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J-Pouch ForumsGeneral Discussion
anyone had pouch advancement or hemorrhoid surgery WITHOUT a stoma?
GinLynGinLyn
GinLyn Yikes, I'm sorry to hear that. The urgency is getting slowly less, but I still can't move very much at all without having to run to the bathroom. It's getting very old very fast. I just want to be able to move around a bit! I keep reminding myself it's early days, only two weeks today from the second op, BUT because I was completely incontinent for the two weeks in between the two ops, it's been a month of this crap (pun intended) and I am REALLY tired of it all... Gin [ more ]
dgtracy I had a pouch advancement back on June 22 2014. Did not have a stoma, reason I didn't have a stoma is because I had a tear in my small intestine during an emergency room visit for pouch decompression ( stool had backed up and wouldn't move) yeah it hurt, urgency was the worst and sometimes still is to be honest, I have a TON of gas issues that end up making me go to the restroom a lot. It's been so crazy my surgeon is going to do another pouch advancement. I'll have a stoma for a little... [ more ]
GinLyn Thanks to both of you. This has been a month of heck, that's for sure. First op on the 26th, woke up without a stoma due to too much scar tissue and problems with reconstruction, had part of my pouch actually hanging out of my anus... Yuck. Only good news was that fistula was completely excised and the muscles in the sphincter and area were strong and not damaged. (Not that it made much a difference during those two weeks; complete incontinence is NOT fun.) Then the "trim & stitch"... [ more ]
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J-Pouch ForumsGeneral Discussion
j pouch surgeons questions
D Dthorne1
TinCan da Vinci refers to a robotic surgical platform. If a lower cut is indeed possible, my guess is that it is due to greater surgical precision. [ more ]
boy's mom what is the da vinci - how does that allow a lower cut? Thank you. [ more ]
Bebekspor Definitely walk around as soon as you feel you can, even if it's just a few feet. It gets the bowels going and helps recovery. I'm amazed that someone was back to work a few days after their takedown! Crap, I couldn't even imagine going back to work 3 months after! Lucky for me I stay at home with my toddler. Wow! Katie [ more ]
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J-Pouch ForumsGeneral Discussion
I'M GETTING A J POUCH!!
S sally85
sally85 Hey guys, I just received a letter from my surgeon and attached to it was a copy of the letter he sent over to my doctor with his decision for surgery. On the letter he has written his decision to do the j pouch procedure, but he has also written that i have multiple hernias, on the incision and at the stoma site also :/ he has written he wont be using mesh and that due to this the failure rate of the repairs is higher...does anyone have any advice or thoughts on this...because my surgery... [ more ]
sally85 Thanks scott, thats what the surgeon said to that its better to do it this way around and that it can be done at a later stage, sounds like the logical way to go...and your definently right about life and its guarantees! [ more ]
Scott F Overall results are better *without* the mucosectomy. Life has very few guarantees, and surgery even fewer, but in all likelihood you'll do just fine. It's possible, if necessary, to do a mucosectomy later, but it's never possible to undo a mucosectomy. [ 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 ForumsGeneral Discussion
What do do for your pain?
S Subzeromambo
TE Marie I feel for you and think your doctor deserves a big case of anal fissures himself. Has anyone elses doctor refused to give them pain medication for this painful condition? We have a zillion nerve cells there...... I've sat in hot baths, hot tubs, epsom salt baths, used heating pads, ice packs and I've ate liquid and soft foods only so that my BM's would be as loose as possible. I understand not taking NSAIDs as they promote bleeding. How much blood flow would be restricted if you got pain... [ more ]
Subzeromambo Rebe, I already follow the FODMAP diet. I am sorry. I am in too much pain to be very coherent right now. [ more ]
Subzeromambo My doctor will not prescribe painkillers to me for this. He said the painkillers restrict blood flow in the anal area and slow down the healing process. The rectal pain is too much for me to walk. I was wondering if there are any naturopathic options? [ 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 ForumsGeneral Discussion
Do partial blockages always hurt??
chili123chili123
Jan Dollar The higher up in your GI tract the obstruction is (closer to your stomach), the quicker and more severe the symptoms will be. That is because when things get backed up to the stomach, nausea and vomiting occur more quickly and there is more pain. If the obstruction is near the pouch, then it takes longer for things to develop to the point of affecting the stomach. If it is a complete obstruction, as opposed to a partial obstruction, symptoms develop more quickly too. You should gauge your... [ more ]
Spooky Glad you are okay. I don't think you overreacted, given your history. That being said, sometimes having a partial obstruction is a reminder that we still need to keep half an eye on things. I had two brutal post-op blockages, then I had several partial with my ileo (none of which required hospitalization, thankfully). After my takedown, I went a few years with nothing and I almost thought they were a thing of a past, even though I was well aware I had adhesions and could often feel stool... [ more ]
chili123 Just got home from the Cleveland Clinic. The pictures from my cat scan never made it so he had nothing to look at. He did a scope of my pouch etc. and took biopsy and blew a bunch of air up my butt to the point I thought I would throw up from burping crazy. I am sure it was a partial blockage and I believe it is passing..... even the air seemed to help I think. Definitely a learning experience for me. I am undecided if I feel I overreacted but my last blockage was brutal (did surgery) so now... [ more ]
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J-Pouch ForumsGeneral Discussion
excessive night time BM
M MAS
MAS Lambiepie what does laying on right side or left side have an effect? [ more ]
MAS thank you everyone for the positive feedback. It is great to hear this is normal. I will try the tips and hope it helps. I'm hoping to go back to work at the end of August, but with getting no or little sleep I'm not sure if that will be possible. I'm hopeful that the BM's will slow down in the night. For the most part my BM's are formed throughout the night but by 5ish they do become liquid. [ more ]
ElmerFudd Unfortunately, your experience is fairly common. All the food from the day is ready to exit during the nighttime hours. Also, any inflammation or upset in your j-pouch due to healing or imbalance in your gut flora will be exacerbated at night. Meaning: you have excess gas and stool and can't sleep for very long. I really hated hearing it would just take time, but as you have seen during the day - it will get better. See if probiotics help you out any (ease into them - immediately more is not... [ more ]
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J-Pouch ForumsOstomy & Skin
pouch removal
K kmj
Holly HM Amen to that. Just trying to keep my mind off of the surgery. I really do dread a 6 hour surgery. That is how long my original surgery took. They took out my uterus and ovaries with the first surgery. My surgeon said it would be better not to have to go back in there for anything, so they basically cleaned out anything I didn't need. The surgeon that will be doing this surgery says it may take that long because chances are the pouch has attached itself to my bladder and will need delicate... [ more ]
Lambiepie Holly, I am feeling somewhat anxious over this major operation. Like you, I find myself saying, "next summer, I can have a bonfire on the beach and eat a sandwich!" I did very well with my ileostomy. I felt strong and like I had conquered something. The only leaks I had were 2 near the wafer early on because I had neglected to remeasure my stoma and a handful later from my watery loop output that I didnt empty enough and would break my clip open. Oh, and one from a large salad I ate late at... [ more ]
Holly HM Karen, thanks for asking. Are you having any leakage from your anal area? The nurse told me that I would have some, but the body will start to absorb it and it will quit after a while. I have been looking through ostomy supplies. When I had my temp ileo, the area under the wafer would break out and I would be miserable. That was 20 years ago and hopefully the products have changed and gotten better. I was reading about an appliance that has a filter on it for gas. Do you use that or... [ 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 ForumsGeneral Discussion
Top Professors in Pouch revision?
Simply MESimply ME
liz11 yes Dr Remzi is the tops. he does 2-3 pouch revisions or ripouts a week. [ more ]
jason411 Dr. Remzi is probably most famous on the boards and took over from Fazio. When I was in the hospital my roommate had Remzi do his revision and he seemed pretty happy with how he was being treated. And walking around I met a person from Oregon and Texas who had come to the Cleveland Clinic to have Remzi hopefully solve their problems. [ more ]
winter wish Hi I had mine done in London Prof Tekkis in London Clinic trained under Prof Nicholls who helped pioneer the j-pouch with Prof Parks, so excellent! http://www.thelondonclinic.co....ofessor-paris-tekkis [ more ]
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J-Pouch ForumsK-Pouch Korner
New thing and I hate it!
vanessavyvanessavy
vanessavy I have nothing wrong with me so it is just nerves. I can also still do kegals down there so sure there are plenty left. Anyway, with FAP I get screened for every thing under the sun every 6 months so all good. [ more ]
skn69 There is also another possibility that we often forget because we are closed up down there...an abscess. It could be a sterile abscess or cyst or something else that is growing where it shouldn't. It can cause a feeling of heaviness, like something is in there (in fact it is!) and wants to get out! An ultrasound can often find it easier than any other study. I had 2 tumours 5 and 8 inches in the 'Cul de sac de Douglas', the area behind the rectum in the bottom curve of the spine (sacrum... [ more ]
Jasmine 2 My thoughts on this: Possible over sized pouch; Pouchitis; Phantom urges; Are you close to menopause....I think estrogen loss causes less elasticity of the muscles and tendons holding the pouch in place; Did you have a hysterectomy? [ 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 ForumsGeneral Discussion
20+ BM daily help
M MAS
Rebe0505 everything you describe is totally normal...i was told 6 months should get you to where you are good..in my case they said a year,then it went to 2 years and so on..but i fall into the 10 percent of patients who develop chronic pouchitis..and i still have issue of having to go after i stand up from time to time.. but most likely yours will just keep improving and before you know it you will hardly know you have a pouch...thats what they tell me!!!! [ more ]
Bebekspor I still sometimes feel like I have to go immediately after standing up. Until I started the cipro, I was having accidents. That was a long darn time of crapping myself. At first it was daily, several times a day, then slowed down to several times a week. I must have had pouchitis from the beginning. I'm still on cipro and no longer have accidents, just some leakage. Katie [ more ]
MAS thank you everyone for all the great tips. I did switch to baby wipes and have noticed a difference. Thank you for the tip! My dr did prescribe 2 creams. One is lidocaine and the other is a compound mixture cream, both have made the BB managable. My BM's are slowly decreasing this past week 14-18 much improvement from 24+BM. I'm two weeks out from take down. For those of you who have had the take down, when can I expect the BM's do decrease and get to the 5-10 BM a day? My BM's have... [ more ]
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J-Pouch ForumsGeneral Discussion
Is it unrealistic to think fissure will heal?
JulieB71JulieB71
Scott F I certainly prefer a gastroenterologist for most pouch issues, but not all of them have enough J-pouch experience to be adequate. [ more ]
Pouch4Wf Most Surgeons follow-up with their patients for at least a year. After that, the care, including things like pouchitis, fissures, pouch-scopes, can be handled by an experienced GI. Our GI has many patients with pouches and feels very comfortable. Remember, surgeons will always look at things from a surgical perspective first. In this case, they may first rule out surgery, then give less credence to the "medical" side of treatment. GI's will do everything medical possible before sending to a... [ more ]
JulieB71 Thanks for all the feed back. I see my CRS Monday...I will ask him about the Nifedipine. I never have had a Gastroenterologist. Do any of you have an opinion about the difference in the knowledge of a CRS verses that of a Gastroenterologist in treating conditions that arise with us poachers? Have been wondering for a while if I should have one. [ more ]
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J-Pouch ForumsPouchitis
Endoscopy/pouch scope results
AllyKatAllyKat
liz11 are you going to rotate of the xifaxan and onto something else then back to xifaxan? so that it doesn't wear out its welcome? also beware of all that sugar and bad carbs... don't want xifaxan to have to fight that hard [ more ]
AllyKat Yes. Even a little bit of inflammation effects me bad yet some people have no problem with a low level. [ more ]
boy's mom congrats on good looking pouch Some drs have said that it is normal for pouches to have some level of inflammation. Have others heard that? [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
IVF in August- any insight?
Allie86Allie86
JillM I was scared to death to do IVF, but it turned out to be a lot less traumatic than I was expecting. I found the injections were more of a nuisance than anything else. Worst part of the whole thing is the 2 week wait after you transfer your embie(s). I did three cycles and got pregnant first try all three times. First was a fresh cycle where we transferred 2 3 day embies. One implanted and he is now 8 1/2! I did a frozen cycle and did get pregnant but miscarried early. Second fresh cycle we... [ 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 ForumsGeneral Discussion
Non GI Specialists' Knowledge re: J-pouch.
C CeeeeCeeee
CeeeeCeeee Prior to my ongoing challenge with ulcerative colitis, I had never heard of a J-pouch. But, then again, I'm not a physician! [ more ]
mt It also hits home here , once went to an ER and we were going through my history a Dr asked me after i had mentioned i had an ileal pouch-anal anastomosis (IPAA) as i prefer to use this medical term, to my surprise she didn't know what it was then i had to explain that i have a pouch created, she asked me can she see it.lol Its amazing how many medical professions don'nt understand this procedure considering it has been developed since the 80s according to Wiki "The surgical procedure for... [ more ]
Spooky I think we can all relate! My allergist (who herself is quite familiar with j-pouches, having a sister with Crohns) is currently on mat leave and she's had another allergist fill in for her while she's off. I went in for my scheduled follow a up few weeks ago and since it was my first time meeting the doctor who is filling in, we went through a brief history. I mentioned I had a colectomy and j-pouch and she looked both concerned and perplexed. I quickly explained what a j-pouch was and why... [ 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 ForumsPouchitis
jan,scott question on quantity of antibiotics and c-diff
R Rebe0505
Jan Dollar As far as I know all fluoroquinolones have the same side effect profile. The main reason to choose one over the other is bacterial sensitivity. The more you use any particular antibiotic, the greater the risk of bacterial resistance. http://www.merckmanuals.com/pr...luoroquinolones.html Jan [ more ]
Rebe0505 jan would love to pulse off..but right now it just does not work but will try again when i finish up my second week of levaquin..by the way since levaquin in same antibiotic class as cipro do you know if it is as detrimental as cipro in that cipro can cause various side effects? [ more ]
Jan Dollar Scott, I could not find my original source, which was probably a few years ago. Of course this was an estimate, based on how widespread this bacteria is in the environment. I think also, that article did not discern pathogenic C. diff (toxin forming) from non-pathogenic C. diff. Anyway, this Cleveland Clinic article states that colonization can be as high as 50% in hospitalized patients. http://www.clevelandclinicmede...difficile-infection/ Jan [ more ]
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J-Pouch ForumsGeneral Discussion
time to count blessings
GinLynGinLyn
n/a Excellend post, Gin. I am SO glad to hear they were able to excise the fistula completely. Great news. And glad you are finding blessings to count at this point! (BTW, I totally agree with you on the hummus. I actually began calling it my "daily medicine". Right now, it creates just enough gas to clear out the system ) [ more ]
Lambiepie It isn't always easy seeing and being grateful for what we have. Thanks for sharing yours. Puppy videos are the best! [ more ]
skn69 Hi Gin, So happy for you that you have found some joy in post-op recovery time! You are a real champ! Yes, I do remember that first shower...woohoo..I cheered myself on and loved every drop...never took a shower for granted again. I missed a lot too with all of those darn surgeries including the last 'all inclusive' business weekends in some really great countries that hubby was invited to and family weddings for people I actually did like. Be careful with that stoma infection, they can be... [ more ]
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J-Pouch ForumsPouchitis
Unable to do the basic's
FM Former Member
Former Member I had an amazing GI in DC at Walter Reed on base, but they merged with Bethesda and he switched mainly to PEDS. He'll still see me but it'd be hard to get into his schedule. So I got another GI that's closer but I'm talking to his assistant 99% of the time and when he is talking to me he's just rushing everything. I'll most likely see about going to DC again since its better. That GI has been with me since 09. [ more ]
Scott F Is it possible that you may need a different doctor, do you think? Is this your original surgeon? Many of us transition to a gastroenterologist who understands J-pouches. [ more ]
Former Member I have not. I'll go ahead and request one though. [ more ]
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J-Pouch ForumsGeneral Discussion
Remicade Side Effects?
albertagirlalbertagirl
Mysticobra I must be one of the few. I was never fatigued. It worked wonders and I was on it for a bit more than a year. I was never tired from the infusion. They would give me a shot of benadryl and that would wear of after four or five hours and I was fine after that. Surprised to hear what the side effects were. Richard [ more ]
Jan Dollar You do have a point there. It used to be that you absolutely could not go back to Remicade after a hiatus because of antibody formation, but that has sort of fallen by the wayside, as many people have been able to resume it. But, in your case, I would suspect that you already have some antibodies formed, and that is the reason you react. So, you probably could not resume it later. I imagine, sooner or later, it will escalate. But, as long as you are willing to deal with it, that certainly is... [ more ]
mgmt10 When I was on Remicade I used to feel extremely fatigued after an infusion. I would sleep for an entire day and then it would gradually get better over the course of 3 days. So I know how you feel. My mom is on Remicade for her RA and she gets the same way....granted she's 82. But she's always wiped out after an infusion and bounces back in a day or two. Not sure I believe your dr.'s 1/500 people statement. I have been reading long enough on the UC forums to know many, many people have... [ more ]
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J-Pouch ForumsPouchitis
will it ever get better
T techwrench
techwrench Thanks for all the reply's! I started a new probiotic 6 days ago.I'm going to bathroom less frequently,and passing less water and seldom see blood now.The anti-depressants have taken the edge off, and I feel more at ease now. When I was scoped back in March,the Dr. said he didn't see any Crohns.I go back on August 7th for another scope,so we'll see. [ more ]
albertagirl I was being treated for pouchitis for nearly two years. Turns out it wasn't pouchitis, it was Crohns. Although I had been diagnosed for years with UC. Ulcerations were now in the pouch. I was given remicade and I felt better almost immediately. Good luck! [ more ]
Scott F Cipro alone stopped working for me after a couple of years. Flagyl had failed when I tried it. Most recently I had the idea of Cipro and Flagyl together. For now, at least, that's working brilliantly. Shen does write about combining antibiotics when pouchitis becomes difficult to treat. [ more ]
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J-Pouch ForumsGeneral Discussion
C diff
AllyKatAllyKat
Jan Dollar Glad to hear good news about Dificid! Yeah, I know this was an old thread, but there was a new response to it. There are some much less expensive brands of S. boulardii than Florastor, on Amazon, if you're interested. Jan [ more ]
AllyKat This post was from 2 years ago. I've been on multiple antibiotics since for sinus infections and now pouchitis. I take Florestor and Align with the antibiotics spaced apart! and never had c diff again so far. Dificid is the drug that killed it in 2 doses. So side effects at all. [ more ]
Jan Dollar Cipro ABOLUTELY promotes C. diff growth! So, suspicion should be high. Ally, VSL#3 does not necessarily retard C. diff. Once you have had it or are exposed to it, the spores can lay dormant for a very long time. You do not need recent antibiotic exposure for it to activate. Just having your resistance low can do it. It is not your fault. At least now you know what is going on and can treat appropriately. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Fatigue Anyone?
temotytemoty
Jan Dollar What enzymes are lost from colectomy? My understanding is that enzymes are formed in the mouth and pancreas (excreted into the upper small intestine). Or, are you thinking of the possible B-12 malabsorption (which occurs in the terminal ileum)? We can be prone to that. Jan [ more ]
cassiecass Here is another thought what about the enzymes we lose when having a colectomy.Could your body be deleted of them, causing your fatigue. Cassiecass [ more ]
cassiecass Just another thought Have they tested your Vit D hormone level as well as all vitamins.Maybe you have malabsorption woes and dont even know it GODD LUCK Cassiecass [ more ]
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J-Pouch ForumsGeneral Discussion
BM
M MAS
Jan Dollar Inflammation of the retained rectal cuff. Like UC in that little rim of rectum. If there is bleeding, it is most likely cuffitis. Jan [ more ]
MAS Jan what is cuffitis? [ more ]
Jan Dollar You can use up to 8 Imodium a day. I needed that dose for years in order to function. But, I did have undiagnosed cuffitis. Silly me for putting up with it. Jan [ 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 ForumsPouchitis
jan question on threads
R Rebe0505
AllyKat I'm glad CT that you r so improved and u too Rebecca, taking a half dose of meds is great! Yes, it is frustrating trying to keep r bacteria in check. Less than a month ago I was so sick with a inflamed pouch and ulcers and today my pouch is healthy. And it could change again at any time. [ more ]
Jan Dollar Yes, Rebecca, it is good to know that even when things look really bad, it is possible for health to be restored. All it takes is the right approach, patience, and tincture of time! The really frustrating part is never really knowing if remission will last, or if relapse was preventable. If you can accept some setbacks and compromises, life is much more pleasant. Expect perfection and you'll never be happy. CT, yes, older posts do get trimmed (due to storage constraints), but I don't know if... [ more ]
Rebe0505 thanks jan i will in future check on top for posting.. and again i am thrilled ct barrister is up and at em after what appeared to be a difficult time a few years back..he improved thats good news for him and great for site members to hear something so positive..hope can still burn eternal in our hearts!!!right now he appears to be doing better than me who for a time on diet few months back (dec)did not need antibiotics..however that has changed and presently back to one half normal dosage... [ more ]
See all 5 replies...
J-Pouch ForumsPouchitis
seeking more info on vsl#3
R Rebe0505
Rebe0505 it was for me when i tried it many years ago..made me worse..did not want to keep going with it.. [ more ]
techwrench The VSL#3 at 1 packet per day was too strong for me.It caused butt burn.My GI said that is a common complaint he hears.I am trying a milder product called Ultimate Flora (80 billion -14 strains)by Renew Life and tolerate it well.I take it spaced between antibiotics 2 times a day.Maybe it's possible the VSL #3 is too strong for some people ? [ more ]
AllyKat Thanks, I did that for a while as well. Was just curious if I was doing the right thing. Been thinking of starting it up again. My surgeon told me to rotate different probiotics every three week. [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Cipro and terrible side effects
S shnwilkins
Scott F I'm guessing we'll never get the data, Jan. Antibiotic usage is too variable to conduct a meaningful clinical trial, I think. I agree completely about S. Boulardi, since the antibiotics don't kill it. [ more ]
Jan Dollar In my mind, taking S. boulardii with antibiotics makes sense because it retards C. diff growth. Most probiotics are not useful for C. diff, and if C. diff is what you are worried about with antibiotics, then you should target your approach. Still, there is no harm, and may be some gain by using probiotics with antibiotics. I just don't think the data is there supporting it. If anyone's got some, I'd love to see it. Jan [ more ]
Rebe0505 i am with scott on this one..maybe a guess on drs part when they say take probiotics when taking antibiotics.. it is worth the cost to me rather play safe than sorry when it comes to dealing with the bad bacteria..however,it was suggested to leave between 2 to 4 hours in between..i leave more time still probiotics in morning antibiotic at night..again just trying to cover the bases.. [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
Has anyone experienced a similar change in the function of their pouch/
S shnwilkins
Scott F Your doctor is wrong two ways. As Liz writes, it sure could be C. diff pouchitis, or it could be "ordinary" non-infectious pouchitis. The lack of a fever means very little. I'm guessing that when you write "VLC antibiotics" you mean "VSL probiotics." If this is your surgeon, it sounds like you need a gastroenterologist, a stool test for C. diff, and a course of (probably) Flagyl. Good luck - doctors who know less than they think they know are a PITA. [ more ]
Pluot Sorry, your doctor is wrong (and kind of insensitive in my opinion). You've described symptoms that are just as bad as when I've had C. diff pouchitis. You should have a scope and a stool culture for C. diff. Unless you have food poisoning (how long has this been going on?), I would bet it is pouchitis. [ more ]
See all 2 replies...
J-Pouch ForumsOstomy & Skin
For those who got rid of your J pouch
dgtracydgtracy
aka KNKLHEAD Thanks, Donna. So thankful for the forum and nice to know others with similar issues! I guess one question I might have now that I read so much here: Is it less of a surgery to revise a pouch OR remove it? I've read that removing is such a major surgery ... maybe easier to give the JP another shot, anyway? [ more ]
Donna H KNKL, I agree with you that the quality of life with an ileo is underrated. I suffered with a j-pouch for 18 years. I was on the toilet way too many times and the BB was just terrible along with incontinence. My sphincter muscles were badly injured at the time of the colectomy so there was no way I was going to get any improvement of my situation. I hung on way too long. I went in for a Kock Pouch last Oct and woke up with an ileostomy. I was shocked and depressed and angry since there was... [ more ]
Alli Anderson Oops, I mean Dr. Remzi! [ more ]
See all 20 replies...
J-Pouch ForumsOstomy & Skin
j-pouch removal decision : devil’s advocate questions !
A Arnaud
Arnaud Thanks very much for your messages, Liz and Lynne, they're quite encouraging ! The part that scares me though is about having a surgeon who's done it many times ... I just had this afternoon an appointment with one of the top surgeons for this in France and it seems he does only a few pouch excisions per year (he didn't even know the exact number in fact), just because there's a very small number of patients with failing pouches (and that's a quite large hospital in Paris, specialized in... [ more ]
Lynne2 I, too, have not one regret about my surgery and only wish i had done it years sooner. As Liz said, it is very important to find an expert surgeon. Other than a few obstructions as I was learning how to manage my individual diet, i did not have complications. Liz had a very challenging recovery and even she has no regrets, so that says a lot. I hope you feel better soon! [ more ]
liz11 best decision I have ever made in my entire life... was to get rid of that jpouch. YES its a very massive complicated surgery. And don't even think of having it done unless your surgeon has done it many times before. I was one who suffered with multiple and massive complications from the jpouch removal surgery. But regardless.... I would do it again.. any day. My life is dramatically improved with that mutant jpouch beast gone. And as another person mentioned in another post... life with an... [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
US News Top-Ranked Hospitals for Gastroenterology & GI Surgery
KangaRoeKangaRoe
CTBarrister I have read your posts through the years and your medical issues seem immensely complicated. I'm not sure if you are suggesting that Cleveland Clinic does not deserve to be number 1 on J pouches or number 2 overall because they cannot fix your issues, but clearly there is not always a simple fix for everyone's issues. There certainly hasn't been a simple fix for my chronic pouchitis issues, but I believe that I've had the best possible medical care in my area of the country, which has been... [ more ]
Pouchomarx what does that really mean though?, i had mine done at Cleveland Clinic and have had nothing but issues and surgeries since 2008. [ more ]
Rebe0505 mayo rated 1 and cleveland two but if they were more specific ..jpouches..cleveland is number 1 [ more ]
See all 4 replies...
J-Pouch ForumsOstomy & Skin
how many times do you empty your bag in a day?
dgtracydgtracy
dgtracy Based on the responses so far I wonder what my surgeon would thing about giving me the end over the loop...whether this is temporary depends in me and how I feel once I have it. [ more ]
Lynne2 I had entire j-pouch removed and have a perm ileo. My output varies significantly based on what I eat. You will figure out over time what thickens your output and what doesn't and then you will able to plan accordingly. I'm probably about 6-8 per 24 hrs. My output is often very liquidy (I love fruit & veggies) so I use absorbent packets in my bag (I think they are called Ile-sorbs?). Imodium can also help if you can tolerate. I recommend emptying before bag fills to point where your... [ more ]
liz11 about 6-8. with perm. end ileo now and jpouch totally gone, And always one of those empties is in the night. but with jpouch disconnected ( and still in situ) and loop ileo it was 20+ with all sorts of medical intervention also. [ more ]
See all 8 replies...
J-Pouch ForumsPouchitis
Biologics
O OKSTFAN
Jan Dollar Humira and Simponi are newer drugs. Humira has been approved for UC for a couple of years I think, and Simponi even more recently. Jan [ more ]
JHendrix Well I certainly will not be using Remicade! (Hopefully never need it either). I wonder why they didn't offer Humira or Simponi - although this was a number of years ago. Thanks for the info. [ more ]
Jan Dollar Hendrix, I believe your admonition is specific to you, and not a general warning. Many people stay on it for many years. You must have had a reaction with the first infusion. Once you exhibit an allergic reaction, subsequent reactions can be much more severe and even life threatening. This is much like the penicillin allergy, where you survive the exposure, but another might kill you. Remicade is especially prone to triggering allergic reactions because it is based on mouse protein. Humira... [ more ]
See all 5 replies...
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 ]
See all 9 replies...
J-Pouch ForumsPouchitis
iron supplements not good for those of us with compromised guts after all!!
R Rebe0505
OKSTFAN My iron level gets low only when I have a Crohns attack and lose a lot of blood with my BM's. My Hematologist says 8 is too low. I really don't remember the normal range for iron. He doesn't recommend iron infusions until I get below 15 or so. Also, my private insurance will not approve paying for it until it gets really low. [ more ]
Rebe0505 i take some liver pills from radiant life instead of iron pills..apparently can get iron this way without side effects to intestines some people have.. d. shen did not think my number of 36 was too low because he told me not to take to much of it..besides the hair loss thing kind of just went away(it was just a matter of a few months i noticed it)..thinking now it had nothing to do with iron..and came across an old blood test from 2008 and it had iron at 30 and created no red flag to drs at... [ more ]
Marianna Since needing a blood transfusion for my pouchitis, I have been told to take iron pills daily. I have not had any issues with them to date.... [ more ]
See all 9 replies...
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 ]
See all 20 replies...

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Bill Johnson founded the J-Pouch Group in 1997.

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

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