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J-Pouch ForumsHelp! Need advice now!
Fainting- Jan can you help?
A akteacher
Angie Wilson This is frightening - I went through a period of this about 15 years ago. Went to ER twice. They never could figure it out and called it "vaso-vagal" response - having to do with the vagus nerve (sorry if spelled incorrectly). Good news - it stopped happening. Who knows why it did? I agree with all - drink and yes, some sugar. I drink propel and G2 along with regular water. Of course, everyone is different. I also try to be certain I'm getting enough protein. That and electrolytes seem to... [ more ]
Buttsy Gosh, here is another P.S. I also found during my worst fainting periods (either dehydrated, j pouch blocked, AZ heat, exercise -sometimes not even very much)....found that my lymph nodes were blocked! Not everyone knows to or how to manipulate the lymph areas...look up The Lymphatic Man online..He was a loss why his wife kept getting dizzy - in a shower, or just getting up, many simple things....finally he found it was blocked lymph glands. He is trying to get the word out there. Someone... [ more ]
Buttsy Was just thinking....sometimes if I had a blockage, (must be that everything clogs for your body to work correctly). I would feel faint, so at that time would go right to liquids only..have learned to practice deep breathing which really helps too. Breathing from one nostril, then another also helps. I found sometimes I held my breath and did not realize I was doing so until I started yoga. [ more ]
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J-Pouch ForumsGeneral Discussion
Attn: FAPers; hightened risk of hypertension?
RJG-RossRJG-Ross
Chuckus Ross, I read the article....... http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2518080/ Also the others......... That's talking about Adrenal Tumors, yes, but again doesn't show any direct correlation of CVD and FAP...........sure, there is a tangent, but, no correlation directly to CVD. Is there a heightened sensitivity or predisposition to adrenal tumors for those of us with FAP? Yes. That's a very well known fact, though the statistics show "1-3%" of all us with FAP, I'm of the mindset that... [ more ]
RJG-Ross Angie, I was about to suggest your being tested for Vitamin D levels and the possibility of spending time in the sun, especially after your response in the SIBO post. But, here I just read that you have problems going out in the sun... skin/nerve sensitivity in your arms... I think it's very complicated when you are taking so much medication. Being homebound is a great problem and becomes an increasing problem with age, since with age melanin (responsible for the first step in producing... [ more ]
Angie Wilson Thanks for all the information. You have done a tremendous amount of due diligence work. I have not followed studies on FAP at all since I gave blood to Johns Hopkins about 20 years ago. One thing that is interesting to me personally is the endocrine/cortisol issue - I know I have issues with these things - I won't go on and on about details. Whether it is because of FAP, a hysterectomy and oophorectomy, and/or just getting older - who knows. Probably multi factorial. If I may per chance... [ more ]
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J-Pouch ForumsOstomy & Skin
what cream or paste to use ? ? ?
Mdz122Mdz122
TE Marie Hi Mike, I'm having a difficult time and am wondering if the Ilex worked for you. Does the skin around anyone's stoma improve using Ilex. [ more ]
Jan Dollar This really sounds fungal. Rather than make things worse, I'd see the doctor and get something prescription. Ilex is great for healing excoriation from leakage (like super diaper rash), but if you have an infection, you need something else. I'd call the doctor. Jan [ more ]
Mdz122 Originally Posted by Jan Dollar: Maybe you need to stay away from those barriers that lock in moisture as much as locking it out. Try an antifungal powder like Zeozorb or Caldesene. But, if you are really wicked excoriated, then Ilex is your go-to. Jan Jan, I tried the Caldesene powder and it didn't seem to help much. I went back to trying Destin again because I was told the zinc is really what you want. Everything down in my crouch area is red, there is no normal looking skin. All of it is... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Disability Question
Animal LoverAnimal Lover
TE Marie Right on animal lover! Angie, I feel older too. In more ways than my health. I'm turning 60 this month and most my age are still in good health. I found out who my real friends were after my disability kept me from doing things like lunch or golf. I don't miss the others any more. Plus I 've gotten to know good caring people here and in other support groups. Nice thing the internet does for us. It and people like Bill and Jan Dollar for this site! [ more ]
Animal Lover To all of you that shared your thoughts, please know "we are not crazy and we should not feel ashamed for 'needing' to utilize Disability...we are disabled and we earned it...period". God Bless you all... Animal Lover [ more ]
Devora1 ❤️
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J-Pouch ForumsGeneral Discussion
Cramping
LivingLiving
Jan Dollar As long as it is relatively fleeting and not constant, it should be OK. This seems likely to be some "kinking" of the intestine due to adhesions (internal scar tissue). The most common site for this is the stoma site. As your gut settles after surgery, this symptom should settle too. More than a year post op you probably as settled as you are going to get. Like Dewey said, be sure to stay well hydrated. It does make a difference. Otherwise, surgical release of adhesions are the remedy. Most... [ more ]
deweyj how is your hydration? I have noticed that one of the first places I draw a cramp is at my old stoma site when I have been overly active without proper hydration. I had this happen decades after my surgery. still happens on occasion. [ more ]
clwakley I had takedown in March 2014 and I still have these from time to time, especially if I bend over at the waste. I was told they are due to the numerous open surgeries I had and should subside with time. [ more ]
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J-Pouch ForumsGeneral Discussion
Celiac testing
DJ HDJ H
Jan Dollar If it helps, celiac disease affects the small intestine, not the colon. So, if you had colon inflamation diagnosed as UC, celiac or gluten intolerance would only exacerbate symptoms, not cause colitis. Jan [ more ]
DJ H Hi Jan, thanks for the reply! You are right in the grand scheme of things that it doesn't matter as long as I know what to avoid to improve things, but I guess it would have been a piece of mind thing to have something official. I wish they would have done the testing way back when I still had my colon. I still wonder if that was an underlying issue all along. Thanks again for your reply! [ more ]
Jan Dollar Short answer: no. Screening requires gluten in the diet. Biopsy confirms if there is damage consistent with celiac disease. https://celiac.org/celiac-dise...sing-celiac-disease/ Does it really matter whether you have a firm diagnosis of celiac disease or gluten intolerance if the only treatment is avoidance of gluten? You already know there is at least an intolerance. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
what is the policy for this forum regarding answering questions
AW Angie Wilson
Angie Wilson Yes - I agree - if truly urgent, they will go to ER or dr. I can only imagine the amount of traffic you've watched come and go through here for years. I will try to do my part and answer when I think I can help someone - or at least make them feel heard and less alone. I am certain you have given all this everything you've got and then some! I appreciate your kindness and dedication - I saw this forum years ago - and I read a few threads - and at that time I was so busy working.....I just... [ more ]
Jan Dollar No worries! Everyone was a newby once. I don't like it either when someone gets no replies to their questions, but sometimes by the time I get a chance to look at the forums, 50 new posts go up and I can't look at them all. But, if it is truly urgent, they need some face time with their doctor, not waiting for an answer here. Holiday weekends can be the worst, as regular members are off with families and not online. Jan [ more ]
Angie Wilson Thanks to all. I think this group is wonderful and I think I touched a nerve - I am new and just didn't quite know how it worked. I think it's great and no, I don't think we must reply about things we don't know anything about. I'm one of those nutty people who thinks I can help way more than I actually can. Character flaw of which I'm well aware. Again, thanks to all for replies and now I know how it works and I won't worry if people get no replies. You have all been very kind to a new... [ more ]
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J-Pouch ForumsGeneral Discussion
memory issues
B Bodoni
Former Member Since stage 2 surgery, I've suffered from dehydration and when severe, to the extent of being admitted into Hospital; I had to really concentrate just to speak. I would lose track of what I was saying mid sentence and totally forget the most basic of questioned asked after I had started to answer. Since takedown, I've never dehydrated to such an extent but at times when I do fail to consume enough fluids or electrolytes, it does effect my judgment, such as making decisions, I wouldn't... [ more ]
skn69 I have had my brain burned out so often from surgery and anesthesia that I thought that I would never get it back...As a teacher that is a tragedy. I noticed that it goes in 3 week and 3 month phases for me...the 1st 3 weeks I cannot even concentrate enough to read a book...the next 3 months I can do basic tasks but nothing requiring concentration at all (reading the tv guide is as far as I get), then I get to the next 3 months I can read books, remember names and do some memory work...in... [ more ]
mgmt10 Oh yes, big time. Ever since my surgeries my memory has deteriorated. I blame it mostly on all the past drugs (pretty much every one to treat UC) I was on. That an the anesthesia. Being under for 8 hours has got to do something to the memory. I always had a good memory so it's a bummer. [ more ]
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J-Pouch ForumsGeneral Discussion
Feeling pressure in my stomach
S stpaulmom
stpaulmom Thanks Jan, I don't have my gallbladder anymore. I've never had an obstruction, but I was wondering about that too. I'll keep watching my diet and monitoring the symptoms. [ more ]
Jan Dollar Could be a partial obstruction, but you'd think your symptoms would worsen after meals. Still, a possibility of a very mild one. However, your symptoms are vague enough that it would be difficult to pin it down to any one thing. It could also be mild gallbladder trouble, mild gastroenteritis from a viral or bacterial infection, early pouchitis, etc.. One thing you can do is examine your diet to see if you ate anything new or unusual in the past week, or increased any one thing (like dairy,... [ more ]
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J-Pouch ForumsGeneral Discussion
SIBO, TMAO, Cardiovascular Disease and J-Pouch/colectomy risk factors
RJG-RossRJG-Ross
RJG-Ross Angie, at the moment and for the next few months, you'll have to make a concerted effort to get spend a little more time in the sun in Dallsas. I live in Guadalajara, Mexico (from NYC) and what would take 30 minutes to get a burn, now takes a few hours. But, thank god I don't live in NYC now! or I would have no means of getting even a slight tan between late September and late April... Ross [ more ]
RJG-Ross Allykat, you didn't take over the thread. People shouldn't be so worried about how much they write. Afterall, the point of the community is for all aspects of support. Who is qualified to judge what person has written more than they needed for helping themself and others? As for cardiovascular disease... It has so little to do with total cholesterol and LDL cholesterol. It probably has more to do with inflamation and low levels of HDL cholesterol. PLUS, for women over the age of 60, higher... [ more ]
AllyKat Oh thanks, I do get out and go to the gym a lot when well. And walk the malls, lol. I can't be in sun cause I had melanoma but do take Vit d and have it checked twice a year. Sorry to have taken over this tread. BTW Heart disease runs in my family but I have no signs of it, even with high cholesterol which I take nothing for, I do take a lot of anti inflammatory Vit, my good cholesterol is very good though. In fact I passed the cardio test with flying colors! [ more ]
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J-Pouch ForumsK-Pouch Korner
BCIR + pouchitis
J JLH
JLH pouchitis is the worst prediction that i can imagine for my new k pouch. i'm a bit more that 3 weeks out from surgery and due in four days to have the cathera removed. have had a very difficult and slow recovery, much of the problem has been excruciating back pain--right up there with breaking six ribs and no available pain meds! looking forward to getting rid of this external plumbing, and the associated smells. it's doable, and of course necessary, but not a chance that i'll miss my plane... [ more ]
Jan Dollar BCIR stands for Barnett Continent Ileostomy Reservoir. It is not really patented or trademarked, but just a modification of the continent valve. It is performed at a number of centers in the US, but is most known at the BCIR centers. The Kock pouch has also undergone various valve improvements over time, just like the ileoanal pouch has. Jan [ more ]
skn69 BCIR is a continent ileal reservoir with a patented continent valve that is done in only a couple of private clinics in the USA... It is the little sister of the original K pouch (which also bred the J pouch)... Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
psc
LB LeVaughn Bluemel
roseviolet I've read studies about the positive effects of Milk Thistle on PSC. Results look promising, but the studies done so far have been informal and more official studies need to be conducted. There is quite a bit of literature on this topic on the web and on the NIH (National Institutes of Health) web site. When I take Milk Thistle daily, my liver tests are great. If I stop taking it, the enzyme levels gradually rise a bit. Side effects appear to be minimal or none, but until official studies... [ more ]
JeffDC Welcome to the club! Alcohol is a definite no. Excercise is a good thing to do-it helps you mentally and physically. But listen to your body. [ more ]
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J-Pouch ForumsPouchitis
Anybody felt like this?
D drvena
palm55152 Jan you have been such a big help to me..i am going to pick up rx for a better pain pill tomorrow. I am taking both flagyl and cipro twice a day. I have the anti nausea pills. so far have not had to use them but don't feel too much better. my problem began with some red ulcer like dots which the doc thought was shingles. after some surgery and ct they discovered pouchitis. but after I play a sport(tennis or pickleball) the dots are back [ more ]
Jan Dollar Mine is c-spine. Causes tingling and numbness in my hands if I look up more than 15 seconds or so. I think I have some lower lumbar stenosis too (but haven't had the MRI to diagnose). This is more osteoarthritis, but my rheumatologist tells me that having inflammatory arthritis can cause accelerated osteoarthritis. Lucky me! Jan [ more ]
drvena Jan, I think I read somewhere you had spinal stenosis. I do too.How does it manifest in your case? [ more ]
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J-Pouch ForumsK-Pouch Korner
K Pouch Surgery
S Sunshyne89
Sunshyne89 Thank you Sharon and Teresalg. This information has been very helpful. I am still doing some research and I am not sure which route I will take. I had a bowel obstruction, hernia repair and ileostomy revision in 2015, total colectomy in 2014, polypectomy in 2014, gall bladder removal in 2013 and have had several other surgeries not related to digestive issues. I am a 7 year brain tumor survivor as well. So I definitely want to make sure I make the best decision for my body. Though Florida is... [ more ]
TeresaLG Hi Sunshyne89. I had a failed j-pouch and now have had the BCIR since 1999. Yes, I've had pretty chronic pouchitis, and the anemia and vitamin deficiencies that everyone deals with. I've been managing pretty well though until now. I've had all kinds of tests and we can't find the source of my excruciating pain. I'm actually considering the ileostomy, as I just want to get on with my life. I'm disheartening to hear that your ileostomy was so problematic. Oh to just have a healthy colon! Good... [ more ]
skn69 H Sunshyne, I have had a k pouch for about 36yrs now...it is a delicate surgery and needs to be preformed by an experienced surgeon who knows what he/she is doing...there are not a lot of them out there. It has a lot of advantages over a j pouch or ileo if your sphincter is not reliable. You saw the video so you understand. The k pouch and Bcir are almost identical other than the reinforcement of the valve that is a trademarked procedure for Bcir. A lot of k pouch surgeons do their own... [ more ]
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J-Pouch ForumsGeneral Discussion
Why is jpouch and not BCIR the "gold standard"?
B Badplumbing
skn69 Hi Patty, I have a question for you regarding the pain that you are having with your stoma...(and please do not hesitate to repost the question on the K pouch section or this forum)...have they checked for a peri-stomal hernia? It can hurt and burn like a cigarette burn or be a long-dull, constant pain depending on how big it is and where it is situated along the stoma. When I started having stoma problems in 2007 (post k pouch redo in 2000 and 2004) they never thought about it...Even when I... [ more ]
Angie Wilson Jan - you are wonderful - pouch or no pouch. A nurse to boot. I was a teacher and counselor. It does help that you get the pouch thing, but you'd be out trying to help others in some capacity no matter what your situation. Thanks for your kind replies and I promise I won't bug you. I feel a tremendous amount of gratitude to you and those who started this forum - please know you are appreciated. Don't feel you need to reply - I bet this place wears you out. I get that Yes, this too shall... [ more ]
Jan Dollar Yes, I have a j-pouch. I had my surgery in 1995 due to uncontrolled UC. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Severe Stomach Pain 12 months after J-Pouch surgery
D dseley17
clwakley Glad to hear you are getting help. I think others have commented that they had blockages that were not seen when test were performed. Mine have always been located easily. Hope all goes well for you. [ more ]
dseley17 Thanks... I'm back at the ER and they are treating it as a blockage - though they can't see anything that appears to be blocking. They agreed that the symptoms were just too coincidental not too. Really appreciate the info. Denise [ more ]
clwakley I have had several obstructions and the symptoms were identical to yours. I would try another ER. [ more ]
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J-Pouch ForumsPouchitis
Chronic Cuffitis - Next Steps?
KQ Kevin Q
deweyj I think those are reasonable questions to pose to Shen or his PA. Candidly I really don't think I could offer much more than moral support. Shen is so highly regarded it would be difficult to second guess him. That said I can imagine that he has his own agenda and being who he is, it might be challenging to be heard during your appt. I would encourage you to write your questions down and bring them in with you so you are fixated on getting them answered. I do that with my doc and while she's... [ more ]
Kevin Q Thank you so much for your response! The nausea comes before I use the Flagyl. I keep getting this nausea that starts creeping up on me. It feels like the feeling when you're starting to get sick and have a really high fever, but I don't have a fever, vomiting, or diarrhea. It's basically the pouchitis feeling without any of the other symptoms. Anyway, I have just been calling my local GI doc and he's just been telling me to take Flagyl for a week. Although that has taken care of it, I've... [ more ]
deweyj Kevin you are seeing the jpouch guru, Dr Shen is world famous. that said I hear your frustration. Shen has written extensive papers about pouchitis and I believe has used biologics like Remicade etc. CDiff can be a recurring bitch so while not testing positive for it, he might be on to something. Flagyl is a wondrous drug but also notorious for causing nausea especially over time. Nausea I believe is also sometimes an accompanying symptom of cDiff so maybe that's it. Do you think the nausea... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Post surgery unrelieved
M Momma
ks1905 I freaked out the first few days after my colectomy. No one told me that I'd still be having some UC symptoms because my rectum was still in place. I had mucus discharge a few times a day. It did get better each day after I got out of the hospital. My surgeon told me that I could use a suppository like Canasa to help the UC symptoms in my rectum. I hope that your son feels better soon. [ more ]
skn69 I had a k pouch done in 2+ steps and had horrid discharge pouring out of me...at first it was bloody (very normal) then it slowly turned into a slightly coloured discharge that had a strong smell (not plesant)...I had cramping as it pushed it all out...all of that is very normal...not plesant but not permanent either. Once the pouch is created and he is hooked up he will be fine...this is the akward stage...takes a while but he will feel better as days go by and his 'end of line' heals up. [ more ]
Momma He is having 3 step surgery. So right now just end ileo, no pouch yet. [ more ]
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J-Pouch ForumsHelp! Need advice now!
9 WEEKS OUT STILL HARD
bederyparisbederyparis
Angie Wilson Yep - sugar is not so good. I still eat some sweet stuff as I have a sweet tooth - just do it when I know I'm home so I have RR nearby. Alcohol - I can drink it, but it's extremely dehydrating. When I was young, I could still drink a couple glasses of wine or a couple vodka gimlets socially. Now, I stick to one drink - and really, I just don't drink much at all. My sister - who also has the pouch - also cut way back on drinking. We laugh about it - as in, "oh, to have a glass of wine at the... [ more ]
Pilot Debby You know I think like what most people have said everyone is different. I have found that eating too much sugar can cause you too have a lot more bms so I do not over due it on a lot of sugar. I like everyone else do not eat after dinner at all. You know as soon as you put food or drink in your mouth and you start to chew everything starts to move through your body. So the less you eat the better off you are in the evening. I generally do not eat after 7 in the evening. I do not eat a lot of... [ more ]
Angie Wilson I agree with all above - I've had the j pouch for 29 years. You are really early in the process. What you are going through is not unusual. You have to experiment a lot to see what works for you. Immodium stopped me up - but that doesn't mean it will do so to you. I think it took me a full year to feel like myself - I was 23 at the time. I went back to work pretty quickly and somehow did it - I think it was youth and stubborn determination. I didn't eat much during the day so I wouldn't poop... [ more ]
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J-Pouch ForumsGeneral Discussion
Nighttime leaks
J J9Pouch
deweyj this is actually eye opening to this old jpoucher. in the past i never identified pouchitis with nighttime incontinence. but two months ago i began to have routine nighttime incontinence and i couldn't figure what the hell was going on. i mean i have had incontinence periodically but it was episodic not never ending and this was happening for 2 weeks, i finally decided to try some flagyl and bam, it stopped immediately. as my doc and i discussed over my recent dilation pouchoscopy (cooler... [ more ]
Jan Dollar Other probiotics others have had some success with are Culturelle, PB-8, Align, Florastor. I've tried most of those without much improvement in function. The amount of probiotic you get in most any yogurt is miniscule in comparison to a supplement. Imodium (loperamide) is used frequently as a maintenance treatment for high output. However, if this is pouchitis, it probably won't help much. The fact that you are experiencing new symptoms points to pouchitis. Jan [ more ]
Scott F VSL #3 DS is a potent-but-expensive probiiotic that has been shown to help prevent pouchitis. The DS (double strength) is prescription-only. Lomotil is prescription-only, but Imodium is OTC. [ more ]
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J-Pouch ForumsGeneral Discussion
Life expectancy of a Jpouch?
M Momma
deweyj class of 86 too! Michael i was 23 as well. are we jpouch twins? ha. momma, i have a friend who had her one step done by Harris, in NJ right? i hear he only does one steps, unless there are complications during surgery that preclude it. mt Sinai is a fine hospital. with his dad as an experienced jpoucher, with the caveat that we can travel different paths, he should be fine. i did see your recent post about mucosal discharge. i agree with Spooky, i think every organ in our body will be less... [ more ]
Momma Dr. Bauer and Dr. Gorfine are great. Dr. Harris, who used to be in that same office, did my husband's surgery. We went with Dr. Khaitov who trained under Dr. Harris. [ more ]
mgmt10 Glad to hear it went well. He's in good hands there. I met with Dr. Bauer over at Mt Sinai but then ended up in Philly for my procedure. Hope he has a smooth recovery. [ more ]
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J-Pouch ForumsFAP Forum
Ileostomy take down soon
JL Julie Levins
Angie Wilson I am new to the forum - did no one even answer your question? Let me know. I had my surgery at age 23. I am now 52. Yes, it does get better and you can live a "normal" life. What I did when I was younger was not eat a lot during the day at school (I was a teacher at that time). I also found bathrooms that were private in the school if I could. It took time, but I learned to get through the school day without going more than maybe twice. Then I ate a lot at night and pooped a lot at night to... [ more ]
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J-Pouch ForumsFAP Forum
FAP surgery concerns
R rhinoslillady
Angie Wilson Hang in there!! Have had j pouch 29 years - didn't like the ostomy - but yes, I agree with whoever above said - it was nice not to have to deal with frequent poops! I have had a few problems with the pouch over the years - mostly as I got older, but I've managed. My sister and dad also have pouch and they too have had some problems, but again, we have managed and I am now 52, sister is 46, father is 78. I hope that gives you some hope! [ more ]
coreys My son was diagnosed with FAP at 17, had his colon removed then with no issues. In October 2014, his rectum was getting polys with low grade dysplasia so he had to have his rectum removed and a temporary ileostomy for 3 months before his take down surgery. In the beginning it was rough because he would have leaks at night until he learned how to avoid that. He is also 20 years old so he was pretty self conscience about it. His ostomy nurse was fantastic. He had his take down surgery in April... [ more ]
bobbypins I had an ileostomy for three months about 25 yrs ago. I thought that I would be freaked out also but it kind of reminded of a tongue so it wasnt so bad. My biggest issues were the seal around the ostomy for the bag would leak and intense itching. One thing I would recommend is making sure the equipment is replaced often. I had a clip give out in public with a full bag! Hopefully ostomies are more user friendly nowadays. [ more ]
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J-Pouch ForumsHelp! Need advice now!
J Pouch Advancement
B Brewbirds
Angie Wilson I am new to this forum and I can't believe as I scroll through the questions asked with zero replies. I don't get it. Surely this sight pays someone to answer questions. I need to check into that. I don't have an answer for you - I've had j pouch for 29 years. Had ups and downs and problems, but as of now, it's working. I wish I could help and I hope you find an answer. I think I will post a question regarding unanswered questions! [ more ]
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J-Pouch ForumsHelp! Need advice now!
J pouch post op surgery
L liagraf
Angie Wilson had mine done 29 years ago - yep - went through all kinds of stuff and it's probably "normal" - do not hesitate to go to dr. or ER if you get scared. It does get better, but it took my body about a year to adjust in full. hang in there. [ more ]
thumprhare What color is the blood and how much? Are you feeling better? If not get seen ....just for a look see especially if it is worse then jus after take down. [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-pouch deletion of Energy/Exhaustion
MS Mary Schneider
Angie Wilson Karen - I thought of one more thing - my sister also has a pouch - she went through a period where she was really anemic - had to even get blood transfusions. She is doing great now. Have you had your blood tested to be sure you are not anemic? Just a thought. She is 46 and has a lot of energy now, but went through a period where she was barely hanging on. So there is hope. [ more ]
Angie Wilson Hey - oh yes, I understand. I've had the j pouch for 29 years. I struggle with fatigue a lot. Early on, I did really well with it. Then, somewhere around 15 year in, I got so tired so easily. Yep - eat - and poop - eat and poop. It's exhausting. Advice: I don't know your specific situation - your age, if you are working, etc. - all of those are factors. I eventually quit my job about 7 years ago. I just couldn't do it anymore - I was a teacher and counselor for 23 years and I so wanted to... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Salt
BA Bill A
Angie Wilson Yep - went through all that - I drink a lot of propel now. Work it out with your docs - my father also has a j pouch and high BP. He is 78 - has had pouch for about 30 years. They worked it out. I think he has to have the electrolytes - sodium being one of them - so they had to put him on BP meds. So far, I have not had high BP, but I'm 52 and it certainly could become an issue. I agree with everyone above - I think no matter how much I try to drink, on some level we are probably often a bit... [ more ]
skn69 Funny how we 'adapt' to this new 'normal'...stay lucid when others would blink out. I still see 'stars' a lot...get the dizzies, the light headedness, the sudden 'need to sit down Now!' feeling (especially hot days in crowded subways and buses). I was never a salt eater (mom had ediopatic adema (sp?) so we were all on low salt/diuretic diet) and I continued until I found this site and realized that yes, we need more salt. I never pass out completely but tend to wilt a lot. Sharon [ more ]
Jan Dollar Yes, definitely. I think many of us tend toward chronic, subclinical dehydration. All is OK unless something happens like pouchitis or other illness, or even a hot day with moderate activity. You can go from doing fine to bottoming out your BP pretty quick. I got some virus or something and the next thing I knew I was in the ER with 2 liters of saline running in over 15 minutes. They were rather perplexed that I was as coherant as I was. I guess my brain was used to being dry... Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
2 weeks post-op/ 30+ BMs a day
A Aylaganz
Angie Wilson Hi -been there and it is so frightening. I had my j pouch done almost 30 years ago! I went through all kinds of things. When I had it done, the doc had us take the Metamucil with a tiny amount of water - like a scoop with 2 tablespoons water. I am just double checking that you are doing it this way. Be sure you are drinking - possibly propel or gaterade or something like that to keep you hydrated - even if it goes through you. If you do start to feel really weak, go to ER and they will put... [ more ]
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J-Pouch ForumsK-Pouch Korner
Suspected SIBO
B Bodoni
JLH i just posted, on another thread, that to many on this forum i sound like a late night informational about SIBO and the benefits of diet. so here it is again: the lowFODMAP diet might be difficult for some to get on, but it turned my life around. lots of info on it,--look at kate scarlata's website, monash u. plus monash u. has an app that is invaluable. it's an elimination diet, not a life-long one. beats meds anyday! jlh [ more ]
Bodoni Some doctors don't perform the test. They treat the symptoms. Usually Cipro and or Flagyl. The test is called a Hydrogen Breath test. The patient fasts for 12 hours and goes to the hospital and breathes into some kind of ballon. Maybe every 15 minutes for a couple of hours. ( This is just a rough idea. ) The test is not always accurate. So, you can see why I referred to my condition as suspected SBIO. You are right, some find that diet can give good results. [ more ]
RJG-Ross I hope people respond to this since I was about to post a question about SIBO also... But why suspected SIBO and not diagnostic of SIBO? I wonder if it is not better to first change diet before taking medication and seeing what happens with SIBO symptoms. I removed all wheat products almost 2 years ago and, aside from losing a lot of weight, I also removed most of my digestive issues (pouchitis) and allergic reactions, including basophilia (high levels of the immunoglobins (white blood... [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Question About Fistula
C CeeeeCeeee
Former Member A dental sinus should resolve following a successful root treatment. I don't think it is likely to be in any way linked to GI disease as it is infective not inflammatory in origin. Root canal treatment is not always successful though there are still options if it has not worked. A re-root treatment may be all that is required (it may simply be that a canal was missed first time round - upper molars often have an extra canal (the MB2) though to improve success rates a re-treatment may be... [ more ]
Jan Dollar I suppose anything is possible, but I've never heard of a tooth root being part of the GI mucosa. I think this is more in line with "stuff happens." Even in the general population this sort of thing happens. With the abscess going that far, it may be too far gone. Hope that's not the case. Jan [ more ]
Scott F "No" was probably too strong a response on their part, though it sure might be unrelated to IBD. If you have Crohn's now (rather than UC), any part of the GI tract, including the mouth, can be affected, and fistulae can develop in the mouth. Good luck - I hope it heals up soon. [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
JPouch Reversal
Animal LoverAnimal Lover
TeresaLG Hi Bill. I didn't explain myself very well. While I do have the anemia and vitamin issues, I can deal with that stuff. I've been getting shots and infusions for years. I'm not looking for a cure for that. As far as the pain, I just had a scope exam and the pouch looks pretty good except for a couple of ulcers. I've had years of pouchitis and know what that feels like too and can deal with that. This pain is different and so so much worse. I live in NJ close to NYC so I may see if I can find... [ more ]
BillV Teresa, I’m sorry to hear about the problems you are having with your BCIR and that you are not in the majority who have had good outcomes. I see that you are new to this group and encourage you to sort through posts of others on this forum for suggestions that might improve your situation short of having more surgery. Some of the j pouch posts might be helpful, too. Other than pouchitis shortly after surgery (while pouch was expanding to its full size) and two minor blockages unrelated to... [ more ]
TeresaLG Hi Richard. I'm 48 and I also want my life back. At first I had a j-pouch which didn't function well at all. Now I've had the BCIR and I just want my life back with no more inflammation. Are you having any issues with the ileostomy? Teresa [ more ]
See all 6 replies...
J-Pouch ForumsFAP Forum
A small intro :)
LeahDLeahD
Angie Wilson Good for you to have a great attitude. I've had my j pouch since 1987. I'm 52 now! Yikes. It's good you have your mom as an example. Your positive attitude is going to be key . Yep, I got down to about 90 pounds back then - I'm 5.6. People thought I was anorexic who didn't know what was going on. I got to drink lots of milkshakes and stuff that year. I now weigh about 125 and that's been pretty consistent through the years. You go girl! [ more ]
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J-Pouch ForumsOstomy & Skin
What happens after J pouch diversion?
LORI726LORI726
Mysticobra I just got two pairs of men's underwear from OS... I can tell they will not help as you said it looks like it will not support the bag at all. It's just a low pocket that goes along the whole front of the underwear. I thought it may have a actual pocket on one side or the other to stuff the bag in. Generic pockets I am gonna send em back for that price. Besides my wife bought medium. I am so skinny the smalls I wear are almost too big. So I know... Even though my wife insists I try them... [ more ]
TE Marie I understand Lori. I have fibromyalgia and when I have to wear a belt hooked to my bag or pants that mess with my bag it drives me nuts. I have a hard time with the plastic bag against my skin too. I bought some bag covers from someone on etsy. There are several folks there that make them. The best one I have is made out of a light flannel material. They cost is approximately $10. Lot cheaper than $25 for a pair of undies from Ostomy Secrets. I learned that those with fibro feel the same... [ more ]
LORI726 I am already wearing the crazy expensive ostomy secrets underwear and still feel the bag hanging....grrrr. Don't know why I am having such issues with this. Will keep trying new things and looking at the possible options. Thanks again everyone. I am glad you aren't' wearing grandmas Richard...hahaha [ more ]
See all 16 replies...
J-Pouch ForumsGeneral Discussion
been on cipro for 3-4 months, now slipping
dgtracydgtracy
palm55152 what would i do without you--i can never thank you enough. i called my dr and he will have an rx ready for me to pick up on monday for percocet. i think you have been right all along. not eating much bread and eating some salads. this group has been so amazing for me ty [ more ]
Jan Dollar It sounds like your pressure/pain is related to gut spasm/cramping. Opiates would improve this. Acetominophen or NSAIDs not so much. Jan [ more ]
palm55152 wow what a huge help to me you people are.. i am so happy to take your advice and at least have some hope. as jan told me yesterday i no longer eat carbs but fruit and salad. now one more question i experience pressure (is this pain) and want to stay in the bathroom. when i take a pain pill i feel better is this pressure really pain?? going to space out my vits ty all so so much [ more ]
See all 31 replies...
J-Pouch ForumsGeneral Discussion
Diet?cleans?
U UjohnjC
skn69 I've done a lot of 24-72hr cleanses on nothing but fruits, fresh juices and veggie broths...they are very effective if you just want to clear out your system...I don't use them for any other reason...but I need to warn you...you will spend a great deal of time in the washroom...as a k poucher it is bearable but as a j poucher you may find that you need to sleep there! At the first sign of severe cramping, pain or any other unusual problems please stop...if you are not used to it then you... [ more ]
Spooky Basically, we all have different food tolerances. You are not yet sure of your own tolerances, since you say you haven't tried too many vegetables or fruits since takedown. I'm not discouraging you from doing the cleanse, but considering that you don't know how you'll react, keep in mind that in general, eating a large amount of raw vegetables and fruits may cause excess gas and bloating. Generally, fibrous vegetables and fruits are harder to digest, and roughage heavy diets can increase the... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Sore bum
U UjohnjC
Former Member I find ilex protectant paste is by far the best product to relieve and prevent a sore bum, what is more commonly referred to as butt burn www.ilexhealthproducts.com/usd/products.asp?cat=1 [ more ]
Steve Aneiro You need to use baby wipes when you clean your backside; and then apply Analpharm 1% ointment. Analpram is a perscription ointment that also contains an Praximine, and anastetic (generics for Analphram work well also). You need to do this every time you go to the bathroom. It will get better in a couple weeks. It took me years to figure this out. Good luck! http://www.drugs.com/mtm/analpram-hc.html [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
digestion problems, stomach pain, gas, belching...help!
fqfq
Charlie cbnice@verizon.net ❤️
Healthyme Hi Nikiki, You should have to try this Digestic by Mimonis which is good for constipation problems. For sure you can tolerate much carbonation now. I have tried it with me and I can assure it to you. [ more ]
JLH Fq i agree with the suggestions and add to the one about small intestine bacteria overgrowth, SIBO. Look at the lowFODMAP diet. Many of the suggested 'no' foods are on it. Good luck. [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
NSAID induced pouchitis??
dgtracydgtracy
Jan Dollar Maybe a month or two. The drug is out of your system sooner, but it takes time for the damage to heal. The length of time you were on the NSAIDs matters the most, as the longer the treatment time, the more damage there is to repair. I still take NSAIDs from time to time, but limit myself to two weeks maximum. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Reversal Question
AllyKatAllyKat
dgtracy I think the amt that you lose is pretty random from person to person, depending on how well you do. my first surgery i lost a good 30 35 pounds. after my second reversal i lost more like 10-15ish. i was doing much better my second go round though [ more ]
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J-Pouch ForumsGeneral Discussion
Pouchitis, cuffitis, bloody mess??? What the heck?
Clever1Clever1
Scott F Pouchitis is most commonly treated with either Cipro or Flagyl. People vary in whether one or the other is more effective and/or causes more side effects. There are a number of other antibiotics that are used, including Levaquin (like Cipro), Tindamax, Xifaxan (expensive!) and a few others. If you can find several that work for you, rotating them every 2-3 weeks is a fine idea, to try to prevent any one of them from losing efficacy. [ more ]
Clever1 Is there a "best" choice of antibiotic for pouchitis? and is it wise to switch it up to help with the resistants issue? [ more ]
Scott F Diversion pouchitis is pouchitis in a pouch from which the fecal stream has been diverted into an ileostomy. It's ironically caused by the lack of "nourishment" of the pouch mucosa by the fecal stream. It does not predict trouble after takedown. It's always better to be on fewer medications, all things being equal. It's also always better not to feel ill. So I choose antibiotics over feeling crappy. Some choose otherwise. Frequent or prolonged antibiotic use carries two negatives: 1) side... [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Dehydration/emptying pouch
KD Kate Deaken
Scott F A small amount of sugar (glucose) turns out to be what increases the water absorption of ORS. If you mix up the solution yourself you could control the amount of sugar, and keep it lower than something like pedialyte, but eliminating the sugar entirely would be an error. [ more ]
drone3 I have never been able to drink those electrolyte drinks they cause my pouchitis to flare up, i think its the sugars. Any other non sugar suggestions? [ more ]
Scott F I'm a big fan of water for hydration, but it really is critical that you not stubbornly limit yourself to water if it's not working adequately. Dehydration is very, very bad for you. [ more ]
See all 8 replies...
J-Pouch ForumsPouchitis
Anyone on cipro/flagyl long term for pouchitis with no issues?
J jeane
palm55152 this group has been very helpful to me.. my dr now put me on c/f i am away on vacation. should have percocet instead of hydrocodone. so far no need for nausea med. but feel tired and not much like eating except for bread/crackers. has anyone had bad constipation from this?? [ more ]
Jan Dollar Quite true Scott. I was just wondering if there might be some undiagnosed IBD, since pouchitis is also unusual in those without IBD. Of course, another thought is small bowel C. difficile infection (could mimic pouchitis and cause bleeding). Jan [ more ]
palm55152 ok thanks again I had colon ca at the age of 40 am now 70 battle is never over but I am so happy I have found all of you--sure does help--except for the pain lol [ more ]
See all 30 replies...
J-Pouch ForumsOstomy & Skin
Question
MysticobraMysticobra
Mysticobra Thank you. I can go 4 to five days without a change but I am gonna do a few 4 day changes just to look at it and see how the healing is coming along. Also to take pics for the surgeon to see. I don't want to change bags in the office. I will be in a hurry and when I am I will leak or something. The skin is not really irritated per say. I can feel it but as you can see in the pic it's just pulled away. I will make sure it's nice and clean before I put the wafer on. I really don't have powder... [ more ]
Lambiepie Richard, glad to hear you are adjusting well! My understanding is that you only use powder if you're having a skin issue. Don't forget to put skin barrier liquid over the powder and always end with the liquid, not powder. Also, change more often if skin around stoma is irritated or broken down; change less often if skin under barrier is irritated (because you don't want to be ripping tape off irritated skin.) In January, I will have had my perm ileo for a year and I am still discovering what... [ more ]
Mysticobra Thanks Caty. I don't think I will worry too much about it now then. I use the Hollister soft wafer. I find them very comfortable and hardly noticeable. I think by the time it heals I won't or I will forget I m even wearing it. Right now I feel where it is bit tender. That's all. I talked to the surgeon about it but she was not too concerned as it is as you can see not all irritated and red or anything. So it's good to know it will be OK. I have to give it time. So far I am happy with my... [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
1 BM is not rainbows and butterflies
L Lis5191
Scott F It's important to distinguish between problems that prevent stool from getting to the pouch vs. problems with emptying a full pouch. The set of problems that can cause one has very little overlap with the set of problems that can cause the other. [ more ]
M2S Hi Lis, I had my takedown surgery Oct 28, 2015, almost 5 weeks ago. I have a similar problem where I have been unable to have a bowel movement on my own since the first week post op. I am currently doing bio feedback. Some days I feel like I see improvement, others I feel the opposite. Until I figure this out, I'm using a 36fr tube I bought on Amazon that has kept the pain away and me out of the hospital. See the link below. It certainly isn't the most comfortable of convenient, but it does... [ more ]
Jan Dollar They can do motility tests that track transit times and showing where hangups are. You may have adhesions that cause obstructions, but you should have a lot of pain with that. They also can do imaging to show structural defects that occur only while emptying, such as twisting or prolapse. This test is called defegram. Hope they get this sorted out soon. Jan [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Prednisone and j pouch
RM Rich M
Scott F Prednisone will reduce inflammation anywhere. It's a terrible drug to treat pouchitis, since unlike with a short course of antibiotics the pouchitis would just about always return. Nevertheless, it's a nice bonus when I'm taking prednisone for other reasons. [ more ]
rachelraven I always feel wonderful on steroids. Wish they didn't have such terrible long term side effects. [ more ]
dgtracy I did not know that prednisone can help with pouchitis. [ more ]
See all 8 replies...

Join Us!

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William J. Johnson
bjohnson@j-pouch.org

Bill Johnson founded the J-Pouch Group in 1997.

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

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