J-Pouch ForumsMen's Health
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J-Pouch ForumsWomen's Health & Pregnancy
This is a great post. Thank you! [ more ]
that's right. Your fees are waved if you adopt a child from foster care! It's amazing! A US adoption can cost $20,000 and up and there is usually a waiting list... not to mention the push is for open adoption nowadays... I imagine if the child is in foster care, there is less chance of open adoption pressure. Don't get me wrong, open can really be beneficial to the child I just know some people aren't into that. [ more ]
I adopted two children a little over 35 years ago directly from children's services. There were no costs involved other than legal filing fees. How much does an adoption cost these days? With all the wonderful children who need homes, why are there any fees at all? [ more ]
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J-Pouch ForumsGeneral Discussion
Yes and no. Strictly speaking, insoluble fiber does not ferment or cause gas, because it is inert. But, many insoluble fiber containing foods, like some vegetables do contain gas producing components (think broccoli or cauliflower). So, you just have to experiment and figure out what your tolerances are. I have been avoiding a diet high in carbohydrates (which also avoids most foods high in soluble fiber) mostly because of my type 2 diabetes (same with my husband), and it seems to agree with... [ more ]
Interesting.... so then is INSOLUBLE fiber better compared to SOLUBLE for us? Does the same thing happen in our bodies if we eat INSOLUBLE FIBER? Does it also ferment in the colon/pouch? thanks! [ more ]
I'm up about 14 pounds from my low point earlier this year. I'd like to put on about 25 more, but I've got plenty of time for that. My diet plan pretty much consists of throwing different foods at my system until it knuckles under and does what I want it to. It's not always fun, but I think it will get me to where I want to be. [ more ]
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J-Pouch ForumsPouchitis
Jeane, Had my Breathalyzer test this morning which takes a boring 3 hrs to do. Every 20 minutes you breath into like a small ballon. I won't get my results from my test until I see the doctor next month. Rocket [ more ]
DJBHusky, That was funny response. I think its the Popeye cartoon. I guess our Colon must be Bruono or is it Bluto? Rocket [ more ]
The poster or the cooking oil or the character from the Popeye cartoon? [ more ]
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J-Pouch ForumsGeneral Discussion
So, I presume you have a colonic j-pouch? Your function would be quite a bit different thanmost of us here, who had total proctocolectomy. But, there have been a few with the same surgery as you. They are not regular posters though. You should expect near normal function eventually, but could take up to a year. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
I haven't passed mucus in a while, probably a couple of weeks, but when I have it passed easily. I'll be 14 weeks post second surgery tomorrow. I wish I could be of more help. Please keep us posted. Wishing you well. [ more ]
thanks very much. are you saying you dont pass mucus or you do but its always easy? this has me a little creeped out now. i was hoping to hear someone chime in and say its normal for it to be difficult to pass mucus on occasion before takedown... [ more ]
thanks very much. are you saying you dont pass mucus or you do but its always easy? this has me a little creeped out now. i was hoping to hear someone chime in and say its normal for it to be difficult to pass mucus on occasion before takedown... [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks Wisconsin, hope you can kick these cramps soon. Take care! [ more ]
Well, It doesn't seem to matter whether its night or day. They come and go at any time they please. My doctor said to eat a little less whole wheat over the next few days and I had been drinking a lot of Gatorade and he said to go to water only because the sugar might be causing problems. I am going in on Monday to check if I have a stricture of any kind that may be causing the pain as well. I did have a stricture while I had my temp ostomy, so it may have reoccurred. To Blake: they seem to... [ more ]
I'm 20 months post take down and have some advice for you all. The cramping where you stand or sit still for 10 seconds or whatever is normal for several months after take down. I found if I waited a bit after going to the loo and stood up and then sat down again more BM would come out. Your pouch is getting use to it's job and is trying to send the BM's right through like it did when it was a small intestine - that's how I look at it. Some say to hold it as long as possible to "train" your... [ more ]
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J-Pouch ForumsGeneral Discussion
You should most definitely have to pass some mucus every now and then. The cells in the lining of your intestine are constantly churning out mucus to basically lubricate the tract. The excess mucus usually comes out with everything else, but since nothing is coming out right now it's just going to be mucus on its own. [ more ]
I had the J Pouch in 3 steps, I wore the ostomy bag for 9 months and I had to pass mucous once a day or once every other day for the whole 9 months. Doctor told me it was nothing to worry about. I'm one month after takedown right now and I have been able to go out no problem. I wouldn't plan anything the first couple weeks though. I just too my son to an airshow last weekend where I was away from home for 8 hours, only went to the bathroom once this whole time. I avoided stuffing my face at... [ more ]
I had mucous after my second surgery J-Pouch formed, my surgeon told me this ahead of time so I knew it was a possibility I had it only about 2 times after my second told me it was normal to have mucous the pouch even though not functioning gives off mucous. But talk to your doctor, everyone is different. [ more ]
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J-Pouch ForumsGeneral Discussion
Well put Breezie. I also wish I had gotten my pouch sooner too but can't focus on would of should have either. Someone on this board had to do exactly what you described because their pouch did not work. He accepted it and moved on. This troll must enjoy being miserable. I wonder what his home life is like? Does he have any family or friends or has his poor attitude chased them away too? On one of my posts to Dog Day, I even stated that when I had Kidney Cancer, when I had to go for... [ more ]
They're not "trolls" because they're between a rock and hard place. All the alternatives are way too freak for me and others. I'm just praying for the possibility of a Colon transplant, while I grin and bear it with my pouch [ more ]
They're not "trolls" because they're between a rock and hard place. All the alternatives are way too freak for me and others. I'm just praying for the possibility of a Colon transplant, while I grin and bear it with my pouch [ more ]
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J-Pouch ForumsGeneral Discussion
I'm through the first two surgeries of the three step process myself. My 3rd step is scheduled for October. I can confirm what others have said here about living with UC being just awful. I can also confirm that it will get better. I feel loads better just being 2 steps into the process, and I say that even though the 2nd step has been a bit of bear...it seems anything is better than living with UC. However the great news is that the vast majority of people do very well with their pouches... [ more ]
Njwhaley, it's a pleasure to meet you & your husband. The nerves are entirely understandable; it's major surgery that does have it's risks; as you've found from reading the posts in here. But don't let them deter you. Instead, let them inform you and arm you with questions to ask the surgeon and the confidence to ask them. As for me, my UC story is sadly similar to your husband's and others posted here; diagnosed a year out of college; fought it for 4 years with Prednisone (all that was... [ more ]
njwahley, Your husband's story is similar to mine. I went through all this many years ago. I had UC for 7 years from 1986 - 1993 and the flare ups increased each year. Any stress to my life would cause me great havoc on my body. Without fail, a few weeks before Christmas would cause major flare ups. I know all about those drugs and I hated Prednisone. I too got acne all over my back, head and face from it. I kept putting off the surgery myself due to my own fears. It got to a point where it... [ more ]
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J-Pouch ForumsGeneral Discussion
I was thinking that too Jennifer. The Mayo Clinic in Rochester, MN is awesome too and they work as a team very well. I had an incisional hernia that was causing mechanical partial obstructions. MY C/R surgeon did the hernia repair surgery and he ended up opening my entire incision, again, as apposed to the one inch scar I was expecting. He didn't realize until he got in there is was so big. I think you are right about getting in to CC. I am partial as I love the Mayo Clinic. It is also just... [ more ]
uh, dumb question here, wouldn't fixing the hernia maybe solve your staining problem?? [ more ]
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J-Pouch ForumsK-Pouch Korner
J-Pouch ForumsGeneral Discussion
350 for about $5.95 at Sam's Club (generic). I used to spend $60-80/month (I take 8 a day) and now I spend less than a dime a day!!! [ more ]
400 caplets from Costco - $7.59 (just under 2 cents per tablet). These are small caplets. The name brand imodium pills are huge. I can swallow 8 of the small loperimide without water. I have to do 1 at a time with the name brand if I'm taking them without fluids. kathy [ more ]
Even though its an over the counter med, you can get your doc to write a prescription and get it filled st the pharmacy. By far that was the most cost effective way for me, cheaper than anything i found mail order or costco and sams. [ more ]
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J-Pouch ForumsGeneral Discussion
I had zero wait because they made my pouch and hooked me up on the same day. No problems. [ more ]
3 months and 2 weeks. (can you tell I was counting the days?! ) It would have been sooner but I had a complication after step 1 that set me back a bit. [ more ]
I only waited 8 weeks exactly. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Hi Armywife, So so excited for you ! I cried the first time that I saw my wee boy on ultrasound and heard his heartbeat! Now I am 21 weeks I can feel him kick (although with my unbelievable noisy and busy gut - its sometimes hard to tell the difference. Each of the ultrasound techs comment on how loud my gut is - poor wee baby!) I am so pleased you have a good regime approved - I was so relieved when I got on top of my drugs and things were planned out! Enjoy - and I hope that you are... [ more ]
Clicky-I am about 9wks along right now over the past few weeks, I've been able to talk with a few mfm doctors who have all expressed to me that the current feeling on flagyl even in the 1st trimester has changed a bit. They basically told me not to worry and to continue to rotate flagyl and clindamycin because flairing would pose a greater risk than the theoretical risks of using flagyl. I am so so so relieved! Aaaand thrilled that we got pregnant "on our own"! Now I'm just ready to hear... [ more ]
Hooray! Congratulations! I had to hold out on the Flagyl until about 12.5 weeks of pregnancy, then I was on 250 mg 1-2-3x a day off and on for the second and third trimesters. My baby girl is already 4 and healthy and wonderful. My doctors preferred Flagyl to Cipro, which also worked for me at times. I never took any of the others you mentioned. God is able! blessings, Laura [ more ]
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J-Pouch ForumsHelp! Need advice now!
I think you are having cuffitis (UC) as the frequency returned and you are taking mesaamine suppositories. I think you have UC in your rectum. They removed my colon and left 2 cm of my rectum attached to my rectal cuff. They stapled my j-pouch to that 2cm. That we bit of rectum has the mucosa that has the ability to have UC and you have an entire rectum of it. I know how waking up all the time is and how it affects your rest. Some people have suggested that instead of eating dinner earlier... [ more ]
Ingrid-Marie, What condition did you have that your doctors decided to perform an ileorectal anastomosis? Is the inflammation totally under control when you use the mesalamine suppositories? I would ask your doctor about dicyclomine; it helps to control the spasms. Also, you might ask for diphenoxylate-atropine (brand name Lomotil), which I believe is much more effective at slowing down the gut than loperamide. Your doctor will have to get it on license though, as it is not readily available... [ more ]
of course, we have different systems, but two things that worked for me and my jpouch: 1. chia seeds to concentrate my bathroom trips during the night and day. chia also worked to cut down irritation and itchiness, at least for me! 2. using lomotil up to 8 pills a day. good luck. you might also want to keep a food diary. perhaps you can see a pattern (for example, coffee makes you get up three times, green tea makes you average just once). i hate keeping a diary myself, since it is... [ more ]
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J-Pouch ForumsGeneral Discussion
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 ]
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 ]
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 ]
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J-Pouch ForumsGeneral Discussion
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 ]
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 ]
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 ]
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J-Pouch ForumsGeneral Discussion
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 ]
People with colons get fissures commonly - it is an 'outside' event and will not cause any pouch problem. [ more ]
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 ]
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J-Pouch ForumsGeneral Discussion
Thanks all. This is good information to have in my back pocket - literally. Steve [ more ]
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 ]
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 ]
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J-Pouch ForumsGeneral Discussion
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 ]
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 ]
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 ]
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J-Pouch ForumsGeneral Discussion
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 ]
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 ]
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 ]
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J-Pouch ForumsPouchitis
Every single antibiotic I take is maintainance therapy since in my case I have chronic pouchitis kept in check in a "simmering" state by taking antibiotics. [ more ]
I don't know if it's used more often for maintenance therapy per se, but there is certainly literature out there saying that Xifaxan may be an effective maintenance therapy treatment. In my case, Xifaxan wasn't effective when I had active pouchitis. I had to take another antibiotic to get it under control; however, once that was achieved, I went on Xifaxan as maintenance therapy and did very well on it. [ more ]
Is Xifaxin used more for maintenance therapy? [ more ]
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J-Pouch ForumsGeneral Discussion
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 ]
Did you have food sensitivities prior to your surgery? What are your current problems with food? Do you have chronic pouchitis? Sue [ more ]
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J-Pouch ForumsGeneral Discussion
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 ]
Flagyl does slow things down a lot. be sure to drink water. [ more ]
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 ]
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J-Pouch ForumsGeneral Discussion
Try drinking more water or some grape juice. [ more ]
A Granny Smith apple--- skin and all--- works for me. Much of this is individual trial and error. Best wishes. [ more ]
thanks for the suggestions/ideas! i'll try and report back! prunes for a j-pouch....whodda thunk it! [ more ]
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J-Pouch ForumsK-Pouch Korner
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Eric - I decided to try the Gerber Washable NUK Nursing Pads & was surprised at how well they worked. I used a new one each day & used a folded up piece of toilet paper inside of them, which I changed about every hour. A tight pair of undies held them in place pretty good. I washed them using a cold water wash soap specifically for delicates & they came out very clean. Would definitely be a good replacement for the regular stoma covers if one was low on supplies or wanted to save... [ more ]
Eric, A stoma is supposed to have mucous, just like your mouth is supposed to have saliva, it is what preserves the tissues from drying out, cracking and bleeding...not having any mucous is a bad thing (think dry-mouth)...having just enough to keep your stoma moist at all times or a bit more is good....too much or not enough is less good but not a sign of something being wrong...it is exactly the same as your mouth..you put certain foods or spices into it and you get more mucous (spicy,... [ more ]
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J-Pouch ForumsGeneral Discussion
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 ]
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 ]
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 ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Thank you jan. [ more ]
Yes, they should. But to be sure, the basic liver screens are AST and ALT. Jan [ more ]
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 ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsGeneral Discussion
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 ]
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 ]
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 ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsGeneral Discussion
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 ]
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 ]
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 ]
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J-Pouch ForumsGeneral Discussion
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 ]
If you're not taking it already, you could try immodium. Supposedly one of its affects is improving fluid uptake. [ more ]
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 ]
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J-Pouch ForumsGeneral Discussion
Another question: He plans to do the injections under sedation. Is this typical? Thanks. [ more ]
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 ]
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 ]
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J-Pouch ForumsGeneral Discussion
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 ]
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 ]
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J-Pouch ForumsGeneral Discussion
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 ]
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 ]
Marianne, How did you make out? Well I hope. what infusion did you get? [ more ]
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J-Pouch ForumsGeneral Discussion
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 ]
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 ]
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 ]
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J-Pouch ForumsGeneral Discussion
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 ]
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 ]
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 ]
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J-Pouch ForumsK-Pouch Korner
I'm blushing guys! Thanks for the vote of confidence though...always happy to be of help...by the way, Eric, which hospital do you work at again? I may need a mini favour for a very sick kid. Sharon [ more ]
Sharon is amazing, isn't she? (cute too!), yes, Dr Cohen was able to use most of my old j pouch to form the K pouch, save a lot of time he said. I'm so glad I did it, no more butt burn (in my case, it was more like butt in fire!)!!! It's definitely worth it! Cheers! Eric [ more ]
Thanks, Sharon, it makes sense. I also admire your compassion and the personal knowledge you give to so many people on this site. It could be so lonely for so many if the support was not available as it is on this site. I remember when i first got my j-pouch in 1995. The CCFA had a back page with codes where you could write to people. The letters would go to CCFA headquarters and then they were forwarded to the person you addressed it to. It took weeks for you to be connected to a buddy but... [ more ]
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J-Pouch ForumsGeneral Discussion
its the "Ass man", lol.. Seinfeld reference. [ more ]
Good luck with the scope, let us know how it goes and post the pics if you want. [ more ]
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 ]
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J-Pouch ForumsGeneral Discussion
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 ]
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J-Pouch ForumsGeneral Discussion
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 ]
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 ]
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 ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
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 ]
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 ]
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 ]
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J-Pouch ForumsWomen's Health & Pregnancy
Not the same situation but last December I needed to have a complete hysterectomy and my gyn. surgeon really wanted to do it laprascopically. My colorectal surgeon said it wouldn't work because I had alot of adhesions. Still the gyn surgeon was determined. Up to the minute they put me under I repeatedly told the surgeon I would not be in the least bit disappointed if he had to open me up. Well, he had to for the reasons mentioned above and he did so along the same scar as the original... [ more ]
My doctor talked to the chief of surgery about me and was telling him about my total collectomy and wanting to take my tubes out and he said that we shouldn't do it laprascopically because they would have to go in around the small bowels and since that is all I have and have been doing well they don't want to mess with that. So I don't think that we are going to do anything and try without blocking anything and do IVF. I can see either side on making my decision but I don't want to be cut... [ more ]
MsSterl-I'm actually getting the Essure placed tomorrow morning... YIKES!! for 95% of people it takes 3 months before you can have IVF. YOu need to wait for enough scar tissue to form to block off the tubes. They verify that you are ready for IVF via an HSG test. If after 3 months, some dye still leaks though, you need to wait another 3 months. My specialist said he has done about 30 essure placements for hydrosapalinx and all of them except for 1 person were good to go after 3 months, and... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Yeah, not like the "good ole days" when you were kept in bed, immobile, for weeks. Jan [ more ]
Thanks Jan. Great advice. [ more ]
Well, yeah, scarring may prove to be problematic since that part of the spine is right behind your pouch. Would it be possible for your spine surgeon to confer with your pouch surgeon prior to surgery, so that he is 100% up to speed about your inner anatomy and any pitfalls that may present? I understand the reluctance for a posterior approach, as there is greater risk to the spinal cord that way. I am not sure where you get the idea that you will be bedridden for a week or two. My... [ more ]
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Join Us!
Founder, Creative Director & Web Master
William J. Johnson
bjohnson@j-pouch.org
Bill Johnson founded the J-Pouch Group in 1997.
After a life long battle with Ulcerative colitis, Bill finally had his colon removed and was given an ostomy in 1993. A failed attempt for a j-pouch and then many surgeries to get back his health gave Bill the motivation to create a web site dedicated to giving support to patients who have had or are considering j-pouch surgery.
Forum moderator and advisor
Jan Dollar R.N.
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