomy bag but I've always had bleeding from the rectum (the bleeding has been there from the 1st step when part of the diseased colon and rectum was... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Diverted and pouchitis worse ?
AllyKatAllyKat
Jan Dollar So here's the thing. You can have ordinary pouchitis, or not. Pouchitis is a range of disorders with various causes. If it is more about IBD and less about an inflammatory response to normal bacteria (ordinary pouchitis), then it is more complex. You can also get diversion pouchitis, which is caused by the LACK of the fecal stream. Most people do not realize that the intestinal mucosa is nourished partly by nutrients in the fecal stream; short-chain fatty acids in particular. In that case,... [ more ]
AllyKat Thank you Jan, I have calls into my doctors if they ever call back. Yes, by toxic I mean I had bad reactions to the more potent ones. Some reactions to the antibiotics as well. my system does not do drugs very well. The pain from the inflammation is killing me. I hope I can find something that will work. I really want to be reconnected like ASAP. What I don't understand is how with no stool going thru the pouchitis has not healed itself? That was the purpose of doing this. thanks [ more ]
Jan Dollar Sounds to me that diversion obviously did not work for you. I can only presume that you tried UC meds before. It is not clear to me what uou mean by "toxic," unless you know you get severe side effects from them. If that is the case, I can't see what else is left besides pouch removal. I am sorry it did not work Out for you. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Sweats, high output
L liagraf
liagraf At the hospital they've been doing my temperature and it's been fine but not sure if it's because I am on pain meds post operatively (dyhydrocodeine and paracetamol) I'm quite worried and not sure what else I should do.. [ more ]
Jan Dollar Have you been monitoring your temperature? Chills and sweats could mean infection, so be sure to take your temp several times a day. If you are taking pain meds containing fever reducer, your true temp may be masked. If you are coming off steroids, they can cause these symptoms too. Be sure to stay well hydrated too. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
ulcerative colitis IN THE POUCH!
SK Susan Knilans
DorisR I had never heard of it before, thanks for whatever info I can gather. Doris [ more ]
Scott F Doris, the rectal cuff is internal. If you can see ulcers (without a scope) then they are not cuffitis. Cuffitis is (mostly) treated with UC meds, generally placed rectally (suppositories or foam). Since the entire affected tissue is so easily reached, the meds are sometimes quite effective. [ more ]
DorisR Originally Posted by rachelraven: That's true. If its in the anal cuff left, it'd be UC, probably... but not in the small bowel. This is the first I've ever heard of Cuffitis. What!!!! After having my colon removed, I could get UC in the cuff around the rectum? I have wondered about this, I have ulcers that I can see. Do you know what the treatment is for cuffitis? (By-the-way, I like your quote). Doris [ more ]
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J-Pouch ForumsHelp! Need advice now!
Swollen,bleeding rectum/anus
HobbieHobbie
Scott F In the UK Xifaxan would probably be called rifaxamin (the generic name). It's extremely expensive, at least in the US. I got better results from Cipro than Flagyl. I don't think most people who stay on Cipro get C. diff, but some sure do. [ more ]
Hobbie Thank you. Yes, I have tried Flagyl and it seems as effective as Cipro. I am not sure if Xifaxin is available in the UK. I have not heard of this. I will defo try Mesalazine. [ more ]
Jan Dollar If the docs are more on board with Flagyl, have you tried it? I used to take only Flagyl for my occasional flares, and it worked well without side effects. But over the past year it has become less effective, and my pouchitis symptoms are more chronic. Rotating Cipro, Flagyl and xifaxin seem to be working. I also was very leary of constant Cipro use due to the C. diff risk, as was my GI. I do suffer from cuffitis flares and use mesalamine suppositories when there is bleeding or when I feel... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Fleet Enema question
J judyk
Scott F Judy, have your fissures been treated? Options include nitroglycerine, nifedipine, and Botox injections. [ more ]
judyk Met with the Surgeon yesterday. He wants me to adjust the timing of my fiber supplement and all my meds in the hopes they will be more effective when taken at optimum times during the day. He really listened to me and does not want me to jump to be rid of my pouch so quickly. I will follow his advice and will see him again in 2 weeks to see how I feel then. I am hopeful again that this just might work, with this Doctor's help. I like a surgeon that is not in a hurry to cut. Fingers... [ more ]
Jan Dollar Agree with the above. Also, be sure to tell your doc you know you have painful fissures before he does an exam. He can use topical anesthetic so it will be less painful. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Leaky bowel?
J Joanm
Joanm Thank you both for your responses and I am sorry it took me so long to acknowledge them. Interesting that my GI dr had the same thought that you both did--we need to move on from this recent surgery and look elsewhere for what is going on. I have been looked at every way possible and my surgeon has found no problems, no pouchitis nothing to indicate that the J-pouch surgery was not successful, technically. A lot of my friends have a hard time understanding how I can say that the surgery was... [ more ]
Scott F Echoing what Jan wrote, this doesn't seem likely to turn out to be a pouch issue, mostly. Did you have some (or all) of these symptoms before colectomy, even if at the time you thought they were caused by UC? In any case, I hope you get some energy back soon. Jan's point about the possibility of depression could certainly be part of that. --Scott [ more ]
Jan Dollar Joan, I remember you posting about the Enteragam before. Sorry that it appears to be a failure. TPN is not a long term solution, but certainly can be a great rescue treatment. While it provides all the required nutrition for life, there is much in real food that we don't know the purpose or effect on our bodies. When I was on TPN and gaining weight, I felt fine generally, but not with my full energy levels I had when healthy. It takes months and months to rebuild that muscle tissue. Plus,... [ more ]
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J-Pouch ForumsHelp! Need advice now!
how long to get to 5-8 bms per day?
bederyparisbederyparis
Muddygirl I am into 5 1/2 months post takedown. I am guilty of focusing on the numbers and have been tracking daily. I am now I am averaging 4-8 BM's. If I eat something out of the ordinary like fried foods then it will increase to 5-8. Diet is definitely a factor. It is trial and error because when you leave the hospital the doctor tells you, you can eat anything you want 'within reason'. [ more ]
Jan Dollar While "normal" frequency after adaptation is about 5-8, it is not a goal we all reach. Most of us see a distinct improvement by the 3 month mark, unless there are complications. This does not mean full adaptation, which is closer to a year, with gradual improvement as the years go by. Children tend to adapt faster, and the older you are, the more likely it is that it will take longer. You have already seen significant improvement, so I would expect this trend to continue. At some point you... [ more ]
rachelraven Pretty fast for me, within months (maybe 3-4?), but honestly, I never counted. Once I could defer going, I just... Did. I didn't think about it, and went when I had to, never with urgency. If I had to pee, I'd just empty, too. Kind of just forgot to focus on it. I'm sure "back then" I had days that I went closer to 10, at times, but I again didn't even think about it. I suggest not fixating on a number, but trying to live life and see if you can go a day where you're just kind of not... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Kefur
C Ckf
Ckf I believe it was lactose free. I did read that to start you should only drink a tabllespoon at a time. I drank about 8 ounces. [ more ]
JLH was it lactose free and if not, are you lactose intolerant? i've had problems with kefir due to SIBO--bacterial overgrowth-- and had to give it up. pity. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Major American butt burn
HockadooHockadoo
Alisha I've had issues as well & triamcinolone, which is a prescription cream, changed my life. It's one of the ingredients in Nystatin, but alone it's only $4 a tube at Sam's Club's pharmacy without insurance (the combo cream is over $300). You can't use it long-term, but it basically stops the inflammatory process from all the irritation. It won't treat yeast or any fungal infections like Nystatin though, so make sure that's not a problem. I'm assuming you know about the importance of keeping... [ more ]
tcar614 Butt burn solution, Get Omneprazole (Prevacaid) excuse spelling - take pill each day for fourteen days as prescribed. It greatly reduces acid in your system allowing your butt to heal and for less irritation. Keep using Balneol or the generic brand all the time. They sell little take-along packets you can keep on you when you're out. Good luck Tom [ more ]
Mysticobra I am going through it again right now. Both those only work to an extent. What I used all night... Yes all night.... Was Crisco. Wipe with it very time and it goes on the crisco and leave some crisco behind. But you have to use a dab on every wipe. Every wipe. That's important. That works very well too. The lidocream works but if you are going all the time you just wipe it off. It works when you are just flaming and done going back and forth and can keep it on. Stops the burn and throbbed so... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Prednisolone withdrawal -post j-pouch surgery 6 months.
FrancescaFrancesca
Francesca Hi Ceee Ceee thanks for your reply. That's a good thought about dehydration. Some hydra lite wouldn't go astray. Thanks for your email. Cheers [ more ]
CeeeeCeeee Be sure you are staying well hydrated. One of the symptoms of dehydration for me was complete lethargy. This seemed to happen frequently when I had the ileostomy. I'd take myself to the ER and ask for an IV. Just drinking water didn't do it back then. Best wishes! [ more ]
Francesca Hi everyone. Thankyou for your thots on Prednisolone withdrawal. It seems to me that it is going to be a slow process. After further searching the Internet I came across a post from another site. This person suggested strong doses of vitamin b to help in the withdrawal period. I went and spoke to the local pharmacist who suggested trying Natures Own Brand. Super B Forte. He said that along with the general multivitamin that I have been taking to take the Super B Forte which will serve to... [ more ]
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J-Pouch ForumsHelp! Need advice now!
have a large amount of fluid pelvis should it be there?
FM Former Member
JPride Wow...3 years since your last post....Can't believe these rotten jerks gave you this run around. Please let me know what has occurred with you since then. I too went through run around. Was in incredible pain for years...Had my jpouch surgery 6yrs ago. But they just saw the fluid in abdomen 1yr ago when I was in for partial blockage from scar tissue wrapped around small intestine. Over this last year they said it was free fluid and would absorb, then said it was ovarian cycst and when I... [ more ]
Former Member thank you for everybody's support and comments.I have just seen a second surgeon. regarding the fluid and pain. They plan to do surgery.It looks like my pouch is not working as good as it should be.So, they are going to give my pouch a rest and i go back on the bag for year or so then down the track maybe go back to the pouch have to wait and see. With the pockets of fluid that will be removed and scar tissue. But until they open me back up, they will getter a better idea of whats really... [ more ]
vanessavy Just a heads up on this. I just had a transvaginal ultrasound done since everyone swore it was an ovarian cyst and nothing to do with my surgery. Well sort of true I guess. but I have no ovarian cysts now confirmed with the ultrasound. My Oncologist swore I needed this fluid drained and doctors kept saying no and said it was GYN related. The ultrasound showed no fluid actually, a CT scan doesn't know how to properly pick up what I had and it would show as fluid on a scan. The ultrasound... [ more ]
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Join Us!

Founder, Creative Director & Web Master

William J. Johnson
bjohnson@j-pouch.org

Bill Johnson founded the J-Pouch Group in 1997.

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

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