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J-Pouch ForumsHelp! Need advice now!
Barbie Butt Surgery
D desisn00ps
desisn00ps Thanks so much, Sharon. I'm going to Cleveland and Dr. Shen is going to try injecting D50 to help scar the area to close it. Plus, I'm going to keep having the area curetted by the surgeon. Let's see how that goes otherwise maybe a wound vac or God knows what else. I've been having extraintestinal manifestations again and am being told there is IBD in the wound (lovely!)...I'm pretty scared of all this but am really hoping for the best! If anyone has any other thoughts, I would appreciate it! [ more ]
skn69 Desisn, Although it has been over 35yrs I still remember it being difficult to heal shut. They did not suture it completely but left it partially open and draining plus a hemovac to remove all of the accumulating fluids. It was rather uncomfortable and I felt constant pressure and urges. It took +/- 2 full months. I sat on an inflatable ring and used ice packs in the middle of it to reduce the swelling. I still get pressure down there and a sudden feeling of having something in there that... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Gas
J Jodih
Jan Dollar You are doing better than me! Nearly 20 years post op and I NEVER trust a fart! Jan [ more ]
Jodih That's good information to know. Ill give beeno a try. I wondered why they didn't seem to work. The good news though is that im learning to pass gas without messing myself! lol. [ more ]
Jan Dollar Eggs can be gas producing too. Simethicone (the ingredient in all those gas treatment drugs) really does not prevent or "get rid of" gas. It just makes it easier to pass. Your best option is to prevent it from forming. Most intestinal gas is from bacterial action on undigested carbs. You might get some benefit from products like Beano (a digestive enzyme) or even Pepto Bismol (which has antibacterial properties). The good news is that thigs usually improve with time. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
cold hands
U UjohnjC
UjohnjC no fever maybe i am little dehydraded I've had 7 glasses of water today [ more ]
Jan Dollar Could be anemia or dehydration, but if you've had those checked, it could just be your system resources concentrating on healing. You don't have a fever do you? Hormones tend to run amok with healing, inflammation, etc. I've had that problem for years, maybe decades, but my labs are always good. My rheumatologist just chalked it up to secondary idiopathic Raynaud's, which is pretty common. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Newbie... Recovery questions
JennstwinsJennstwins
Jeffsmom Jenn, good luck yo you. I hope everything goes yell and you have a speedy recovery let us know how it goes! [ more ]
Jennstwins Thanks for all the replies. [ more ]
BarbieG I wish you the best of luck! The proms will be a breeze. You have boys! They can help each other. Hire someone to do the birthdays. It's too much work. You will be lucky in a few weeks to be able to go grocery shopping in a motorized cart they loan at the store. But you will be exhausted. Remember your colon is a major organ that does allot to keep you energized & hydrated. Without it you have to have a good diet. Having an ileostomy takes time to get used to. Not just changing it, but... [ more ]
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J-Pouch ForumsGeneral Discussion
scd with a pouch? Is Remicade the way ??
M Mandarrr
Mandarrr Oh ya- for all my responders bashing processed foods, get a load of this http://www.theguardian.com/lif...-really-in-your-food This article will make you bash your heads with what happens to our "food" behind closed doors. Disgusting. -Amanda *UC- 2/2011 *perforation and colectomy- 7/2011 *j pouch- 5/2013 *crohns- 2/2014 *SCD- 3/10/14 [ more ]
Mandarrr Thank you, Jan. Voice of reason I can be so damn stubborn. I am on a chat group for diet and they have other means of medicating, like LDN. My doc won't write me a script as he's not confident in its ability to help with my disease. The problem with LDN and SCD is there's not enough studies on them to give them any credit in the western world of pill popping big pharma and surgeries. Who can you trust ?? -Amanda *UC- 2/2011 *perforation and colectomy- 7/2011 *j pouch- 5/2013 *crohns- 2/2014... [ more ]
Mandarrr Thanks for all your responses everyone. The trouble is not so much the diet itself. Through it, I have discovered many problematic foods. I like to eat scd because I believe in scd. And I feel better doing so. I don't run for the bathroom and strain all day long. I can go a couple hours before I need to poo most days, without straining unless I'm flaring. I do poop 10+times/day and many of those at night no matter what I do. I haven't eaten hardly any processed foods since becoming ill, and... [ more ]
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J-Pouch ForumsGeneral Discussion
How long can a disconnected jpouch stay in safely?
PouchomarxPouchomarx
dtmack Poucho, You and i have obviously walked a similar path. Just wanted to update you on my progress. Today, all tests were perfect. The pouch repair Dr. Dietz completed for me worked. My take down is this Monday. Guess i will find out in 4 days how well my rested pouch is going to work. Will update Derek [ more ]
Pouchomarx i expel mucous about every other day so i can hold it. So far sphincter control is ok.. [ more ]
Jan Dollar Like you were told, as long as necessary and as long as you don't develop other problems. The only real issue is sphincter weakness from lack of use over time. But, it is not a given and not permanent, unless they are damaged somehow. I have heard of people going from ostomy to funtioning j-pouch up to 20 years later. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Throwing up and Less Output
T tango9
Spooky A gastrointestinal virus usually lasts 1 to 3 days but can be up to a week. I have noticed that since having my colon removed, it takes longer for my system to "normalize" again after having such an illness, so sometimes I might feel off for about 1-2 weeks. Given that you are still very close out from your surgery, though, I would keep a closer eye on things. Going to the hospital sucks (believe me, I've ridden out partial obstructions at home because I loathe the ER so much) but if you're... [ more ]
tango9 How long does a virus like that usually last? [ more ]
Spooky I would worry about obstruction as well given that you are only a few weeks out from surgery. But Jan is absolutely right, this could also be a gastrointestinal virus. There is some overlap in the symptoms and it's not always easy to tell the difference right away. But, if you develop cramping that comes in waves or you happen to go more than 8 hours without a BM, this is almost certainly an obstruction and it would be best to call your surgeon or head to the ER. [ more ]
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J-Pouch ForumsGeneral Discussion
Hi, anyone have a "partial" lazy rectum area fixed with J-Pouch?
VancouverGirlVancouverGirl
Jan Dollar Yes, I have a j-pouch (for refractory UC) Since 1995. I have about 1-2cm of retained rectal tissue. The j-pouch feels much like a rectum. I get a sensation of fullness when I need to empty it, and some urgency if I put it off for too many hours. I only have trouble emptying if I have issues with pouchitis (which is primarily associated with tjose who have IBD). I do not have solid stools, and my output ranges from watery to an applesauce consistency. I am fully continent. Frequency is 8-12... [ more ]
VancouverGirl Originally Posted by Jan Dollar: Most of us have a j-pouch for inflammatory bowel disease or cancer, but there have been a few with colonic inertia. I suppose your docs figured that your rectum was still functioning or they would not have left it in. That said, a j-pouch may work for you, but understand that it will not be the same as a healthy rectum and colon. The goal is to be functional, not perfect. But, I don't think you are looking for perfection. Jan Hi Jan, I'm Teresa. Ahh, okay... [ more ]
Jan Dollar Most of us have a j-pouch for inflammatory bowel disease or cancer, but there have been a few with colonic inertia. I suppose your docs figured that your rectum was still functioning or they would not have left it in. That said, a j-pouch may work for you, but understand that it will not be the same as a healthy rectum and colon. The goal is to be functional, not perfect. But, I don't think you are looking for perfection. Jan [ more ]
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J-Pouch ForumsPouchitis
Pouchitis and ulcers in pouch
A Allin
scselle CTBarrister, Thank you for posting an actually picture on here. This is my first post to this chat and I do not have a j-pouch, but a BCIR. I have photo after photo from scopes that not just one, but many doctors have done and those pictures look very much like yours. The only difference is that my ulcers are puffier looking and are bleeding. I had 4 blood transfusions last year, and 3 pint of blood last Friday. My hemoglobin was 5.8 and the iron is bottomed out. They will start a series of... [ more ]
ks1905 Thanks for the replies. I've discussed SIBO in the past with my GI, my next appointment I will ask for the test. I wouldn't be surprised if it is diet related. Since this past weekend I have cut out all carbs and my gas has subsided. The other thing is that I get Thrush really easy with most Steroids and Antibiotics. I now take Diflucan anytime I go on those types of medications to prevent the Thrush. I was the last procedure of the day on Friday and the GI is on vacation all this week so I... [ more ]
CTBarrister ks1905, That image I attached showed ulcers in the pouch which were taken in 2012. I also had ulcers above the pouch but not quite as large. I have carried a questionable for Crohns diagnosis since about 2007, but my GI docs have suspected the inflammation above the pouch is due to "backwash stool" caused by fecal stasis, resulting in SIBO, based on the pattern of inflammation. I changed my diet after that scope and my subsequent scopes have shown less inflammation, this likely in part... [ more ]
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J-Pouch ForumsGeneral Discussion
PTT blood test high?
dcpropilotdcpropilot
dcpropilot Thanks for your response. I am waiting to hear from back from the hematologist. Not much fun. [ more ]
Jan Dollar The only thing I can think of as being gut related is malabsorbtion of vitamin K, which is important for clotting factors. The colon absorbs some of it, so the lack of a colon, along with a possibility of poor absorbtion could lead to vitamin K deficiency and clotting dysfunction. It is pretty rare though. Most of our vitamin K is made by bacteria in the gut. http://www.merckmanuals.com/pr...icity/vitamin_k.html Further testing is necessary to rule out underlying diseases, like lupus or... [ more ]
Scott F None of those things seem very likely to elevate your PTT. If it persists you'll need someone, perhaps a hematologist, to help you figure it out. [ more ]
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J-Pouch ForumsGeneral Discussion
Pretakedown cuffitis?
SolomonSealSolomonSeal
Jan Dollar Not really, other than seeing improvement when the fecal streamis restored. If it is bad sometimes short chain fatty acid enemas can help. If it is regular cuffitis, you can use Canasa or hydrocortisone suppositories. Jan [ more ]
SolomonSeal Thank you for the response. I've not been able to find much info on diversionary symptoms. Other than seeing improvement from takedown, is there any other way to distinguish diversion from IBD caused pouchitis/cuffitis? [ more ]
Jan Dollar Or, you can look at it this way. Wringing your hands with worry will not change the outcome. It will only increase your stress hormones and make things worse. So, you may as well assume that this is diversionary and will improve with take-down. You have just as much chance of that being true as a worst case scenario, perhaps more. We all hope for a perfect surgical outcome with no complications. We don't always get what we want. If you hope for the best, while preparing for the worst you... [ more ]
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J-Pouch ForumsGeneral Discussion
Dilated last week and now trouble emptying
K ks1905
ks1905 Thank you for the replies. My emptying is getting better since 2 days ago. I went back to twice a day with flagyl and 1 Entocort in the morning, I'm also using the Calmoseptine ointment pretty liberally and adding Miralax to my coffee. I was just surprised by the emptying problem after the dilation because my other dilations everything worked so much better afterwards. My strictures aren't that bad but the GI keeps mentioning this home self-dilation kit, which isn't that appealing to me. But... [ more ]
mgmt10 Perhaps you have some inflammation/swelling there from the dilation itself....especially if he did it twice. Hopefully it will get better in the coming days. I do recall that happening to me as well after one of my dilations but it resolved itself. [ more ]
ks1905 Thanks Grace. I forgot to mention that I have (2) ulcers near the bottom of my pouch and I have some burning pain now when emptying so I'm guessing it is the irritation that you mentioning....or at least I'm hoping it is that. I recently tapered off of entocort about 2 weeks ago. Maybe the GI will put me back on it when he gets back on Monday. ugh...it messes up my sleep schedule. [ more ]
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J-Pouch ForumsGeneral Discussion
Attention Cleveland Clinic 90% surgery success rate poster."
JeffsmomJeffsmom
UjohnjC jeffsmom i to have a smaller small int so they gave me a s-pouch couldn't stretch it enough for jpouch [ more ]
Jeffsmom Derek, thank you. And good luck and best wishes to you as well. Your journey sounds long and painful as well. lots of hugs and prayers to you too! [ more ]
dtmack I have been following your sons journey. I truly hope you both get some good news and some peace. Prayers to you both. Derek. [ more ]
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J-Pouch ForumsK-Pouch Korner
Sticky output
B Bodoni
skn69 That's it...makes a thick, sticky paste that sticks to the inside of the tube (and the toilet bowl) and is nearly impossible to clear out. 2 choices, stop taking the med or stop eating cheese! Sharon [ more ]
Bodoni Thanks Sharon, You may be right. I do eat a lot of cheese. And I do take a med for Cholesterol. I suppose you could say that is a fat capturing drug. [ more ]
skn69 Bodoni, Certain fats will do that to me. Cheeses, lamb chops, pizzas, cheese cake,...anything that has very high fat or if you take Alli the fat capturing drug will do it too. It seperates the fat molecules and encapsulates them so that they don't fix in with the stool. Is it orangish or yellowish in colour (tmi?)...that is usually the colour of the fat. Just try a light or fat free diet for a few days to see if it has an effect on it. There is also something to do with the pancreas or liver... [ more ]
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J-Pouch ForumsGeneral Discussion
Advice on surgery scar
T tango9
ks1905 The plastic surgeon said that he could do a tummy tuck on me and that would fix most of my scar issues. Obviously my insurance company won't cover that ($8,000 surgeon fee) plus other costs; the insurance company will only cover the scar revisions. [ more ]
Spooky I had open surgery. Laproscopy was not an option as my surgery was an emergency. As a result, I now have a very long (about 10 inches) vertical scar down the midline from about 2 inches above my belly button right down to the pubic bone, and an smaller oval shaped scar where I had the stoma. I also have two smaller indentations - which I call bullet holes -- where I had JP drains. The lower part of the vertical scar is keloid and is pinker than the top part, but overall the scar has really... [ more ]
skn69 CT, Wait until you hit Andropause...they will take on a whole new shape! Oval becomes droopy/loopy! Just starting to see what the future holds for mine and it is not pretty... Sharon [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
bowel not waking up after c-section
armywifearmywife
jolya please tell me about the complete detail of c section. i dnt know about that? [ more ]
courtneyjade I have had a j pouch Since 2007 and I had my daughter in 2012. I had a c section and felt fine the first and second day but woke in the night projectile vomiting. My bowels were paralyzed and I had to have a tube put in my nose that went down my throat and into my stomach and pumped out green bile for 4 days. It was only supposed to be 24 hours, it was horrible. My bowels did not start working until the 9th day and I was allowed to try to eat for the first time on the 9th day. I was released... [ more ]
jolya congratulation on your delivery!!!! i am interested to follow your again recovery experienced from c- section. and please give me a suggestion that my tube tied in 2010.now i want a cute baby what is best option for me IVF or tubal reversal surgery me also trouble about these tow procedure [ more ]
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J-Pouch ForumsGeneral Discussion
Lomotil
G GraceB
cbarts I take my 2 imodiums and 1 lomotil at the same time when i first wake up in the morning. I've been doing this since 2001 when I had my takedown surgery. Luckily this has always worked for me. I still usually go about 3 to 4 times a day. As far as the weight gain, I too am very thin. I'm 112 lbs and 5'7. I have always been very thin and I have an identical twin sister who is the exact same size as me with no health problems. People always suggest that I'm small because of my health. I hope... [ more ]
Scott F Imodium has a long half life, averaging over 10 hours, so it's eay to overshoot. Try to be patient with assessing the adjustments if you can. [ more ]
GraceB Yes Scott I did that the other night before I went to bed I still had to get up twice but it was better than getting up a few times. I took a Imodium this morning it seemed to help a bit when I got home I started having issues again so I took another Imodium and had lunch Now I will see what happens when I have dinner. by not taking anything I was in the bathroom at least 20 + times a day. So when ever I would eat anything I was in the bathroom half hour after. I even tried putting 1/2 tsp... [ more ]
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J-Pouch ForumsGeneral Discussion
pooping water
U UjohnjC
dgloria5 Never eat anything sugar free you will be going liquid crazy, like Scott wrote check it out. In fine print on the lable it has written warning can cause diehrea. [ more ]
Scott F If the candy was sweetened with one of the sugar alcohols (sorbitol or mannitol, usually) then that might have been responsible. Sometimes, though, it just happens. Sometimes we get ordinary GI bugs ("stomach flu") that give us diarrhea for a day or six. [ more ]
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J-Pouch ForumsGeneral Discussion
vomit
U UjohnjC
UjohnjC went to er was there 2 hours was 35 people ahead of me still so i left feeling little better dr out of town till wed haven't taken any comital oh imodium today just drinking water and had a yogurt not sure what to do [ more ]
CTBarrister A knotted up sensation coupled with watery BMs is a possible sign of a partial blockage. If these symptoms persist I would call Dr. and/or go to ER. I had blockages in the weeks after takedown - you are very prone due to possible adhesions and scar tissue and/or residual surgical swelling. I don't know what you have been doing diet-wise but I would not be eating big meals. Take it easy until you are a couple months out. People start feeling good and they get aggressive with their diet - and... [ more ]
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J-Pouch ForumsGeneral Discussion
New member (Low iron)
LincslassieLincslassie
Lincslassie Thanks everybody,I'm starting on liquid iron and will check it out to try and get hold of the chewable vitamin too,they advised me to take the iron with orange juice. Jane [ more ]
marz I agree with all above information regarding low ferritin. I also receive ferraheme infustions twice a year from a hematologist. It is very important to keep the ferritin levels above 100 (according to my dr.) I also wanted to mention a chewable vitamin I have been taking for 2 years for people with absorption problems. It is called forvia and available at http://www.inovera.com/forvia/ It has seemed to make a difference for me as far as keeping my ferritin levels at a decent level LONGER... [ more ]
Lincslassie I'm in the uk,I have an ibd/gastro team they sd to speak to them after the weekend I have a clinic apt in 3 weeks which seems a long time to me it's not like it's just going to get better on its own is it ? [ more ]
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J-Pouch ForumsOstomy & Skin
calcuim supplments that don't cause butt burn and diarhea
Libby1Libby1
Ljz I just had an infusion of Reclast. This is given once a year for osteoporosis and once every 2 years for osteopeni. It was recommended by my rheumatologist since I was already having major acid reflux, and the weekly dose of Fosamax I had used previously causes acid reflux and she didn't want to add to what I was having. Seemed like great option though they say you may feel bad for one day, though I did not have any issues. BTW, I needed the supplement due to being on 40 mg Prednisone for... [ more ]
DG78 You might try Osteo-K for a calcium supplement. Debbie [ more ]
liz11 are you under the care of an endocrinologist? There are lots of treatment options for osteoporsis: actonel and other biphosponates, also Forteo. Its a daily injection. Have you tried chewable calcium tabs? [ more ]
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J-Pouch ForumsGeneral Discussion
Had my Surgery
Andy1993Andy1993
Jeffsmom Andy, speaking from experience now. Stay ahead of the pain. Don't worry about the narcotics. As long as you are taking the,may perscribed you won't have a problem. Jeffrey has been on dialodid since Sept. Addiction is the least of your problems. You can't heal if you are in pain. I think Jeffrey was on all that stuff for about 8 weeks. He slowly got off of them. Because he is autistic, he may have had a harder time with pain management. He has sensory issues. But one day at a time. Give... [ more ]
SolomonSeal Hang in there Andy. I'm you're age (21) and know just how hard it is... expect all your muscles to be sore from compensating for your abdomen. And other muscles to be sore for compensating for compensatory muscles! The best thing for me was two things: A)walking. A lot. B) Family. They were there to make the pain more bearable. They also kept my musclesrelaxed with nice massages. Best of luck, buddy! [ more ]
Andy1993 I am feeling better today a head of the pain now so I am going to stay a head for a few days then try and ween off again. I had to take doubl the dose what my doc prescribed to finally kick it back. For some reason the bleed I had is really setting me back but just gotta take one day at a time and I am not worried about becoming dependent on the Hydromorph so it makes it easier to take it [ more ]
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J-Pouch ForumsGeneral Discussion
20+ bm
U UjohnjC
UjohnjC hope scope goes well was having a good day then got runs must of been sugar free candy i ate lesson learned [ more ]
mary beth So sorry to hear that John. Could it be your diet? Lily had a great day yesterday, from 24 to 10. Today 8 so far in 12 hours but I think after the good day yesterday she thinks she can eat any thing and I think that´s why she´s up again today. She ate a lot of things she probably shouldnt have, she doesn´t listen to her me! The other day I started giving her 2 Lomotil 4 times a day which is the max dose, maybe that´s why the improvement but she also snacked all day instead of eating just 3... [ more ]
UjohnjC mary beth well back up to 22 yesterday very frustrating [ more ]
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J-Pouch ForumsPouchitis
Keflex (Cephalexin) for pouchitis
B babygoose
CTBarrister Keflex is a second tier antibiotic for pouchitis. First tier is cipro, flagyl, xifaxin and augmentin. You could use Levacquin as the "5th starter" in the rotation - but never before or after cipro which is in the same family. That would be the starting rotation, to use a baseball analogy. Also to use a baseball analogy, Keflex is in the bullpen, towards the end. [ more ]
ccanepa456 I have done cipro in combination with keflex and it worked wonders and got me back to a great weight. [ more ]
babygoose Thanks Jan and Scott for replying things have started getting better since last night but I'll definitely keep your suggestions in mind! [ more ]
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J-Pouch ForumsGeneral Discussion
Southern State Hospitals, GI and Surgeons
AllyKatAllyKat
golflady1119 Shands at the University of Florida in Gainesville is an awesome facility!!!! Had my J-Pouch surgery there in Oct and takedown in Jan. I would recommend them to anyone! [ more ]
Jeffsmom Hey folks, I did say that Cleveland was good. I'm did not know that Mayo had a facility down there. Good to know., but overall and in my experience, the healthcare with regular doctors, is not so great. They don't even carry malpractice insurance, which surprised the heck out of me! Chuck, I go to south Florida, delray beach. Jacksonville is too far north for me! Looking forward to getting down there next month if Jeffrey continues to do well and is off the narcotics. dianne [ more ]
Scott F I'm sitting in Mayo Jacksonville right at this moment (visiting my brother after surgery), and I can confirm that it's a first-rate hospital. OTOH I have no idea if they are excellent at J-pouch surgery or experienced at caring for difficult pouches. [ more ]
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J-Pouch ForumsHelp! Need advice now!
So Depressed
Mema 1Mema 1
Jan Dollar They can give the Benadryl IV too. As time goes on, you can take your own antihistamine at home before you leave. Jan [ more ]
CTBarrister If you want a suggestion on a book, I just recently got through reading The Red Sparrow by Jason Matthews. It's a really interesting spy novel, about American and Russian spies who are spying on each other, written by a retired CIA agent who served 33 years overseas, including in Moscow. You will learn more about the intelligence business, from the perspective of those actually out in the field, than just about any other spy novel that is out there. I highly recommend. [ more ]
Mema 1 I have horrible veins, so hope it won't be a concern. I'll just make sure I drink a lot of fluid before going in for treatment. Since the weather is still cold, that will be a concern as well since they don't pop when I'm cold. I'll have them get those hot pads as well. Every person that I have spoken to, that is using remicade, said that they give them two doses of benadryl first and benadryl gives me horrendous butt burn, so I'm dreading just thinking about it. With a little bit of luck I... [ more ]
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J-Pouch ForumsGeneral Discussion
Little nervous going back..
V Virdent
Mysticobra I just work a shift but one thing I make sure I have is some wipes. Invaluable! Just don't stress out going back to work. I was overwhelmed with the welcome backs. Surprised. Richard. [ more ]
Jeffsmom Virulent, it should make no difference. Just pack your supplies and go to work. Just take a bit extra. My dad worked overnights when he was younger and he just packed a bag with him and did what he needed to do. I'm sure it will be difficult going back to work at first and I'm sure exhausting, but you'll make it. [ more ]
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J-Pouch ForumsK-Pouch Korner
.....
Randers.USARanders.USA
skn69 Deleted, I am so terribly sorry for what you are going through. I think that it is our common nightmare to all of us. In 1996 I was a pedestrian, hit on a crosswalk, first by a bike that threw me into oncoming traffic that hit me hard and threw me back onto the bike. The EMT took me strait to neurology ER because I lost consciousness. Turns out that my head was ok but my lower body really suffered. (hips, knees, ankle and unknown to me, abdomen). My pouch was perfectly functional but the... [ more ]
DG78 First let me say I am so sorry and distraught to hear what happened to your pouch! I am so sensitive about the safety of my pouch and valve that I never want anyone messing with it. I can’t imagine how upset I would be if I were in your shoes. My first choice would be to stay with your original surgeon since he’s the one who created your successful pouch and valve. However, if others can suggest a more affordable surgeon who also has a great track record, than perhaps you would be a good... [ more ]
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J-Pouch ForumsGeneral Discussion
Abdominal Pain this late after surgery?
IsolationaryIsolationary
jipalmer I had adhesion removal at the end of January as well. I am still having good days and bad days. Sometimes I feel fine for a few days and then have a day full of pain and gas. Take it easy for a few days and hopefully you will get back to feeling well! [ more ]
Jan Dollar I agree with Scott. It is sort of difficult to compare anything to how things felt before surgery. Base your level of alarm on the severity of the pain and whether it gets better or worse. Plus, if there are other associated symptoms it is more reason for concern. Jan [ more ]
Scott F Everybody has a different idea of what "active" means. Were you doing sit-ups? Olympic weight lifting? (just kidding). In any case, I'd suggest you back off a bit and see what happens. Your belly has been altered, and "normal" anything is apt to feel different. OTOH, if it escalates or gets severe that's a different story. [ more ]
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J-Pouch ForumsGeneral Discussion
To those with thicker output...
rachelravenrachelraven
RWNC Too many carbs, fiber, and my period all cause me to be constipated. I find grape juice and laxatives help in short term but there seems to be a rebound effect where I end up even worse off a day or two later, so have found it is just better to wait it out. I find eating lots of fresh fruit and soft cooked vegetables and cutting down on carbs really helps if you can tolerate them. [ more ]
n/a Grape juice? My favorite variety - red wine, but that's more of a temporary fix. [ more ]
rachelraven Things I've resorted to: drinking a ton of water, few prunes, small Fleets, hot sitz bath relaxes sphincters and things pass, magnesium. [ more ]
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J-Pouch ForumsGeneral Discussion
Frustrated and Scared
MB mary beth
RWNC I understand your frustration! The first couple weeks post take down I had 20+ bowel movements a day, leakage, terrible butt burn, and felt absolutely horrible. None of the medications worked for me; it really just takes time for the body to adapt. Everyone is different but I found for me it was really more important for me to eat frequent small meals versus withholding food as this made my output very runny. This is still the case now. Also when you get into 20+ bowel movements even the... [ more ]
mary beth Thanks again EVERYONE, you have all been so helpful, I really don't know what I'd do without the support and suggestions I get here. Thanks Richard and Liz, I will mention the antispasmodic to her doctor. Torg, good luck with your son, I'll be thinking of you both. Keep me posted. [ more ]
mary beth Thanks for the replies. Liz, she has seen the surgeon and I was hoping he would have done an exam. I asked him about "stretching" but he said it was too soon which I didn't completely understand. He was not my daughter's surgeon but his partner and he kind of blew off our concerns and told us just to be patient. Seems like an exam would have been a good idea to me. Instead he wrote a script for Flagyl which now I kind of regret putting her on. I don't like the "just in case" idea of... [ more ]
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J-Pouch ForumsHelp! Need advice now!
So sick and tired of being sick and tired
MelissaComptonMelissaCompton
Jan Dollar You've done pretty much everything I would have considered. Sadly, it takes 6-12 months to adapt, but most people see some improvement by the 3 month mark. For real "hard cases" sometimes they try Sandostatin to help slow severe diarrhea. http://www.webmd.com/drugs/2/d...in-injection/details Another strategy you might consider, since most of your bowel activity is at night, is to switch things up and eat most of your diet in the late afternoon and evening, instead of during the day. You may... [ more ]
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J-Pouch ForumsK-Pouch Korner
Something new
skn69skn69
skn69 Debbie, Yes, the hip joint slipping out was one of the first signs that I noticed...(other than the not healing part!)...they say that weight bearing exercises help a lot and I think that those years of weight lifting went a long way to keeping things tightly in place. Collagene & silicium are the only things that I know of but there must be others. Gelatin? I guess that lots of proteins, iron and muscle building elements couldn't hurt us. There is also something to be said for those... [ more ]
DG78 I'm glad there's an end in sight for you but please sleep for 3 days straight before you go wait in line over there. Ugh! I'm doing okay but now my right hip ball and socket joint keep slipping out. So painful! Is this an Ehlers-Danlos issue I wonder? I'm going to ask my physical therapist for exercises to help strengthen the muscles, but I wonder if I could take some supplements to strengthen the joint. Debbie [ more ]
skn69 I think that that is the next step Debbie, I used to do them on a regular basis but stopped due to the tatooing effect (yes, here they give them in your butt)...they don't give them in infusions. I will try to see my GP in a couple of weeks when I get a day off (been running to the hospital on Saturdays to visit my French Mom-in-law and haven't had a minute to myself)... I slow down in just over a month and can line-up in front of his office then (no appts with him, just a vast waiting... [ more ]
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J-Pouch ForumsHelp! Need advice now!
thinking about getting surgery for uc
jeremiah johnsonjeremiah johnson
MelissaCompton Originally Posted by jeremiah johnson: i have had uc for 3 years and am thinking about getting the j pouch. i am wondering if someone with a successful surgery that has had there j pouch for a while would talk to me. i would appreciate your time very much I am a little over 4 months takedown and it has been a rollercoaster ride but it is a very personal decision (one I am glad I made) but it is not easy in the beginning [ more ]
ATXGuy I had my first and only UC flair that led to a ruptured bowel last Feb. Emergency surgery for that, and then a J-Pouch created in July, followed by takedown at the end of last October. It's almost five months since takedown, I feel pretty good and for the last few months I've been able to workout. I lost nearly 50 pounds during my first hospital stay (probably could've afforded to lose 20), and the whole process was tough, but I feel pretty great today and, in my early 40s, am probably in... [ more ]
SoccerTAT Yes you will be able to do anything, within reason that is. I play soccer at my university where we practice every day for 2 hours and weightlift HEAVY 3 times a week. With that being said make sure you are healed and take things slow before you do any of that. I took 6 months off before I eased into rehab with light weights and eventually heavier weights. Running was not an issue once I felt up to it and my scars had healed. [ more ]
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J-Pouch ForumsOstomy & Skin
ostomy is almost all liquid, still absorbing nutrients?
dgtracydgtracy
Lambiepie No problem. I had been following your posts about your latest j-pouch adjustment. Hope it's smoother sailing for you by now. [ more ]
dgtracy Apologies Lambie i just saw this pop up again, i had my ostomy reversed again on January 26th. it took awhile but near the end it started to thicken again. [ more ]
Lambiepie Dg, how are you feeling? Has your ostomy output thickened up at all? [ more ]
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J-Pouch ForumsPouchitis
Anitbiotics, Cuffitis, Apthous Ulcers and the effects.
DuffySoFlaDuffySoFla
Scott F I agree with Jan, as I usually do. If you're getting aphthous ulcers in your mouth (and they do hurt like heck!) then oral IBD medication would probably be worth discussing with your doctor. Like CT I'm on antibiotics full time, with good success over a period of years, but that's generally intended for pouchitis that won't stay healed otherwise. [ more ]
DuffySoFla The only thing that seems to have a positive affect on, what is left of, my GI tract, is the antibiotics. They firm me up significantly and reduce the frequency in which I need to use the bathroom. I sleep through the night when I am on a cycle of antibiotics. I have tried both Canasa Suppositories and Anucort Suppositories, they have minimal effect, unless I am not using them for the correct duration. I take Bentyl and Lomotil 3 times a day, but again, as soon as I stop the antibiotics, the... [ more ]
Jan Dollar Even though antibiotics work for you, they may not be addressing the underlying problem of cuffitis, where there is continued UC in the retained rectal cuff. I am wondering if you have tried mesalamine or hydrocortisone suppositories for this, as they are the usual treatment for cuffitis, not antibiotics. Since you also get oral aphthous ulcers, perhaps oral mesalamine is needed, such as sulfasalazine or Pentasa. Of course, you can also get into Imuran, methotrexate, and/or biologics too. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
OBGYNs in NYC who deal with J pouches?
J Jackie1990
Jackie1990 Thank you so much for your recommendation! [ more ]
Gemini-K I am 34 years old, and became pregnant in September while I still had a temporary ostomy. I was referred to a high risk OBGN because I had a J-Pouch (it happened to be temporarily unconnected when I got pregnant). My surgeons at Mount Sinai highly recommended Dr. Joanne Stone. http://www.mountsinai.org/profiles/joanne-stone . I had a great experience with her. She completely understood the complexities of the pregnancy with J-Pouch, and consulted with my surgeons before the c-section. She... [ more ]
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J-Pouch ForumsGeneral Discussion
s pouch
U UjohnjC
Karentree Not quite sure I'm the best person to answer that. When I had this operation back in 1984 I was 19 years old. The surgery was very new. My personal experience wasn't good. I was told at the time "things didn't exactly go as planned" - and after my take down in 1985 - I ended up needing to use a catheter to go to the bathroom. Quite traumatic at the time considering my age. But, hey, they say you're "cured" - so you run with it. Fast forward about 16 years...after years of "using the... [ more ]
UjohnjC hi karen i have s pouch also just had takedown 3/2 how was your first few weeks after takedown? [ more ]
Karentree I have an S pouch. I'm one of the first 25 people to have this "new" operation done in New York City back in 1984. [ more ]
See all 14 replies...
J-Pouch ForumsGeneral Discussion
How much can you drink in a sitting?
IsolationaryIsolationary
Spooky It really varies. With a loop ileo, you'll find that things go straight through you regardless. My output with the loop was always very frequent and very watery. Prior to having the loop I had an end ileo for about 2 years. The output was much thicker and more infrequent. Nobody told me there'd be such a drastic difference! LOL The point is, you do need to drink, even more so with the loop because you are potentially losing water through the ileo. You could keep a bottle with you and sip... [ more ]
Jan Dollar It gets better with time, as your small bowel adapts to absorb more water and take on the role of the colon. But, it takes time; 6-12 months. Even an end ileostomy will eventually adapt to absorb more water. But yes, the key is to sip throughout the day, not slam back large amounts of fluids. This is especially true in the first six months post op while you are adapting. Another suggestion is to not drink too much fliuds with your meals, so that your food will not "flush" out of your gut too... [ more ]
CTBarrister I have a J Pouch, not an ileostomy. However since having a J Pouch I need to drink regularly to stay hydrated. I drink 17 ounces of coffee in the morning with breakfast and then 12 ounces of Red Roobois tea every 2 hours during the day. I always take bottled water with me when on the road. [ more ]
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J-Pouch ForumsGeneral Discussion
thinking about getting surgery for uc
jeremiah johnsonjeremiah johnson
Scott F If you really feel like you need a phone call, let us know (though don't post your phone # in an open forum). Arrangements can be made through a private dialogue. [ more ]
rachelraven I consider mine a success. I had zero issues for 21 years, then developed an abscess/fistula. However, my pouch itself is still looking good. The bottom anastomosis narrows at times, necessitating dilations in the past 2 years, but overall, again, the pouch itself has always looked pretty good and functioned quite well. For twenty years, I was the poster child for excellence after J pouch surgery. [ more ]
TE Marie You have found the right place to ask questions. Something like 95% of j-pouchers don't have problems. This is a good place to ask questions about the surgeries. People generally go to support groups for guidance and after recovery don't frequent groups as often. There are many here who have recovered and lend their support for others that have questions. Ask a question or ten and get your discussion started [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
corned beef
U UjohnjC
Scott F Remember that cabbage can be quite gassy, if that gives you issues. It's a perfect use of Beano. [ more ]
Jan Dollar I just ate my corned beef round dinner. Cooked it in the crock pot. Don't care much for the boiled potaoes/carrots/cabbage, so I roasted red potatoes, baby carrots and onions. We have it every year. No problems, including the Reuben sandwiches and hash from leftovers. Happy St. Pat's! Jan [ more ]
CTBarrister I am not a big fan of corned beef, but I have eaten it and had no problems. Typically I only have it around this time of year. As a kid growing up with UC, I ate it a lot as part of what is called "New England Dinner" - corned beef stewed in a pot with potatoes, carrots, and cabbage, and served with mustard. Funny story about corned beef: Many years ago I visited Schwartz's- the internationally famous purveyor of smoked meat in Montreal. I ordered and ate their famous smoked meat sandwich. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Stabbing pain
J JOHNDUB
msh98991 ❤️
Jan Dollar There is no "time" for adhesions to become apparent. They form within the first few weeks of surgery, but they can cause symptoms at any time. Your intestines are in constant motion and all it takes for them to try to zig when they are tied into a zag position. I doubt that anything you take orally will have any impact one way or the other. But, just know that without a colon, there is no colon to "cleanse." No harm either, just saying... Now, if you are talking about a few days of a partial... [ more ]
rachelraven My pain was more than a decade post op, but my growing belly was the culprit. [ more ]
See all 6 replies...

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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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