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J-Pouch ForumsGeneral Discussion
C-diff infections & hospitals
C CeeeeCeeee
Scott F Ron, C diff can be a very difficult infection to completely eliminate. A new (and remarkably successful) approach to treating recurrent infections is FMT (fecal microbiota transplant). Perhaps you can discuss it with your doctor. i don't think the testosterone has anything to do with this. [ more ]
RJP I have a questionbig have had a jpouch for 9 years. I have had c diff 4 times already. I am currently on Vanco. I have not took any antibiotics and continue to get it. I just started on testosterone therapy injections 3 months ago. I don't think it's from that. Does anyone please please have any thoughts ??? Ron [ more ]
CeeeeCeeee Thanks so much for clarifying my question/concern. It's scary! [ more ]
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J-Pouch ForumsHelp! Need advice now!
j pouch failure possibilites
E E_v
Jan Dollar I believe your doctor was just trying to be honest and tell you that your risk of pouch failure is higher than average because of your history of leaks and abscesses. He probably was just clumsy at it, and wound up scaring you instead of just informing you. Since your colectomy was during emergency circumstances, the fact you had these complications is not surprising. Basically, septic complications are associated with increased risk of pouch failure. I had a large pelvic abscess post op. [ more ]
Scott F It's strange for a surgeon to say this without explaining what extra risk he believes exists. I recommend that you ask. In your situation I might switch surgeons. Abscesses can develop for many reasons, but one cause is poor surgical technique. Repeated abscess development makes me more concerned about that. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Water intake
BA Bill A
Scott F Bill, you can tell if you're getting (and absorbing!) enough water by paying some attention to your urination. If you're peeing 3-4 times daily, and it's light-colored, then you're well-hydrated. If it's dark or less frequent then your body needs more fluid. If you withhold water to get your stool thicker you're very likely to regret it. I use soluble fiber (Metamucil, Konsyl, etc.) to bulk up the stool. [ more ]
Mysticobra All I can say is now that at its cooler out I have to remind myself to drink. Or my body tells me. With the cramps. In my fingers, toes. Diaphragm. Those are bad. Legs. Not enough water. This is just me but I was told also to drink alot. When I had a pouch. I now have an end ileo now but I still feel it's important. For me anyways. It's individual. Richard. [ more ]
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J-Pouch ForumsGeneral Discussion
incisional hernia repair people...question about pain
PouchomarxPouchomarx
Pouchomarx thank you ladies.. everything you say makes sense. appreciate it always [ more ]
skn69 Poucho, You are in a hypervigilant state right now, very conscious of what is going on in your body and everything that you feel. You are still swollen, unhealed, settling in...nothing is healed int here and it is going to pull and sting with every effort. That mesh is cultivating tissue and having things grow over it and into it...that hurts too...so don't worry too much...just give it time... Like Jan said, you have been given warnings from the big boss and it has scared you...but don't... [ more ]
Jan Dollar Believe me, if you were rejecting the mesh, you'd know it. The pain would be constant, there would be redness and swelling, and you'd be physically ill. It takes months for the scar tissue to settle in. I think you probably are nervous because Dr. Shen said he preferred IBD patients not have mesh repairs. He also prefers his patients not lift more than 25 pounds. These are perfect world wishes and all he wants is to erase any potential risk that he can. But, just because a potential risk is... [ more ]
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J-Pouch ForumsGeneral Discussion
Coughing due to Ulcerative Colitis
G GraceB
RML613 I've had coughing issues for years. Fortunately, an ENT suggested likelihood of gastric reflux. I got an Acid Reflux Wedge Pillow and the coughing cleared up completely. Below is some information that might be relevant to those in this post. Note that all I did was add the pillow. No meds. Hope this helps! Abstract Background Bronchiectasis is a progressive and fatal disease despite the available treatment regimens. Gastroesophageal reflux (GER) may play an important role in the progression... [ more ]
CeeeeCeeee Jovic.......I have been on Advair and Atrovent for quite some time. I am not on Prednisone normally but have been given it if my breathing problems escalate. It's been awhile. Meanwhile, I now swear by nebulized saline. I use it first thing in the a.m. along with my Hil-Rom vest. Between the two treatments it loosens mucus and allows me to easily get rid of it. I follow this with my Advair and Atrovent treatment. Then, in the late afternoon, I repeat the vest and nebulizer. I finally sleep... [ more ]
JoVic I just ordered a salt pipe! I remember getting mld relief from this cough when I was at the beach for 10 days this summer. I received excellent news today from my Pulmonologist! I do NOT have MAC which is a huge relief. I have no infections whatsoever, and sort of borderline pre-Bronchiectasis if that makes sense. Actually inflammation in my lungs causing this mucus, but little to no damage. My Dr. feels this is absolutely a pulmonary manifestation of UC (my eczema is flaring like crazy... [ more ]
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J-Pouch ForumsGeneral Discussion
BURNING SENSATION AND ALCOHOL
bederyparisbederyparis
Scott F You can eliminate the guesswork by cutting out the evening alcohol for a few day just to see if there's a change. [ more ]
bwils I would say the alcohol is definitely a factor. I love my beer/wine but I keep it to 2 drinks and only do that once or twice a week otherwise I definitely notice an increase in frequency and burning. I also take some Metamucil beforehand as it helps with both. [ more ]
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J-Pouch ForumsGeneral Discussion
Darrell Henry
suebearsuebear
Jan Dollar Sue, I did not know Darrell, but he sounds like my kind of guy. Every day has some sort of joy, and experiencing some adversity helps you appreciate simple pleasures. And, to maintain a sense of humor through it all, THAT is a grand thing! Thank you for sharing. I wish I had known him. Jan [ more ]
mgmt10 His posts were hysterical in the FB J pouch group. He was always saying something witty and cracking jokes. His decriptions of his butt burn would have me in tears laughing. A true warrior....RIP Darrell. Thanks for the laughs. Godspeed buddy. [ more ]
skn69 So terribly sorry for your loss and the loss of an amazing human being from what I read. Sharon [ more ]
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J-Pouch ForumsHelp! Need advice now!
newly created j-pouch / temp loop ileostomy / CONSTANT traditional bowel movement urge
M Maelleous
skn69 Maelleous, Well, that sounds awfully familiar (and it has been 37yrs!). I still get the 'feeling', I even dream about having a 'real' BM even though my colon and rectum have gone the way of the black & white t.v.! The 1st few months after step one I 'spit' brown, smelly, disgusting mucus constantly...I was miserable. I had a leaky stoma and a leaky bottom (they created my k pouch first and took out my colon later)...I was 'unhooked' but my colon felt like it was trying to crawl out my... [ more ]
Maelleous So some updates. Had a CAT scan, everything is normal. Immodium seems to do nothing, but Ativan helps some. Doing a scope through my stoma to check everything next. Been passing mucus balls every few hours - I think I am over producing and hoping they figure this out. Go through some good days, then like today I feel it spasming and it is driving me crazy. I'll keep this log updated in case anyone in the future has this issue. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Weight Gain
LG little greeny
Erik R When I want to gain weight I eat a lot of peanut butter sandwiches (some times with jelly and sometimes not, to mix things up) and drink some Lactaid whole milk with them. I also eat a lot turkey and cheese or ham and cheese sandwiches. If I drink a lot of juice I gain weight too, the sugar is bad for you but will definitely put on the pounds for you. So that's what makes me gain weight. Tons of bread (wheat, white, whatever your body can handle), milk, and juices. And the key is too not eat... [ more ]
Winterberry Hi, Little Greeny. If you will drink a lot of chicken broth for hydration, try to buy an organic chicken broth so there is no MSG or preservatives. It will be better for you and baby, especially if you plan to sip it all day long. Or make your own if you can, and you'll control what you put in it. Google "bone broth" or chicken broth for easy methods. I make my own broths by boiling and then simmering chicken bones, all kinds of vegetables and bunches of herbs. Add sea salt, ground pepper,... [ more ]
Megan O I have a friend who had to be on anti nausea meds almost her entire pregnancy [ more ]
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J-Pouch ForumsGeneral Discussion
Impacted Bowel
CTBarristerCTBarrister
Jan Dollar Yep. For many things, there is no "tech" way out of it. Better to put up with some pain than deal with side effects of opiates. Jan [ more ]
CTBarrister He told me they tried various things including enemas but in the end, he had to have the painful, dreaded manual stool removal. He told me they called it a "disimpaction." [ more ]
CTBarrister Thanks for your replies! My friend texted me last night that they were doing testing on him. This morning I texted him and I got a reply that he was at home resting, and that what happened at the ER last night was a "long story" which he would discuss with me later after he got some rest. I am now curious to hear what happened to him. I will report back when I hear his "long story" but the good news is he is okay. [ more ]
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J-Pouch ForumsGeneral Discussion
FODMAPS
BT Barbara T
Kushami ❤️
DaveInNorCal I have been inactive on this forum for a while and decided to check in. My UC diagnosis was always a bit provisional but was treated with mesalamine, etc... About a year and a half ago, on a hunch, I decided to try going gluten free, which as a practical matter means cutting out wheat and rye. The positive effects were rapid and profound. I am essentially symptom free, only becoming ill when I slip up on the gluten. My GI doc is now leaning against the UC diagnosis, although he still has me... [ more ]
Barbara T Very interesting. Thanks for that. [ more ]
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J-Pouch ForumsGeneral Discussion
tip of Jpouch weakness question ??
PouchomarxPouchomarx
Bobish No im pretty sure it wouldnt Gas is painful because stretch receptors are the only pain receptors in the gut, but the pressure of the gas is still very low, compared to a tyre, a football etc. After my takedown my bowel took a while to wake up, I was vomiting quite hard green bile, the doc said it was unlikely to cause any issues, he said the same about getting in and out of bed etc, that I couldn't do myself any harm, so I think a bit of gas isn't gonna cause the issue, even if it feels... [ more ]
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J-Pouch ForumsGeneral Discussion
low iron/anemia question ?
PouchomarxPouchomarx
marz I have had anemia since my bcir surgery 15 years ago. I have been told that since my ileum was used for the pouch, I do not absorb iron like most people (please someone correct me if this is wrong) I tried the iron pills at first, but they did not help and gave me terrible cramping. i have been getting iron infusions for 15 yrs, but now I only have to have them once a year (ferraheme infusions) I get my blood checked every 6 months, and when the ferritin starts going down it's time for an... [ more ]
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J-Pouch ForumsGeneral Discussion
5 months post takedown
SW Sharon W
Itsanewworld Hi Sharon. Nice to hear from you. I has my takedown just prior to yours and I am on the same boat as you. I am on Metamucil two to three times a day just to bulk things up a bit. However, I am glad to hear you are doing well and I keep hearing that things tend to continue to get better up to a year to 18months. Keep well. I do know I like this a lot better than the bag. [ more ]
SwollenColon Glad you're doing well. I'm 18 months with my pouch and doing very well also. I can tell you, at least in my experience, that things continue to improve, even this far out. My rule with problematic foods like pizza, or things with red pepper or jalapeno, is to never follow that meal with another hot or spicy one. I never have issues when I do that. If I eat pizza twice in a row, I have issues. And even then it's not terrible. My worst problems usually resolve completely within 24 hrs. now. [ more ]
Sunflower70 So nice to hear from someone who is in their first year and doing well. I'm sure that there are a ton of people who post in their first couple weeks with lots of questions and then forget to come back after they are doing well. I can add to the "it gets better" story too. I am 9 weeks post-take down and doing well. I couldn't imagine that the butt burn would get better and my skin would ever heal but- wow- it's healed up about 90%. I just have two little raw spots that hurt like paper cuts... [ more ]
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J-Pouch ForumsPouchitis
Problems with exercise and pouchitis?
T timmo
timmo Hey Winterberry - thanks for the swift response. And no, whilst I have checked pretty thoroughly, food is a pretty insignificant factor for me (unless I eat a load of crap or drink a bucket of alcohol or something - things that would probably upset anyone's guts). It's strange because I had this thing with the physical exertion before the pouch, when I had colitis, and then it wasn't a very common symptom either. I asked about it in a colitis FB group once (with several thousand members) and... [ more ]
Winterberry Hello, Timmo. I am pleased to know things got a bit better for you! And you will know more when your results come back, and that will help direct you. I have a negative reaction to foods like fish and chips (which I LOVE) and other fried foods. It lasts a day or so, until my system clears itself. I try to eat whole foods, as unprocessed as possible, but sometimes f&c with malted vinegar calls to me and I have to answer, to be polite. Stir fried noodles with vegetables and beef also calls... [ more ]
timmo Hey Winterberry, Thank you for your really kind reply, is much appreciated. The reaction I have to activity seems to come a little after doing it - the next day or so, or perhaps overnight, so a slightly different situation to you. Things have improved from when I wrote previously - I'm a bit stronger than I was, so can do more before I overexert myself. However, it is still a problem - I had two long days with work at the end of last week, and that meant I was up and going to the loo four... [ more ]
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J-Pouch ForumsGeneral Discussion
Clean up following a bowel movement
M MCH
CTB23 I have a bidet at home but looking into a travel one especially when away on vacation. Had severe butt burn when I went away for a few days the beginning of November. I couldn't wait to get home, used the bidet followed by sitzbath. No problems since! Also, I always apply Calmoseptine after each BM. [ more ]
Winterberry Hello, MCH. Maybe paper towels, the really soft, good quality ones, so that you can wet them with hot water in order to clean more thoroughly. Don't flush these because they could clog your plumbing if you send enough down the toilet; they don't break up the way thin toilet paper does. If a bidet is not an option for you, what about using a plastic, portable squirt bottle? They are called travel bidets, and approximately $15 U.S. on Amazon.com. You can put them in your bag and go anywhere. [ more ]
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J-Pouch ForumsGeneral Discussion
Less Bowel movements and stool is more firm
R Roger1066
Scott F Once you've been off the codeine and Imodium for a while you should see some improvement. If you need something more you could try Metamucil, but all of this depends on your drinking enough water, as Bobish wrote. If you're not peeing light-colored urine several times per day then you just need more fluid. [ more ]
Dunninator If I take more than 1 Imodium in a day I have that problem too. Rather a few more bm's than strain to empty. [ more ]
GB2014 That's EXACTLY what I did as well. After the takedown I didn't like how I felt when I took Imodium so I stopped. I prefer the looser stools I get now, even if it means I have to go once maybe twice more every 24h (no big deal to me). My surgeon told me I wouldn't need Imodium and I secretly thought to myself "I bet I will" but it turns out I really don't. Sounds like you're the same! Give it a few days without Imodium and things should be a lot less hard hopefully. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch scar
L LIGuy11
Roger1066 I'd be interested to know if it is a raised scar. If so I think the only thing you can do is get it surgically revised which wont totally get rid of the scar but improve the appearance. [ more ]
GB2014 After ten years I don't know if it will work as well but I found Bio Oil very good after my surgery for reducing the scarring. [ more ]
skn69 Hi Liguy11, I had more than a few openings through the abdominal scar and the scar had dehyssed more than a dozen times. I was left with an uneven crater about 2 inches wide, and 15 inches long. There were deep 'holes' as well. It also left me with 2 very uneven sides including one that was pushed sideways and very lumpy. I had 3 old stoma sites and one old colostomy site plus all sorts of other fun scars...9 in all. After years of hating myself and what I looked like I decided to have it... [ more ]
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J-Pouch ForumsK-Pouch Korner
New pouch - difficulty intubating + gas & leakage
DL de lune
skn69 Not sure if I have heard of NuVal but there is a company called Ostomycure that has a really cool implant that is a continent valve...they use it for normal ostomies and for people about to have them done but they can/could be adapted to us as well if I am not mistaken. http://ostomycure.com/ You might want to check it out. Sharon [ more ]
Bodoni Has anyone heard of the NuVal...a device to use in place and may help control leakage? Someone from cir.com mentioned it....but I can't seem to find any info. [ more ]
JLH Sounds absolutely Frighteninng. So sorry for what you are going through. I agree that a 30 Fr is much better. For me, even the 28 didn't have enough structure to insert properly. It would flop over. And the holes are too small. Just a thought but might you consider getting a second opinion from a different hospital system? Where are you going now? Keep us posted. Janet [ more ]
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J-Pouch ForumsK-Pouch Korner
K pouch Stoma covers covered by Medicare
J joanC
MJ0917 No joke but the best I've found to absorb mucus is the blue Scott Shop Towel rolls. They're found in the automotive section at Walmart. One towel could last me all day. Another thing that could help with mucus is Levbid. It's a pill you take every 12 hours, it stops bloating, gas, lessens mucus. Just a warning, it slows down motility too, so expect output to be thicker. [ more ]
Nicole12 I use a mepilex border lite bandage that is hypo allergenic and reusable for up to two weeks but I put a premium cosmetic cotton round before the bandage. It has saved me from spending all kinds of money and rashes.so my skin doesn't become iratated because of the mucus. I also apply Extra Protective Cream before the cotton round. The mepilex are expensive but if you protect and change your cotton round as needed you can reuse the mepilex for about two weeks. They are expensive but I spend... [ more ]
mlangbau I put this answer on another chain and it might come in handy here. I actually buy U by Kotex Security Ultra Thin Pads, Regular, Unscented, 44 Count. I cut them in half. They adhere to my underwear and cover the stoma. I have used these for years after trying others that weren't as gentle on my stoma site. As a male, I used to get some funny looks buying multiple packs at the grocery store...but Amazon has pretty much solved that difficulty!! It works out to about $5.50 every 2 1/2 weeks... [ more ]
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J-Pouch ForumsHelp! Need advice now!
omg now a butt drain
L liz11
crohn's j-poucher Oops my message above was for LIZ11....How are you doing with these issues? I'm sorry you had to go through this, but it's the first time I've encountered someone going through EXACTLY the same thing as me!! Can we chat more about it? Looks like you haven't posted on it in awhile and I want to see how you're doing. Thanks! [ more ]
crohn's j-poucher LIZZ how are you doing with these issues? I'm sorry you had to go through this, but it's the first time I've encountered someone going through EXACTLY the same thing as me!! Can we chat more about it? Looks like you haven't posted on it in awhile and I want to see how you're doing. Thanks! [ more ]
RLC Hang in there Liz! Although, it's easier said then done! I am still hoping for the best with this j pouch working and all the other issues that go along with having it! Roberta [ more ]
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J-Pouch ForumsGeneral Discussion
Prep for scope appointment?
WinterberryWinterberry
Scott F There are varying opinions about how often pouchoscopy should be done. The answer is clearest for folks with FAP, prior colon cancer, and perhaps dysplasia, who ought to get checked reasonably regularly. Cancers of the rectal cuff really do occur, but they are infrequent. [ more ]
CTB23 My surgeon has said I will be getting scoped once a year since takedown. My takedown was in August and my next appointment is in 4 weeks so I'm thinking he will let me know when I will have my first scope done. [ more ]
JordySimo I had a scope examination on my j-pouch when I still had a stoma so my surgeon could check on the healing... but are scope examinations a routine procedure after takedown surgery or are they only done when an issue occurs with the pouch? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Extreme pain with bowel movements! Pouchitis or cuffitis?
Y yellafella37
CJB Hey Jason, Keep in mind that a lot of chemo side effects are cumulative, so they get worse with each treatment. I know every chemo drug is different, but generally the side effects are cumulative. I did sitz baths also during chemo. It helped, but was a temporary and short lived relief. Also, one of my pre-chemo meds was a steroid, and it was heaven on chemo days and for at least 2 days after the chemo infusion. No pouch pain at all. What a roller coaster ride it was! Be kind to yourself, I... [ more ]
yellafella37 Thanks for the quick replies, Scott and C-Jay. I ended up calling my oncologist and he said it most likely is mucositis or ulceration in my rectum as a side effect of the chemo. Like you said, Scott, he suggested hot sitz baths primarily and managing the pain and said it should go away in a few days as the mouth sores go away too. So it was helpful to ease my mind and have a better idea of what was going on. I definitely may take you up on that offer in the future weeks, C-Jay. So far my... [ more ]
CJB Hi, I just finished 21 weeks of chemo for ovarian cancer. My J-pouch definitely took a beating. I can tell you that I was on anti-biotics most of that time to help with pouchitis symptoms. Probiotics are not recommended with chemo, as your body is immuno-suppressed and cannot tell good bacteria from bad bacteria. Let me know if you have any other questions regarding the chemo with a j-pouch. It's not easy C-jay [ more ]
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J-Pouch ForumsHelp! Need advice now!
Fertility
C Cary27
Scott F Cary, the information I'm looking at says that it would even be okay for a woman to get pregnant while on Humira. There seems to be no birth defect association. It gets a bit more complicated in the 3rd trimester, but that has nothing to do with the father. Good luck! [ more ]
Jeffsmom I went through 8 years of infertility. Go see a specialist asap! It's easy to figure where the issue may be. If you are in the NY/NJ area, I can recommend some doctors. Good luck! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Is it IBS or something else?
S shoflo
Barbara T That's what I feel like Clare...I look at food programs on tv with awe and wonder... [ more ]
shoflo I know☺ [ more ]
shoflo Thanks Claire, I WILL DEFINITELY look into the probiotic. I have the low FODMAP but I'm a extremely picky eater. Half the stuff thats a "no no" I dont eat and half the good stuff I dont eat. I get really frustrated every time I look at it�� [ more ]
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J-Pouch ForumsGeneral Discussion
Mislead/Misdiagnosed
BobishBobish
Bobish Sorry (/Happy?) to hear that poucho.. wow I think the docs need to be more honest about the reliability of these tests. [ more ]
Pouchomarx same here, two different hospitals and doctors stated I had dysplasia and report on colon once it was out---- no dysplasia [ more ]
Bobish Thanks for your thoughts guys. I had a suspicious area, i changed everything about my lifestyle (diet,water,stress,outlook,exercise,supplements etc) to prevent any developments, lump seemed stable, maybe I'm kidding myself but i was figuring the statistics applied less to me, then i get this heavy news which triggers my decision for an op which turns out to be wrong. I do know any doc i saw would have recommended an operation even without the dysplasia, but i made my decision based on... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Bad pain
K KC23
KC23 I know pain meds aren't for long term. And I know they will taper you off usually from roxicodone to narcotics like Percocet with Tylenol then wean you off with hydrocodone.. my pain has gotten better I just realized I needed to take it easy I had been to active. It is annoying I get like 60 5mg percocets for example and have to take 2 every 3 hours a day as needed and ends up being a 6 day worth of meds as prescribed although I conserve them and try to take just at nights. Jus annoying ha... [ more ]
Mysticobra Jan. I only posted what I did cause my experience was not a good one. Three back to back surgeries was not good. I didn't want to exist. The pain took months to subside. Just one man's experience. Something I would have never expected. It took me 9 months to get back to work and then I still was not ready but I was going broke and had to do it. I was still on pain meds. But it's done and I am past that. I would never ever want to go through that night mare again. I think about it now as I... [ more ]
Jan Dollar To be honest, 18 days post op you should be decreasing opiates, not increasing or maintaining them. If you are still having moderate to severe pain, it is abnormal and should be investigated. If there is no discernable pathology it could be withdrawal that you are feeling after 8-10 hours. It is also possible to have nerves trapped in scar tissue. But regardless, continued pain that is not improving more than two weeks post op is not normal. chronic pain is different than post op pain, and... [ more ]
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J-Pouch ForumsGeneral Discussion
NSAIDs
K Kastuhlm
claire Hello, just wondering if you may have been taking any flouroquinolones like Cipro in the days, weeks or months before this onset? These drugs are toxic to chondrocytes (cartilage cells) (see ref below) as well as tendons and other connective tissue (and nerves) and can lead to all sorts of strange long term painful symptoms and syndromes in those affected. I recently read an account of someone needing a procedure on their rib cartilage following Cipro use for a simple UTI but they had tendon... [ more ]
Jan Dollar Sounds like costochondritis or some other rib pain syndrome, and yes, NSAIDs are the common treatment. As Scott says, a few days should be fine. FYI, I have experienced rib inflammation as part of my enteropathic arthritis. It is about inflammation of tendon/ligament to bone attachments. But, this is not the common scenario. Jan [ more ]
mgmt10 Using it temporarily is usually just fine. I just had foot surgery this past week and had to take a prescription strength NSAID for 5 days. All is okay with me. I agree with Scott to follow up with your regular doctor. Kind of strange to have inflammation unless you injured yourself somehow. [ more ]
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J-Pouch ForumsGeneral Discussion
Blockage or pouchitis?
WinterberryWinterberry
Jan Dollar It could be either or both. Your best bet is to have a scope sooner, rather than later, even if you are improved. I was found to still have significant pouchitis even though antibiotics, azulfidine, and Cimzia were improving symptoms. My GI was not fond of me being on antibiotics all the time, so he put me on Imuran and Remicade. Doing better now without antibiotics. Jan [ more ]
Scott F It's best to get a good (or even a tentative) diagnosis before considering (and worrying about) possible treatments. The number of possible complications of possible treatments for possible diagnoses will drive you crazy without being useful. [ more ]
Winterberry Hello, Scott. I am scheduled with my surgeon for my regular scope the first week in January. I am thinking of calling the office and asking to move it to December if I don't improve by tomorrow. I also thought of a stricture, and the reason I'm hesitating moving up my appointment is the worry that if he dilates me I might end up with more leakage -- more than I've been experiencing constantly since Monday. Can heavier / more frequent leakage result from a dilation? [ more ]
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J-Pouch ForumsHelp! Need advice now!
UC Jpouch - Pain, Urgency
T Tp_master
jeane I'm so sorry to hear this. Sounds like they may make a new connection? Are they able to figure out what has caused this after all this time? I'll be praying fir your recovery. [ more ]
Tp_master An experienced general surgeon watched while the radiologist performed the barium enema. The pouch filled with nothing going into my small bowel, even raising the bag on an extendable pole didn't move any contrast into my small bowel. Looks like it isn't a stricture that can be fixed with the balloon or stint. Have to have an X-ray while I have a bowel movement now, but it's sounding like they might need to re-attach the small bowel to my pouch. [ more ]
jeane Best of luck to you. Please keep us posted. [ more ]
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J-Pouch ForumsPouchitis
Azithromycin, cipro and flagyl
Marcus1959Marcus1959
Marcus1959 Thanks Rob... I just might take you up on that! With regards to a asacol, I believe there is a thread on here that addresses it. I'm not sure how to direct you do it, but when I googled "asacol pouchitis", the thread was linked in the search. All the best! Mark [ more ]
kubrider Hey Mark, Glad to hear you are on the right track, I'm thinking perhaps a slice of pizza on every first Sat of the month would be OK, and a pat on the back for all the hard work. Rob [ more ]
Marcus1959 Thanks everyone for your kind words and recommendations. It seems these drugs effect us all differently. They seemed to be the charm for me the first few times of pouchitis but obviously my body does not like them anymore. Since my post I have done some more research attacking this naturally. I have altered my diet ... eliminating wheat (gluten), sugar (a real culprit of bad bacteria), and for the most part, dairy. And of course staying away from processed food. I have also been taking... [ more ]
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J-Pouch ForumsGeneral Discussion
Aging pouch
C Cath
Cath thank you Bodoni that's good to know. May i ask what are valve corrections? [ more ]
Bodoni I have had a K-pouch since 1976. By Dr. Joel Bauer, Mt. Sinai Hospital in NYC. I have had a couple of valve corrections. Very little pouchitis, which responds well to Flagyl. [ more ]
gray58 Cath I'm like Megan, I worry about my sagging jawline too! No, I'm 58 and will have had my pouch 20 years this coming April. I am experiencing some night time incontinence as well. I was chalking mine up to the fact two years ago I was diagnosed with Crohn's (lucky me!). I suppose if it's lasted this long there's no reason logically I can see why it shouldn't last 50 years. [ more ]
See all 5 replies...
J-Pouch ForumsPouchitis
VSL3DS INSURANCE APPROVAL
D Dunninator
jeane yes,,,appeal though insurance. I got mine approved that way. [ more ]
Scott F Dunnnator, there are a few threads with useful information worth searching for. Here's a good one to get you started: https://www.j-pouch.org/topic/vsl-3-15 [ more ]
CTB23 You can appeal it through your insurance. I believe Scott appealed it and got it covered. It's probably a bit of a process. Also go on the VSL-3 DS site. They have programs set up to offer financial assistance and in some situations will pay for it entirely based on income. My sister gets it for free. Unfortunately, I am not eligible. I am in the middle of appealing my insurance for a different medication and it has taken quite a few months so far, and no approval yet. Good luck! [ more ]
See all 3 replies...
J-Pouch ForumsPouchitis
Treatment options
LoriBLoriB
claire The research on tumeric and inflammation is looking quite exciting, has anyone tried 'golden paste' tumeric treatment for pouchitis with any luck?? [ more ]
Spice Thank you for your replies. I have found that GPS I see have limited knowledge. I found that with my last GP where I lived before. The hospital where my operations where previously performed where excellent. The consultants and surgeon were fantastic. My consultant also had a j pouch! I have moved to a different part of the country so this was my second visit to this hospital. I am sure the consultant who carried out the camera is very knowledgeable and experienced in this area, but he was... [ more ]
Scott F Spice, my best suggestion is to find a doctor more knowledgeable about J-pouches. You're just 2 hours from London, I think. Your current doctor might happily suggest someone else. Perhaps "Is there someone I should see who treats this all the time?" Cipro alone seems to often do the trick, if only pouchitis is going on. [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Gas/bloating
C Chayes
claire Rifaximin is the expensive one usually used for SIBO... it's much safer than the others too [ more ]
hever Hi Chayes, Do you mind telling me the name of the antibiotics you were given? Thanks Heather [ more ]
Chayes Hi, everyone thanks for the input. I went to see my GI dr and he put me on 2 antibiotics and an anti inflammatory, seems to be helping. I did ask about taking something to prevent gas and he suggested to continue the gas ex and take 20 mins before eating. To help keep down the gas. [ more ]
See all 9 replies...
J-Pouch ForumsOstomy & Skin
How to thicken output
LambiepieLambiepie
TE Marie Thank you Lambiepie. I have an apple a day in my morning protein smoothie which also includes blueberries, banana and other frozen fruits and carrots and kale for 6 servings of fruits/veggies. I still need to take 8 Loperamide and 2 servings of Metamucil mixed with applesauce to keep everything coming out in a good consistency. 8 months since my j-pouch removal and things have calmed down. It has been a long process. I think my small intestines had to have time to adjust to the new waste... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
After takedown questions
A averyo99
JayPouch As far as probiotics, start light with regular eating of GOOD yogurt (read:not Danon) and make sure you vary your diet. Diverse diet helps to ensure that bacteria stay in balance. Staying about from large amounts of simple carbohydrates is also a good idea (simple sugars feed bacteria and can jack up inflammation) Don't do too much food that's acidifies your system, and you'll probably want to steer clear of spicy food as a general rule. Capsaicin has caused me some serious grief! As for the... [ more ]
Winterberry Hello, Dee. Also do a search on this site to read posts from members with longest serving pouches. Some pouches are 20, 30 and more years old. Be good to your pouch and it will take care of you. Eat whole foods, unprocessed foods, as often as you can and enjoy the odd splurge and you will learn what is good for your pouch and what isn't. I learned that my pouch does not like lemons in a glass of water (my colon did....) but it welcomes a good steak or vegetables roasted very, very soft and... [ more ]
Scott F Dee, pouches sometimes fail, but what you've been told about them not lasting and requiring biologics is, I believe, nonsense. Plenty of folks have anemia problems, and some get iron infusions. You can do a search on this site for their many posts to learn more. [ more ]
See all 18 replies...
J-Pouch ForumsGeneral Discussion
Just had takedown. SO MANY QUESTIONS!
R Roger1066
CTB23 Almost 4 mos. out and very little gas issues, sleeping through the night with the help of Immodium before bedtime, which I did not start until about 7-8 weeks from takedown. It gets easier! Nothing I can't handle and little to complain about! [ more ]
averyo99 I am only three weeks post op but I can testify that the gas and cramping pains are already better! It is so hard to strain and empty that pouch but right before the two week out period emptying the pouch and gas pain greatly decreased. It sounds like you are on a good track in the other ways! I am not taking Imodium right now either, my surgeon wanted to wait a little while and let your body figure itself out first. It's hard to take it day by day, but I do hope that you will have some... [ more ]
Scott F Roger, I personally wouldn't use opiates like codeine for pain from cramping. I'd be concerned about the gut slowing making the problem worse. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
hernia mesh issues with jpouch people?
PouchomarxPouchomarx
Mary O I'm not sure if this is helpful because I don't even know the name of what I had done. That said, I had a hernia repair, with mesh or some other substance, in 2001. It caused nothing but problems. I had stabbing pain and within a year, started the plan to have it removed. I really didn't want another surgery so I was dragging my feet. Within a month or so before the surgery date, I ended up having a complete hysterectomy. That surgeon removed the mesh. He said it appeared to have somewhat... [ more ]
Pouchomarx I know its only been two weeks since my surgery but a question for those who have had an abdominal incisional hernia repair. I seem to experience more dull achey pain when I am wearing my binder more so than if I am not wearing it. Is this because it is pushing on the surgical site?? [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Bleeding in the toilet
K kellynobelly
canlafre Blood in the toilet can be very scary. I have been there. I would take it easy and pay attention to your body. You know your body the best. [ more ]
Jan Dollar It all depends on how you feel. A liitle blood can look like a lot in the bowl. Go to the ER if you feel dizzy or lightheaded. Otherwise, I think you can call your doctor to try to see him ASAP. Jan [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Low carb, low Fiber, High Protein diet...
PouchomarxPouchomarx
Pouchomarx I don't have any issues as far as anything bothering me, I saw Shen the other day and told him I was still experiencing some leakage from surgery and he told me to try this diet and see if it helps at all. [ more ]
Winterberry Avery099, BBQ wraps are the best, and so easy. You can use lettuce leaves to wrap the fillings if a regular wrap is too carbo-y. And pizza crust is especially good when dipped in garlic wasabi mayo, which I make myself. I'm starting to learn how to bake cakes using almond flour instead of white flour. AKA KNKLHEAD, canned pasta sauce is really good if you throw in basil leaves and let them wilt while the sauce heats up. Fresh! [ more ]
averyo99 I guess I should have clarified more...although I say things like BBQ wraps, pizza crust, and bread I make most of them myself and they are much lower carb. (Coconut flour for a lot of things) Potatoes, yes are high in carbs but I can tolerate them. [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
J-Pouch Partner
Lisa KLisa K
Lisa K Thank you everyone! Yes i know he has a slew of autoimmune isues... poor thing. We are scheduled for the first week of december so i am hoping he gets relief. [ more ]
lablover Congratulations on the engagement!! [ more ]
RustedFox Just FYI, restless legs is not an autoimmune issue. Post-reactive (subacute) Lyme disease often, but not always, is. Source: I'm an MD. Have UC, but still have all my native colon. [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
12 Years Post Op experiencing increased BM, Vaginal Discharge, Weakness
J Jules2
Scott F Jules, if the discharge was negative for bacteria (in two tests) then it's very puzzling, particularly with the air you described. It's unlikely to be stool, I think. I suppose the antibiotics could have killed most of the bacteria, depending on the timing of the cultures, but I'm at a bit of a loss. I can't begin to imagine what an allergist might do for you, much less a homeopath. Is the bladder infection cleared up now? Since the diflucan didn't do the trick, what's plan B for the yeast? [ more ]
Winterberry Hi, Jules2. While you decide about including an allergist to your medical support group, try to fix what you can control, and that's your diet. If you're having frequency try not to eat the leafy greens or other roughage and see if things calm down. Try to eat soluable fiber. If you like zucchini, peel the skin away and eat only the fleshy part (soluble). Turn your veg into soups with a blender. Treat your pouch like a one year old baby: soft foods that have lots of protein and some carbs,... [ more ]
Jules2 Thank you both so much for your insight. I agree, my docs are not "inspired", I like your word choice Scott. �� I did try to go on a whole food diet early this year, organic veggies, kale, spinach and really watched my protein intake. I really like all veggies, cooked or raw. But I don't digest these foods well. It didn't help with my increased BMs. It made things worse, so I subsided on the green leafy veggies as much. I have not contacted my surgeon, but am open to any suggestions. The... [ 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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