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J-Pouch ForumsGeneral Discussion
Local surgeon vs Cleveland Clinic
J Jfill21
Rach123 Thanks for both responses. Unfortunately my insurance covers only nyc. Both doctors I mentioned above though are from Cleveland clinic. They moved to nyc. Someone on another site mentioned she had a direct attachment to rectum done by Dr. Hull and it went well. [ more ]
Jfill21 My CC consultation next month is confirmed with Dr. Tracy Hull. Anyone a patient or been a patient of hers? She's been a staff colorectal surgeon there since 1993 and is current section chief of IBD within the department. [ more ]
CTB23 ❤️
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J-Pouch ForumsGeneral Discussion
Questran - Cholestyramine Use -Success
CL Capt. Larry
rlblife Starting Questran today- hoping it helps with chronic pouchistis. what should I be "ready" for in terms of side effects other than the heartburn? Do you take it with meals? THANKS [ more ]
AnnieK Questran was RX'd for me a few months ago. At first it seemed kinda great but it gives me such awful heartburn that lasts for hours despite crunching some Tums and Tagamet Anyone else have this? The most relief from the intractable diarrhea that I seem to have to accept for life comes from Bentyl. It's an anti-spasmodic that I take 30 minutes before meals and at bedtime. [ more ]
Subzeromambo works great for me too! [ more ]
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J-Pouch ForumsGeneral Discussion
My doctor says my iron count isn't important because I'm not anemic
FM Former Member
Former Member I wonder since I drink a good amount of orange juice if I really need to take supplements of Vitamin C? [ more ]
Scott F The purpose of the Vitamin C is to improve the absorption of the iron in the combined supplement. I wouldn't suggest megadoses, but a bit would do you no harm. Or you can skip it and likely be just fine. [ more ]
Former Member I never heard of Vitron C but I do drink my share of orange juice and have used vitamin c supplements. My doctor did ease me down on iron supplements since too much can lead to cancer. I try to drink protein drinks now. I don't know if it's any good for me but I really like the taste of Bolthouse Vanilla Protein Plus. I think it has too much sugar but otherwise it's great http://www.fooducate.com/app#!...DF-A102-FEFD45A4D471 [ more ]
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J-Pouch ForumsGeneral Discussion
You guys, I just feel rotten.
KarenchaseKarenchase
Karenchase Thanks for your response, Scott. Yes, I've tried a variety of homemade oral rehydration solutions, involving assorted juices, coconut water, salt and honey. They definitely work better than plain water. I'm wary of commercial brands like Pedialyte because they are so full of chemicals and sugar substitutes, which are bad for everyone's guts. My thyroid is under constant observation. During the period of my illness and my 3-step surgery my levels were tested quarterly, and adjusted almost as... [ more ]
Scott F You might do better with a real oral rehydration solution than plain water, given that the water alone isn't working. And if your thyroid is off then nothing will feel right. I think you need your thyroid levels checked, probably more than once as the synthroid is tinkered with. It's nearly impossible to get synthroid dosing right without labs and a systematic approach. Good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
Camping?
temotytemoty
suebear This is why I had jpouch surgery, so I could camp and backpack with no worries! I have enjoyed many trips since my surgery a few years back, the only thing I do differently when i backpack is I take lomotil to slow down my frequency. Other than that, I eat whatever is put in front of me and take a lot of vitalyte for hydration. Sue [ more ]
Annikki I try to camp where there is out house....have done a lot of camping successfully. Camp diet tends to lend itself to less PM. [ more ]
CTB23 No camping for me. I did my fair share in the military. I will go on hikes and take Immodium to help. [ more ]
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J-Pouch ForumsGeneral Discussion
Sinus infection
A Aimc
Aimc Hi Spooky, I tried the Flonase along with a nasal wash. It didnt work for me, though my husband swears by it. Trying a perscription nasal spray starting today. Cant believe Ive had this for about two months now. Gees. [ more ]
Spooky I had a pretty nasty sinus infection in the fall that just wouldn't let up. I was also trying to avoid antibiotics. Finally went to the doctor and I was prescribed Flonase (sterioid nasal spray) and with that and using saline washes daily (Hydrasense), the infection cleared up and I was able to avoid antibiotics. There are in fact several new studies published that suggest that antibiotics aren't always necessary for sinus infections and that 60-70% of adults recovery with or without... [ more ]
Pouchomarx S.Boularrdi. Antibiotics don't kill the yeast. A new report just came out saying that studies have shown that probiotics really won't protect you from cdiff. But I will keep doing them when on antibiotics [ more ]
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J-Pouch ForumsGeneral Discussion
Symptoms
ConnlaBOIConnlaBOI
EricaLeeJpoucher I got my surgeries done because of having fap which caused hundreds of polyps to grow on my colon. So I had to get the surgeries because otherwise I would've gotten colon cancer. Before the surgeries I wasn't as tired as I as I am now. I don't sleep good because I often wake up to go to the bathroom a lot. I usually can get a little sleep but today I got hardly any sleep. Hopefully it won't be like this forever. You might not have that problem though. [ more ]
Pouchomarx I guess it depends. I am on my second jpouch and I still get times of fatigue and joint pain. I think its all part of the auto immunity in us. [ more ]
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J-Pouch ForumsGeneral Discussion
Options after a failed pouch?
JillyJilly
Tinat Hi Jan, I wish I would have searched this before, because I've recently had loop Ileostomy surgery (Sep 2016) to allow the pouch to heal, after chronic pouchitis for 3 years and it's been 8 months now and it hasn't really been healing as much as expected. My doctor hasn't prescribed any medications, except an enema that he's working on, but I'm wondering if I tried taking cipro which was my go to in the past, that would help heal things? Would you know of any other options to help heal the... [ more ]
Lynne2 Jilly, I am so sorry to hear about that you are going through. What a nightmare. You will be in extraordinary hands when you go to UCSF and I hope you leave there with a clearer idea of what your next steps will be. While there is no perfect scenario, your quality of life can and will improve. Please keep us updated on your progress. We are rooting for you! [ more ]
Mental Kase Jilly, Never Humira or Imuran. Have you been on Prednisone? I hear you. In another I post I wished a respite for you, a break from the late night laundry and washcloths. I sincerely hope your Doctor brings forth a few big guns to shut this nonsense down for a bit. Let us know the plan as it evolves. Demand relief, get relief! If the incontinence is also accompanied by run away inflammation, pouchitis, local inflammation etc... -could she call in a script and get you started on a Prednisone... [ more ]
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J-Pouch ForumsGeneral Discussion
Bottom half of J pouch is badly inflamed
MadMaxMadMax
TE Marie Hopefully the prednisone works! [ more ]
MadMax So my specialist says we will systematically try all the drugs I was originally on after I was first diagnosed with UC. He also touched on the possibility that I could have been wrongly diagnosed with UC instead of Crohns. [ more ]
MadMax Thanks for the replies. My specialist has put me on 40mg Prednisone. See if that helps. I have around 1 cm cuff left behind. But it is literally the bottom 50% of the pouch which is terribly inflamed and bloody. Horrendous. I have been on the steroids for a week and it seems to have made the bleeding worse, or more frequent thus far. Hopefully will improve. [ more ]
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J-Pouch ForumsGeneral Discussion
My first day home and travel
A APHEI890
Winterberry Hello, Aphe1890. Congratulations on takedown and only needing one night in hospital! I used to have accidents during sleep, but it got better after two months or so, and it was not every night, only when I slept deeply or had a big dinner. By my second month or so, no more accidents. Always slept on a baby mattress pad or several white towels (easy to bleach). I suppose for hotel rooms you could pack small, disposable mattress liners like the liners hospitals use. Any drugstore will have... [ more ]
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J-Pouch ForumsGeneral Discussion
Taking Amoxicillin - Probiotic to restore good bacteria?
aka KNKLHEADaka KNKLHEAD
Scott F I take 250 mg of Flagyl and 500 mg of Cipro, both at bedtime. I tried the Metamucil capsules but found they didn't mix sufficiently with everything else. I now use a 50/50 mixture of Metamucil and Konsyl powders, since I find full-strength Metamucil too sweet and too full of calories. I use the directed amount of water and it works just fine - I really disagree with the "use less water" approach. My only dietary restriction is moderation of high-residue foods. I have a small salad instead of... [ more ]
helene i have same problem copra 1000 doesn't work any more i have to combine flagel also . A doctor recommend try flagel rectally hate being on drugs but i really don't have a choice.I really don't think diet helps , i saw dr Bo Shen, he believes in only in protein, very hard for me . [ more ]
TheresaInTexas Scott - Thank you so much for all of this information! I DO have more questions. 1 - What are your mg dosages for the Cipro and Flagyl? 2 - What form is your psyllium fiber in? Is it Metamucil? Have you tried various brands of the psyllium fiber and found one better than another? (this a multi-question question..) 3 - Do you restrict your diet in any way? I have trouble with raw veggies, too much sugar (natural inflammatory, of course) and I avoid whole kernel corn completely. EXCEPT, I HAVE... [ more ]
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J-Pouch ForumsGeneral Discussion
Humira and Side Effects
13 Years & Counting13 Years & Counting
AllyKat For about a week after I get migraine, sinus and ear issues as well as dizzyness. It's a love hate relationship. i had severe bone pain till I was pre treated with solumedrol. I too go to NYC Cornell GI doctor said I'm allergic, great....but im out of options and it's working great. Then I'm fine till the next infusion. In fact 2 weeks after the last I was on a cruise. Go on Facebook to the Entyvio Warriors group Most people don't have any side effects. I'm sure you will do great! [ more ]
13 Years & Counting What do you mean by "sick" after the infusion AllyKat? That was not mentioned at all when I spoke with the doctor. Meantime, my insurance denied Entivyo so it needs to be appealed. In a holding pattern for now. [ more ]
AllyKat I'm on Entyvio I had similar issues with Remicade Good luck, I get sick for 5 days after the infusion and then I'm fine, in fact my pouch has never been better. [ more ]
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J-Pouch ForumsGeneral Discussion
Hot Chilies Cool Down Gut Inflammation in Mice
D d_bergman
EricaLeeJpoucher I didn't know that spicy food could do that and I love spicy foods!! I get butt burn often but it doesn't bother me, so I will keep eating spicy food. I've always ate spicy foods though, so I'm used to eating spicy foods. [ more ]
skn69 It has been well known and documented in Middle Eastern and North African countries that they have a lower incidence of certain intestinal problems thanks to their intensive use of hot peppers and spicy foods (they may have other problems linked to the same foods but I do not know which)...the capsaicin apparently fights infections in the intestinal tract and reduces inflammation. On the other hand, they seem to suffer from an inordinate amount of burning hemorrhoids...what goes in, must... [ more ]
temoty thanks [ more ]
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J-Pouch ForumsGeneral Discussion
J-pouch question
BenBBenB
EricaLeeJpoucher It definitely is better to have the surgeries if your healthy. I say this because before both surgeries I definitely wasn't healthy. I once almost passed out at my surgeon's office, luckily my mom and the nurse was there. I also haven't had much of an appetite in a while but that was a side effect of metformin. Plus I was prediabetic at the time and I had IBS so couldn't keep any food in me. I also ended up with gastroparesis which means I had to change what I eat and drink. I used to throw... [ more ]
Pilot Debby I think how you recover really depends on your health at the time of your surgeries. My colon perforated and I had been sick in the hospital for weeks so I was already very weak. It was very tough for me after the first surgery and they did not even give me a 50/50 chance of surviving the original surgery. My doctor years later told me it was so nice to see me doing so well that when he sent me home he did not think I would make it, I could not even barely walk around the house. Now here I... [ more ]
Former Member With my Stoma, yeah fizzy drinks frothed up and filled my bag quite quickly. I don't drink alcohol, so if on a night out, I tend to drink pints of Coke, yeah pints and before the J pouch; due to the fizzy drinks I'd have to change the bag twice over a 2 hour period or maybe I'll have to leave early, depending on venue, cleanliness of toilets or whether a McDonalds was close by and open. Other than contents of bag being of a pure liquid Coca-Cola type consistency and ballooning and an... [ more ]
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J-Pouch ForumsGeneral Discussion
Stomach noise
M Mad
Pilot Debby First of all you should try to eliminate foods that create a lot of gas like soda, onions, cauliflower, broccoli, beer. That helps some because it will not be as gassy. I also use simethcone which you can take after you eat that helps some to reduce the gas. Make sure you are eliminating your pouch more frequently because for me generally it does not make a lot of noise if I have emptied it. But as soon as you start to eat it will probably start up. If my stool is a little loose and I am... [ more ]
temoty i am having tons of gas noise and bloating in my stomach right now. [ more ]
CTB23 I usually just say it's my new system working and laugh it off. At this point, I don't worry much about being embarrassed. [ more ]
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J-Pouch ForumsGeneral Discussion
Sinusitis and Antibiotics
SpookySpooky
Cocomama I have to respond to your sinus question. I too have serious sinus issues. I have had two sinus surgeries and still suffered terribly. (j-poucher since 2009)I have been to an allergist, Ear Nose and Throat Specialist, Immunologist, etc. I have had steroids, antibiotics, over the counter meds and used a nebulizer. I replaced my carpet with hardwood floors and bought a new mattress and an air purifier. I have no pets. I drink lots and lots of water. Still no relief from crushing headaches and... [ more ]
Mad My doctor put me on IVIG. It's a pain but I have not had sinusitis since I started. It is a once amonth imnfusion of antibodies. [ more ]
Spooky I seem to be doing well with just Flonase. Today is the first day in several weeks that I haven't had rivers of ectoplasm. LOL I'm still a bit congested and tired, but I think I've turned a corner. Happy to have potentially dodged the antibiotics. [ more ]
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J-Pouch ForumsGeneral Discussion
Intestinal perforation
M Mad
jeane Wow. How incredibly strange. So glad you are doing good. Best of luck w recovery. [ more ]
Mad Doctor said it is unlikely to recur. I showed no symptoms. [ more ]
jeane Good luck Mad. i am very sorry to hear you had to go through this. Were you havng Crohn's symptoms before the perforation and on any meds? If not, how will you be aware if an issue like this could be brewing in the future. I admit this is pretty scary. [ more ]
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J-Pouch ForumsGeneral Discussion
Vegetables?
V *Valerie*Ann*
Scott F The intestine gets kinked when it twist or pulls around an area attached by an adhesion to the abdominal wall or another section of intestine. I suggest barrier cream *after* every BM, so there's no irritation from any seepage. [ more ]
tinyink Interesting! How does, or why does the intestine get kinked? Or, as you mentioned, does that really only happen with a narrow area? I'm going to meet with a dietician. I realize everyone is different and it's a lot of logic and trail and error, but I figured it won't hurt. absolutely! I actually use an ointment before the BM (I prefer A+D prevent) as a barrier, hypoallergenic wipes and hygienic cleansing lotion , a bidet and then after always apply Caldesene (corn starch powder with zinc... [ more ]
Scott F The blockages aren't really caused by particular food, unless you have a chronically narrowed area that tends to get backed up. Commonly the intestine gets kinked and then perfectly ordinary food becomes a problem, and folks think the food did it. Are you using a barrier cream after every BM? Most butt burn is preventable. [ more ]
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J-Pouch ForumsGeneral Discussion
Revenge of the gallbladder...
skn69skn69
skn69 I never thought of that Scott...Will ask my radiologist if he can do an ultrasound... S [ more ]
Scott F Have you been checked for remaining gall stones in the common bile duct? An ultrasound exam would show them. The likelihood of this depends on what your surgeon did, exactly. Another possibility is adhesions, which I'm guessing you'd choose to live with. I hope this disappears mysteriously! [ more ]
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J-Pouch ForumsGeneral Discussion
Update
O Onwisconsin
Bobish Actually I believe loperomide is used by drug addicts trying to shake the opiate habit. I think it helps control the addiction cravings without getting them smashed. Although I also believe some use loperomide as a base to create opiate drugs that do cross the blood brain barrier. On its own is considered safe... Venturing Off topic I know..... Just saying lol [ more ]
Jan Dollar I think there is some confusion here. Imodium (loperamide) is an opiate receptor agonist, working at the mu-opioid receptors in the gut only. It does not have analgesic or central nervous system activity, because it does not cross the blood brain barrier. Early animal studies showed some mild withdrawal symptoms after long term use, and that is why it was a controlled substance at first. It has long since been declassified, and is not addictive in humans. Abuse has only been reported with... [ more ]
Pouchomarx Immodium is an opiate? never heard that.... I know that lomotil is considered an opiate. [ more ]
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J-Pouch ForumsGeneral Discussion
why not Entocort for pouchitis, with cdiff history ?
PouchomarxPouchomarx
Jan Dollar Not exactly. While it is generally considered topical, with long term use there can be enough systemic absorption to become an issue. It is inaccurate to say it only is absorbed in the intestine. What is accurate is that it is poorly absorbed. Biologics are considered a safer long term option than any steroid. Jan [ more ]
Pouchomarx Shen had me on Entocort for 2 years with my first pouch when I was dealing with a sinus. he stated it was safe to use long term and I had no side effects. It is a steroid that only releases in the intestine, it is not systematic. [ more ]
Maxx My doc prescribed me Entocort to treat Pouchitis because I cannot tolerate Flagyl and Cipro doesn't seem to help. I'm holding back on Entocort because it's just another form of steroid that I wanted to stay away from. I am currently taking Xifaxan but have prescription ready for Entocort as a last resort. [ more ]
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J-Pouch ForumsGeneral Discussion
Two Lumps In My Perianal Area
CTBarristerCTBarrister
LORI726 Yay! Awesome new!! [ more ]
CTBarrister I finally had the MRI on my pelvis at Yale on May 3, 2017. It was negative for an anal fistula or abcess. So it turns out that these two lumps are just benign skin tags which are not bothering me, even though I can feel them. I think it's weird that I just noticed them appear out of nowhere. The GI doc said they could be related to the skin being irritated in the anal area, which makes sense as I only noticed them after the 2 week episode of nocturnal fecal incontinence in February. [ more ]
CTBarrister Patrizia, My GI Doctor did not mention diet at all. He thinks the treatment regimen needed to be fine tuned. We both suspect that I am lagging with the 8 week infusion schedule so my Remicade schedule was increased from every 8 weeks to every 6 weeks and he also rotated me onto old friend Xifaxin and wrote the scrip for IBS/diarrhea so that insurance company will authorize. Anyway this all seems to be a byproduct of IBD and I just have to deal with it going forward. I should stress that I... [ more ]
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J-Pouch ForumsGeneral Discussion
Charcoal uses
N Nork
skn69 My dad used to burn toast black (on purpose) and give it to me to deal with diarrhea and gastro and it worked...The same idea as giving charcoal tablets. It does work...it also helps to remove liver toxicity...and lower gas. Sharon [ more ]
Nork OK thank you for your reply. [ more ]
Former Member I understand how you feel Nick. I hate living with a pouch just as much if not more as you do. Long ago I tried charcoal too and noticed no real difference after using it. I've had my miserable pouch for 29 years and have come to the conclusion there's no beating the laws of physics. Not much I can do besides watch what I eat or preferably eat less. [ more ]
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J-Pouch ForumsGeneral Discussion
Pouchitis Advice and Chicagoland Specialists
LionsPrideLionsPride
AllyKat This last round of pouchitis really did me in I could not eat terrible pain and so sick I lost so much weight that my surgeon gave me a temp ostomy to let things rest and to decide from there But I never got better because I got what is known as diversion colitis that is when the pouch lays empty it sometimes developes colitis or diversion pouchitis in this case I had 2 infusions and was connected right before my third I went into remission immediately the fatty acid suppositories did little... [ more ]
J.T. ALLYKAT - I noticed in your list of procedures/medications that you had a diverted ileostomy in July 2015 and had "diverted pouchitis". What is that? Also, did the fatty acid suppositories do anything? Where did you get the suppositories? Did a custom pharmacy make them? And finally, you started the Entyvio while diverted? Can you tell me more about that? Did the pouch clear up while diverted? Sounds like you remain in remission after the take-down? Thanks, Joe [ more ]
AllyKat I've been on Entyvio for a year and a half. I'm doing really well on it. Good luck. I'm not part of any study, my GI thinks out of the box. [ more ]
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J-Pouch ForumsGeneral Discussion
Reaching Peak Pouch Performance - & Introduction
Yacht RockYacht Rock
temoty ❤️
lclassen For me, I mix the VSL#3 DS packet with the Metamucil, add a little ice, water and Orange Juice as my morning cocktail. I drink this on my way to work, and then eat breakfast at work. This combination of OJ with water and supplements is the only way I've been able to handle the supplements. The water helps to thin out the supplements (so they don't get too thick while I'm drinking), and the ice helps keep it cold on the drive. And the OJ just masks the taste of the other two [ more ]
AllyKat As a long time blockage suffer I would not advise using fiber. You need to drink and keep things loose and moving thru your system. I'm assuming your getting blockages due to adhesions. Have you spoken with a surgeon about removal? Is that why you mention having issues with diet? As for depression, an anti depressant and exercise. But you mention joint pain, fatigue, leakage, butt burn, sleep, pouchitis. Clear the pouchitis and that will take care of the rest. What are the Drs giving you for... [ more ]
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J-Pouch ForumsGeneral Discussion
probiotics
L LindaC
Bobish FAO boys mom, Appreciate this is from the symprove website, but the research is apparently independent from UCL London. http://www.symprove.com/biosci...ence/ucl-study?hcp=1 Its a starting point for you at least... hth [ more ]
Winterberry Hi, Boy's Mom. The liquid probiotic that I've been recommending and drinking is called "BIO K" not the other brand named bio kult. I've never heard of bio kult, but I think they are two different products. I've attached the link to the BIO K website so you can read on it. If your son is lactose intolerant as I am, BIO K makes a special flavour that is rice based, not milk based, so customers with lactose intolerance can drink it without problems. There is even a children's version. It taste... [ more ]
Aimc You can purchase both vsl and symprove on amazon. [ more ]
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J-Pouch ForumsGeneral Discussion
Support group for j poucher in Maine
MG Maine Girl
temoty HI, I live in Boston and I'm seriously thinking of moving near to the Kennebunk area or even southern Maine. I've love to chat with you about what Doctors you see up there and if they're good? Thanks, Tyler [ more ]
Winterberry You're welcome! One other thought for anyone searching for support groups: Most major cities have a Crohns and Colitis Support group. Contact the one nearest you and ask if they have heard of j pouch groups. If you decide you can start your own group, meet at local library, etc., be careful initially sharing personal / health information with strangers. [ more ]
Maine Girl You are so right! Ha! Thank you so much for all the advice and inspiring words!. You should be a life coach! [ more ]
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J-Pouch ForumsGeneral Discussion
Vitamin D Deficiciency; something you should know.
RJGRJG
AllyKat They no longer recommend a level of 50-70 talk to your Drs about this. I'm under the care of my GI and functional med Dr and my bloods are checked every 6 months. 2 years ago they lowered my dose to bring my levels down [ more ]
Linguist ❤️
Linguist I have always been Vitamin D deficient unless I take supplements. The last time I got checked for Vitamin D, 25 hydroxy d3 was March 16th, 2017. The result was 21 ng/ml. The normal range the lab says is 20 - 70. I remember times I was way below 20 ng/ml. I discusses this with my new GI, but he didn't seem to care about it, although he is a renowned GI specialist here with a published scientific paper on the relationship between Vit D and IBD. Instead of getting daily Vit D supplements, I... [ more ]
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J-Pouch ForumsGeneral Discussion
can same MRI scan look at pouch and lower back issues?
PouchomarxPouchomarx
Pouchomarx So could I take my pelvic MRI to a back doctor to look for any back issues that may be going on from September? Cuz they were just looking for anything going on with the pouch like leaks or fistulas and such. Why do you think Dr Shen wants me to get another MRI if that one was clear and my symptoms haven't changed or gotten worse. ? [ more ]
skn69 I had an MRI for my back and they found something else behind the pouch...it works both ways...it sees what is there...up to the tech to read it all...and tell you what is going on. Sharon [ more ]
Brewbirds Yes a pelvic MRI covers it all. Just share your concerns and the testing will be done in one MRI. [ more ]
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J-Pouch ForumsGeneral Discussion
Pain from long car rides and walking-advice needed
M MCH
Scott F It would help clarify things if you can further describe the pain. Is it relieved or changed by a bathroom trip? Does it move, or occur in a specific spot? Does it come and go, or is it constant? Under what circumstances does it go away or improve? Does it start during the car ride, or during the walk? Does it happen every time? [ more ]
Winterberry Pillow across your abdominal area, also try sitting on a semi firm cushion when you are in the car. [ more ]
13 Years & Counting I haven't experienced this, but is the seat belt cutting into your abdomen? If you're not the driver, maybe place a pillow over your abdomen when in the car. Perhaps bumpy rides are worse? I would try to take note of how/when this happens, driver vs passenger and talk with your doctor. Pain of any type is awful! [ more ]
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J-Pouch ForumsGeneral Discussion
To opt for surgery? How does it impact your life afterwards?
LaurbbyxoLaurbbyxo
Yacht Rock My story was very near yours, minus the humira. The GI doc's only have drugs in their toolbox. And they'll keep using a combination of those tools to achieve some manner of results. Yet someday, the side effect from those drugs could do their own damage (think arthritis). Surgeons have another tool that the GI doc's don't really mention all that often....and it can improve your quality of life. Imagine your life w/o the cost of the drugs, keeping track of insurance claims, eating mostly what... [ more ]
13 Years & Counting Hi!! I had my pouch surgery in 1999 when I was 35 and drugs like Humira, Entyvio, etc. were not available. I had no issues to speak of until a few years ago & they've continued on and off. I will say my doctors (I have 2, one in my home state of NJ & one in NYC) both said that if drugs like these were readily available in '99 then there's a good chance I may have been able to avoid surgery. That being said, I was/am happy I had the J-Pouch surgery when I did. However, I also think... [ more ]
lablover My husband was sicker with the meds he was on, plus a year on steroids. He never was in remission. He made the tough decision to get the j-pouch and hasn't looked back (23 years!). That enabled us to have our son (who is 20). He is healthier and does not regret his decision. [ more ]
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J-Pouch ForumsGeneral Discussion
Takedown 9 days ago
AimeeAnneAimeeAnne
Yacht Rock The final stretch! It may take some time....but there will come a day when you'll even be surprised with how well the body ends up adapting. Best! [ more ]
AimeeAnne Yeah, it doesn't seem like anything much so I wasn't too worried but want to make sure being that I'm about three hours from my doctor. Thank you for the response and well wishes, I am thrilled to be in the final recovery stage! [ more ]
aka KNKLHEAD I think it takes a while to heal and you should be good. Congrats and best wishes! [ more ]
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J-Pouch ForumsGeneral Discussion
Sleep Deprived
G GraceB
CTB23 Being away in vacation and sleeping through the night. No doggies to deal with. [ more ]
GraceB Update I had to go back on ativan I know it is addictive but I was getting to stressed out. Sleeping better I guess it also helps with my anxiety. Thanks for every ones help. [ more ]
Nice Nurse I never "sleep through the night". I wake some nights every two hours and some 3-4. I am able to get right back to sleep though. If you are talking about Ativan, it is for anxiety and yes, can help you sleep but it is addictive which is why you are having problems being off it. A better option is lomotil. It helps slow the bowel and has a mild narcotic/sleep effect. It is also non addicting. Maybe try that. Best of luck. K [ more ]
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J-Pouch ForumsGeneral Discussion
UK J Pouchers
ET English Tony
Albannach I'm in the UK and had my j-pouch surgery done in Edinburgh. Excellent care and a first class surgeon with a lot of experience. The UK and US healthcare systems are so different. A lot of the stuff you read by American posters (which gives the impression that there are only a few places/surgeons in America who can do a decent job of j-pouch surgery, and you should be wary of having j-pouch surgery anywhere else than the Cleveland Clinic, etc) just isn't relevant to an NHS context. An NHS... [ more ]
JordySimo I imagine it will have an affect considering the goodness in foods aren't being absorbed as much with you not having a large bowel anymore and also due to the fact everything is coming through your system quicker. I was anaemic before and during my operations and had to take iron tablets with my other medication. I still have a feeling I am anaemic but my surgeon seems happy with my bloods at the moment. [ more ]
Hellbuff I had my take down surgery in july 2015. Still go between 5-8x per day. Take imodium regularly. Some food is ok 1 day but can send me running to loo another day. I am alive which is main thing with no cancer. Have a few problems with anaemia, waiting to see gastro again. Last year i had pillcam which showed ulcerated pouch and problems with duodenum. Wondering if the surgery stops my body retaining iron? Anyone else have this problem? Xx [ more ]
See all 13 replies...
J-Pouch ForumsGeneral Discussion
Can you get worms with a j-pouch?
A Albannach
J moons The way to diagnose pinworms is to put a strip of scotch tape over your anal opening and at night when they crawl out they get stuck to the tape. Take one of those in to your pcp. [ more ]
Scott F Most of the pinworm life cycle is in the small intestine, so I'd expect J-pouchers to be as prone to infection as folks with colons. I wouldn't make the diagnosis based on itching alone, though, since seepage and fungal infections can also cause itching. [ more ]
skn69 Why not? I never thought about it but why not? I guess that if you eat unwashed fruits or veggies, uncooked meats or don't wash your hands after whatever you could...I guess Jan is the best one to tell us (or Scott). Sharon [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Sulfasalazine/Azulfidine
AnnikkiAnnikki
Annikki Thank you for providing this information as it might be helpful to other. I am on no medications for my j-pouch with no pouch issues either. [ more ]
MichiganLinda Please be careful with cortisone injections and steroids in general if you take Cipro for pouchitis. I had been on cipro continuously since December 2015 with pretty good control of the pouchitis. I had gotten steroid injections in my left foot for Plantar Fasciitis. In may of 2016 I received an injection and a week later had a tendon in that foot tear. It was determined that it was a reaction between the cipro and steroid injection and I was advised to not get anymore injections and avoid... [ more ]
Annikki Thanks Jan. I knew it would be about 7-10 days for the shot. the Dr also says the disease often comes and goes. [ more ]
See all 15 replies...
J-Pouch ForumsGeneral Discussion
Loose stools since low carb
S SFF
SFF So it's been 3 days of returning to my regular diet and things are much better. System seems back to normal. Up less at night and no leakage! Definitely have learned that my system cannot handle wild, drastic changes in diet. From now on if I need to do anything for weight management it will be old school caloric intake control. Thanks for the replies and for confirming what I thought may have been going on. [ more ]
averyo99 I am sensitive to gluten but I still eat quite a few carbs. I eat a lot of potatoes, sweet potatoes, fruits high in carbs, rice and rice products, and sometimes gluten free bread and pasta. But I agree with Scott, if you felt better on your previous diet than that it probably the diet for you. You can still eat a healthy lifestyle and hopefully maintain your weight loss with some carbs. [ more ]
SFF Yup I think that will be the answer. Going to give it a couple of days but I think you're right. Thanks [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Anal fistula - suggestions?
PJ69PJ69
CTBarrister I am dealing with an apparent anal fistula right now which is not leaking and appears to be closed, although I had a 2 week stretch of leakage back in February when it apparently drained and closed. I saw a colorectal surgeon who said due to the proximity to the anus he would be very reluctant to do surgery due to potential weakening of the anal sphincter and incontinence. If you already had two surgeries on the fistula you have likely weakened the muscles in the area and the advice Mayo... [ more ]
Jeffsmom Welcome. As long as you are from the NYC area, I'm going to suggest Dr. Afanah, I think that's how you spell it. He is at Weill Cornell and is doing research on anal fistulias. I know this because my son had an internal one, from his small intestine leading to an abscess in his pelvic cavity. It's a long long story and we had a boat load of surgeons and doctors involved, Dr. Afanah being one of them. He is a wonderful doctor, and truly an all around nice guy. PM me for more information if... [ more ]
Scott F Hi, and welcome! Can you clarify what you mean when you write that Lomotil/Imodium are "not a great solution?" Do they work poorly for you, or is there some other issue with them? [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
SLIGHT BLOCKAGE, PLEASE HELP
MIKEEYMIKEEY
MIKEEY Thanks so much, for one day I had only liquids and next day very light diet but still having little out put but pain and distention gone. Must stay on light diet for a few days, just wish I had more output. \My first blockage, I was so scared. Thank you again nice nurse for your response. Have a good day and God Bless. [ more ]
Nice Nurse Hey Mikee, Just wondering how you are? I didn't see this till today, I hope you are better. I used to get a lot of obstructions and was hospitalized several times. When I feel one starting up and I haven't pooped in awhile and start getting pain, I use a vibrator on the spot that hurts. It really works! Also, drink grape juice, walk and lots of water. Avoid beans, nuts, seeds. Best of luck, K [ more ]
MIKEEY Just wonder if anyone can answer this. A few hours ago I passed maybe 10 maybe 1 inch blocks of stool, not a big amount, now just getting brownish water, still have distention and some pain, just wondered if this means the blockage is over? Never threw up or got nausea. Please help if you might know the answer, still on fluids. [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Loud digestive noises.
J jkdwyer53
Borislav tomorrow when eat breakfeast after finished breakfeast is going very loudly if i not go to bathroom to empty jpouch is make loudly and no want to stop. after every eat i have loudly sounds and when go to sleep to..is problem? all? and can be takedown this sound? [ more ]
Spooky 6 years out from surgery and I still have this problem from time to time. It's more a nuisance than anything else, and I tend to make light of it these days. The noise tends to come mainly from around the old stoma site. The most likely explanation, at least in my case, is that it's adhesions (I've been told I have them), and in that sense there isn't much I can do about it. I've asked both my surgeon and GI and none of them seem at all concerned; seemingly it's more the norm than the... [ more ]
nuggy I have this problem every day. Usually about 1-2 pm it starts. By the time I leave work my stomach is twice the size and am in pain. I think maybe its because I am standing all day. On my days off this does not happen because I can sit or lay and have access to the bathroom. it doesn't matter if I eat or don't eat - It still happens [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Pouch removed. Not supposed to sit for 2 weeks?
RE5RE5
TE Marie The stitches healed but I had a small opening, where my rectal stump use to be, that took 8 months to heal up completely. I used a great seat cushion in the car and sat on one cheek if I had to sit on something hard, like a chair at a wedding reception. My surgeon at Mayo's didn't tell me to avoid sitting all together. I think you will automatically change the way you are sitting due to the related pain/discomfort. Also my local stoma nurse told me to not sit too much. I think your doctor is... [ more ]
skn69 Doughnut... I sat on an inflatable doughnut for about a month...they used a hemovac on me for about 10 days to suction out the fluid and then I healed up slowly on my own but felt like I got rammed with a blunt object... The doughnut allowed me to sit and not put pressure on the area. There were no rules or regulations it was just what worked for me. Sharon [ more ]
RE5 Finally got ahold of the surgeon. He basically told me that I needed to keep all pressure of the butt to ensure it heals properly. Apparently this is the only surgeon that thinks that way since everyone on here says they sat after? I'll be honest I've kinda ignored that completely and I've been sitting on pillows and what not. Laying down for weeks is pretty much impossible for me since I'm a really active guy. [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
small amount of bleeding from rectal area
V vickiew
Jan Dollar I am moving this topic to General Discussion, as it does not belng in the Site Help forum. Jan [ more ]
vickiew Thanks for the input. I kind of wondered about the possibility of an internal hemorrhoid. I also think I may have made things worse by having some candy with nuts in it in the last month or so. Ever since I had a hysterectomy 4 yrs ago, the gas problem has been worse than normal -- simethicone helps a lot when I take it. I am going to try to "clean-up my diet a little, and re-adjust my immodium/lomotil doses and see if that helps, if not, will try to see an MD. Unfortunately my surgeon... [ more ]
Winterberry Hello, Vicki. Could it be an internal hemorrhoid or a skin tag? Or it could be from straining or even a hard stool. Even gas that is explosive can cause a bit of stress (stretch) in an already stressed area. Have you eaten anything that could irritate on the way out? If you have regular pouchoscopy it might show what the issue is. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Recommendations for pad at night
M MCH
aka KNKLHEAD I think these may be appropriate for many of us, and just discovered them. Of course, I'm not using them "as designed," but really like the coverage and the fact they are not uncomfortable in the least. Check out Depends Men's Shields Light. They are a triangular shape that seems to work very well for me! Just insert them backwards. [ more ]
dds There are pads for bowel leakage. They are called butterfly pads. You can find it on Amazon and also at Wal-Mart. They are like 7dollar's. [ more ]
CeeeeCeeee Walmart has Super sized Maxi Pads for a little over $3.00 for 48. They work for me. [ more ]
See all 5 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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