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J-Pouch ForumsGeneral Discussion
Heartburn
A akteacher
akteacher Thanks for responding vanessavy! I am going to try some of this. The heartburn I get is more in the center of my chest - sometimes I think I must be having a heart attack, it's so bad! I will have to try some of your suggestions.....anything to get rid of it!! [ more ]
vanessavy For me Nexium was the best. I take sublingual prescription previcid now and it got my gastritis and esophogitis under control. Ask your GI about those 2. Otherwise I don't know for foods. Anything without acid of course helps. Once i got it only meds helped. I had a wicked bad case the other day, not sure why. Maybe coffee to soon to going to the gym. Bread made it worse I noticed and plain water didn't do much as well. It sucks to have. I have a hiatus hernia due to it. Maybe some warm... [ more ]
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J-Pouch ForumsPouchitis
Flagyl and drinking
D DZAtl
CTBarrister When I was bombed at the Montreal Jazz Festival here is exactly what I mixed with flagyl drinking from about 2-5 p.m., with 500 mg flagyl dosages taken at 9 a.m. and 9 p.m. the same day: 1 Mango Sunrise (rum, mango liquer, mango juice and other ingredients I forgot; advertised by the bartender as "sweet and girlie", but tasted strong and not so sweet to me) 3 Bellinis (sweet "girlie" type drink with rum, chambord, peach schnapps, sparkling white wine mixed with ice and cream; delicious!) 2... [ more ]
vanessavy I drink on it with no issue. I got smashed in NYC a few times. I had no side effects. I also can't puke anymore since food goes through me so fast but I never had the urge either while on it. [ more ]
Spooky Flagyl is actually similar to the medication Antabuse, prescribed to help alcoholics stop drinking - hence some of the unpleasant side effects. Some people, however, can and do drink while on flagyl. I supposed you could try spacing out your dosages, much like you have to do while having dairy with cipro (usually a 4-6 hour window), but since you have already experienced the unpleasant side effects, you have a pretty good idea how it will affect you in the future as well. My understanding is... [ more ]
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J-Pouch ForumsGeneral Discussion
Recovery time & Why?
M mom2panda
gleam I had my colon and rectum removed March 5th. I too thought I would be out 2-3 weeks. LOL. I don't think I was off the Oxycodone for six weeks. I had an abscess that had to be drained. That was the worst pain next to an exposed tooth root. I still haven't returned to work. That's six months! I am just now getting strong enough to brave the hot summer temps. Dehydration is no joke. My body was acclimated to very little water due to my job. I had a leak that finally healed on its own. Take down... [ more ]
Onwisconsin I didn't work at all after the temporary ostomy was put in: I had way too many problems with breaking seals and skin breakdown. I took about a month off after my takedown was performed. For me getting over the pain was a matter of a just two weeks. Getting to the point where you feel comfortable may be the 3-4 months he was talking about. I'm one month and a week out and I'm not comfortable yet, but I cannot afford to continue to not work. I'm back at work, honestly I would like more time,... [ more ]
mom2panda Thanks everyone. I'll just see how it goes. It's encouraging that many of you had a decent recovery. [ more ]
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J-Pouch ForumsGeneral Discussion
when did you start to love your jpouch?
fqfq
JJA Day 1!!! I distinctly remember the first time driving after I got it, I had an "urge" to go and instead of hurriedly looking for a gas station or fast food place, I just "held it". I was in heaven!!! I laughed out loud when I realized I'd been sick so long, I'd forgotten what "holding it" even felt like! [ more ]
new2thisstuff FQ- I think my biggest improvements from month three to five were less burning, more control, less anxiety and I think about the pouch less because my scarring is improving more and more with time internally and externally so I don't feel the scars as much or notice them as much which makes me think about things less . I am starting to like this surgery more and more as time goes but it's an adjustment that takes getting used to. Just remind yourself of the positives as much as possible. No... [ more ]
fq thanks! i'm looking forward to the day that I forget I even have a pouch! at 3 months out, I think about it a LOT....BUT I am seeing small improvements here and there. both mental and physical. being able to "hold it" a bit longer, for example. i hope it gets better and better still! [ more ]
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J-Pouch ForumsGeneral Discussion
conservative vs. aggressive Doctor styles
fqfq
Onwisconsin Subzeromambo- just curious, what kind of drugs were your doctors not willing to put you on and why did you agree to a surgery before you felt all options had been tried, or had something drastic happened? I went on every drug possible, Asacol, Prednisone, another I cannot think of, and the big ones Remicaid, and Humera, each one progressively failed to produce results after an initial period of them working. My colon still had to go. So there's no guarantee that would have made a difference. [ more ]
Former Member I agree-the best doctors are conservative or aggressive depending on the situation. But if you doubt your doctor's advice, the best thing is to get a second opinion to see what another doctor would advise on the same situation. [ more ]
Subzeromambo My gi was conservative. That is why I lost my colon. He would not give me the aggressive drugs I needed for a severe flare. My previous doctor was aggressive which scared me but I bet she would have given me the transplant rejection drugs I needed to save my colon. I think the best doctors are both conservative and aggressive depending on the situation. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Constant Nausea
S Solomin
liz11 Are you also under the care of a gastrentonologist doc. I found that a good gi doc was more helpful in my diagnosis and treatment of a problematic pouch than a not so great surgeon. Also i learned that many of the tests such as the ones you listed were useless if they werent done or read by someone who was very experienced with jpouches. [ more ]
Solomin Well, I have had so many tests that I refuse to have more or be tested for the same thing again: endoscopy rectal exam Pouch examination barium enema (pouch defacography) upper GI Ultrasound X-Ray MRI CT Scan blood tests galore All test negative in terms of ulcers, pouchitis,gallstones,kidney stones, and inflamation. They way I feel at times, it is like I have a partial obstruction. If this is the case, the backup is probably what is causing the nausea. So far, I have never vomitted from... [ more ]
CTBarrister Did you communicate to all 5 surgeons the constant nausea symptomology? Because I sort of have the same question as liz11 as to whether this nausea is necessarily due to a pouch structural issue. I have had 2 J Pouch revisions which corrected a mechanical issue with my pouch when it was not emptying correctly. Prior to these surgeries I NEVER had any nausea. My concern is that the nausea could be due to something else and is mistakenly being blamed on what you think is a mechanical issue... [ more ]
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J-Pouch ForumsPouchitis
Insurance co. will no longer cover Xifaxan
FM Former Member
Former Member Hi all. Just wanted to provide an update on my Xifaxan issue. After 3 appeals (2 letters from my doctor and a conference call involving my doctor, a Cigna review team and myself) my prescription was approved for one year. I had heard that the third time is often the charm in these reviews, and luckily that turned out to be the case. Start to finish the whole ordeal lasted about 6 or 7 stressful weeks. But I guess all's well that ends well. My doctor prescribed Pentasa for me during my... [ more ]
samantha1803 clz81- Um that's $42 a pill!! Not that you couldn't do the math. I would still try the drug company and see how much they ask about ability to pay. In my case I don't remember them asking. I would also try a personal appeal to them. It doesn't hurt to try. Tell them your life depends on it. These are tough times. They are obviously ripping people off. Maybe they will give it to you if you promise not to call 60 Minutes and tell them about it. [ more ]
John95 Drew, Samantha offers good advice. Give the manufacturer of Xifaxan a call; I believe it is Salix Pharmaceuticals, but you can double check by looking at your prescription bottle. I believe they have a patient assistance program that can help people who cannot afford medication when their insurance doesn't cover it. I think you have to have less than $50,000 in assets to qualify. It's certainly worth investigating if the drug has given you so much benefit. [ more ]
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J-Pouch ForumsPouchitis
please help: back and forth from watery to constipation with pouchitis??
nikikinikiki
Patrick S ❤️
nikiki Hi AP and Rocket, Thanks to both of you for your input, and for the reminder be cautious. I do consider that what works for someone else may or may not work for me, and the need to be careful when adding something new. I so appreciate everyone sharing. It has been a great benefit to me to read everyones ideas and experience, and to read that other people are familiar with so many of the things that I've gone through for so long but had no one else to compare notes with...and are so willing... [ more ]
AP Rocket is right. What works is so individual to each person. I just wanted to offer what worked best for me because I found it through this site. I just kept trying the different things that people recommended until I found what works best for me. And that thing is definitely fiber and fluids. The constipation is the thing that was a red flag and made me respond. I figured out that not going was most likely causing the pouchitis for me and that this type of fiber keeps me going. My doctor... [ more ]
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J-Pouch ForumsGeneral Discussion
Chronic Cramping
O Onwisconsin
Onwisconsin well, thank you for the great suggestions. I know I probably didnt give enough info. I finally realized my cramping co-incided with taking Imodium. I may try Imodium multi purpose with silmethicone for gas. It was a painful few days and I should have realized sooner what was causing it. But I wasn't sure because I also introduced a few new foods in that time. Has anyone also had problems with Imodium like that? Have any that had problems with gas used multi purpose and found it worked... [ more ]
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J-Pouch ForumsMen's Health
RASH UNDER WHERE STOMA WAS AFTER J-POUCH
FM Former Member
CTBarrister A dermatologist can scrape the affected area, put the skin samples under a microscope and know in 30 seconds not only whether it is a persistent yeast infection, but the type of fungus as well. I would request that this be done so that the diagnosis can be confirmed. Until that happens apply an antifungal powder to the affected area. Zeabsorb AF is a good one. [ more ]
Former Member He gave me 2 tablets of Diflucan and then when it was still there, he gave me a topical ointment Nystatin. It has been sine 7/1/2012 and it has still not cleared up. My surgeon left the state and now his office is sending me to a dermatologist. What a hassel! [ more ]
CTBarrister What medication did he put you on and when? Was it an antifungal cream or a pill? If a pill it can take up to two weeks to clear up. I had to take several megadoses once a week for two weeks and I saw improvement in a week and it was mostly gone in 2 weeks. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Failed IVF #1
MsSterlMsSterl
commandz I am going through with PGD right now so I don't give my child FAP. I will tell you it's not cheap but I don't want to have that chance of passing it on and with doing PGD they can test for downs and other chromosone problems before they implant which is nice bc that is something I'm concerned about with my age. I'm sorry to hear that it didn't take. We will be doing the IVF in 2 months and I hope it takes...I don't know if we could afford going through another one since insurance won't pay... [ more ]
JillM Happy to help when I can...this process is hard enough. Good for you for having a plan. Make sure that you look at success rates by age group. A clinic with great results for 30-35 might not have good luck with over 40. Also be sure to check not only pregnancy rates but live birth rates. Also, did you use progesterone? It has shown to help with implantation and early pregnancy. I did suppositories but some of my friends did progesterone in oil which is an IM shot. Clinics have different... [ more ]
MsSterl JillM, thank u so much for your thoughts! U really dont know how much they mean to me right now. I dont really have anyone else that understands that I can talk to so you are very much appreciated! I am not going to give up, I know 42 is getting old but I certainly feel 32 instead, lol After my husband and I doing a lot of research last night and today I think we are close to a new plan. First it doesnt look like we may have picked the right doctor. I know it was dumb on my part but since he... [ more ]
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J-Pouch ForumsPouchitis
Strange Side Effects?
pouchmonkeypouchmonkey
cassiecass Afternoon speak with your md on this .Retesting of the TSH should be done at least 6 weeks after the change in dosage is done.It takes this long just for the anterior lobe of the pituarty to get the signal on dose change.You should also discuss when you should retest do to weight gain or weight loss. Medication can interfer with the thyroid hormone. Cassiecass There are other hormone levels which may need to be tested. [ more ]
Spooky Very occasionally I will get pronounced PMS where I get the symptoms you describe (swollen, tender, bloated, and hugely increased appetite). So it could be a bad case of normal PMS hormones. But, I am wondering if the antibiotics have maybe interfered with your absorption of the synthyroid. Antibiotics can interfere with the effectiveness of other medications, so perhaps you should speak to your doctor about the timing of dosages to ensure that you are getting the benefit of everything you... [ more ]
pouchmonkey Never say never to bizarre side effects from anything, because I have certainly had them, but I have been on thyroid replacement for 13 yrs & this just started about 2 weeks ago...strange, like going through puberty even, & if it were a possibility, I would be taking pregnancy tests, because the change has been so drastic. But, I know there is no chance of pregnancy, so I'm just seeing if anyone else has had anything like this happen?!?! [ more ]
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J-Pouch ForumsGeneral Discussion
J-pouch Diet
F Fazz
suebear I eat everything; whole grains, popcorn, nuts, seeds, fresh fruits and vegetables, etc. You can eat anything. If you are trying a new food, eat a small amount and see how it affects you. One of the biggest misconceptions about this surgery is that you have to live on a limited diet. Not true. Sue [ more ]
Onwisconsin My doctor told me to go for whole grain things. Whole grain bread, whole grain pasta, he told me to make it a center of my diet and attempt to get 20 to 25 grams of fiber a day to bulk up the stool. [ more ]
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J-Pouch ForumsGeneral Discussion
Lots of Complications.......But Still A Success?
fqfq
Epic Scotsman 1. 2 step surgery. December 2011 & March 2012. 2. I had an abscess in my pelvic floor that resulted in a 9x9 cm fluid mass that had to be drained and stuck me back in the hospital for about 5 days (and the drain had to stay in for about 2 weeks). 3. No. 4. I really felt successful after I was able to go back to my karate class and grapple for 2 hours (on the ground, no holds barred). Mostly I started feeling like a success story after I started feeling like my old self again, after 5... [ more ]
JenniferG 1. When was your surgery and how many steps?6/11 step 1, 9/11 steps 2 & 3 together. 2. What were your complications? My wounds (one laproscopic and one regular incision) opened wide up and I had to pack them with gauze for 2 months. Blood from cuffitis - just a little every now and then. Now it seems I may have a incisional hernia near my stoma site (seeing a surgeon on Thursday) 3. Are you still dealing with any of them? occasional bleeding and hernia 4. When could you say with... [ more ]
mgmt10 1. Two steps laparoscopically: 1st step 6/25/10. 2nd step 10/8/10. 2. Complications: abscess/infection after step one. Had to have a trans gluteal drain in for 6 weeks. After takedown, reoccurring anal stricture. Needed 6 quick in office dilations. I don't really consider the stricture a complication though. 3. Not currently dealing with any j pouch issues. It's all good. 4. I considered my surgery a success from day 1. I felt instantly better after my rotten colon was removed. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
J Pouch Itching
FM Former Member
court14047 That same thing happened to me shortly after the take down... your doctor can prescribe you a suppository (not sure what the actual medication is called) that will help with this or I found that diaper creme works really well to help with this. Congrats on the little one! [ more ]
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J-Pouch ForumsGeneral Discussion
sugar or after eating make you sick to your stomach
C commandz
JenniferG Most sick: certain fried foods (must be the grease because some I can eat just fine and others make me feel icky) Second: too much sugar Thrid: raw veggies I still eat the stuff but It doesn't always treat me kindly. [ more ]
commandz I am a little bit over a year post takedown. Maybe because it's because I eat too fast. Just feel blah. [ more ]
fq how far out are you from your takedown? I noticed improvement in month #3 (I am in month #3). In the first couple months, I felt like there was a baby kicking inside my pouch whenever I ate!! Baby kangaroo! i got on antibiotics and felt better, so maybe there is some bacteria imbalance? i also felt sick when i had lots of gas and gas pains. maybe try some beano or try walking around more and drinking more water after your meal? Or smaller meals throughout the day, and chewing well/eating... [ more ]
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J-Pouch ForumsK-Pouch Korner
Kpouch-ileostomy-kpouch again?
FM Former Member
John A I echo what Sharon has to say. I too have been through an end ileostomy, conversion to a kp, multiple revisions and multiple valve re-dos (lost count..), plus many adhesional lyses and a few surgical hernia repairs. The good and the bad, but Sharon said it well, keep your eye on the prize, have a great surgeon and go for it. I would never consider going back... john [ more ]
Jasmine 2 You have enough small intestine to make 2 kock pouches. Maybe you need a different surgeon or maybe the technique is better than it was the last time you had it done. Just make sure you are talking to a surgeon well versed in the Kock Pouch and go from there. [ more ]
Former Member Thank you Vanessa for your response. I know I have a lot of intestines left so I'm not too worried about short bowel syndrome. More afraid of the unknown than anything else. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Is it chrons pouchitis or bacteria overgrowth
GT Good to be healthy
Solomin One of the better antacids is pantaloc. I am not certain if one can determine with absolute certain crohns versus ulcerative colitis. As for bacteria overgrowth, I have taken cipro and Flagyl at the same time. In my case, I do not tolerate cipro well either, and can no longer take it. It is also possible that diet is causing your symptoms. Have you tried avoid carbohydrates and sugary products? What about avoiding gluten? Bread is a killer for me. gives lots of gas. Good luck! Cheers, Solomin [ more ]
Good to be healthy Thanks so much for all of your replies. They have taken biopsies of the stomach and pouch but i have not heard if they seen evidence of chrons in those biopsies. I am going to see my family doctor and see if he knows whats in the reports and if he can send me to another specialist quickly. They only scoped my stomach and not the whole upper GI to my knowledge. I have taken zantac, tums and acid reducers for the stomach pain with some success. Sometimes the pain goes away after a burp. Also... [ more ]
fq that seems strange. I would go to another doctor. He should be able to try other antibiotics first. sometimes you need a few courses to nip it in the bud (assuming it's not chronic). other antibiotics should be tried before biologics. i don't know why he is so quick to assume crohn's. i would ask another doctor. [ more ]
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J-Pouch ForumsGeneral Discussion
The Internet vs. The Doctor
fqfq
skn69 Fq, My surgeons have always listened to what I have to say, what I believe may or may not be right for me and alternative treatments that I may have heard of here or on other boards or from more savy members...They are always willing to at least consider new information and have even done certain procedures on me that we have elaborated together...I often tell them what is being said or done on the board and works or doesn't...I am fortunate that I have doctors who medical skills depass... [ more ]
fq thanks everyone for the great advice! i truly appreciate it, and will think about this next time i go on a google frenzy for each and every health problem! I wish I could marry a doctor so I can pick his brain all day hmm...second thought, that union might not last! [ more ]
JenniferG Well, you have to filter the bad from the good but the information I've gotten online has been far better than what my doc gives me. [ more ]
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J-Pouch ForumsHelp! Need advice now!
burning pain
K kk
jeane Mine is in both arms 24/7 and legs often ache also. Feels as though I am being poisoned many days to be honest and contributes to constant fatigue and exhaustion (plus lack of sleep). Has to be inflammation in other parts of my body since getting jpouch and from the pouchitis doctor claims. [ more ]
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J-Pouch ForumsGeneral Discussion
pros and cons of anti depressants and which ones
G Guest
Spooky chasingtime, you sound like you have a ton on your plate. I also had emergency surgery, and I went through a rough period afterwards; I know it can be hard to adjust to the changes in your life, especially when those changes happen so suddenly and are so widespread. Have you considered therapy? A counselor or psychologist who has experience dealing with chronic illness might be of great benefit to you. A therapist can teach strategies to help you cope with the changes in your life and move... [ more ]
Guest thank you. im not a patient man and i do not like meds. i agree they cant be prescribed on here i was just looking for experiences. i have been very active from early on. we came to florida to try and live with my colitis in a milder climate but ended up with emergency removal of colon so we are mostly alone here. my folks are here to help us cope but we are moving home after takedown and the stress and anxiety of getting home is killing me. we have over 100 friends and family waiting for us... [ more ]
Guest thank you. im not a patient man and i do not like meds. i agree they cant be prescribed on here i was just looking for experiences. i have been very active from early on. we came to florida to try and live with my colitis in a milder climate but ended up with emergency removal of colon so we are mostly alone here. my folks are here to help us cope but we are moving home after takedown and the stress and anxiety of getting home is killing me. we have over 100 friends and family waiting for us... [ more ]
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J-Pouch ForumsGeneral Discussion
Anyone have trouble adjusting to probiotics?
H Hope 777
TE Marie I think the pamphlet with VSL#3DS says to do 3-4 hours between it an antibiotics. I don't know for sure but that's what I've been doing and I have "brain fog" moments. [ more ]
TinCan notsotough - I am also taking cipro for pouchitis but was adivsed to take the vsl3 simultaneously. Two or three hours after taking the cipro I have been draining a packet of vsl#3ds. By the way, I noticed in your signature that you have joint problems. Are they related to your pouchitis? I ask this because I apparently have developed a case of pouchitis arthritis - effecting primarily my knees. [ more ]
notsotough I am just finishing a course of cipro for pouchitis and then will try VSL3 as advised by my gastro consultaant. Willing to try to see if will stop pouchitis returning. Will let you know. [ more ]
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J-Pouch ForumsGeneral Discussion
Doctors that have JPouches?
Mhg26Mhg26
Mhg26 I can't imagine what his parents or girlfriend must have felt afterwards. But sad as it is - it is life. Just reminds us how fragile and unfair life really can be. Hfc- that's absolutely great to hear that you manage to still work as a cardiologist after dealing with UC and now with a JPouch. Also incredible that you can run so many miles so often! Must be in amazing shape. Also I like your attitude towards the good days and bad days- I can relate to that but I hope that others without a... [ more ]
Mhg26 Wow thank you all for your responses and for so much positive support! I love this forum, and I feel like each of us on here has a special connection to everyone else. Dog day- yes I agree- we all usually have to watch what we eat and make sure our muscles down below are strong and flexible. Killcolitis- that is truly a depressing anecdote [ more ]
cassiecass GOOD MORNING Follow your dream .Never let a health issue stop you.Last week I was scoped for the first time since my take down.I meet a young gentlemen who is a Doctor of Anesthesia who has a pouch also.He also has been thur alot with it.We talked and talked about foods which effect us.We now are internet buddies .He practicing and living his dream as an MD Go for it... He told me he was not guided either properly and did he own research to get to the level of health he is in. FOLLOW YOUR... [ more ]
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J-Pouch ForumsHelp! Need advice now!
6 Days take down help please
A Angeltears
Angeltears Thanks guys yes I dont eat junk or sugar as hubby us diabetic, normally fruit veg and high fiber diet,but not over doing the fiber right now only been out of hospital 3 days so not going to push my luck. I feel your pain Blake the spams are shocking I'm so glad I found this site I knew nothing about how the j pouch would react my surgeon was not very helpful in that area of information Will start exercising in the next few days my incision is still quite sore so dont want to pull on the... [ more ]
dtmack No problem at all. Glad to hear you are doing better. Just watch food, drink lots of water or gatoraid, and walk. Exercise is really good for the gas as well. Best to you Derek [ more ]
Blake D. I'm 2 weeks past takedown. My biggest issue is the spasms and gas. They absolutely suck, but they have gone down quite a bit for me so I think I'm progressing. The next issue is sleep. Its hard to get. I sleep for about 2 hours at most. Third issue is butt burn. Calmoseptine is great. I think I would've scratched my ******* off by now if I didn't have that stuff. We have to stay positive and assume things will get better. I wish I could say I only go 5 times a day. I'm probably in the 9 to... [ more ]
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J-Pouch ForumsHelp! Need advice now!
emergency surgery....big decision
FM Former Member
JillM I choose an ileostomy at age 30 so I could start living my life again. That was 11 years ago and I have never regretted the choice. Two babies (now 6 1/2 and 4) later I can say that I love my ileo and the freedom it gives me - no pain, no drugs, no more surgeries, no diets. Only you will know when you are done trying to make the pouch work for you. For me it is when I felt I was living around the pouch. Please feel free to contact me if you have questions about living with a perm ileo. [ more ]
TE Marie I hope your birthday is tomorrow and you get pain relief right now. How far away would someone have to drive to get the belladonna opium suppositories? I think some people on here take it orally. Is that available until the suppositories come in. Things will get better. [ more ]
Former Member so I found out it's not a stricture...doctor Shen thinks it's dyschezia...basically a mechanical issue where the rectum muscle is constricting at the same time as the j-pouch. I was prescribed belladonna-opium suppositories to stop the spasms but no one has them in stock!!! and there is a back order so no one can order them either In the meantime I'm home bound and stuck on tpn until I can eat like a normal person. Going back to Cleveland for a manometry and defecography on my birthday :P [ more ]
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J-Pouch ForumsGeneral Discussion
belladonna-opium suppositories
FM Former Member
TE Marie They only find new drugs to treat us with when it happens accidentally, like remacaide et all. The companies that do make some of the meds we get really stick it to us too. My canassa suppositories cost over $18 each! That's after the insurance adjustment! No one wants to invest in making generic ones as the market is too small. Dirty Rotten Scummy Scoundrels! [ more ]
Former Member Im having the same problem! I called Cleveland and even they can only send me 48/60 of them because they're on back order!! it's ridiculous. I've been told there's a shortage of basically all drugs right now due to companies losing money on them. I hate big business. I'd almost prefer to just get surgery again and fix the problem for good. [ more ]
liz11 pm the other liz. Lizz is her screen name. She takes these, also prescribed by Dr. Shen. [ more ]
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J-Pouch ForumsHelp! Need advice now!
GI Hemorrhage - Need Help
K kereen
kereen For meds I take 10mg prednisone daily, plaquenil, topamax, tramadol, hormones for ovarian failure due to lupus. I take fioriset or hydrocodone if the migraines are terrible. [ more ]
kereen Thanks Jan, I had a scan for a Meckel's diverticulum years ago due to these hemorrhages. It was negative. Apparently my small bowel had a lot of scarring, the GI felt it was from my bowel resection surgery. Is there another way to get a Crohn's diagnosis other than seeing in that 100 cm of small bowel? My old GI felt I did have Crohn's, the new guy is not so sure. I'm overwhelmed and just tired of this. I have been diagnosed with Lupus as well. I have a lot of joint pain (especially back)... [ more ]
Jan Dollar No, not sounding normal at all. Even with the hemorrhaging, you should still be able to eat once the bleeding has stopped. Of course, anxiety can play big in these things, so don't underestimate it. I would think the vascular malformation and/or ulcer would be the most likely culprit, but since they were not able to visualize the source due to not being able to see the entire small bowel, it is sort of up in the air. I imagine they have been entertaining a Crohn's diagnosis, but no hard... [ more ]
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J-Pouch ForumsGeneral Discussion
Dilation question
M MarkGregory
notsotough When I had a stricture recently the surgeon said he could not get a finger tip through the opening- casued pain. At dilatation under GA I recall the surgeon saying that he dilated to 2.4cm ( diameter) with a Hegars dialtor.like mgmt10 it felt so much better immediately after the procedure. [ more ]
mgmt10 I have no idea specifically how small the opening is when it needs to be dilated. I had to have 6 dilations done over the course of a year. It finally is staying open now. All I know is every time it was done it was instant relief and I noticed a difference right away. [ more ]
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J-Pouch ForumsHelp! Need advice now!
intestinal blockage in 85 year old mother in Walnut Creek, CA
S scallop
Jan Dollar Hope your mom is doing OK and it was not something serious. At 85, any number of things can be going haywire. Fortunately, intestinal obstruction is pretty common and most any reputable hospital is equipped to deal with it. Since she does not have a j-pouch, that is not so much of a concern. Jan [ more ]
Connie According to US News & World Reports, at #30 for gastroenterology nationally, John Muir actually outranks UCSF. I know it is a high-end facility. Here are the US News & World Report pages for both: http://health.usnews.com/best-...dical-center-6930043 http://health.usnews.com/best-...dical-center-6933853 [ more ]
BarbieG Get her walking if u can. Try giving her prune juice or orange juice. Does she drink enough water throughout the day? Masaging helps too. I have been in the hospital with many blockages only to have them move after waiting in ER for hours. If it is serious, make sure u have the most experienced doctor in the area. Good luck. [ more ]
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J-Pouch ForumsGeneral Discussion
Back to work
V vstRN
CeeeeCeeee Your situation is challenging, even without the added pressure of having a new J-pouch. Sometimes just being prepared as best you can will lessen anxiety regarding this issue and will likely lead to fewer occasions when you will need to use the bathroom. By being prepared I suggest wearing adult diapers and making arrangements with a teacher next door to cover your class if you should have to "leave" for a few minutes. Best wishes! [ more ]
CTBarrister In my early days after takedown antispasmodics like bentyl, levsin, lomotil and donnatal, taken 45 minutes before meals, were lifesavers. My surgeon told me I had a "spasmodic pouch." This calmed down within a year or so after takedown. The downside is that these anti-spasmodic drugs, while slowing things down and calming down the excess motility, also made me feel a bit loopy. I only take one at bedtime now. [ more ]
Onwisconsin I would also be really appreciative of comments on this. I go back to work this week and I'm just one month post surgery and still going almost every hour past noon until I fall asleep. I eat plenty of fiber and have a system away from the house to prevent soreness, but I really need to be able to take less trips while at work, especially as a substitute teacher. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Any Aussies out there who need K pouch surgery?
skn69skn69
Adroen I'll bounce it too. I highly doubt it will make a difference though. Thanks for your support and help though Sharon. What an awesome country I get to call home.... Ad [ more ]
skn69 I am bouncing this up to the top again hoping that someone will reply....if you are from Austrailia and have a failed j pouch, cannot have a j pouch, an ileo that makes you miserable (not all do, some of us are very happy with their ileos and do not want to change) or any other situation where you are interested in a K pouch or have one that needs work then please PM me or post something. Sharon [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
BLOCKAGE!
B beckysmom
beckysmom Sorry Paulette, She is better from the blockage thank you. Hope to never return again. Thanks for asking. [ more ]
TE Marie Is she feeling better yet? Your post was over a week ago and I sure hope she didn't have to be hospitalized. [ more ]
beckysmom Thank you Lou. She doesn't take anything to slow her down, she is too afraid of slowing things down since she has had so many blockages last year when she had the stricture. Thanks for the information! take care. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Former stoma site hurts
S Subzeromambo
Subzeromambo Good advice! I did a massage but it was really the heating pad that worked wonders. I increased my distance only .5 miles today but I can really feel it. I am sooooo out of shape. The half marathon is the CCFA Team Challenge in Las Vegas Dec. 2. Tomorrow is strength and cross training, followed by a lovely day of rest. [ more ]
BarbieG Good for you! Walking is the best! It sound like u might have adhesions. Can't see them on X-rays, but they can pull like rubber bands. Only way to get rid of them is thru surgery. Then of course you end up with more. Try massaging the area and a heating pad. Give yourself a rest every other day to heal. Good luck! When & where is the marathon? [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Life after takedown (1.5 weeks post)
U 1970UC
1970UC that sounds great srf! glad to hear you're doing well. i hope you continue to do well and look forward to reading your updates as we both progress through the adaptation process. peace, mark [ more ]
Srf1 Hi Mark, I'm doing really well so far. They sent me home from the hospital last Friday and I'm averaging 8-9 BM's a day right now with most of them in the early evening. The pain is pretty much under control and I've been up and out of the house early the past few days taking some long walks on the beach. I've had a few minor episodes of butt burn but nothing terrible. I've been real cautious so far on eating trying to get a good handle on what works and what dosen't. Glad to hear you're... [ more ]
1970UC hey srf1...howare you doing? you had your takedown last week, right? peace, mark [ more ]
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J-Pouch ForumsGeneral Discussion
Working on ships - A bowel obstruction question.
MJ Manuel J.
nikiki Manuel, I had bowel obstructions about every 4-6 weeks for a year. They all resolved on their own with a liquid diet, stretching, hot baths, etc. Know the symptoms of a bowel obstruction well. Unfortunately, the final one I had landed me in the ER, but the emergency team could't find the obstruction on the imaging so they waited to perform surgery. When my body went into shock after 17 or so hours they decided to take me into surgery. 90% of the small bowel died because the blood supply had... [ more ]
Former Member I have had 4 bowel obstrurction since my takedown surgery on 7 May 2010. I had surgery with two of them but I had plenty of time to get to a hosptial. I know on a ship you will be hours away but don't let this hold you back. I hope you stay with what you want to do good luck. [ more ]
Manuel J. Thanks alot guys, that's good to hear. No, i never had a blockage or obstruction. (and btw, the "doctor" on the ship might be me, since on freight vessels there are often only like 10 people and a second or first officer usually takes the role of "medical guy".) [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Hair loss
Uc-DanielleUc-Danielle
Uc-Danielle I would rather not cut my hair. I have been trying to grow it back out for awhile now. I was blessed with thick hair so, so far it's ok. But I'm really worried about it and I know that makes it worse. I was losing my hair before the take down so I'm really hoping it's not what you said. That really scares me. My hair has been the one thing that I love on my body. I have my follow up in clev in October and hopefully they can give me answers. It just scares the crap out of me. [ more ]
Manuel J. Not to scare you, but if it falls off in spots it might be alopecia, which i got after takedown. An autoimmune skin disease. I'm completely bald now, sucks, but what to do? [ more ]
BarbieG I know how u feel. I lost quite a bit of hair since my last 3 surgeries over 2 years ago. It takes time to grow back. Try not to get stressed out over it. Stress also causes hair loss, but the anestethesia is the worst culprit. Eat gelatin for your hair & nails. Use a wide tooth comb too. Cut it short & it will look thicker. At least you r in good company! [ more ]
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J-Pouch ForumsGeneral Discussion
Encouragement for new J Pouchers
C chrfor
chrfor It does get better and better as time goes on. Hang in there hon! [ more ]
Angeltears So happy I found this site I'm 5 days post op from illeostomy take down ,I had a my rectum removed and a j pouch made 3 months ago due to having stage T2 bowel cancer at 35 I just got out of hospital today and bowels have only just started to work it scary when you dont know whats happening is normal and this site has been so amazing in the short time I have started reading thank you for sharing your journeys to help people like me [ more ]
mgmt10 Roberta, Glad to hear you are turning the corner finally! [ more ]
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J-Pouch ForumsHelp! Need advice now!
5 days after takedown - 10 hours with no movement
FM Former Member
BarbieG Try cutting up food very tiny & chewing well. U don't want to get blocked. Eat chicken salad wraps, omletes, yogurt, oatmeal, potato soup, baked potatoes, pasta salad, burgers, but no fries! Greasy & sugary foods r bad. Low residue or low fiber for the first few months. I actually craved vinegar after surgery. Ate romaine lettuce chopped up tiny w dressing. Also had it on pasta. I think it has healing properties. [ more ]
beucfree I ate chicken and some potatoes among few other things that are low in fiber for first few weeks. And protein shakes. I haven’t tried vegetable yet. In my view, it’s too early for vegetables. [ more ]
Former Member Thanks for the advice beucfree and clz81. I did call the surgeon's office and spoke with his nurse today. She thinks maybe I am eating too many bowel slowing foods, plus with the combination of percocet which also slows things down, that could be why I'm not going much. But I'm not sure what to eat really...because the surgeon had said to avoid high fiber foods at first. I guess I will chill on the cheese, potatoes, rice, etc. What did everybody else eat the first few weeks after takedown? [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
2 week post op take down
Uc-DanielleUc-Danielle
Uc-Danielle Yes I went to class not even a week out. And I ran out of Pain meds and it was a pain in my butt literally to get more they thought I was just laying at home and I wasnt. I get questioned bc I'm young about my pain and it sucks. Like now I can't sleep the butt burn is killing me and idk what to do. I just want to cry [ more ]
Onwisconsin To chasingtime. My Doctor is Dr. Harms of the University of Wisconsin Hospital. I only say that because I know he's not some random doctor and has done several hundred of the surgeries, it is his primary surgery he performs and people come from around the country to have him perform the surgeries. All of their pamphlets and printed handouts I've received from them as well as talking directly to Dr. Harms has told me to once food is passing through to start slowly increasing the fiber in the... [ more ]
Guest im confused about the high fiber from your doc. whats his theory and is it working good? all ive read says no whole grain... [ more ]
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J-Pouch ForumsGeneral Discussion
seems like most meds have bleeding risks.
G Guest
TE Marie I'm on bupropion and citalopram and they don't make me bleed. I'm on the pill form. Don't get anything time released or coated as they need to dissolve before hitting your pouch. I always eat before taking them, even if it is just a few crackers, plus drink a glass of water as well. It probably is situational depression. There is noting wrong with trying antidepressants for a while. It doesn't mean you have to take them forever. You might want to consider seeing a therapist too. I agree with... [ more ]
Guest AGREEEEEEEEEEEEEEEEEEEE!!! so what does someone do to boost mood naturally then? im tired of this feeling of dread. it came out of nowhere. ive been on the chopping block at least 5 times before. why now? [ more ]
Guest AGREEEEEEEEEEEEEEEEEEEE!!! so what does someone do to boost mood naturally then? im tired of this feeling of dread. it came out of nowhere. ive been on the chopping block at least 5 times before. why now? [ more ]
See all 10 replies...
J-Pouch ForumsHelp! Need advice now!
Pain feels like broken glass around pouch
S Subzeromambo
Subzeromambo I confess that I hate GIs. I was left sitting in my toxins for 16 hours after my colon perforated by three different GIs. Each one told me I was "over sensitive to pain," I was experiencing "normal morphology," and that I would be "going home in a few hours." A nurse went behind their backs to call a surgeon. In one hour I lost enough bloody liquids to fill two wine bottles. She saved my life. I know that I will have to see a gi soon but I really dread it to the point of screaming... [ more ]
vanessavy My pain is a mystery to everyone and they do think I am nuts. I just had another CT scan and 2nd pouch scope and both were fine , just have fluid build up in my pelvic area. IT is horrible pain. I went on vacation and didn't have it, came back home and it is back. I also have an allergy I developed here so wondering if it is all related in some weird way. find a new GI [ more ]
Spooky Pain feeling like broken glass is generally suggestive of a fissure(s)--though your issue seems to be in the pouch rather than during elimination. In that case, definitely contact your surgeon. That pain level is not within normal limits and should be checked out. It could be pouchitis so that is also something to rule out. [ more ]
See all 6 replies...
J-Pouch ForumsK-Pouch Korner
Stoma/intestine swelling?
EricEric
Jasmine 2 When you have your catheter left in...be careful. I wouldn't go bike riding or anything stenuous, you are trying to rest the area. You don't want to irritate or do any damage in the valve or pouch. [ more ]
Jasmine 2 Eric, I use a strip of guaze and wrap it around my hips and tape it in about 3 areas on my hips to keep it level with the stoma. Then I tie the guaze to the catheter, I bend the catheter so the end is held in place by the gauze...in a U shape. I use a golf tee or dowel to block the end of the catheter so it doesn't leak, and can be removed to empty my pouch. I have no trouble keeping the catheter in this way. Your valve being closed tight and harder to get the catheter in later in the day,... [ more ]
vanessavy Welcome to my daily hell as I call it. Your story is me every time I intubate. Tight stoma, my valve is on an angle. To keep the tube in it is simple. You have to form a loop like a ribbon, think cancer ribbon, the loop goes under the tube and then the ends go over and secure to the skin that prevents it being forced out. then secure another piece of tape over it. [ more ]
See all 4 replies...

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Bill Johnson founded the J-Pouch Group in 1997.

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

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