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J-Pouch ForumsHelp! Need advice now!
# of BM
M MAS
Bebekspor I was still going about 15-17 times a day at that point. It really is difficult. Katie [ more ]
MicheladelfinaTX You're going to hate me for this answer, but everyone is different. Generally speaking, your pouch is still very new. Keep in mind that our bodies weren't designed to work in this way, and your new system will need time to adapt. I have had my pouch for 7 years and in the beginning it was awful. Now I go about 8 times a day (night included), though you can try to adjust your diet to see if certain foods and behaviors help. You can also check with your doctor about using immodium or lomotil... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Is this normal during recovery?
K krittyd
wsh6745 I had the same trouble and pain that he is describing. When the pain hit, it immediately brought me to tears. For me, they thought for sure the pain was my uterus getting in the way of the pouch but finally over the past 3 weeks or so, the pains are starting to go away. I've had a stretch of 6-7 days without pain and then I will get them back for a day or two and they go away again. I had other people say they experienced the same thing and it just went away at about the 6 month mark, which... [ more ]
Lesandiego I can rarely expel gas on the toilet (if his pain is from gas). I have to lay on my side with knees bent. This helps release gas without releasing stool. Maybe he has cuffitis? [ more ]
krittyd Thanks for your response. Do you know what causes this problem and why the Cipro worked to stop it? What made your Dr. finally put you on Cipro after 6 months? I hope my husband doesn't have to suffer that long! No one should have to go through that! Fortunately, he has a job that he can do most of it from home or we would be in BIG trouble. I will let him know about the yoga poses too. Thanks [ more ]
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J-Pouch ForumsHelp! Need advice now!
Straining for urination & BM's and pain
W wsh6745
TE Marie I'm a woman but can tell you from my experience that at 4 weeks this doesn't sound unlike my experience. I still have usually have a BM whenever I urinate and vice versa and my take down was the end of 2010. In the beginning I would stand up and sit down over the toilet and sit on the toilet and bend over to achieve another BM while there. I learned that if I got up and started walking around I'd be right back there in 5 minutes going again. I'm glad he is going to his doctor as I did have... [ more ]
krittyd Graemek- How were you diagnosed with a long rectal cuff? Are there any plans on another surgery to have it shorten? Your symptoms sound very similar to my husbands. [ more ]
krittyd My husband is going through a similar thing. He had his takedown surgery about 4 weeks ago. At first his recovery was going extremely well but on day 6 things changed dramatically. He has severe pain off and on throughout the day/night and has a very difficult time urinating. He can not urinate without having a BM. He also can not have a BM sitting or squatting, he has to stand up. He finds that if he tries to sit then he has to strain to get even a small amount out and the pain from... [ more ]
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J-Pouch ForumsHelp! Need advice now!
CT enterography
B BrittanyKay
TE Marie Take a big straw with, in case they don't give you one, to drink the barium with. I can't get it down without a straw. Put the straw as far back in your mouth as you can and drinking it will be much easier. I've never found the injection to be too bad, it just makes me feel warm and then like I am peeing my pants, but I'm not. They tell me I'm going to feel this way each time. I've been told by coloned people it causes constipation but no problem for me, it went straight through. As tests go... [ more ]
CTBarrister Mema, The Volumen, while not something I would order during Friday Happy Hour, is not the most vile tasting diagnostic test beverage I have had to drink. They will probably have flavored choices for you like pineapple or coconut. To me the worst part of the MRI and CT Enterographies is when they inject the contrast. It burns. Good luck with your MRI Enterography and let us know how it goes. [ more ]
Mema 1 Sorry to hear that you're not able to get off of the antibiotics. I try to avoid them as much as possible, but if I have to have them then there's no choice. I had a flexible sig today and am having an MRI Enterography a week from tomorrow. Not looking forward to it, I can't stand feeling this way much longer. Am dreading drinking that stuff, although the prep for the flexible sig is worse than that one. Feel good!! [ more ]
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J-Pouch ForumsHelp! Need advice now!
leakage
U UjohnjC
UjohnjC its been non stop at night i wear depends at night had to change it in middle of night just now before this week it was always very light leakage scaring me [ more ]
MicheladelfinaTX I had that for a while with both my end and loop ileo's. I grabbed a few of the cloth covered, rubber-backed mats from one of my hospital stays and would keep one of those under me while I slept to keep the sheets from getting dirty, as it seemed to happen more so at night for me. [ more ]
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J-Pouch ForumsHelp! Need advice now!
upper abdominal pain/painful bm's/bladder pain/Help...Anyone?
EndiEndi
Endi You guys have really helped put me at ease with all of this. Thank you all SO much! After reading your responses, I was about ready to go through with the steroids and everything. However, I feel like the medical team has actually listened to me. They said they understand my concern with prednisone. The anxiety and depression that it gives me is not what they want for me. So they gave me the option of getting ivir immunoglobulin infusions for the next few days. Much lower risk of side... [ more ]
Jan Dollar C. diff pouchitis must be treated differently than standard pouchitis (which is an inflammatory reaction to normal bacteria in the gut). The antibiotics we take for regular pouchitis can promote/cause C. diff infections, so they need to be careful about that. More and more antibiotic resistant strains are becoming prevalant. Pouchitis can also be idiopathic, meaning for no known reason. The assumption is that it might be a new type of IBD, and this is why steroids may be called for when the... [ more ]
Scott F Most pouchitis is not caused by C. diff, though in very severe cases of pouchitis C. diff is probably a larger fraction. A short course of prednisone probably won't do any harm, and might calm things down enough to enable you to consider your choices under more relaxed circumstances. Remember that the goal is (I think) to feel well and live your life fully. It may not happen by the ideal path, but it's still the goal. I hope you feel better soon! [ more ]
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J-Pouch ForumsHelp! Need advice now!
burning pain /bowel movement
mariamaria
Scott F Maria, lots of folks report that standing up sometimes releases a "second wave" of poop. I don't have the patience for 15 minutes on the toilet, but if I notice that I need another round after I stand up, that's fine with me. I'm lucky to not have any pain with it, unless I have active pouchitis. [ more ]
jeannie Marie I hope you are slowing your stools down with lonox. The first year I took 3 in the morning and 3 at PM. It helped. Also you can get a catheter from Edgepark pharmacy 30 French and put it up your rectum to empty your jpouch. Kock pouch people use it to empty. I did not know this little (pearl of wisdom) the first 6 years of a burning rectum. I have just gotten a permanent ileostomy. If I knew this was where my journey with Ulcerative Colits ended I would have stayed with catheterizing... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Post Surgical Abscess Question...
ATXGuyATXGuy
ATXGuy Thank you Dan. Really solid information. I see my surgeon today, so I'll be sure to make sure to ask when he doesn't think I need a drain... best, b. [ more ]
Lesandiego My drain bag was inserted on my abdominal left side. Guess I was just one big leaking infectious mess after my colon perforated in multiple places. [ more ]
Pouch4Wf Hi ATXGUY, Intra-abdominal abscess are collections of infectious fluid in the abdomen. Right after surgery some fluid in the abdomen is normal. However, infectious fluid that collects into a pocket are referred to as an abcess. Abcesses often form 1 week to 3 months after surgery. From J-Pouch surgery can be caused by a few different things. 1) Pouch Leakage: If there is any pouch leakage, the bacteria that escapes will cause an infection. 2) Anastomosis Leak: The connections that are made,... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Painful Internal Bump
J JLG5045
JLG5045 Thank you everybody for the advice. It was an abscess. Spent all day/night in the ER yesterday. It did start draining itself but surgeon wanted it drained completely. Which is what they did. They then left a little gauze in there to help it continue drain if needed. Was feeling ok afterwards but today feels like the spot is hard and tender. And still very uncomfortable, so hard to keep the area clean. Of course concerned about continued infection. They gave me cipro and flagyl and told me to... [ more ]
Jan Dollar Yes, sounds like an ano-rectal abscess. Call your doctor. In the meantime while you wait for an appointment, do hot sitz baths 4 times a day (or whatever you can fit in), to help this localize and be ready to lance. Jan [ more ]
Scott F In the meantime you might get some help from plenty of sitting in warm/hot water. If it's an abscess hot soaks can help it open up and drain naturally. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Rapid Severe Dehydration
B BarbC
apa Hi Stan, I am new to the site and see this is an old post, but wondered how your wife is doing and if you have any suggestions of things that have helped her. I had j-pouch surgery 4 years ago after having UC for 7 years. I have had Chronic Pouchitis since June 2011. I have never met anyone else who has dealt with severe, rapid dehydration the way I have. I have been hospitalized multiple times for it with some of the same symptoms as your wife. They can never get a blood pressure read when... [ more ]
BarbC Liz, That blog is one hard read. That young lady has had to endure more than most of us would see in a lifetime. She is humorous, serious and positive through it all. When I started reading the part regarding her adrenal insufficiency, it reaffirmed what Jan posted. It is time to see an endocrinologist! Semi-Colon has not blogged since August. I hope that she is OK. Barb has been on Prednisone several times. It all started with a high dosage (40 mg) trying to combat the UC starting March... [ more ]
liz11 first I am so sorry your poor wife is going through this and I commend you for trying to find some answers. I don't recall adrenal insufficiency as being a simple blood test so I don't know what they tested in the ER. If I remember correctly adrenal insufficiency is tested with an outpatient hospital stay where they dose you up with steroids and check the results. I remember being checked for this on two different occasions and I passed once and I failed once. But more importantly, I recall... [ more ]
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J-Pouch ForumsHelp! Need advice now!
yeast question
R Rebe0505
Endi Also when I've had yeast infections in the past and tried treating them with OTC meds, it always got worse. I have to go get an anti fungal from my doctor who tells me EVERY time to quit using the OTC meds for yeast infections because they are the worst thing you can use for one. [ more ]
GinLyn When I get a yeast infection I have it always starts with an itch on the outside, around the labia. Then, if not treated, it goes inside, vaginally. A whitish discharge can be part of it, as can an ache-like pain. Sex is painful, feels like sandpaper. Some people say the discharge smells "fishy" although I have never noticed it. Unfortunately I am an expert at spotting them through having so many, so haven't had one get too bad in years, but when they are bad the itch and pain are constant. [ more ]
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J-Pouch ForumsHelp! Need advice now!
No Pain, No Bloat, No Nausea, But No Poop!
Kathy AKathy A
Kathy A Well here's the scoop, or should I say poop? lol It might have been just a rut in the rocky road to recovery, or a partial blockage that resolved independently but either way, it appears that things are getting back to normal. Now I need to re-adjust the Imodium dose and find what's right for now. I am so glad that I had this forum to go to before running off to the "system", especially on a weekend. Thanks again Jan. [ more ]
Kathy A Thanks again. Today I have had no BM's at all (it is now 9:30 pm local time) except a very tiny amount. Some gas but very little. I feel a little pressure in my abdomen but very mild. If I don't do anything over night or in the am, I think I will contact the Surgeon on-call and see if they think I can wait to see my surgeon next week. If I get pain in the meantime, I will go to ER. (I hate to do that because it will be a 6-8 hours waiting to be seen - one of the biggest problems with the... [ more ]
Jan Dollar Could be a stricture, but strictures are not intermittent. Still, it could be in early stages with spasms of the sphincters that restrict emptying. Imodium can be difficult to regulate. Some are more sensitive to it than others. This is why you are better off finding the dose that keeps you comfortable, and sticking with it as a daily dose. I focus more on frequency than stool consistency. I am loose most of the time, but no leaking. If I try to have stool that is too formed, it can be... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Surgery on Monday
K kennyboy
Mysticobra Best wishes to your husband Cathy. Hope everything turns out well. Richard [ more ]
kennyboy Well my husband had the surgery to remve his j pouch on Monday morning he was in theatre 7 hours and in recovery another 4 he has had two hard days but tonight he is slightly improved .hope this is a sign he has turned a corner ,just tought I would let you'll know ,regards cathy his wife [ more ]
kennyboy Thankyou for your replies I'm very grateful for any advise at this point regards kenny [ more ]
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J-Pouch ForumsHelp! Need advice now!
Internal anal sore area
rachelravenrachelraven
rachelraven Has no one had any issue with Canasa suppositories causing anal irritation? Thought things were getting better, and it's still better than it was Sunday to Monday, but still have this left sided anal pain internally. Doesn't hurt to have a bowel movement. No discharge. Still hoping it's just a side effect of the Canasa. Thanks, if you've had Canasa issues, could you please respond? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hernia
A abillusmc
Lesandiego I asked my surgeon the following... How many hernia operations? How many operations of patients with J-pouch? How many could not be performed laparoscopic? How many did you determine could not be repaired after open sugery? My surgeon was careful enough to schedule my lapro surgery with another surgeon, so that she had an extra set of eyes to assist. [ more ]
abillusmc How do you select a proper surgeon What is the % pf success. If you do not wear hernia belt does it enlarge. Does this then prevent exercise to resuce ab fat built up prior to surgery [ more ]
JenniferG I've had same hernia over stoma site repaired twice now (with mesh) and it's back again! don't have any idea how to fix it but Im not going to go in for surgery once a year. [ more ]
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J-Pouch ForumsHelp! Need advice now!
rectal surgery
B buttercup
Amstobar And my favorite one: What would you do in my situation? [ more ]
Amstobar sorry, meant to add the questions: press hard on alternatives. What happens if we wait? How long can we wait? What are the risks in waiting? Have all tests been done that can provide insight into what's going on? If not, why not? Have the surgeons had similar cases? Why do they feel so strongly that operating is the only choice? [ more ]
Amstobar Just stating the obvious, but seek a second opinion ASAP. Surgeons are wonderful. They saved us all in some way or another... But... They are also trained to solve the problem by cutting things. It's hard to stay objective. They have a lot of experience solving problems in the way they are trained to solve them. They are also human, and not all of them can objectively evaluate alternatives. Some certainly can. You need to find one that your gut says is doing this. Based on your post, I don't... [ more ]
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J-Pouch ForumsHelp! Need advice now!
ct and alleykat can you tell me symptoms of yeast infection
R Rebe0505
Rebe0505 wow asked you this on another discussion board.. sorry ..so maybe i would be going to a gynecologist(women's dr.?) i have no rash i think..or would i ask g.i ?going to one next week for first time..on other hand i have appointment with a derm on thurs for other issue maybe i should bring it up..but doubt she will have time other than to answer me..the receptionist made it clear she just allotted time for issue i made appointment for.. so it sounds like it can be taken care of..gosh its even... [ more ]
CTBarrister Rebecca I do not have a vagina so I do not know what the symptoms are in the vagina. On the skin, it's a red rash that is burning and itching. The times I've gotten it I I go to my dermatologist, he scrapes off an area of the skin (just little flakes of skin), looks under the microscope, and in 30 seconds he confirmed that was a mean yeast infection. Being a man I get it on my skin. Sometimes I see a flash of red rash in my armpits or my leg pits, I douse it with Zeabsorb and then it goes... [ more ]
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J-Pouch ForumsHelp! Need advice now!
CANCEL JPOUCH SURGERY? OR TRY ONE LAST DRUG? NEED ADVICE-HELP!
A Ale
Halo52208 I would do two things different. Not do the remicade and tried the fecal transplant. Otherwise I would still have the surgery. [ more ]
Ljz Good luck with your surgery! I hope it's smooth sailing but as I'm sure you know there will be tough times in the process. Each step has it's own challenges, but if you face them like you have with colitis, you'll be fine! It takes time, but you'll get there! Don't be afraid to ask for help! Keep us posted! Laurie [ more ]
liz11 congrats on your decision. keep looking forward [ more ]
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J-Pouch ForumsHelp! Need advice now!
Rapid weight loss and diahorrear help!
drew303drew303
liz11 seems like they should admit you and get iv drip fluids going while they figure out what is causing this. I was just in a similar situation however I lost so much fluids in 2 hours that my vision became affected, my limbs became tingly, and then I passed out. ended up in er, got admitted. whilst they were pumping in the fluids they were testing for anything and everything....cdiff, parasites, etc,,, then they even did an ileoscopr (as I have perm ileostomy now) to rule out crohns stuff. [ more ]
Scott F The weight loss itself is simply water, as your doctor said. The resulting dehydration can be dangerous. If you can't keep your hydration up you'll need intravenous fluids. If water alone won't keep you hydrated (and it sounds like it isn't doing the trick), you can drink an oral rehydration solution, like Pedialyte, or mix one up yourself (recipes in recent threads here or all over the internet). The little bit of sugar improves absorption, and the salts help restore what you've lost. Are... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pain from Fissure...Skin Tag or Both??
JulieB71JulieB71
JulieB71 Oonja, You said you had skin tag removal done and did well with it. Was just wondering if this was done since you've had your j-pouch and about how many times a day you were going during the healing process. As I go on average 6-7 times a day. That was the surgeons concern with it healing. [ more ]
oonja Hi Julie. I had an inflamed skin tag from a fissure that caused terrible pain like you're describing. My GI sent me to my CR surgeon and she decided to remove it. It was uncomfortable while it was healing, but it was definitely the right choice. Pain was completely gone. So, I'd maybe see if you can get your surgeon to look at it to decide if it can be removed. Hope that helps. [ more ]
JulieB71 Yes biopsies were done and came back showing some pouchitis but nothing abnormal outside of that. Did take another 7 days of antibiotics and it didn't help this pain, just seemed to thicken things up a little. It's not a pouchitis pain. My frequency and urgency are normal but do have some blood in stool. Feels like most pain is focused around skin tag and anul opening. I have had sharp pains like I have heard described as broken glass or stabbing pain when going. Which makes me think fissure... [ more ]
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J-Pouch ForumsHelp! Need advice now!
5 days after surgery, cannot empty jpouch
H hblount43
lablover Peel the apple skins off, don't eat popcorn, and be careful with nuts.. [ more ]
wsh6745 I'm sorry he continues to have trouble but I do too so I completely understand. I am a vegetarian so don't eat meat at all but I do the best with yogurt, cheese sandwiches, cheese pizza and fried rice. Oatmeal and toast is pretty good too. It sounds very strange but BM's are also a bit easier if I kind of round my lower back and lean back toward the toilet lid a little bit. Almost like the position a female gets into to wipe after urinating. It seems to put things more in line or something... [ more ]
hblount43 They did check him during the take down, and dilated him while they were in there. From what the surgeon says, it is common to have to do this frequently after the take-down occurs until the new plumbing becomes accustomed to its new role. Do you guys have any suggestions on things that were easy for you to eat and digest? We are doing the low residue, but it is not very appetizing for him. So far he haslost over 40 lbs, (6 foot tall, 210 normally)and I am trying to get the nutrition into... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Diclofenac
T Teddybearlady
kta I have periodic back pain. When this happens, I take diclofenac. I try to get off it as soon as possible, but sometimes have to take it twice a day for a month or longer. My surgeon said not to worry, but to keep an eye out for bleeding. So far, no problems. I pray that continues as this is really the only thing I found that works well when the pain gets unbearable. [ more ]
Jan Dollar I think this is one of those cases of "things change." Now that you have arthritis to treat, you have more than just your pouch to deal with. Maybe you will tolerate NSAIDs, maybe not. Unless you have had past experience with intolerable GI side effects, you just cannot know if it will be an issue for you. Yes, they will increase your risk for pouchitis, GI bleeding, liver inflammation, heart irritation, and more. But, you also need to be able to function and live your life. I was able to... [ more ]
Scott F The NSAIDs can cause J-pouchers trouble, but it's probably not a big deal with occasional use. Are you planning to take it every day, or less often ("as needed")? The only NSAID I can take is Celebrex (because of allergies), but I only take it about 4 times per week. [ more ]
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J-Pouch ForumsHelp! Need advice now!
bowel problem with j pouch
S sparks
TE Marie Sorry you are having this bleeding. All the years I had bleeding and I'm still am not use to it. I had a pouchoscope last week and had lots of blood afterwards, but it was clot like red coming out from the biopsies. Not filling up the toilet. There's a big difference I hope everything goes smoothly tomorrow. [ more ]
Jan Dollar Sounds like he is talking about a balloon dilation. Generally, there is no hospital stay and it is an outpatient procedure. But, yes, you are sedated. I don't think most of these procedures require general anesthesia though. But, your doctor may want deeper sedation than you get with the usual endoscopy sedation. Regardless, it should not require an overnight stay in the hospital, unless there was a complication, like perforation. Or, because of your current bleeding, he might keep you... [ more ]
sparks Hi, Well the doctor did the pouchoscopy yesterday and said to expect some bleeding. Today the blood was very profuse, filling up the toilet bright red at least 10 times in one day. Doctor said to come in the office tomorrow a.m. and it may be a stricture. May need to go to hospital for non-surgical fix. Anyone have this? how long in hospital? need to be knocked out? thank you. [ more ]
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J-Pouch ForumsHelp! Need advice now!
the other shoe just dropped...celiac disease
MicheleRMicheleR
TE Marie Kat122, I'm sorry you will need to deal with this. I know a young lady that was diagnosed with celiacs shorty after type I diabetes. She went on to graduate with honors from college while playing on a golf scholarship. She called places like Taco John's to find out if they had any Gluten Free foods ahead of her traveling to different college golf competitions. I never did find out what she did about those dates. She continued on and became a Chiropractor and we're going to her wedding to... [ more ]
Kat122 Hello, The same thing happened to me today. After 12 years with a pouch, doing very well, today I received a blood test result saying that I tested positive for the celiac antibody (Endomysial IgA Ab). From what I've read today it's pretty much 100% I have celiac. I am feeling really shocked and upset. Last week I went to my old GI doc because I was feeling a lot of joint pain (like I did when I had colitis) and fatigue. I was totally convinced it was pouchitis and dehydration and hoped to... [ more ]
TE Marie PlantFusion is an awesome gluten, lactose, soy, and all free protein powder mix that is great to make smoothies with. It has become my favorite meal of the day. There are different flavors, Vanilla, Chocolate, and I forget the rest. If you want to try it go to their website and enter your zip code to find out where it's sold by you. You can also order from Amazon etc. I use fruit but also dump in fresh spinach, carrots etc. My nutritionist is the one that introduced it to me as I had a real... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Going from j-pouch back to ileostomy
D Dort
Lambiepie UCcured, you're liable to get different responses to your question, depending on people's outcomes. Some with failed pouches say they're glad they gave it a go. Others who are suffering with their pouches will say they wish they stopped after the first procedure with their end ileos. One poster suggested "you rule your ileo and the jpouch rules you." You really have to consider things from a physical and emotional perspective and what in life is important to YOU. You may want to peruse this... [ more ]
UC cured and loving it I've been post op 1 yr after removal of colon for cancer. I suffered 15+ years with colitis. I've had no problems with my ileostomy once I accepted it and learned how to work it so have been on the fence with getting the j pouch. I love feeling fine without issues and being able to eat without pain. I just located this forum and had reservations about joining since I don't have a j pouch but I see many go back to the ileostomy. For those that tried the j pouch do you regret it? And maybe... [ more ]
chiromancer I was told they would try to do it laproscopically but there was the possibility they would have to do an open surgery. I had very good communication and relationship with my surgeon whom I like as a person. He was more than willing to take the time after an exam to answer all my questions. Regarding leaving the anus, had I not brought it up it would have been removed. It is not that unusual for people with ostomies to have their anus left in place. It seems really unusual for a removed J to... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Cuffitis and Pimples
DuffySoFlaDuffySoFla
phoenix08 I have been getting painful pimples on my scalp too off an on since my surgery. But mine do not seem to be regular pimples as they are hard and red and if I try to scratch them, they just hurt and they leave a open area. They are not regular pimples. I get these on my back sometimes too. I have no idea what they are other than it is crazy how weird my body gets sometimes. [ more ]
TE Marie I never had them before my colon was removed for UC and don't have them now with my cuffitis. That said I think you should have it all checked out, especially since they are appearing with flares. [ more ]
rachelraven The mouth ulcers run with Crohn's and colitis dx... And can still happen after a pouch. The head things? No idea if they're linked. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Inconsistencies in Quantity & Quality
Kathy AKathy A
Jan Dollar I agree that this does not sound diet related. It could definitely be bacterial overgrowth (pouchitis symptoms without actual inflammation). Instead of a "bottom up" approach, have you considered a "top down" approach to tackling your symptoms? Have you had your gallbladder evaluated? You certainly would not be the first to have a funky gallbladder after j-pouch surgery. Gallbladder and liver problems are associated with UC. It does not sound like you are obstructed with gallstones (at least... [ more ]
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J-Pouch ForumsHelp! Need advice now!
cipro/levaquin question as to calcium/probiotics
R Rebe0505
Rebe0505 thank you jan [ more ]
Jan Dollar Yes, you are not supposed to take it with calcium supplements or dairy (same as tetracycline). It interferes with absorption. So best on an empty stomach. But, if the calcium or dairy is combined with a varied meal, it is not so much of an issue (good to know if you get nauseated with it). http://www.mayoclinic.org/drug...per-use/drg-20072288 Probiotics don't interfere, but the antibiotic will kill them, so you should space them out from the antibiotics. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Extended release pills always a problem?
ConnieConnie
TE Marie I switched from one Wellbutrin ER to 3 pills a day that equalled the same dose after my first surgery. I had all kinds of medications floating out of my stoma. I stay off of all ER or coated medications now and it saves money and they work well. [ more ]
skn69 Hi Connie, I have had some wonderful 'Wooppss!' events with LP drugs or slow release etc. As an epileptic they put me on a 24hr slow release pill that was supposed to keep me sezure free...I had absolutely no results and was sezuring out like crazy until one day I fell asleep and woke up 5 days later. Darn pills were accumulating in the bottom of my pouch until something that I ate apparently disolved the protective layer and boom! I got it all at once. Now I am very careful about anything... [ more ]
Jan Dollar While he may not get the full dose benefit, depending on his transit time, the XR formulation is more of a continuous release, as opposed to the burst of medication you get with the standard formula. This gives you a more steady blood level, instead of the peaks and valleys of the standard Effexor dosing. So, even if there might be some waste, it might be a better option and better over-all result. That said, the proof is in the pudding. If he exhibits symptoms of withdrawal or under dosing,... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Nighttime leakage w/ out pouchitis?
J jeane
boy's mom Doctors not offering any suggestions on this really. A bio feedback PT said "liquid equals loose" but with a restricted diet and all of the acacia capsules-- his leaks are not liquid. His cal protectin level shows no inflammation. Also, for the last few weeks the leaks seem almost nightly. So have no explanation. He is a deep sleeper, so guess that could contribute. Very frustrating. Would love some suggestions. [ more ]
boy's mom My son is on chronic antibiotics and it still happens at least 50% of nights. [ more ]
Lambiepie I never leaked at night for the first 2 1/2 years after takedown. I have leaked for the past year. My sphincters are in good shape so I think it happens when I pass gas in my sleep. I will say that this has happened since I've been off antibiotics. [ more ]
See all 17 replies...
J-Pouch ForumsHelp! Need advice now!
Face tingling
nysnys
wsh6745 Thanks Jan! I always look forward to your responses. [ more ]
Jan Dollar If the only medications you are taking are Norco and Tramadol, then it is not likely a drug photosensitivity. Based on your description, I'd suspect it was a reaction to the sunscreen. Even if you have used the sunscreen before, you could develop sensitivity to it. The sun exposure heightens the reaction. Jan [ more ]
wsh6745 I was out in the sun on Sat and Sun this weekend. It was beautiful out so I wore quite a bit of sunscreen. Last night at bedtime, my cheeks and jawlines were tingling and itching. I just thought it was too much sun so I took a shower and went to bed. This morning, not only are they all still tingling and itching but both eyes are very very puffy and swollen. It honestly looks I was punched in The eye, which of course, I wasn't. The combination of all of it is news to me. Could it just be too... [ more ]
See all 24 replies...
J-Pouch ForumsHelp! Need advice now!
High liquid Output
Shane199Shane199
Txgal58 Hi Shane 199! To be honest, even before I had the takedown I felt so much better, I guess I didn't realize how sick I actually had been. My UC came on very gradually, I was never on steroids, never hospitalized, but obviously it was dragging me down. I had complications after my takedown, within a few weeks, due to adhesions. Unfortunately I had to be opened up again to take care of those. It's hard having three surgeries in six months; I went from 198 the day of my first surgery to 120. Was... [ more ]
Rebe0505 recommended for dehydration..pedialik drink..found in supermarket in children's section..it replenishes the salt one looses with lots of bms or liquid bms..this is better than gaorade as it has far less sugar..recommended by dr. shen..ps tastes pretty good too.. [ more ]
lovedby2 Hi I'm 2 weeks post op loop iliostomy. This is my second loop iliostomy and just like before, lots of liquid output. I lost so much weight with my first round of surgeries in 2012 and I've lost another 10 pounds so far since being released. With my first surgeon in 2012 he also was not in a rush but I eventually said it's time, I was losing too much weight and was in the hospital for dehydration, severe, often. I'm with a different surgeon this go around and feel good with him and let me... [ more ]
See all 10 replies...
J-Pouch ForumsHelp! Need advice now!
Pouchoscopy results: do I have Chron's?
DL Doodle Lover
Txgal58 Hi Doodle Lover! I was very interested to see your post. I just had an upper endoscopy and flexible sigmoidoscopy done today. The upper endo showed some minor irritation in my esophagus from acid reflux, nothing more. The flexible sig however showed ulceration and inflammation in almost exactly the same areas you reported! I've had pouchitis before and am not experiencing any symptoms as I had with it. The reason for the tests today was to see if we could figure out why I keep having chronic... [ more ]
Doodle Lover Thank you, Jan, as always for your wise and quick response. i will snuggle up with my baby and stay positive! thanks again! [ more ]
Jan Dollar It could be Crohn's, but just based on those findings, I don't think the diagnosis could be made. Just because there is some inflammation and ulcers outside of the pouch, it still does not mean Crohn's, especially since it has not been that long since the c-section. I even had some serious cobblestoning in my pouch at one time, and there was no Crohn's talk. Jan [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Something's Wrong...
GX Geoff Xmas
Geoff Xmas Thanks, I only seem to get the thrush when I'm on Flagyl, but next time I'm on it I will look into the thrush rinse. I do take probiotics, albeit not as regularly as I probably should, so I can improve on that. I really appreciate the responses! [ more ]
Jan Dollar If you have oral thrush (yeast infection), you need antifungal treatment. They usually prescribe a liquid suspension that you "swish and swallow." Jan [ more ]
skn69 The only thing that I know of is to both cut out sugars and carbs and to add probiotics... I am sure that there must be other ways but those are the easiest ways that I know of. Sharon [ more ]
See all 9 replies...
J-Pouch ForumsHelp! Need advice now!
really need a knowledgeable dr. here in l.a area
R Rebe0505
Rebe0505 dr. shen recommended dr. melmed...says he's a great dr. and he heads up dept on research there at cedars..have set up appointment..thanks for your suggestions but was looking for a g.i not surgeon..i think they see things differently.. and years ago when i was searching for help i actually went to see dr.fleshner(spelling)what i remember about him was he wore funny cloggy shoes..he liked being comfortable..he ran some tests to see if my issues were outside of the pouchitis issue or outside... [ more ]
Wife Dr. Fleshner is great. So are his partners. [ more ]
jls456 Dr. Firoozmand....for sure. [ more ]
See all 9 replies...
J-Pouch ForumsHelp! Need advice now!
Reversal
P Pinky
Pinky its like a sharp pain rather than a cramping or gas pain i went to the doctor today and he said he doesnt think its blocked or anything but he just told me to continue the medication im on and come back if im vomiting. I think eating noting and just water would help me but im type one diabetic i have to be hooked up to an IV to fast my next appointment with the surgical team is at the end of next month. Im just concerned if these are symptoms of something gone wrong and if i wait until next... [ more ]
wsh6745 If you are worried that it may be a little bit of a blockage, start drinking white grape juice and clear liquids. Don't eat any solid foods and see if it helps. I had that same thing happen once and when I quit eating solid foods and switched to water and white grape juice, it got a lot better in about 12 hours. Then I was able to actually pass gas, have a BM (that seemed normal) and I felt much better. If you start throwing up then go back to the ER. I know someone where I live and he went... [ more ]
stellababy from what iv heard this is gas ?? [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Please Help
S stellababy
Ikh They put the tube in my stoma and did the things the above user said, not from my rear. it's not painful nor difficult, and it's important for the surgeon to know the pouch is perfect before takedown. don't be afraid of this. [ more ]
techwrench The procedure is called a gastrogaffen contrast x ray. It's pretty standard. They just insert a small tube in in your rear, and fill the pouch with contrast while having you roll around on the table for the x ray. The balloon dilation is to address strictures or narrowing's from scar tissue. If the dilation needs to be performed, it's so you won't develop a blockage later. It depends on how bad the stricture is. I had this done 1 time after the take down, and they had to put me under for... [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Obstruction?
CC colonless commodore
Txgal58 Sorry to hear you're having trouble. Are you passing gas? If you aren't passing anything sounds like a total obstruction and you'll be feeling very bad, probably vomiting, soon. Partial obstruction is similar but for me, I was usually able to pass a little gas or stool. I've have several obstructions and they are not comfortable. You know your body and when something doesn't feel right. I hope everything turns out well. [ more ]
Scott F It sounds like an obstruction to me. Hopefully it's already passed. If it persists or gets severe you'll need a hospital, but it may just calm down. Do a search here and you'll find all kinds of coping advice. [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
haemorrhoids I THINK, need advice
E EoinMaxwell
Scott F First, remember that you don't know if you have cuffitis. There's no benefit in gravitating to the worst/best/first idea somebody spouts. It's easy for a knowledgable doc to identify. The ones who don't know pouches will never have heard of it. Cuffitis can vary from trivial to extremely troublesome, from occasional to constant. It's basically UC in the little bit of rectum left behind (the "rectal cuff") during the usual surgical technique. [ more ]
Rebe0505 think you need to get yourself to doctor see whats going on..no point in just guessing [ more ]
EoinMaxwell Ahh dammit. Is cuffitis common? Ie nothing serious? [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
Squatty potty opinion needed
W Wife
Former Member ❤️
Bebekspor I will second that the coco bidet is amazing! Mine has the enema function but I've never used it, I'm scarred from using mesalamine enemas so much from when I was sick with UC, ha ha. I would absolutely recommend the coco! Katie [ more ]
Jan Dollar Yes, the Coco and Toto have models with an enema function. And, these are toilet seats, not the whole toilet, so if your porcelain is fairly new, this would be an upgrade. A number of people here have gotten them and wonder how they ever lived without them! I am jealous, as I don't have one but I guess I am fine without it. By the way, I was just looking at Squatty Potty, and it looks like it is just a stool, not a whole toilet. It is pretty cheap, so if you wanted to try it first, at least... [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
Chronic Dehydration issues-EnteraGam?
Txgal58Txgal58
Shainy My hospital gave me a home made solution to drink when I'm dehydrated. It works very well http://www.gloshospitals.nhs.u...eaflets/GHPI0247.pdf [ more ]
Rebe0505 dr. shen recommends pedialyte.(gotten at any grocery store..oral electrolyte..or gaterade..one loses lots of salt when having D.he said need to replenish it..the pedilyte is perhaps better as its used for children with diarrhea and has far less sugar..i aced him about the sugar taking in since i try to reduce intake with s.c.d. like diet..he aid not problem as this sugar does not remain in system to cause issues.. [ more ]
Jan Dollar It looks like this is a beef protein isolate used to treat diarrhea predominant IBS. It is a medical food product (not a drug). The idea is to reduce the diarrhea and that will improve nutritional status. I haven't heard of anyone here using it. Please let us know if it works for you! Here is a link to the product page. http://www.enteragam.com Jan [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Question on partial blockages
S Shainy
Txgal58 Shainy, I'm sorry to hear you're having this issue. I'm 17 years post take-down and have had a number of partial or complete bowel obstructions. My bowels have been tender for even a couple of weeks after the obstruction resolved itself. So far I've not needed any surgical intervention, thank goodness! My doctor always advises me to eat soft foods for a time after I leave the hospital. You didn't say if you'd been hospitalized but I always had to go because the pain was so bad. As Jan said... [ more ]
GinLyn It really depends, but as a short answer: yes, it can. You are having output? Keep on top of that; if that stops or majorly slows and/or if you show any signs of dehydration get in to be seen ASAP. And be careful with what you eat! Chew, chew, chew. Gin [ more ]
See all 2 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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