Calmo
Visbiome

Skip to main content

Topics

Sorted by last update

J-Pouch ForumsGeneral Discussion
Jpouch revision surgery at Cleveland Clinic
ReginabeanReginabean
CC Rocks Had all my surgeries at Cleveland Clinic back in 2010 best place ever. I had a private room for all my surgeries. You need to contact someone in the Office of patient experience. You need a patient service navigator to schedule a private room if there are any available. They put you on a list. My husband called well in advance of each of my surgeries 3 total to make sure I ahd a private room. i have awesome insurance, so my insurance overed what a regular room would be on the colo-rectal... [ more ]
ActiveUC'er I just had my surgery at the CC two weeks ago. I don't think they have any private rooms in the colo-rectal section. The staff there are excellent (from nurses to na's to care staff). I also think I counted 50 patient beds for only colo-rectal patients so that's definitely the place to be! Have you thought about a camping mattress as an alternative to the recliners? They can actually be quite comfy. [ more ]
Former Member Regina, I had a colostomy and jpouch surgery at the cleveland clinic and I have nothing but wonderful things to say about them. The nurses were wonderful, and I always felt taken care of. They are also great post surgery, if you every need anything CALL them, they are so helpful! They set me up with a stoma nurse and I was given plenty of supplies to get me through for a while at home. Good luck! [ more ]
See all 12 replies...
J-Pouch ForumsGeneral Discussion
Too early for a salad?
fqfq
CC Rocks Had a salad not until 8 months after my takedown, my surgeries all went pretty smooth but I ahd issues after my takedown emptying my pouch found out I had paradox and had to have physical therapy and pretty much liquids for a long time. Now I am on a high protein low to no fiber low to no sugar diet that is waht Dr, Shen at Cleveland Clinic recommends for me. But I am able to eat whatever I want including salads vegetable and nuts, but i don't digest them well they pretty mcuh come out... [ more ]
CTBarrister If you have not had any of them try them one at a time. I had the Savannah Salad with grilled chicken for lunch today. We (my office) order lunch every Friday from a local restaurant called Eli's, and we all get salads because that is what they do really well. Here is the menu: http://www.elisonthehill.com/d...ford_dinner_menu.pdf [ more ]
fq thanks for the responses! i thought about ordering a salad for lunch today, but i chickened out and went with my usual chicken dish i might try a small side salad soon. DJBHusky - the Savannah salad sounds scrumptious!!!! i haven't tried most of the foods listed in that salad - except grilled chicken and cheese. Maybe I need to try one ingredient at a time? like have a little chopped tomato one day, black bean another day, chopped romaine another day, etc.... if all goes well, combine them... [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
fistula, fissure = FLOP?
fqfq
Spooky Glad to be of help! Haha. My cat is shy with new people so you wouldn't have to worry about her! Some people find that investing in a bidet is a good way to manage fissues--less wiping cuts down on the irritation. Alternatively, wet wipes or baby wipes can be more soothing that regular toilet paper so that's an option as well. And, of course, the recommendation not to strain when having a BM, which can cause fissures to occur, or make an existing one worse by tearing at it. [ more ]
notsotough People with colons get fissures commonly - it is an 'outside' event and will not cause any pouch problem. [ more ]
fq Spooky, i could hug you! i was crying last night, feeling like i am alone and these things will never heal. you gave me hope today. i appreciate it. p.s. i would hug your cat too, but i'm allergic....it's so cute though! [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Help - need Dr. Shen article on NSAID and pouchitis
ElmerFuddElmerFudd
ElmerFudd Thanks all. This is good information to have in my back pocket - literally. Steve [ more ]
vanessavy All articles and research are on this site. THE ONLY go to site for medical information IMO. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3093723/ [ more ]
TinCan If you desire the full article, I'm sure you can obtain it via a subscription to uptodate ( http://www.uptodate.com/index ). The cost is quite reasonable given the amount of information available. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Do scars eventually flatten out?
N new2thisstuff
Debra I recall 10 years ago asking about the Umpa-Lumpa belly that replaced my perfectly flat abs after my colectomy . . . and the surgeon said, "Oh, yeah. That happens after this surgery." I assumed he meant it was pretty normal. That said, my stoma scar keeps getting deeper. Add to that that I tend to keloid, my scars are still huge and thick and ugly, even after 10 years. About 4 1/2 years ago I had laparoscopic gall bladder surgery, and after that surgery the surgeon came in to my room,... [ more ]
CeeeeCeeee What I thought was a hernia near my stoma scar turned out not to be. When having a hysterectomy I had asked the surgeon to take care of the "hernia". He agreed to do so. After my surgery he told me it wasn't a hernia. I was rather out of it and can't remember what he said it was. Something tells me it is a fat deposit but I could be wrong. It protrudes. I never had a great looking belly before these surgeries. Now, they are my battle scars. When I see doctors for the first time they ask... [ more ]
Rocket Like many of you, I still have my scars that are similar to toughenough, but being a man, that is it (no children, ha, ha). I had my first surgery in 1993 when my colon was taken out. The right side is higher then the left on my body too. Then I have another scar from Kidney Cancer on my right side. JenniferG, No way am I putting photos of my scars on this site. It doesn't really bother me but I am gun-shy about going to the beach or a pool. The last time I went to a water park, I got so... [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
burn so bad, you can't poop?
fqfq
fq thanks, Spooky. What causes fissures in j-pouches? I don't ever want it again, so if there is anything I can do to prevent it, i will try it. thanks [ more ]
Spooky I was going to say, this sounds more like a fissure than standard butt burn. Sitz baths and Calmoseptine help, however, you can also get prescription cream with lidocaine if things get very uncomfortable. [ more ]
fq UGH, turns out I have a fissure. !&*%$^ it hurts so bad! Doc says to have sitz baths. - What causes a fissure? - How long before it heals? thanks. [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Food Sensitivity Test
sjh2489sjh2489
sjh2489 I only ever had problems with food pre-pouch during a flair, in which I really wasn't able to eat a whole lot of anything. I think my pouch has never really calmed down since takedown. At first they told me I had pouchitis and treated it with antibiotics (just got off another dose of them on Friday) and it may have helped a little but nothing to the extent that I think it was supposed to. They then put me on VSL #3 and that doesn't really seem to do much either. I'm wondering if I might... [ more ]
suebear Did you have food sensitivities prior to your surgery? What are your current problems with food? Do you have chronic pouchitis? Sue [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Obstruction vs constipation
A akteacher
liz11 You could have a partial obstruction. Maybe stay on clear liquids and try moving around a lot, yoga poses, stretching, twisting, walking, heating pads, hot bath, hot shower, massaging abdomen and back. Anything to try and get things moving. Oh and xrays dont necessarily show obstructions or blockages. Dont know why er gave you flagyl. That might be causing more problems. [ more ]
Lizzie Knott Flagyl does slow things down a lot. be sure to drink water. [ more ]
akteacher So, I'm still not moving things very much& it's still a struggle to get much out. Can you have a bowel obstruction with no cramping, nausea, vomiting?? [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Power of Positive Thinking...Does It Work? Pluses of Pessimism?
fqfq
TE Marie Hi all, This has been enlightening for me to read. I've always been a Pollyanna, glass half full kind of person. It's gotten me through some pretty rough patches. I'm in therapy too Rocket. I've had sessions similar to yours about trauma in my childhood. I have fibromyalgia and have been getting massages twice a month for years. My massage therapist pointed out that every time I saw my mother I had UC flare. She was right. My mother abused me as a child and continued to find ways of driving... [ more ]
Jan Dollar Excellent point! You can't use positive thinking like a magic wand to undo reality. But, you can use it to help you accept and cope with complications, without them unraveling your life. Granted, some patients were sort of given a too rosy expectation. I imagine in some cases it was the patient who chose to hear only the "good stuff," but probably just as likely that the surgeon glossed over the potential complications like the fine print in a contract. Shame on them if they did not tell... [ more ]
Onwisconsin Rocket. I agree that helping other has a huge positive impact on yourself as well as the others you help. I think it is why I became a teacher. I feel like my time is being spent worthwhile. Positive thinking releases endorphins, which have been shown to aid in the healing process. Its not a stretch to say positive thinking can help heal you. The pessimism in this sense seems more like bracing for reality. If you think a life changing event like J-pouch surgery is going to be sunshine and... [ more ]
See all 20 replies...
J-Pouch ForumsGeneral Discussion
Crazy high B12
nikikinikiki
nikiki Thank you jan. [ more ]
Jan Dollar Yes, they should. But to be sure, the basic liver screens are AST and ALT. Jan [ more ]
nikiki I'm not doing B12 injections, but do take Forvia multivit only 1/day, and it does have really high B12. But I was on it for years with normal B12 and then all of a sudden it was high. Would liver problems like you are mentioning show up on a comprehensive metabolic panel? I just had one done a few days ago and the numbers look within normal range. My albumin is at the lower end of normal, but still within range of what is considered standard according to the numbers provided on the lab... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Impaired bone healing
ConnieConnie
kta I broke my fifth metatarsal and it ended up being a Jones Fracture - a break in a place notoriously hard to heal. They did put in a screw and it took a LONG time to heal, but it finally did. I also had total foot reconstruction on my right foot and the docs never seemed concerned about the UC/immune system. This was at Harborview Hospital with University of WA docs. These guys are considered the best around here. The whole foot thing was hell. I actually think it was worse that the j-pouch... [ more ]
Connie The last surgery was at Stanford, so we feel like we've already been to Mecca. Only reason we're giving UCD a shot is that they have this new bone marrow process . The trials are only for long bones, but the researcher can collaborate with the foot specialist--who went to Temple and Harvard and seems pretty knowledgable--to get it into the foot. Otherwise, we're about at the end of the line. [ more ]
suebear I've never heard that. Is there a way you can get him to UCLA for a consult? I think they see a lot more anomalies than the smaller metro hospital's. And a second opinion, after two failed surgeries, might not be a bad idea. Sue [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Pepto Bismol
runner4449runner4449
runner4449 Thank you all for educating me on why and how PB can be helpful, and issues to watch out for when using this product. Hope everyone is having a good week. [ more ]
Spooky I have to agree with Lew; for me, less is also more. Just to further explain my earlier post, I always have PB on hand but I will only use it (and by that I mean 1-2 doses) if I feel something is simmering. A few months ago, I started taking it more regularly. I had come off a course of antibiotics for an unrelated chest infection, and the antibiotics really threw my pouch out of whack (gas, frequency, etc, etc). So I stopped the antibiotics, and then I started taking PB daily for a few... [ more ]
Lew Runner I used to take Pepto Bismol for minor pouchitis but haven't used it for some time. While I found it helped but I learned over time "less was more". I would take 2 at a time but only to a maximum of 4 tablets per day. I found taking more actually caused me problems. Good luck with it. Lew [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
urine sludge, gross topic but...
G Guest
vanessavy You always drink and eat at least 30 minutes in between eachother not together. I had a gastrectomy so I learned all about eating and drinking together. I am usually too full to drink up to 2 hours after I eat. Always a daily battle. I hear ya on New York though! My pouch does it's best up there. I have pouch issues that I think are allergy related since when I am out of town I do 100% better. I come back to Texas and have to go on antibiotics again and have crazy stoma output. In Florid... [ more ]
Epic Scotsman If you're not taking it already, you could try immodium. Supposedly one of its affects is improving fluid uptake. [ more ]
Jan Dollar Actually, from what I have read (and personal experience), the opposite is true. You should NOT drink when eating because that tends to move your food through too fast. Then you don't absorb enough nutrients. I think the key is not to drink large quantities at a time, but sip all day long. Avoid sugared drinks, and caffeine if you are sensitive to it. And bottom line, don't listen to THEM or even US, if the advice does not work for you. That is why you will keep hearing over and over, this... [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Anal Fissure ongoing saga. Jan?
D DaveInNorCal
DaveInNorCal Another question: He plans to do the injections under sedation. Is this typical? Thanks. [ more ]
DaveInNorCal Thanks Jan. I guess I'm just wanting to preserve my options and can cope with the pain. However, having had three abdominal surgeries, three orthopedic surgeries, and having crashed a motorcycle resulting in three broken ribs and road rash, this is the most painful thing I have ever experienced. [ more ]
Jan Dollar Yes, Botox is low risk (closer to no risk), but, if there was non-healing or recurrence after the Botox wore off (3 months), then surgical sphincterotomy was the next likely choice. This probably would not alter your future possible j-pouch surgery. I do agree that consultation with Dr. Varma would be proper before proceeding with that. Botox performs essentially the same function as surgical sphincterotomy. I think the main thing you'd need to think about is how much time you want to devote... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
J-pouchers to meet at Las Vegas CCFA Race
S Subzeromambo
Subzeromambo Thank you for the encouragement! It is a lot harder than I expected. Today I ran three miles with feeling of glass shards shifting around inside. It was a rough day but I am sure tomorrow will be better. [ more ]
Former Member Good luck! I have done the race the past two years in honor of my daughter, who suffered so much from colitis until her j pouch surgery, as well as my mother and sister who have chron's. You will a great time- it is very inspiring to see people who have lived with these diseases go out and run! You will be joined by thousands of others who have been through similar struggles. Enjoy! [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Hematologist appt for chronic anemia/iron infusions
mgmt10mgmt10
mgmt10 I thought I would update this since there may be some people dealing with the same thing. I had my 3rd iron infusion today and I have noticed a difference already that they are helping. I have 5 more to go. I still haven't seen the doctor again to go over my blood work results but the nurse giving me the infusion said that if they didn't call right away then nothing alarming came up in the blood work. Whew! This is definately working better than taking oral iron 2x a day and getting nowhere. [ more ]
mgmt10 Hi beckysmom, Thanks for asking. I go tomorrow for my first one. On the sheet they gave me it says I am getting Ferrlicit. [ more ]
beckysmom Marianne, How did you make out? Well I hope. what infusion did you get? [ more ]
See all 19 replies...
J-Pouch ForumsGeneral Discussion
Augmentin Antibiotic for Pouchitis
J Jpouch8888
John95 Augmentin hasn't been effective for my pouchitis as of yet, but I do know that it has worked well for many people on this forum. Perhaps it will work for me in the future. Sometimes an antibiotic works, then it no longer does, and then later it works again. There are many antibiotics which successfully treat pouchitis beside Cipro and Flagyl. In many cases, it's trial and error for an individual. For instance, Bactrim DS worked very well for me before I became resistant to it. I'm optimistic... [ more ]
CTBarrister Augmentin is in my rotation, which is cipro and flagyl, xifaxin, and augmentin. I rotate onto augmentin next week. They all work for me with no side effects, but cipro and flagyl work best. [ more ]
jeane I have been on augmentin for over a year for pouchitis with very good results and no sude effects. I believe they do not prescribe it as often as other antibiotics because as my gi has indicated it is the big gun antibiotic and the strongest one out there. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Newbee
T TG
TG Many thanks for all you replies. Some of you quite negative and some very positive. I'm very well and 16 days after my second op went to Greece for ten days with my wife and 11mth son. BLISS. IMHO being fit before ops (i swam 10km day before #1) and active before/after #2 (still swimming every day - 10x25mtr easy rate), with a positive attitude will help what a good surgeon has already done - i do think i am fortunate having have had a great, kind and thoughtful chap do my op... [ more ]
Rocket TG and Nikiki, I am fairly new to this site too and wish I had found it sooner. For the most part, we all have ups and downs when we are feeling good and when things are not going the way you want them too. But that is true for everyone of us. Epic Scotsman could not have said it any better. Well put Epic. I had UC for 8 years and although my life is not perfects (whose is? no one), and I do get pouchitis it seems every year, its much better then having UC. That was a living nightmare. Also,... [ more ]
nikiki Welcome TG. I too am fairly new to this board, and it has been a huge and happy relief for me to find a community like this after so long without one. I've had my pouch for 10 years and even with the complications I have had, it has been much, much better for me than ulcerative colitis. I'd take this over UC any day. Happy healing to you! [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
FINALLY got a GI appointment
SpookySpooky
Pouchomarx its the "Ass man", lol.. Seinfeld reference. [ more ]
CTBarrister Good luck with the scope, let us know how it goes and post the pics if you want. [ more ]
Spooky Quite impressed so far! GI's name is Dr. Van Assche and he's extremely well versed in the pouch. I went in expecting to have to explain everything and he just KNEW stuff. *LOL* Anyway, having a pouchoscopy next week (first in almost 3 years) and if all is good with that, then I only have to go back for annual follow ups, with perhaps a pouchoscopy every 2-3 years. But I'm pleased so far! [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Getting off Prilosec
RM Rowans mom
Jan Dollar Before you panic, consider the likelihood that this is happening is low. There was only one study that showed this, and that was for very high doses, and mostly with quinidine. Drug addicts have tried it with pepper, and yes, Prilosec, but again, with huge doses of loperamide. It is more likely that this is a safe combination. http://www.ncbi.nlm.nih.gov/pubmed/20604828 Still, omperazole is not something you want to stay on indefinitely unless it is really needed. That is because it can... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Vomiting & j pouch
FM Former Member
Former Member I appreciate the input. My daughter had wondered if it could be from being too full. I have considered obstructions, etc. because we've dealt with them in the past but she is still passing stool normally while these episodes take place,so I didn't think that was it.I will definitely look into it. I had her surgery date wrong as well-it's only been a year, not two, so I know there's still adjustments to be made. She struggled with numerous complications prior to the final take down- its so... [ more ]
tulsamom What you describe sounds like partial obstruction. Pain and vomiting could be because the stomach content can't go anywhere. This can be cause by inflammation, scar tissue or strictures. I would suggest you search for this on this website and see if it sounds like what your daughter is experiencing. Good luck to you both. [ more ]
Laurie49 JPouch Mom -- I've had my pouch for 16 years now (wow! I can't believe it's been that long!) and I get nauseous if my pouch is full. I know it sounds weird, but there is a direct correlation for me. It happens a lot during the night. If I wake up feeling nauseous, I will realize that I need to empty my pouch. I'm certainly not saying that this is what is happening to your daughter, but if it is consistently happening at the same time of day, perhaps it's because of having a full tummy from... [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Anxiety over the bathroom?
M Megals
Spooky Oh yes, loo was quite common while I was in the UK. But "loo" is a term we use a lot in Canada as well, at least I do. Still, I've also always wondered the origin of the term; but I guess it's the same reason why many people in North America call it "the John"! [ more ]
KiwiPoucher Thanks for that explanation! Expect you came across the most commonly used name when you were in England...."Just popping to the loo!" Now I am wondering where on earth "loo" came from, will have to do some research. [ more ]
Spooky KiwiPoucher, In North America, toilet itself isn't a rude word; it's more when/how it's used. For example, in North America, it's not considered proper etiquette to ask, "where is the toilet?" or (such as for a student) "May I please go to the toilet?" You would normally say, "where is the..." or "may I please go to the washroom/bathroom/restroom." (Or you may even say, "I need to use the ladies' room or little boys' room." *LOL*). I've spent some time in the UK and I admit it took me a week... [ more ]
See all 29 replies...
J-Pouch ForumsGeneral Discussion
traveling home shortly after takedown
G Guest
Guest i would love to leave right from the hospital. were so eager to get home... [ more ]
Srf1 A couple of things to keep in mind. You'll be just starting out eating again following takedown surgery so your diet and the amount of material in your system when you get discharged will be pretty limited (liquid/semisolid diet). As mentioned the narcotic pain killers will slow you down and hopefully you'll find a "window" of time when your new pouch is nice and quiet - for me it was morning till early afternoon. If you can find out what your hospitals discharge policy is you should be able... [ more ]
Guest how do people travel from other cities states and countries like i read about. they can all afford to stay in hotels for a month. probably not even weeks... [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
I just want to say thanks
FM Former Member
Jan Dollar Yes, so true. No guarantees in life. But, I think generally, this surgery is not done on a whim, but because there really are no better alternatives. There are no colectomy options that are completely without issues. You just have to pick which issues you are willing to live with and go for it. If it is a bust, you move on and go for plan B. No point in lamenting the fact you have bowel problems or shaking your fist at God about it. Even people who seem to skip through life without a care... [ more ]
Former Member A lot can be done. Life requires more planning for sure -- and maybe that's not fair compared to others who are healthy. I jut eat a small yogurt for breakfast, take Imodium before the ride, and grab a snack like granola bar to eat in the middle of my ride. Sometimes I do have to stop and find a bathroom. It happens. I tell you one thing, docs don't talk about it much, but exercise helps bowels physically and psychologically. Sitting still, a sedentary lifestyle, is not good with a pouch. As... [ more ]
ActiveUC'er 80km!?! That's awesome! Congratulations! I look forward to being able to do things again and hearing posts like yours is always encouraging. Even with the complications of a jpouch, it will most likely be better than the UC! [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
Eating Issues
K KiwiPoucher
Spooky Eating does increase peristalsis so if you are early on post takedown, it can take a while to adjust to the sensation. But I would agree that if you are going that much, an anti-spasmodic would be a good option. Hopefully as your system continues to adjust you can eventually reduce or discontinue the antispasmodic. [ more ]
KiwiPoucher I am about 6 weeks post takedown. On May 17 this year I had the single stage operation which took 9 hours, but then got sepsis and they had to do a loop ileostomy a week later. It is interesting being on this site that most people have it done in 2 or 3 stages, which actually makes more sense to me as it gives the J=Pouch time to heal. Saw surgeon last week and thankfully no stricture. Have been taking buscopan (anti-spasmodic) before last 2 meals and things do seem better! Thanks for... [ more ]
CTBarrister As noted above, bentyl, levsin, lomotil, donnatal. Bentyl and levsin made me feel a bit loopier than donnatal which is my anti-spasmodic of choice. [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
How should you feel after 1 year
T Traveller
fq at 3 months out, I am experiencing this too... pooping is not "smooth", discomfort and soreness afterwards, difficulty expelling the last poops and gas. i also thought it gets better in 1 year.... maybe it takes even longer for some, or maybe those are just the "quirks" and our new normal of the pouch. [ more ]
JenniferG yes, i have all those things at times [ more ]
Traveller Thanks Marianne, Kobi and Jen Can you tell me whether any of you still get pain when going, or feel uncomfortable or a little sore afterwards. I remember when I had a colon, even with UC, after I went to the toilet I felt fine until I had to go again. Also do you have periods when you are frequent for short periods e.g. 5-6 times in 3-4 hours. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Fighting Off Negative Thoughts/Negative Ideation
CTBarristerCTBarrister
Subzeromambo DJB, Your post made me laugh. Our club finally banned any business from being conducted in the exercise and conditioning areas. Members can be expelled if they receive more than two citations. It is considered "conduct unbecoming of a member." I always found eavesdropping on the lawyers and developers a lot of fun but peace and quiet is even better. [ more ]
CTBarrister I probably should listen to music. My gym has TVs on the treadmills and I try to watch the TVs with the subtitles. Unfortunately this guy spots me at the gym and he comes over and we have a bunch of cases together and he is like me, the candle burns at both ends, and he is a "true believer" for his side as I am for mine. And we both know this and that is why we get along and can actually conduct settlement negotiations in a gym. It is just the relationship we have and the way we are wired. I... [ more ]
suebear Oh brother! Stick some earplugs in your ears, turn up the music, and tune everything else out. You don't have to practice law in the gym. Sue [ more ]
See all 41 replies...
J-Pouch ForumsGeneral Discussion
IBD Arthritis - I'm so confused?
K kereen
Jan Dollar Here's the thing. You can have IBD related arthritis even though your colon is gone. It does not mean you have Crohn's. It is true that the more common form of IBD arthritis follows the bowel disease course. But the spondylitis form does not. It has an independent course. If you are willing to try, there are other biologics to try, Humira or Simponi, but you need to watch your ANA closely. There also is methotrexate. If this was lupus, you'd probably have a better result with the planquenil. [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
burping like a sailor....anyone else?
fqfq
fq thanks everyone! i think you are right, i am adjusting still. runner4449 - I re-read what I wrote and also laughed/burped out loud! i realize it's important to keep a sense of humor after everything we go through! good luck with your takedown [ more ]
Laurie49 fq -- I'd say your body is still adjusting and any way your body is releasing extra gas is a good thing. I'd give it a bit more time and if it continues, don't allow your doctor to dismiss it. [ more ]
runner4449 FQ- You gave me a good laugh in this thread. I'm not laughing at you...I promise. It's good to know it's possible to have more burping after take-down. I think I would be alarmed, too. Let us know if you try any of SKN69'S ideas, and how they work or don't work for you. SKN69 - You are very helpful in your suggestions. You've now mentioned a few things since I joined this website that I will definitely have on hand to try if certain issues pop-up after my take-down. Thank you! [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Take down scheduled
runner4449runner4449
runner4449 Thank you, SBS. I may very well see you at a future race; especially through Team Challenge. God Bless! [ more ]
SBS Runner4449, it's nice to hear the optimism in your voice. :-) It's a tough road we have to walk down, but you will get through it. No one ever says it will be easy. Best of all, you are not alone; you have a new set of friends to take the walk with you (even if it's only virtually). That goes for everyone on here. Hang in there and best wishes for an issue-free takedown. I'll be looking for you on the running trails in the not so distant future. Steve PS: love your new avatar/pic :-) [ more ]
runner4449 LIZ11 and fellow pouchers - I was at the hospital today to have my stent removed (had one for my ureter), and dropped off the article LIZ11 recommended I look at regarding J-pouch irrigation/enemas. My surgeon happened to be at the hospital today, and I asked the staff to make sure he got it and called me after reading it. I just got off of the phone with my surgeon, and I'm happy to say he is perfectly okay with me stopping the enemas. Once again, acknowledged that I'm a competent woman who... [ more ]
See all 20 replies...
J-Pouch ForumsGeneral Discussion
FYI Mt. Sinai (Toronto) IBD Group
SpookySpooky
Dixie from Saskatchewan I have a Kock pouch. When I was in Mt. Sinai for my repair surgeries I went to a couple of the IBD support meetings that were held in the hospital during the day. There were people there who had j-pouches & ostomies or relatives of those who had IBD or the surgeries as well as those who were just interested in IBD. My significant other also attended one of the meetings with me & he learned a lot during the meeting. I found the meetings most informative & it made me realize that... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Eternally Grateful
K KiwiPoucher
Jan Dollar Kiwi, Most of us have had much suffering due to IBD, FAP, or other bowel disorders, so we are all sensitive to the challenges. Some suffered longer than others, some more than others. Having a haven like this where people understand is great. Certainly, not everyone is happy or satsfied with their outcome, but most manage to adapt or find workable solutions. Sometimes it means giving up on the j-pouch. Complaining for the sake of complaining is not helpful, and if the person is not seeking... [ more ]
suebear Wow, 33 years, congratulations! Unfortunately we have a long time troll on this site, who tricks new people into thinking that he needs help, and the more people try to help him, the more it ramps up his illness, and well, things just spiral out of control. He has been banned many times but he keeps coming back with a different screen name. If the board was static, yes, on one would respond to him. Sue [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Surgeon in Kansas City area?
FM Former Member
Former Member Thank you both! I wasn't aware I had more options than the one I knew of! Thank you again [ more ]
Debthetraveler Hello! My surgeon in Kansas City is Dr Lina o'Brien. I highly recommend her. She is so down-to-earth and spends quality time with her patients. I live in St Joseph and at one point had considered going up to Mayo Clinic. But my gastroenterologist referred me to Dr O'Brien. I'm so glad that I stayed local. So much easier to travel to Kansa City instead. She is at the medical mall on Carondelet at St Joseph Hospital. I had my first surgery at Menorah, and the second and third at St Joseph med... [ more ]
Dave Russell I got my j pouch at Mercy in Springfield Mo. the surgeon was Dr. Brooks. I am very happy with the results. Mercy is a very nice hospital and gave me the best of care. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Kaboom
L Lawrence
Jan Dollar I see, particularly in light of your other thread about getting out of the negative thinking loop. It is easy to let your mind wander into the "what ifs" and worry excessively about things that have only a remote chance of occurring. Of course, the best thing to do is to encourage your rational mind to take over and concern itself with things you actually have control or influence of. Easier said than done, I know. Remember, nobody knows what their future holds, so you may as well assume it... [ more ]
CTBarrister What I meant was the high dosages of antibiotics I take, and have taken for 17 years. I asked my pouch specialist what effect long term antibiotics usage would have on my liver. His answer: "you are the Guinea Pig." He also inquired about whether I drink a lot of alcohol, which I do not, even though I posted about a recent binge in the flagyl and alcohol thread. I have had some issues on past liver function tests, with abnormalities being detected. So this thread got me thinking again of... [ more ]
Jan Dollar Actually, Rick was going to have a liver transplant, but his cancer was too advanced by the time it was considered. He initially responded to the chemo, but relapsed later on. He was first diagnosed with PSC in 2005, when he had his colectomy (he had stage 0 colon cancer at that time). The liver cancer did not show up until 2009. While most PSC patients have UC, only about 5% of UC patients have PSC. Even less wind up with cancer of the biliary system. Liver transplant is more often due to... [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
living on peanut butter sandwiches...
G Guest
Rocket This is my last response to you. I hope you truly find peace in your heart. Negativity does not come from God. God is for everyone, anytime, anywhere. For your sake, I hope you seek Him out. I don't know if you are a Christian or not, but if you are, I am absolutly, positvily sure that Jesus loves you. Take a look at the Cross and realize He loves you. He died for you, me, the whole world. Please invite Him into your Heart. If you do, your life will change for the better. I wish I could help... [ more ]
Guest Well I'm sorry that doesn't fit in your book of alternatives, and oh I'm so sorry I even tried another alternative when you're suggesting just that, yet bring up the same old pathetic options that I've heard a million times before. [ more ]
Guest Well I'm sorry that doesn't fit in your book of alternatives, and oh I'm so sorry I even tried another alternative when you're suggesting just that, yet bring up the same old pathetic options that I've heard a million times before. [ more ]
See all 38 replies...
J-Pouch ForumsGeneral Discussion
Inconsistent JPouch
M MarkBB
mgmt10 I would say yes, for quite a while I wouldn't have two of the same days with my j pouch even eating the same foods. But I have noticed now that its been just about two years since my takedown that things are much more consistent. [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Raynaud's
J Jpouch8888
Jan Dollar Maybe, maybe not. They say that autoimmune disorders tend to cluster in a person, but Raynaud's is very common. I have it, but a pretty minor case. I am very sensitive to cold now, and never used to be. In the winter, I need to wear those gloves without fingertips while I am keyboarding, or my hands cramp up from the cold (yes, my house is heated!). I was also told by my rheumatologist to avoid caffeine and pseudofed, as they can trigger vasospasm. Jan [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Belly button pain
TE MarieTE Marie
TE Marie My stoma site is two inches from my BB and I have adhesion pain there so maybe my adhesions are multiplying... [ more ]
Karbear Sounds like adhesions to me. I get the same feeling around my old stoma site. [ more ]
TE Marie I had an abscess that grew between surgeries that was cut out during take down. I had a hole under my BB that was 2"L x 2"D x 1"W - my husband just had to measure it. I packed it several times a day until it healed and it left a 2nd BB under my original one. Then I had an incisional hernia surgery and they opened up the very same incision for the 3rd time. He got rid of my 2nd BB and refashioned my original one. I've had a lot of trauma all around my BB. It's not an abscess or hernia. Those... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
older j-pouches : do you still have bad days?
fqfq
clouseau I'm 20 years out and my bathroom visits are still every 1.5 hrs on average. My UC-crohns made me more suceptible to lymphoma which I was diagnosed with 7 months ago. Sometimes I have to go every 15 minutes and in the morning I can go 2.5-3 hours, when pouch is empty. I wish I could just sleep thru half or third the night and wear depends or something but I feel it moving and can't get back to sleep. Unless I have alcohol and then I do sleep better and wake up to a bit of a mess but it's... [ more ]
Spooky Even people with colons have bad days! (in fact, I know several people with colons who have far more issues with their plumbing on a regular basis than I would even on a bad day ) But to answer your question, yes. I would say that most veteran pouchers probably have bad days from time to time. For me, a bad day is usually due to butt burn/irritation or increased gas. And, as is the case with many female pouchers, I may have some issues for a day or two around the start of my period. [ more ]
Laurie49 fq -- I can tell you that after 16 years, for me it continued to get better and better. It's not the same as it was when I had a healthy colon, yet FAR better than having ulcerative colitis. Again, it's a new normal. Be patient and kind to yourself and don't listen to the people on here who have had their pouches for over 20 years and still bitch and moan, but do NOTHING to change anything. [ more ]
See all 17 replies...
J-Pouch ForumsGeneral Discussion
Seattle GI
T TMG
runner4449 I don't have a child, or have ever known a child that is in your situation, but I really like KILLCOLITIS'S recommendation for you. When my brother's brain tumor came back, my parents were in a similar situation. They had been going to Children's Hospital of Philadelphia (CHOP), but after a consult over the phone with Duke, and mailing them all of his records, they agreed to see him and try to do what CHOP wasn't willing to do; which was to treat him despite the odds. I'll certainly pray for... [ more ]
killcolitis Since this is a huge and very serious decision I would go to Boston Children's if it were my child. I say this because I've had many opinons in the case of my child (dx UC surgery soon) and they are by far the best. I also know many parents who have had great experiences there and who live in other states but who travel there for care for their children. I know it's a long way to go (I'm in Canada) but if it were me, that's where I'd be headed. Also, you can contact them and see if they... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
J pouch with Crohns in child
T TMG
fq i think the important thing to do is to get other opinions from other DOCTORS (surgeons, GIs) experienced with IBD, whether this is truly crohn's or not. without knowing, it's hard to say what is the best option. Cleveland Clinic has one of the world's best IBD and gastro surgical centers. Most people there are good, I assume. Heard great things about Dr. Shen, the GI there. There are other places in california closer to where you live, as mentioned, like UCLA, stanford, cedars sinai. not... [ more ]
TMG Thank you all for your advise. I tend to lean towards dawn58 who said, " I would do anything and everything ( as many surgeries as it takes), if there was a possibility of having a jpouch and not a permanent ileostomy". Although, my daughter is only 11 right now, her opinion is she does not want the ostomy bag. Middle school just started and on day 3 she came home mortified by the sounds from the ostomy bag. A few kdis asked what all that noise was. She said she had not eaten but day 3 of... [ more ]
RWNC I think you should schedule a consult at the Cleveland Clinic. You mentioned your daughter has a unique situation and they are the experts. I agree with Dawn that a J-pouch is preferably mentally but it may not be interest of your daughters health. J-pouches have a high failure rate in Chrohns patients so you need to go in knowing what the risks are. [ more ]
See all 12 replies...
J-Pouch ForumsGeneral Discussion
Incontinence at night after takedown
U 1970UC
1970UC hey wisconsin....i completely understand. i think over time this issue will clear for us as we adapt and find out what our routine needs to be. be strong brother. your wife loves you regardless and trust what she tells you. i had the same feelings and my wife insisted on not worrying about it. i finally started trusting her and we have great intimacy regardless of if i am wearing my depends or not. we joke about it and that tends to help. runner....good luck with your takedown! i truly hope... [ more ]
runner4449 1970 - I'm pre-take-down right now, so I'm glad you are posting the question for people like me who are getting ready to embark on life with a j-pouch. I hope things get better for you soon. skn69 - Thanks for all of the tips you suggested. You mentioned a couple of things I either had thought of, or read about in managing night time soiling. It even helps me prepare for my take-down. Wisconsin - I hope things better soon for you, too. I know I'm struggling a little bit with the idea of... [ more ]
Guest im pre takedown and definitely notice my pouch is way more active with mucus if i eat anything with sugar. im passing way more mucus and noticeably having to hold it in more. no sugar practically no mucus so im sure that plays a part. that mucus is some slippery stuff... [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
When will the pain and spasms stop?
Uc-DanielleUc-Danielle
Uc-Danielle Thanks for the advise. I did buy some of that cream and it does work well. Monday I'm calling clev clinic and seeing if they can give me something for the spasms/cramping. But asking them for a perscription is like pulling teeth. I think it's bc of my age I just want to feel better and I just don't get why the np doesn't get it I know my surgeon would be ok with it. It's just frustrating. [ more ]
NurseAlex Sorry you are having issues. It sometimes takes a while for our bodies time to adjust to the new anatomy...just give it a little time For the spasms there are antispasmodics you can take...you need an RX though. High fiber diet also helps me. I take 6 fibercon a day and a drug called Hyoscamine which is an antispasmodic. It dissolves under your tongue or you can get it in tablet form that you swallow. There are no side effects with it either. I have been a poucher for 8 years and over the... [ more ]
Onwisconsin For butt burn, what has worked for me is avoiding all tomato products and high acid items like citrus fruit. Also avoid items high in fat, more fat equals more bile- which is also highly acidic and causes bad burn. Go buy Calmoseptine if you do not have it, best product I have found among Vaseline, A and D, and Desitin. They sell them at Walgreens- ask them if you cannot find it. It uses menthol to soothe immediately following a BM, and uses zinc oxide for long term dermal health. Use wet... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
nutritionist needed
N NJK
vanessavy I have a hard time with some fruits and veggies digesting so I get creative. I have a vitamix blender and I put all my veggies like kale, parsley, apples, straberry, spinach and spirulina (highest form of protein the body can absorb, for examples then I take the pulp that is left and I deyhdrate it into chips or a bread. that way I get all the vitamins in 2 forms. As for fruits I take coconut water as a base and add all kinds of fruit and some greens to make smoothies. I use my dehydrator a... [ more ]
suebear It was about 6 months before I could eat fresh fruit and vegetables, comfortably. If they don't work for you, canned vegetables and fruit have most fiber cooked out of them and can be a place to start. Sue [ more ]
NJK No health issues ...maybe cuffitis that I have to stay on top of because my doc does not seem to catch it..great surgeon but not so great at the medicine part. I just want to keep myself healthy and I know that raw veggies will be limited. I guess I am trying to figure out where to go from here. I guess adding one thing at a time would be worth a try. Right now I am big on oatmeal, bagels with almond butter and proteins and carbs. Not many veggies. I guess I can try to add 1 veggie or whole... [ more ]
See all 7 replies...

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.

Forum moderator and advisor
Jan Dollar R.N.

 

 

 

 

General Disclaimer

 

This ileoanal web site is designed for educational purposes only and is not engaged in rendering medical advice or professional services. The information provided through this ileoanal web site should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you have or suspect you may have a health problem, you should consult your health care provider.


Materials presented on these pages are copyrighted by William Johnson and Linda B Hurd. Except as superseded in individual documents found here, these materials may not be sold or redistributed for profit in any way without express (not email) written permission of the authors. This includes, but is not limited to, translations into foreign languages, mass archival as on a CD-ROM and inclusion in commercially published compilations (books).

Confidentiality

Confidentiality of data relating to individual patients and visitors to the J-Pouch Group Web site, including their identity, is respected by this Web site. The J-Pouch Group Web site owners undertake to honor or exceed the legal requirements of medical/health information privacy that apply in the country and state where the Web site and mirror sites are located.

 

CCFA

The Crohn's & Colitis Foundation of America,
Philadelphia, Delaware Valley chapter, is located at
521 Bustleton Pike, Feasterville, PA, 19053.
Tel: 215-396-9100


National CCFA headquarters are at,
396 Park Avenue South, 17th floor
New York, New York 10016-8804
Tel: 212-685-3440    800-343-3637

 

Join Now

Already a member? Sign In

Online Now

... and 2 more ...

Copyright © 2019 The J-Pouch Group. All rights reserved.

Membership Required

We're sorry. You must be signed in to continue. Sign In or Register
×
Are you sure you want to remove from your Block List?
×
Loading...
×
When you block a person, they can no longer invite you to a private message or post to your profile wall. Replies and comments they make will be collapsed/hidden by default. Finally, you'll never receive email notifications about content they create or likes they designate for your content.
Note: if you proceed, you will no longer be following .
×
Link copied to your clipboard.
×