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J-Pouch ForumsGeneral Discussion
Need Some Insight
J Jacob
Scott F I would have suspected the kink as a good candidate for the culprit except for the antibiotic effectiveness. I can’t think of a way for Cipro to fix a structural problem, except the remote possibility that it thickens your stool which somehow splints the kink so it doesn’t collapse during defecation. That theory might be testable with soluble fiber - if you can get a similar effect with psyllium as you get with Cipro you will have found something important. OTOH, perhaps you already take... [ more ]
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J-Pouch ForumsGeneral Discussion
Difficulty of Pouch Redo
P Pouch4Wf
Nish123 Hi all , I saw dr remzi for my possible pouch redo.he found out that my cuff was 6-7 cm long and my pouch might be twisted as well. So , he recommend me 3 stage redo as well which is really stressful to go through that pain again .However , I am just curious to know that if ever anybody thought of suing their previous surgeon for such negligence .Thank you [ more ]
Allin My experience was a lot like yours . He does lean on the trust thing a bit .But in the end when we decided that we would proceed with the nine month redo I would have to trust in him and mentally give him control of my care which was not easy because of how I am . The six month break between surgeries one and two I did not like but in the end the break was very beneficial except for dealing with the bag which I hate I felt better physically and mentally better prepared for surgery two . I am... [ more ]
athena I don't have answers for anyone, just some personal experience to report... Been suffering for 6 years from chronic pelvic sepsis from a badly made, leaky pouch. It could have been fixed early, according to the lit, but my inexperienced surgeon hid his head in the sand, and that let it get to the point where it is really not ok. Now I've just had part 1 of 3 redo w Dr. Remzi. He is supposed to be the best, according to both other colorectal surgeons I consulted. He moved to NYC from... [ more ]
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J-Pouch ForumsPouchitis
Best Probiotic for Pouchitis
D DeathStalker
Karenchase I agree with Scott. I have looked at quite a few probiotics that can be found in stores, and bacteria-for-bacteria, the price difference isn't that significant, except that sometimes the "cheaper" one actually works out much more expensive. I hope you have good results with ActivatedYou. I checked it out, and 30B x 30 doses is $70 (I assume US). By comparison, VSL#3 is 450B x 30 for $130 (that is Canadian, so a little less in US dollars, I assume). So for a little more than twice the price... [ more ]
Amy R Just ordered ActivatedYou online. Cheaper than VSL but will try it for a while before I let you know [ more ]
Scott F VSL is the only one that’s been well studied for pouchitis. The others tend to have a similar set of bacterial strains. Some people have reported good results with Align. One of the reasons VSL is so expensive is that it’s labeled for a *very* high dose of probiotic bacteria, which seems to be helpful in preventing pouchitis. When you are comparing the products the prices are only meaningful when comparing the same # of CFU (colony forming units, which is the same as “live bacterial cells”). [ more ]
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J-Pouch ForumsGeneral Discussion
Rectal burning
FD Fred Di Napoli
bwils Hi, I struggled with the same for the first year until I started taking Metamucil 2x a day. I take it before breakfast and dinner. One tablespoon in as little water as possible to get it down. Now I very rarely experience burning unless I go crazy with spice or eat a lot of sugar (both of which I avoid). It's been a lifesaver! [ more ]
GraceB Hi Fred I have had my surgery 8 years ago. I still have burning when I eat certain food. tomato sauce, hot and spicy. eating certain veggies and many other things. I deal with the same problem. Certain food do not agree with me and the burning is excruciating. Try to stay away from the foods that are aerating your system. I still can't figure it out. I try to gain weight and I can't because there are so many things that just do not agree with me. I would love to get an answer also. Grace [ more ]
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J-Pouch ForumsGeneral Discussion
Pressure/Spasms in Anal Area...
MC Marsh Chap
Scott F One possibility is called “spasmodic pouch.” If that’s what’s going on it’s sometimes treated with an antispasmodic like Bentyl or Levsin. These can have nuisance side effects, but might also help. This doesn’t sound like an anal fissure, even though those can cause spasms, since you’re not reporting the typical intense pain that usually goes along with a fissure. Good luck! [ more ]
Winterberry Hello, Marsh Chap. Google "protalgia fugax" or "levantor ani syndrome" and see if the symptoms match yours. At least you might be able to put a name to it if you see your doctor. [ more ]
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J-Pouch ForumsPouchitis
How can heal bleeding poach?
HajiHaji
Scott F The budesonide should treat cuffitis effectively, but it’s a steroid best reserved for when nothing else will do the job. If I had cuffitis I’d probably try treating it with Canasa. Some kinds of bleeding really aren’t very important, so knowing what your doctor thinks is going on would be helpful. [ more ]
Haji Scott, you’re right, it’s not so further from exit. Yes I told my doctor but maybe it’s not very important. So if I have cuffitis what should I do? [ more ]
Scott F Haji, you have to know where the bleeding is coming from to understand and treat it. It could be from cuffitis, from a pouchitis ulcer, or from an ulcer higher up in the ileum. If it’s bright red it’s probably not much farther away from the exit than that. Bleeding hemorrhoids wouldn’t generally form clots. Does your doctor know you’re bleeding? When did the bleeding start? How often do you see blood? [ more ]
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J-Pouch ForumsK-Pouch Korner
Sleep etc.
ReenieReenie
skn69 Hi girls, Welcome to the club! It is a very elite and special club that has some very basic "rules for survival" 1. What goes in, must come out! And in our case through a 12inch tube with 3 flute holes! So Chew chew chew! 2. Certain foods are "friendly-enemies" meaning they taste great together but do not digest well together. I separate my carbs/starches (bread, cake, pastry, pasta, rice, potatoes ...) from my proteins (meats, fish, chicken, seafood, eggs...) because of their different... [ more ]
JLH reenie and janice--have you checked out sharon's posts on diet? she has gone through the worst of everything and has figured out what food works and doesn't. and she lands back on her feet and smiling so i think her suggestions are worth considering. when i had probs intubating, due to the hernia, the doc suggested i stand and lean ever so slightly forward. it works. obviously crimp catheter! pee before you intubate, even if you don't think you need to, as that eases up some pressure on the... [ more ]
JanW2 Hi Reenie and all, I am at 9 months and have to intubate about 8 times in 24 hrs. High level of gas makes intubation almost impossible for me, except lying flat, so I was advised to clear it more frequently to avoid that. I have not done any carbonated drinks since 2005! I also need to maintain a very low fiber diet to keep the flow from clogging constantly. GI feels I may improve some, but I have IBS issues along with this, so maybe not. Light white grape juice and as much water as I can... [ more ]
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J-Pouch ForumsGeneral Discussion
GI Doc in CT or New England area
E ElizaB
CTBarrister That’s too bad about Dr. O no longer being at Mount Sinai. He is one of the more knowledgeable Pouch experts I have come across in the 26 years I have had a Pouch. He studied under Dr. Bo Shen at Cleveland Clinic, was mentored by him and speaks to Dr. Shen every week. This is our loss but a blessing for our posters in the Chicago area. [ more ]
ElizaB Hi. thanks for your response. I did try to trick down Dr. Oikonnomou at Mt Sinai. and learned that he is no longer there. As far as they know, he has transferred to a hospital in Chicago. This just never ends. [ more ]
CTBarrister I also live in CT and I am treated by Dr. Myron Brand who has offices in Guilford and New Haven. He is an excellent doctor, very experienced with pouches as well, but he is close to 70 years old and I fear he will retire soon and I will be in the same boat as the rest of you. I actually met with Dr. Ginsberg around 8 years ago and didn’t hit it off with him so when I do need to make the change will look for someone younger at Yale. Before Dr. Brand my Pouch specialist was Dr. Oikonnomou at... [ more ]
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J-Pouch ForumsGeneral Discussion
Need help and wondering
Mema 1Mema 1
mary beth I did keto for about a month, not nearly as restrictive as whole 30 because you get to have dairy which is huge. But I don’t have a jpouch my daughter does not do well with dairy Glad you don’t have issues [ more ]
Amy R Yes. Cheese and whole fat cream. It is very restrictive the first 30 days but after that it's a few more carbs. Right now I am trying to keep carbs below 20 and keep my good fats up which has been hard. I am a big carb and sugar lover and it took about 3 days to get over that. [ more ]
mary beth Amy, Glad you found something that helps! I can imagine Keto would be a good diet for Jpouch since no sugar/very low carbs. Do you eat dairy? [ more ]
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J-Pouch ForumsPouchitis
Why more active at night
D Dunninator
Still Standing Sure I take One 25 mg of Amitriptylin along with 2 Lomotil tablets. The Amitripylin is an old antidepressant medicine, but my doctor prescribed it for its side effect of thickening things up. It really has allowed me to finally get some sleep. During the day I’m on weekly Humira injections, Budesonide and Imuran. Hope that helps 😊 [ more ]
Tigowoods Do you mind filling us in with what medicine it is? Thank you. Could help me here. Nights are terrors at the moment. [ more ]
Still Standing I agree with Scott too. Don’t just expect diet to heal pouchitis, get some medications that help you fight it, and along with that use the other advice. Also I suggest that you talk to your GI about your pouch being more active at night. Mine prescribed a medicine I take at night with two limotol tablets and now I actually sleep at night. Makes for a much happier household around here😊 [ more ]
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J-Pouch ForumsGeneral Discussion
incontinence
H happytimes
happytimes Thanks to your replies. I'm going to call the doctor on Monday and get in and see what he says. [ more ]
Pouchomarx Happytimes... I have the same issues. I had a pouch redo 2 yeears ago and ever since I get very slight leakage too, I always wear a small pad stuffed up to the anus just in case. But if I eat to soon before bed there have been times where I have crapped myself. I don't trust farting off the toilet either. And I have been scoped a few times since surgery and no pouchitis. Dr Remzi told me a redo with mucousectomy could be result of this. I think its nerve damage. I have had the manometry test... [ more ]
CTBarrister Same with me. The nocturnal incomtinence is always the sign that something needs to change. It’s not going to stop until it gets treated. [ more ]
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J-Pouch ForumsGeneral Discussion
Pain after sigmoidoscopy
T 2020Tim
Scott F Are you thinking the pain is from the pouchoscopy? What you’re describing sounds like it might be a spasmodic pouch, though I’m not sure what you mean by “inflammation” at the anus region. Are you using a barrier cream after each bowel movement, to prevent butt burn? [ more ]
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J-Pouch ForumsGeneral Discussion
Dehydration/thirst
skn69skn69
skn69 Thanks Bobish I will look into it this week... [ more ]
Bobish Hey sharon, sorry to hear your back in the wars again! A couple of things you could look into. Iron levels can cause thirst issues, especially if well out of whack... You seem like the kind of girl that that we be in top of that however... But that would explain how it came and went. Diabetes insipidous (has nothing to do with diabetes despite it's name) affects the kidneys and how the regulate the fluids in your body. This is a hormonal issue which can either be temporary due to illness or... [ more ]
skn69 😂yes they did and I have the Skelton of a 30 yr old....they explained that the way that I fell I should have broken my arms into bits but only sustained 2 compression fractures...which proves the strength of them...I still think that there is also a break in the left wrist...the new ortho will check. Been told by others that the fracture should have been wired from the start...something seems to be wrong with my healing process ...duh...ehler's-danlos syndrome working it's magic...cant... [ more ]
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J-Pouch ForumsHelp! Need advice now!
I've just been diagnosed with Crohns and I have a j pouch
S Shelbycedrone
RinaJP I too have recently been diagnosed with Crohn’s with ulcers throughout my ileum and a stricture situated right about the tip of the pouch on the other side of the bowel. Because of the stricture, only cutting the stricture out is not possible and I am facing full pouch removal if the stricture fully closes. While I was initially shocked that I was probably going to need surgery to remove the entire pouch, I’ve come to terms with going to a pouch removal. I have suffered two long years of not... [ more ]
Still Standing I am. I was originally diagnosed with UC but with ulcers above the pouch, I’ve been given the crohn’s diagnosis. I’m on Humira every week, Entocort, imuran, plus Amitriplyn and lomotil at night. These help me maintain a fairly ‘normal ‘ life. I am scoped about every 4 months to monitor the healing of ulcers. I was really sick before my j pouch surgery. Even dealing with crohn’s , life is a whole lot better. Take one day at a time. Allow yourself time to heal and see what happens. You’re in... [ more ]
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J-Pouch ForumsGeneral Discussion
Obstruction
S SteveRM
acegolfer have had my J pouch for over 30 years, you MUST chew or chop into tiny bite sized raw fruit ( pineapple )and vegetables, even chunk potato salad, the smaller the size of food, the easier it will pass . That chunk of food can get stuck in the last bend . If you think you swallowed something too big , I recommend vomiting right away , it is WAY better than going thru 24 hours of agony and hoping you will pass it through . [ more ]
Subzeromambo Thank you Steve. I'm sure I will be fine but every now and then it feels good to communicate with people who know exactly what you are going through. I am very glad you are better now! [ more ]
SteveRM Sorry your feeling bad Sub. I think my obtruction was brought on by taking two immodium and then crackers that was made of rice and red beans. Ate to many but they were good. I am better now. Hope you feel better soon. [ more ]
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J-Pouch ForumsGeneral Discussion
bad reaction to immodium - alternative suggestions?
J J9Pouch
J9Pouch OMG, Nurse Butthole, that handle!! I LOVE IT!! [ more ]
NurseButthole Yes, I've had the same problems. The first decade after my takedown I was taking 20 Imodium a day and tried lomotil, and anything with the side effect of constipation. Im taking tincture of opium now and find it helps because it slows peristalsis. I've been taking it for about 10 years - same dose, and it works well unless I have pouchitis. [ more ]
Still Standing I used to have the same problem with waking up in the middle of the night with my pouch wanting to empty and empty and empty. My GI gave me a prescription for Elavil (Amitripylin) 25 mg. It is a medicine given for mental issues, but it side effect is thickening. (Which is why he gave it too me.) I take 1 of these and two lomotils every night. I might still wake up to empty, but I can then go back to sleep. I've even been able to sleep through the night. It has really helped me to get much... [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Poucher with Crohns
FM Former Member
CTBarrister As I mentioned earlier I have carried a “suspected Crohn’s” diagnosis for many years since inflammation was discovered above the Pouch. The diagnosis will not change anything, it’s how you treat it going forward that will. Laura, low carbs, low sugars, antibiotics and now biologics (Remicade) have sustained me. My scopes show that the Remicade works much better on the inflammation in the Pouch than the inflammation above the Pouch. So losing the Pouch may not end up being the issue. You can... [ more ]
Still Standing I’m a j-poucher with crohn’s. I’m on Imuran and Entocort plus lomotil and Amitripylin for night issues. As of today things are working as they should. I have ulcers above the pouch which ate being monitored for healing with scopes about every 4 months. I take things one day at a time. I watch my diet to avoid pouchitis. I take supplements to boost my health. Nothing has really changed but the diagnosis. [ more ]
LauraLee I had my JPouch for 4 years (with lots of issues) and after a Pouchoscopy last week, the doctor told me I have Crohn’s. It was shocking!! I’m still trying to assimilate everything. My first thoughts were why me? Now my biggest concern if what I would do if my JPouch fails like in many similar cases. I had a total colectomy and never got used to my ostomy bag. Those were the most difficult months of my life. My question is: Does anybody who has JPouch and Crohn’s can deal with both or mostly... [ more ]
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J-Pouch ForumsHelp! Need advice now!
gallbladder surgery and the j-pouch
ksrksr
Babs52 Yes, I recently had Gall Bladder removal laproscopically ,I have Crohns and J pouch. Surgery and recouperation was very diificult. Disdended ilea caused severe pain ,post surgery. Non stop diareha for 3 Days,,still continuing. Personally, due to Crohns complications, the fewer abdominal surgeries the better, for a person with J pouch and Crohns, unless absolutely required, my Gall Bladder would stay,, 1) Pain post surgery,, violent Crohns flare up.. 2) Doctors can not tell you what to... [ more ]
Mcalen Hi, Can anyone suggest well known laparoscopic surgeons in the UK.? thanks [ more ]
Scott F Most cholecystectomies are done laparoscopically these days, at least in the US. It's fairly easy to find sugeons with experience in this procedure, and they will have all run into adhesions before. The key is to find a surgeon patient enough to work past the adhesions safely, but wise enough to know when to convert it to an open procedure. [ more ]
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J-Pouch ForumsGeneral Discussion
Where was your ostomy placed?
B BlueFlame
Aimc Right side, about an inch and a half from belly button and about an half inch or so higher. Not a good place though. A lot of my pants waist sits at about the same place . [ more ]
Bubba1028 Lower than my belly button about two anchors to the right side. A little too close to the belly button bc I has leakage near that area due to the round part of my belly. [ more ]
CTB23 At the upper right area, just about an inch and a half from my zipper line. My surgeon asked where my typical waistline would be and based it on that. It seemed to work out well enough [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
J pouch surgery pre babies
MeganEMeganE
MaraGirl1104 I’ll chime in since this thread is recently reemerging I have had quite the trying to get pregnant experience. My husband and I tried for about a year and nothing- I had a laparotomy and they found super bad endometriosis and lots of scar tissue from my Jpouch surgery in 2006 which my obgyn was able to laser off. We then tried again for almost 2 year and finally after IUI’s, multiple rounds of clomid etc. decided to go to IVF... first time and yep! I am pregnant!! I knew when I had my JPouch... [ more ]
MeganE Aw I know, every month is just so crappy. Good luck though, hopefully it won't be too long!! [ more ]
Bubba1028 Aww this is wonderful news! My husband and I are trying right now- had my takedown last fall. Only been trying for 3 months and nothing yet. Getting a little frustrated and sad. [ more ]
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J-Pouch ForumsGeneral Discussion
colitis to Crohn's - what's up with that?
HockadooHockadoo
Scott F There are indeed some reliable diagnostic markers of Crohn’s that may be seen on biopsy. Unfortunately most cases of Crohn’s don’t have those manifestations, so less reliable diagnoses are commonly the best that can be managed. [ more ]
n/a Absolutely biopsies can confirm UC vs. Crohn's, IF the biopsies are taken from areas which contain the hallmarks of Crohn's. These hallmarks can include Granulomas and Pyloric gland metaplasia in addition to other markers. These were seen on my biopsies the last few years. My local dr. had suspected Crohn's with the symptoms I had for quite a few years. My doctors at Cleveland Clinic definitively "confirmed" Crohn's with my biopsy results, on top of the other symptoms I'd suffered from -... [ more ]
CTBarrister I am not aware of Crohn’s being “confirmed” by biopsy (or not). There are various diagnostic tests for IBD including the MRI and CT enterographies, the capsule endoscopy and the Prometheus tests. If there is a diagnostic biopsy test it’s news to me, but I will see my GI next week and ask. Typically the biopsies I have had done in the past were to confirm whether any inflammation is cancerous or precancerous, not Crohn’s or UC. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Reversal in March, what products to have ready?
BenBBenB
BenB I'm home from hospital, was in there for a total of 3 days. Stomach is sore but everything is working. Now the training begins [ more ]
Bubba1028 I got those pad things from amazon! Good luck! [ more ]
BenB That's nice to hear, I thought Id be attempting to hold it every time I needed to go. I understand it's going to take time. I'm ready to give it my best I'm very fortunate that one of the stoma nurses I see is a J-Poucher herself. As the date approaches questions are popping into my head, ill have to have another chat with her [ more ]
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J-Pouch ForumsGeneral Discussion
Crohn’s and cannabis
HockadooHockadoo
bluemusic4us you should speak to someone with experience for sure. Marijuana actually has quite a bit of anti-inflammatory qualities. More the CBD side than the THC. [ more ]
CTBarrister I assume your question is about symptom relief and not actually treating the disease itself. If you are in a medical marijuana State, speak to your GI about it. It’s not going to do anything about the inflammation (which hopefully the Stelara will treat) but could help with some of the other symptoms (cramps and pain) until the Stelara kicks in. [ more ]
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J-Pouch ForumsGeneral Discussion
How to deal with fistula and incontinence?
E ElSur
ElSur Thanks for your answer, JHendrix. I have thought about that as well but it doesn't help me when I go out as I can't store it anywhere Right now I'm just wiping normally when I'm away from home. That usually doesn't happen that often anyway so it's okay (but obviously not the best either). My biggest problem is the incontinence and the obligatory use of gauze dressing pads. About the stem cells I can't tell you anything new, sadly. Searching for Cx601 on Google should help more than I can... [ more ]
JHendrix There are very inexpensive 'portable bidets' which are pretty much just a squirt model but they spray quite well. I fill it with warm water when I'm away from home and it works very well. I got mine on amazon. About $15 I think. I'm curious about the stem cell treatment. Could you provide a bit more info? Thanks. [ more ]
ElSur Thanks for your answer, Scott. But I don't have that much problems with using the shower at home. The bidet would only help at home as well [ more ]
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J-Pouch ForumsGeneral Discussion
College Dorms
M Momma
CTBarrister My personal opinion is you are better off with a bigger communal bathroom with numerous stalls (situation I had at UConn in post described above) than sharing a single toilet with a few people. Reason why is people with IBD tend to monopolize a toilet, as well as the omnipresent toilet availability issue. This was never an issue for me at UConn nor did I have to worry about someone being in a single toilet when I had to make the mad UC rush to the bathroom. UC is characterized by... [ more ]
boy's mom Adding on to the question - do people think they are better off sharing a bathroom with just a few people or better off a bigger bathroom that has more stalls? Also for Bubba1028 - can students get their own bathrooms ever if you know? [ more ]
JJA In the 90s when I was in college, I got a letter from my doc (I missed fall semester due to colon/pouch surgeries) that I needed easier access to a bathroom. Typically at the sophomore level you were getting put 4 people to a 2 bedroom apartment with 1 bathroom. I got permission to get a 1 bedroom, 2 people, 1 bathroom set up. After that my bathroom habits had pretty much normalized, so I never requested anything else special. [ more ]
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J-Pouch ForumsGeneral Discussion
Postop Ileus= no joke...
NativeNative
Jaypea Yup, 10 day ileus after my j-pouch creation. My bowels do not like to be manipulated at all. That dreaded nose hose was the absolute worst part but the relief I got from the nausea, pain and vomiting was good. I still remember the joyous feeling of that first “fart”. Even the accompanying “code brown” was a sight for sore eyes. [ more ]
CTBarrister I had one post op (too much narcotics), NG tube was forcibly inserted by doctor who manhandled me (I resisted), but he did an amazingly skillful job of getting it down. It was in for around 24 hours and I pulled it out, earning me a stern rebuke from the hospital nurse, but I knew the Ileus had passed because Ileo bag started filling fast and furious. This was back in 1992 when they used “one size fits all” NG tubes. Pediatric tubes, much like cellphones, simply didn’t exist in 1992. Making... [ more ]
Native That first blast of gas i may actually dance down the halls. I really sort of wish they would have kept in the ng tube until just in case. They just sort of up and decided to remove it after they pulled 2 immediate liters off and then only had 400 overnight with a tiny bit of stool. Oh well. Mybe it will resolve and avoid a SECOND dance with the ng. Thanks for the reply! - Native [ more ]
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J-Pouch ForumsFAP Forum
Tired and depressed and sick
Summer LilySummer Lily
Brian B Tampa Also, my fatigue has been so bad that I usually just rest all day and use the bathroom. Any time I eat I pay for it with diarrhea. I run the risk of having an accident if I go anywhere. My quality of life is far worse than it was before the surgeries. [ more ]
Brian B Tampa I don't know what new things I may have, my doctors have not been very good at following up in seeing me or in reviewing my test results. Since my reattachment, I have had terrible diarrhea and also developed a terrible hernia. They scheduled surgery but since the diarrhea was so bad they did a bunch of tests. I tested negative for C-Dif but they did not give me results for any other tests. Neither my GI nor my surgeon have followed up and called back on a dozen calls to their offices to ask... [ more ]
Kevin Lacombe Hi There, I know its a little late for a reply but I fell on this post and wanted to share the pain and also to share a word of encouragement. I have Gardner syndrome with high grade dysplasia for the last 5 years even thought I have had the "Surgery". I also have both of my daughter with Gardner Syndrome. I have my 9 years old daughter that was released this week from here first phase of the IPAA operation. She currently has a temporary ileostomy and she hit every complication possible so... [ more ]
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J-Pouch ForumsGeneral Discussion
Feraheme IV Infusion
JD Jeff D
DeniseLise Doctors seem to prefer iron IV these days but it can also be given by intramuscular injection. The side effect is that it can be slightly painful. I used to get them 20 years ago. Now I get iron IV (paid for by the Canadian tax payers) and when you signs the consent and read all the possible side effects, one of them is actually death! It does seems to be a fairly routine safe thing now but that's what ir said. The IM injections would be much less expensive if your doctor would prescribe it... [ more ]
drone3 The financial strain is really tough, it's very different here in Australia where health is affordable for everyone. From my personal experience i could not tolerate oral Iron tablets as they gave me diarrhea and bleeding. I get Iron infusions 3 times a year and they work really well although it can take a few weeks to feel the full benefits. [ more ]
JHendrix I am so sorry you have to experience this. I can't imagine going through the stress of finances on top of what you're going through medically. It is insane as you say. It reminds me to be extremely grateful as where I live it is entirely covered under government health care. I too have been scheduled for iron infusions as well has Humira and I won't pay anything. Granted, our taxes are likely higher but I have certainly come out ahead with all of my surgeries etc. I truly do feel for those... [ more ]
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J-Pouch ForumsGeneral Discussion
Top J Pouch surgeon in Nashville, TB
R RNJ1950
Native I had my surgery at vandy on 4/17/18. Still in due to postop ileus and had ng tube. Its a rough operation haha but my surgeon was Dr. Timothy Geiger. Been at vandy since 2010. He says he does about 6 pouches a year. Straight out of residency did 12 pouches per year for a while. Hes the cheif of gen surg at vandy and very well respected. I have a lot of healing to do but he was very happy with the operation and is always willing to sit with you and answer any questions or concerns you might... [ more ]
Jfill21 Hi RNJ, Sure, I’d be glad to share information with you. I had narrowed down my hospital selection to the Cleveland Clinic, Johns Hopkins and Mayo Clinic. I picked Cleveland since so many j-pouch surgeries have been performed there, especially the CC in Cleveland. Then came the surgeon selection. I’m sure that you’ve reviewed the doctor bios, read their specialties and where they went to school. I did this for weeks on end, but I kept coming back to Dr. Tracy Hull. She’s been a staff surgeon... [ more ]
RNJ1950 Thanks for the response. I am 67. If you feel comfortable sharing the name of the doctor who did your surgery I would appreciate it. Of course, I have only heard good things about CC. But, it is almost 600 miles from where I live. So, I am a little concerned about the trip home - either being driven or flying. What complications have you had after the surgery (if you are comfortable telling me)? Please feel free to share about staying there, how to cope with long distance logistics and... [ more ]
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J-Pouch ForumsPouchitis
Low white count on Immuran
J JJA
JJA In case anyone reads this old post, I went off Immuran for 2 weeks. Symptoms kicked up, which wasn't great, but white count improved. They put me back on Immuran at a slightly lower dose and so far, things seem to be going well. I retest again in about 2 months to make sure counts are holding okay at this lower dose, but the good news is symptom management is back again, even at this lower dose. I had been on a diet and losing weight, so being at a lower weight I probably needed less of the... [ more ]
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J-Pouch ForumsPouchitis
Unbearable butt burn
K katenet
katenet I used everything I could find: lidocaine and a hot bath to get a belladonna/opium suppository in then spasms went nuts so 5 mg of Valium then compounded nitroglycerin clear liquids the next day okay now thank you [ more ]
Bubba1028 Just seeing this now. I’m sorry i don’t have suggestions for you. How did u make out? Is it any better?? [ more ]
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J-Pouch ForumsK-Pouch Korner
Surgery in February
ReenieReenie
JanW2 Hi All, To Tommy, my great sympathy, hope you are healing. Kpouch is so misunderstood. I got mine last July by Dr Dietz at University Hospital in Cleveland, who had left CCF . It is my understanding they no longer have a specialist for kpouch at CCF. I was a patient there for 19 years in colorectal dept. My gastro is still there though , but Dr Dietz is quite a master at The K that I will definitely continue seeing him. Sending prayers to you and your husband j [ more ]
skn69 I am so, so sorry...this is awful...not the loss of the k pouch but everything that you are going through with your husband...I am sure that he knows what a wonderful wife he has and how lucky he is that you are standing beside him through all of this...not many have or would. I do not know how he is handling all of this, it is a huge strain on his body and is going to tax all of his reserves so please make sure that he is well supplemented in order to get all of his old energy back. My... [ more ]
JLH what a frightening experience and I’m so sorry for the frustrations and of course needing to settle for less than what one expects and deserves. I too had peritonitis, although it was due to a failed one step j pouch surgery and the only option was the external bag, which I had for a year. Peritonitis takes a lot out of one and be as patient, as best you can, with the recovery. It was some years later that I got a k pouch and I share your frustrations with doctors not knowing or caring about... [ more ]
See all 13 replies...
J-Pouch ForumsPouchitis
Remicade skin reaction
MsshoeMsshoe
Msshoe Boda, thanks for the information. I will be taking Dupixent on Monday which I hope will speed up the the cure of the skin lesions after remicade leaves my system. I will definitely not be taking it ever again. Scott, thanks for the update. I bought 2 syringes of dupixent today for a cost of $3100 +. I will take your advice and ask my doc to go to bat for me and see what happens. If they say no, I will not be any worse off than I am now. Like you I am able to afford the drug, but it kills me... [ more ]
Scott F My choice with VSL was to pay for the stuff, and keep pressing the insurer for reimbursement. I knew there was a risk I’d end up out of pocket, but I wasn’t willing to delay therapy until they grew a conscience. I know that I’m lucky to have been financially able to take that risk, though. [ more ]
Boda Hi my daughter was on Remicade and was getting awful weeping skin lesions or sores all over. We had the derm look at her and she said it was probably a reaction to Remicade. She also said it is not uncommon to have skin reactions and to just treat it with a steroid cream. We did and a few months later she had a bad reaction to it during an infusion. She had to stop taking it and when it was out of her system her skin cleared and she hasn’t had a problem since with her skin or her jpouch. She... [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
Green output
mzmcgee1232mzmcgee1232
mzmcgee1232 Wow I been eating like 6 twizzlers a day... an was wandering why I kept seeing traces of red.... lol... Thank you for the input... I'm still trying to figure it all out... it's been a little over a year since I had my jpouch...so new things keeps coming lol [ more ]
skn69 Beware of blueberries too...makes it green...vegetable chips (beetroot, purple carrots etc) they give you all sorts of colors and any gummies, kool-aide, various colorful kids' candy...all make for interesting output colors...my favorite is Twizzlers and their new flavors...all sorts of surprises! Sharon [ more ]
mzmcgee1232 omg lol [ more ]
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J-Pouch ForumsK-Pouch Korner
Kock Pouch Complications
MJ0917MJ0917
skn69 Thanks Janet, What you describe is a peristomal hernia...a hernia close to or right over the stoma area...causes it to no longer be held tight by the muscles and move, twist or bend. Yes, I made a list and can add a few other here... 1. Pouch slipping off of the wall...happens often post-op, after a trauma or 6 weeks post op when the temp sutures are absorbed (if they use temps) and the pouch is not yet attached to the abdomen...it can slip "off the wall " either totally meaning it is... [ more ]
JLH hi all--excellent list and great explanations with refs. thanks so much. also glad you are not having any complications at the moment!! sharon had also made a list some time back. perhaps she recalls the post and can include it. would add hernia adjacent to valve. in my case it dislocated the valve, which resulted in difficult insertion of the catheter. the surgery reinforced the area around the hernia, although some surgeons stitch in a mesh around the valve. let's all stay well! janet [ more ]
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J-Pouch ForumsK-Pouch Korner
bleeding
Rosie128Rosie128
skn69 It happens Rosie, It is usually nothing...you nick or scrape something inside and then there is a copious amount of blood for a few hours or days...do not worry...it usually goes away rather quickly. Try dipping the cath in plain tap water next time or use some vegetable oil. Sharon [ more ]
Rosie128 Thanks, Janet. I was so nervous I called and spoke to Nurse Susan Kay and she reassured me that because that area is so vascular, a small cut will make for a good amount of blood. She recommended irrigating with ice water so that the cold would constrict the vessels and to use lots of lube. It is much better now, almost completely gone from what I can tell. It is like PTSD, when I see a lot of blood in the toilet, I instantly flash back to my UC days..... It makes me realize that although I... [ more ]
JLH hi--sorry for the bleeding. it is always frightening. when i had difficulty intubating due to the hernia/slipped valve problem i frequently would nick the valve or some region near it, and this caused bleeding. a scan to assess the hernia assessed that this was the source of bleeding. the doctor called it an ulcer, but discussion with him narrowed it down to the catheter causing the bleeding. perhaps ulcer is a loose term, i don't know. i was super careful, used lots of lub and it healed on... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Entero- enteral fistula
A Aimc
Aimc Thanks for the reply Jeffsmom. This fistula is in the lower left side. That's all is said in the report from the barium enema x-ray. Man all this stuff we go through, right. I think most of use still will and have gone through with our surgeries. I'm hoping if this thing has been fixed that my take down will be may 15th. If not, I will do whatever else the surgeon wants to do and hope for the best. [ more ]
Jeffsmom Hi Amy. Yes it is fixable. I’m not sure what kind of fistula this is, but my son had a fistula from his pouch to a huge collection in his pelvic cavity. It was diffficult to locate and more difficult to repair. I don’t know where you are located, it he was and is being treated in NYC. They fixed it with a biological plug. It worked in that leak, now he has a new one. One day at a time! Good luck. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Abscesses?
L Laraweb
Laraweb Thanks Scott appreciate the reply. hopefully the doctor will help me figure out the cause rather than just treat it again. [ more ]
Scott F Sometimes an abscess can recur because it didn’t fully resolve when it drained. Sometimes it may recur because is has a connection to the gut - a fistula or a sinus. And sometimes the condition that led to first one still exists, and leads to a brand new one. [ more ]
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J-Pouch ForumsGeneral Discussion
Meat and inflammation
I iHateColitis
Gary54cal Agreed . I eat more chicken than meat. Have difficult days when eating meat especially if not good quality. Also have mashed potatoes and light pasta with the chicken and do very well with that combo. Easy to digest and have good soft stool. [ more ]
Tom Havenner I would think eating carbs will increase ones suger level then a protein diet and would cause wight gain but I'm not sure how food affects the immune system [ more ]
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J-Pouch ForumsGeneral Discussion
Surgery fears - questioning my decision - pouch removal
SaffSaff
Saff THanks JenJen, did you have your pouch removed? Do you still have arthritis now? [ more ]
JenJen Just chiming in as your symptoms for the removal of your pouch sound a lot like mine... If cuffitis is a significant problem (me too) it will likely be recommended that you have that removed as well. It makes no sense to keep the tissue with issues. Likewise, even the remaining diverted pouch can still be an unnecessary site to leave intact for inflammation. Given your experience with arthritis.... if it’s rheumatoid (like mine) and related to systemic auto-immune inflammation, then that is... [ more ]
Mysticobra Yep. Me too! [ more ]
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J-Pouch ForumsGeneral Discussion
Looking for guidance with Cleveland Clinic Experiences
LB Lori B
Lori B Marz, Thank you! I also posted this question on the JPouch facebook page and I the overwhelming response was to see Dr. Shen! He must be amazing! I am hoping I will still heal as I am only 8 weeks out, but I have to be proactive about it as well. I currently have a temporary ostomy and I am wanting to get rid of this thing asap! I know the best thing is to stay "diverted" with the ostomy so if I require another surgery I am already diverted. This was supposed to be a 3 month ordeal that is... [ more ]
marz dr. Shen is who you want to see at Cleveland Clinic in Ohio. It make take a few months to get an appt, but if you are persistent (and call everyday) there may be a cancellation. He is the one who found my problem (with a k pouch) after I went to 4 other doctors in different states. Looking back, I should have gone to Dr. shen first, but since I lived near Boston I decided to go to Lahey clinic first since it was close by. DR. shen found my problem immediately after my first scope with him. [ more ]
See all 2 replies...

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Bill Johnson founded the J-Pouch Group in 1997.

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

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