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J-Pouch ForumsHelp! Need advice now!
Vomitting
T TMG
rachelraven A friend at work had something similar to this happen to her in her teens. She did not have IBD. She outgrew it, and they never figured it out. It would be random, or at certain times of the day. Not that I'm implying the issue is nothing, just that I knew a non-IBDer with something oddly similar. [ more ]
Tenxbless I have recently have frequent vomiting normally after meals. It sounds like pouchitis or obstructions. Try drinking clear liquids for a day and note the changes, visit the dr. to share the results. [ more ]
Jan Dollar Sure sounds like a high obstruction, adhesion based, since everything is coming up negative. I have periodic obstructive symptoms (but no vomiting). My GI has placed a standing x-ray order for me to go in immediately when I am symptomatic for a film while it is ongoing. Once the moment has passed, there is nothing to see. That is why adhesions are so hard to nail down. Maybe her doc can place an order like that for her? The bad news is that surgery is usually the only remedy. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
urine retention
O ohh_cerrl
CeeeeCeeee Upon completion of my proctocolectomy I experienced urinary retention. It was such a relief to learn to self-cath. Gradually, my urinary function returned. However, I have problems when asked to give a urine specimen for a urinalysis. I've trained myself to empty my j-pouch each time I urinate so I can never give a clean catch. It's been so many years since I learned to self-cath, I need lessons. Believe me, I'd self cath each and every time I needed to have a urinalysis! [ more ]
JessC If you have to go the self cath route, know it's not a big deal. I dealt with this throughout childhood and college then into adulthood before I had the courage to try it. It was life changing. It doesn't hurt, can be done discretely even in public restrooms and alleviated my stress to such an extent that just knowing I could usually caused me to be able to pee freely. I've probably only done it a dozen times in the past 10 years.... Always on long, stressful trips when the public restrooms... [ more ]
Catinthehat What about natural diuretics like apple cider vinegar, cranberry juice, watermelon? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Anxiety - need to vent
H Hoping
Former Member The very true and sad thing here, is the very condition itself could have been stopped in the first few months of its beginning, if only Doctors and Pharma were not ,"Big Business". For a real example, read my post i just put on today,"Colitis and how to beat it" told to me by one Honest Doctor who told me first hand, they knew of this many years now but are told not to tell people of it because it is not FDA approved. He doubts that is the reason. He told me that there would be millions... [ more ]
pauln Valerie, You are inspirational. [ more ]
AllyKat I've had many j pouch problems that left me with anxiety. I take Lexapro and on occasion lorazepam. It's been 15 years. When things r good I am ok. As soon as a problem comes back I'm a mess again. Unfortunately for this disease it seems to be the norm. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Blood with J-pouch
C CatherineN
Jeffsmom Very common to have a change in diagnosis. My son is going through the same thing, they don't know what the heck he has. He too, has his large intestine removed, in June 2014. Age 23. Blood coming out from Jpouch could mean a fistulia. And do not wait to see gastro. Tell the person scheduling it is an emergency. I get in to se my people the same day lots of times. Never wait for an appointment when you are having a problem. My son has a fistulia right now and is having a lot,of blood... [ more ]
Jan Dollar With a twin with Crohn's that definitely increases your odds that you have the same diagnosis. Crohn's has a higher familial association than UC. Not sure if this means your pouch is doomed. It is quite possible that your bleeding is from the retained rectal cuff (cuffitis). With your symptoms I would call back and insist on an earlier appointment, even if it is just a consult (no scope). Sounds like you need a new plan of action. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Fecal transplant in cleveland
K Krazy1
Krazy1 I will keep that in mind. Thank you very much for your post . I hope you and yours are doing well. [ more ]
AllyKat I did a transplant at home using my son. I did it for a week. For pouchitis . It did not do a thing and I found it very time consuming as you need to hold it in and with a pouch its a challenge. I did not get him tested as he was my son. I don't recommend this but I was desperate and Did not have the extra money for testing. My doctor gave me a prescription but his insurance did not cover. Now for c diff that was different although the antibiotics kicked in before the transplant was... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Rectal Pain
B bankshot5647
bankshot5647 My GI is Dr. Dan Smiley out of Bristol Ct. My surgeon was Dr. Saumitra Banerjee with offices in Plainville, South Windsor and Bloomfield. Dr. Banerjee would be the one with the most experience in J-Pouchs. He has a well informed web site. [ more ]
ElizaB I am also from CT and looking for a GI. Does anyone have any recommendations? [ more ]
jeane You are from CT too? Do you mind if I ask who your GI is? A few of us have lost ours and are looking for someone experienced w jpouches. My GI did mention the shots, but my surgeon did not feel they were a good long term approach. Not sure if mine in a small internal skin tag or ulceration. Every time I have been scoped my GI is not concerned, but it can be very annoying and painful as you know. Personally, I find rectal meds do nothing for inflammation in the anal canal. I do get some... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Elevated calprotectin level??
V van
van Hi everyone thanks for all your replies. I don't think I have pouchitis because I don't feel as sick as I did when I last had pouchitis. But I don't feel right. And every few weeks I get abdo pain and bloating which can last up to a week. My GI dismissed these symptoms as IBS. Which I've never had since having the jpouch. So I was actually glad when the calprotectin came back elevated because it proved that something was wrong. I did ask about medications but the reply I got was he couldn't... [ more ]
rachelraven My kid's GI uses the calprotectin level, if elevated and symptomatic, as a bridge to investigate further. No "specific" number = changes in treatment without looking at the whole picture, of course. But the test IS specific to the gut. For instance, a patient with only IBS will have a normal level. The test does, if elevated, show *some* sort of gut inflammation. If symptomatic, an elevated level is a bridge to, say, re-scope the patient, perhaps. [ more ]
boy's mom p.s. Plutot - did your dr advocate not treating up to a certain level of inflammation? Thanks. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Bleeding a lot 3 days after dialation
B Boda
Boda Thank you Spooky. We are back at the hospital and they are running blood tests, stool tests, an MRI with barium and doing some antibiotics. We are scared and frustrated. We want her to be able to move forward but haven't been able to get past the bleeding. I think we are at a point now they have to get this figured out! [ more ]
Spooky Boda, So sorry she is still going through this. As you can probably tell from some of my other replies, I went though almost 18 months of similar frustration with bleeding and no specific explanation or solution. All I can say is, keep trying to advocate for your daughter. Try to get a scope arranged WHILE she is bleeding as this is the best chance of catching the source. If she's asymptomatic while undergoing the scope, nothing may show up (as is what happened with me over and over again). [ more ]
Boda Sad and upset. She is still bleeding had to stop antibiotics. They were making her sick to her stomach. Please if anyone has any ideas. I want to help her so badly and I don't know what to do! Please any suggestions. This has been so frustrating. What is a sinus? What about Cdiff? Are there tests I should insist on? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Sex after J-Pouch
A abillusmc
CTBarrister I have used half a 20 mg pill of Cialis for quite some time and it is highly effective. Viagra and Levitra both gave me headaches. [ more ]
BillV I have used Viagra regularly for a number of years and found that ÂĽ of a 100 mg tablet does the job and I have had no side effects. I did not find Cialis to be that effective for me. I wish you the best with your social life. [ more ]
Scott F I don't can't see any particular problem with J-pouchers using ED medication (Cialis, Viagra, etc.). Have fun! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Blockage?
K Kastuhlm
Mysticobra Jan. Sometimes I find it hard to have a bm and I will mix a little... Not a full dose and it helps get things moving. I have maybe done it three times over a nine ten month period. When I had my illeostomy I had a blockage and was told to take it and it was taking too long to work and they told me to go to the ER. Well as soon as I got a mile down the road it broke through and the bag poofed right up full. I had to stop... Or my wife did... Five times on a 30 mile trip. Thank goodness it was... [ more ]
skn69 Can you keep any fluids down? One of the dangers of a blockage is vomitting + dehydration...if you cannot keep fluids down then you will get dehydrated and that can be very dangerous. Do you have a fever? 'contractions'? I usually get a sudden pain, can then keep nothing down, nausea, vomitting, hot/cold flashes and serious contraction like cramps when my gut is fighting to push everything out but cannot get past the blockage. I walk a lot, roll back and forth or side to side on my Pilates... [ more ]
Jan Dollar Miralax is OK, but never take purgative laxatives if you think you might be obstructed. If you have a twisted gut, it can turn it into a surgical emergency. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
cAr accident.. hospitalized
LesandiegoLesandiego
TE Marie Finally out I hope the insurance company doesn't add to your stress! Thanks for updating us. I hope your recovery goes well. [ more ]
skn69 Congratulations on your homecoming! Its about time! Glad to hear that someone is coming to take care of you while you recuperate. Keep us posted on how it goes...Are you still casted? How are you feeling? Sharon [ more ]
Lesandiego I have been in the hospital and SNF for a full month, but I AM FINALLY GOING HOME TODAY! This accident has been a major setback for me and very expensive endeavor with having to buy a new car (who knows when I will ever be able to drive again), loss wages, deductibles, medical equipment rental, PT, and providing airfare and living expenses to a friend to take care of me 24/7. I know that my personal injury claim will eventually reward me handsomely, but darn it.... none of this was in my... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Problems with bowel movements as well as back pain
S Solomin
TONY LAVICTOIRE Hi Salomin, I don't know if this is still a relevant post but here's my suggestion to you. I've had the J-Pouch surgery in 1992 and I had the same issue you described with very little (liquid to PB textured) feces coming out no matter how hard I'd tried. My surgeon suggested that the autonomous nerve linking my internal anal sphincter to the brain had possibly been cut during the J-pouch operation. He prescribed the use of a catheter (every time I felt the"push") to empty out the pouch. [ more ]
TE Marie Then I hope Jan's suggestions help you and relieve your straining. I believe if you strain too hard your j-pouch can prolapse and that sounds like horrible pain to me [ more ]
Solomin I might be able to do something, but unfortunately if I make any noise whatsoever, I face being blackballed by all the hospitals (in Quebec) and then nobody would operate on me. I could challenge the hospitals in the court system, but these hospitals have unlimited funds while there is no guarantee I would win anything, and again I would not end up having a surgeon. The media is interested in my story, but I cannot jeopardize pending surgery. -Solomin [ more ]
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J-Pouch ForumsHelp! Need advice now!
weight loss
winter wishwinter wish
skn69 I looked like a moon! No way I could have lost weight if I had tried...took years to get the weight off for me...are you eating or are you hyper? Some rare cases get so hyper that I guess it could happen...where is your appetite? If you are eating like crazy and still losing weight then I would tell your doctor...there might be something else going on that the cortisone ticked off. (I am thinking hyperthyroidism) Sharon [ more ]
rachelraven Wish I could tell you something, but I'm like the more normal/common group who *gain* weight on steroids, partly because I can't stop eating when I'm on them! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Night time leaks
PP Pat patsy
mainebound Hello, I had night time leakage nightly, and sometimes more than once during the night, for over 5 years after pouch creation. Then, for some reason, it just stopped for the most part. I did not change my eating or medication. My surgeon thinks maybe my sphincter muscle got stronger and that my pouch just matured. I maybe will have one accident every four or five months or so, usually if I have taken something to help me sleep. I still get up at least one time every night to use the... [ more ]
Ljz I sometimes have leaks of soft stool, but never when stool is liquid. Wierd. Seems like once a day have a 1-2 hour window with leaks, so I visit bathroom frequently during this time, and of course hope I'm at home. But, recently noticed that when I use a good amount of Ikex paste, more than a pea suez drop, and also tuck a make up oval pad up there that I go a long time without leaking or having BM. Like 4-7 hours- great for night! Thinking - does this relate to what KOB's surgeon suggested... [ more ]
Txgal58 Kevin, it's been 17 years so I may not be 100% on this but it was probably about a year before I was only going 4-5 times a day. Remember, everyone is different. Diet worked well for me for a time, using a Benedryl at bedtime has also been effective, I've had off and on success with Metamucil and Peptobismal, switched between Lomotil and Immodium and last year added the Tylenol #3 at bedtime with 2 Lomotil. My Dr has suggested tincture of opiate, but that sounds kind of scary. My leakage was... [ more ]
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J-Pouch ForumsHelp! Need advice now!
What's going on?
Mema 1Mema 1
mainebound Hello, Your symptoms sound so much like when I get pouchitis. Unfortunately for me, I cannot find any rhyme or reason as to what causes a flare. I have kept a food diary and there is no real pattern. The only thing that will help my pouchitis is either flagyl or cipro. I have found that if I eat Greek yogurt at least one time daily, the bouts of pouchitis are farther between. Becky [ more ]
Mema 1 That's interesting...I was wondering what one would do if they had SIBO, now I know. Thanks ever so much again. Only problem now is I'm wondering if that's what it is or what cuffitis as CJB mentioned. There's never an easy solution for this Jpouch is there? Well, I suppose it could be worse. [ more ]
Scott F The decision to use doxycycline was based on a diagnosis of SIBO. The diagnosis of SIBO was (mostly) based on the incredible amount of gas. Doxycycline gave me a nasty bellyache for the first week or so, but that cleared up. Good luck! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Amitriptyline and shakiness
Mema 1Mema 1
Jan Dollar Sorry I did not respond sooner. But yes, often, with time, your body acclimates and the side effects tend to resolve. Jan [ more ]
TE Marie I was put on it for my daily migraines. I went up in dose gradually as 10 mg for a week, then 20 mg for a week to eventually 100 mg. It took me 10 weeks to get up to the dose my new neurologist prescribed. I decreased off of an antidepressant I was taking the last 4 weeks so that when I got to week 10 I off of it. Simultaneously I decreased the medication I was taking for the migraines. The net effect was I went from taking 2 medications to 1 medication. That one medication is working out... [ more ]
Mema 1 Just curious, if I stayed on the med, would I eventually be able to tolerate it, or would I never be able to? Jan, do you know? [ more ]
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J-Pouch ForumsHelp! Need advice now!
advise
U UjohnjC
Scott F I haven't been to Cleveland Clinic, but plenty of other folks here have. [ more ]
UjohnjC been thinking about doing that scot.have you seen him?hard to get in to see him? [ more ]
Scott F If I had a sinus tract after more than a year of waiting for it to fix itself I'd probably plan a trip to Cleveland Clinic to see if Bo Shen and his colleagues could get me fixed up. Travelling for medical care can get pretty expensive, though. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Help! At wits end!
B Burrism1
aka KNKLHEAD I have also had a terrible time taking Iron pills in the past. When I was a young lad with colitis the doctor prescribed Iron tablets and it felt like it ripped by guts apart. Yikes! While I don't need iron now, I did take Black Strap Molasses for Iron, which was much better for me. I realize you are over the hump, continued good and better health! [ more ]
TE Marie Fantastic [ more ]
Burrism1 Thx everyone. Such a great resource! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Kenalog for cuffitis
GW Guy with j pouch
Ljz I am still waiting approval for my infusion of Entyvio. Still struggling with cuffitis, though pouch is great. Have suspicious "ulcer" just inside anus for which I'm trying topical dental paste supposedly Kenalog. Has anyone had any success treating cuffitis or Anusitis or to rid if ulcer in that area using an injection of Kenalog, or anything else? If you've had Kenalog injection, what strength was it? I read where people are using/ rotating antibiotics for Cuffitis. My doctors prescribed... [ more ]
Ljz Entyvio is Vedolizumab- new infusion drug approved July 2014. Works better for UC than Chrohns but not really optimistic that it will help. Also, takes 8-12 weeks to kick in. Waiting for insurance approval- thrn I believe I'd do a couple starter doses, and every 8 weeks thereafter. Hopeful, but ... Laurie [ more ]
jeane What is entyvio? Is that entocort? I too have a non relenting ulcer in my anal zone. I thought it was due to my fissures. I'm going to get it checked out in full at next scope. I have had ongoing anal issues since my surgery over three years ago that I never had with UC. It's very frustrating. Most if the issues are due to a recurring stricture at the anastomosis resulting in lack of blood flow to the anal area. The only real fix is to advance the pouch. [ more ]
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J-Pouch ForumsHelp! Need advice now!
surgery decision is it Crohns or UC
K kariA
rachelraven Regardless of what I have in the "now," the decision for J pouch in 1991 was the best I had (and I am honestly and for the most part *still* happy with my mostly decent pouch function, overall). It gave me my life back, and 2 decades of nearly zero issue and no meds. Again, my pouch is good; it's the perianal issue that cropped up with some newer IBD stuff that put me back on the map with a GI doc. I didn't even HAVE a GI doc for 20 years after surgery, that's how good things were rolling! [ more ]
kariA thank you for your responses. Met with surgeon today. he is advocating for Jpouch. he and GI's think its definitely UC, but what you said Rachel resonates with me. Scott, why not try Entyvio. because it still only 50 percent max success rate and i dont know about side effects. In addition, for the first time my GIs have said "surgery" because of my situation. Rachel, i have had 13 colonoscopies since 2001 and about 10 GIs doing those colonoscopies. i've heard so many explanations of why its... [ more ]
CTBarrister When I had surgery in 1992 I had dysplasia in the colon and an unequivocal UC diagnosis. Regardless of diagnosis the colon had to come out, and my surgeon reported to me it was dissolving in his hands as he removed it, due to the inflammation of it. I have had a J Pouch 22 years now, chronic pouchitis for 20 years, and in 2008 they discovered inflammation in my lower ileum, in a somewhat "irregular pattern." CT and MRI Enterographies revealed thickening of the bowel wall due to inflammation... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Adhesions/pain
J Jpoucher4life
skn69 4life, Surgery is still surgery, whether open or laporoscopic...it still involves anesthetic, risks etc...So I wouldn't walk into it without good reason...But for me debilitating pain, occlusions, constant blockages etc are very good reasons to get adhesions snipped. I prefer my laporoscopic surgery (and the surgeon) because even though they are still rooting around in there for a while (3.5hrs for me) and pushing things around you do not have to deal with cut muscles, suture lines, scars... [ more ]
Jpoucher4life Sharon-my husband and I agreed that I need to have something done to see if we can find out if anythings going on, just for some peace of mind, because yes it is a regular occorance not just a one time thing! [ more ]
TE Marie My surgeon noted existing adhesions, from my prior female parts surgeries, in his colonectomy surgical notes. Several other doctors have felt them. The first time I saw my GI at the Mayo clinic he asked me what I did for the pain they caused. My PCP treats my pain because I see her at least 4 times a year. I had incisional hernia surgery 6 months after my take down surgery for a total of 5 abdominal surgeries. See if you can feel them with your hands. I've had my husband feel them before. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Still feels the exact same before my surgery
J jadon1983
jeane Jaden , You should not be suffering like this. Medications like anucort , entocort, antibiotics and even prednisone could help. As a last measure they can remove the cuff and hand sew the pouch. I also have chronic cuffitis but all of these meds at various times have helped me survive many of your symptoms since my reversal in 2011. Good luck. [ more ]
jadon1983 Also its been this way literally since my bag reversal surgery back in 2009. [ more ]
jadon1983 I go to a new GI on the 15th so hopefully we can figure out what is wrong and get it taken care of asap. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Serious Question
D DWils13
Jan Dollar I'd call your GI back. Some bleeding after a scope is normal, even more so if you have inflammation. If you want to call your surgeon for reassurance, that is fine, but I doubt you need to travel to see him. This sounds like a maintenance issue (GI) not a surgical issue. Jan [ more ]
TE Marie When my cuffitis is raging pouch scopes make things worse for a while. The scope stirs things up. If I were you I'd contact my GI and/or your surgeon. I don't understand who did your scope. It sounds like it was not performed by either of them. Sorry you are feeling so bad. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Exercise and rectal pain
M MSM
TE Marie I understand how painful walking can be too. Part of my problem is my body has tried to compensate for my pain by doing things like involuntary going into a fetal position while I'm sleeping. These sorts of things makes my fascia try to compensate and grow wrong. I have fibromyalgia too which complicates things further. It's difficult for me to explain this all but she is helping me "open" up by doing simple exercises - like breathing ones. My body's kind of hunkered or turned inward. My... [ more ]
Meg1234 Thanks a lot for your comments. Maybe I can try ART- Even walking for more than 15 minutes can give me pain so I feel like I really need to find a solution. thanks [ more ]
TE Marie You could also have adhesion/scarring pain. I've found an ART (Active Release Technique) practitioner and am undergoing external treatment of my adhesion's. I can tell that it's going to help with my pain. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Anal irratation
A abillusmc
abillusmc Also vasoiline is very inexpensive at Costco and better than zinc oxide. [ more ]
abillusmc I am 71 and had surgery 2nd stage iyr ago and 3rd 8mos ago. I was getting ready to give up with my 25 plus BM a day All the problems in the world I saw on here that tincture of opium was used by some I got morphine sulfate instead. Its cheap and Costco sells for $39 what will last 2mos. It works BM are about 10 a day but solid and no anal pain. I am in the gym and have a life. Do not give up [ more ]
Krys777 Thank you! That's why I am giving it another 3months before giving up. Here is to hopeful happy jpouchers [ more ]
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J-Pouch ForumsHelp! Need advice now!
Biologics
C cas
KOB I can only speak of my experiences with biologics when I had a colon and active UC. I had no response from Humira and a couple of others IIRC including Remicade? Regardless, I had no adverse reactions. I had 100% response from Vedilisimab (you guys call it Entyvio). The hospital staff were sort of amazed. I went into complete remission almost immediately, ie. no later than 3 weeks after the first monthly infusion. At that time I was steroid refractory, so nothing was helping the UC. I was on... [ more ]
rachelraven So I'm not sure the biologis are as awful as some think. Is it better to put your body thru 5-7 meds to get to remission, vs. one? It's just a thought. [ more ]
AllyKat Why don't they start you on xifaxan or pentassa before going to bio's? I have a pretty severe case. I had a bad reaction to Remicade although I did get a 3 year remission on it. This last one I got me into remission using Budesonide, pentassa, augmentum, and Canassa. I weaned off of everything rather quickly and switched to xifaxan as maintance. There r so many other things to try first. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Liquid Stools/Gas
B BMBoy
ks1905 So you are not being treated for Pouchitis? Why would they prescribe Vanco first if you are negative for c.diff. Are you using a family doc? Or a GI or surgeon? Your symptoms sound like my current symptoms with pouchitis. You might want to try Flagyl, it treats both C.diff and pouchitis. [ more ]
jeane Sounds like pouchitis. I never get blood or fevers with it. I just get a lot of gas, awful cramping, loose stools and urgency/ rectal pressure. Antibiotics help symptoms within hours for me. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Ache in left butt cheek??
B bethany365
Holly M It will be 3 yrs since my surgery in Feb and I used to get that ache in left butt cheek all the time, others said theirs was in tailbone area. Now mine only really bothers me if I start having to use the bathroom alot more than usual. It is a sign for me now that I am in a little "flare" as I call it. [ more ]
Scott F It could be piriformis syndrome, which is surprisingly common. There are stretches you can watch on YouTube that can help considerably (if that's what it is). [ more ]
Lambiepie Do you think it could be sciatica? I get it occasionally and it stays localized to my buttock, not the common pain that goes down the leg. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Extreme bloating, gas pains after anastamosis
M MaryMomof3
CeeeeCeeee Also, gas rises. Assume "the position"! Get on all fours and put your butt in the air. Try lying on one side or the other. Or, lie on your back with your butt elevated on a pillow. In any of those positions, try coughing hard but be prepared by having something under you to receive a "wet one"! It takes trial and error. It does get better. Really! [ more ]
Judy1 Hot bath. heating pad and WALK, WALK, WALK!!! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Help/advice
C cherylzahajko
ValerieK Sounds normal to me! Your pouch will take at least 6 months to mostly adapt, and then a full 2 years to get as good as it gets...from my experience and what the doctor told me. Metamucil WAFERS are very helpful...but, it has to be the wafers. Keep in mind that all people normally pass gas while they are sleeping, so it may be that a little leakage at night is a reasonable event. At best, I can go 4 hours while I sleep. I leak at night mostly when I have pouchitis (which has been pretty... [ more ]
Arnaud Could be due to incomplete emptying of the pouch. In this case, emptying the pouch thoroughly with a catheter before going to bed could help. See the thread "self-catheterization" for details ... Good luck, keep us posted [ more ]
Mattenheimer My friend, it is very normal. It took me about 6 months to see major results. Hang in there my friend. It's a long journey, but for me it's bit'sso worth it for me. My surgery was in 1996, and I got up 3 times last night. It's not always like that, but sometimes it is. I Thank God for my surgery as I've gotten my life back with some ongoing issues. Way better than the daily pain I lived with for years. Praying for you. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Fistula at takedown
JeffHJeffH
Kelsie After watching and dealing with everything my daughter went through and is now going to a perm ostomy this would be my suggestion. Have the surgeon fix them surgically and wait for takedown. Give them time to heal and see if any more pop up. I don't think I'd give up completely quite yet. But it is your call and you know when enough is enough. Everyone has their own threshold. My daughter has seen enough of her life wasted with pain and surgery and has her mind made up. Removal is set for... [ more ]
JeffH Thanks for all your responses. Met with the surgeon again this week and he seems confident he can close them based on his past experience. He said he would only proceed with the takedown if it was very straightforward. More likely it would wait to ensure that no more fistulas form. [ more ]
desisn00ps I would cut my losses. Fistulas are very difficult and in my case, once one formed from the pouch, more kept forming. The one thing I can say though is that I tried everything and have no regrets whatsoever. Think long and hard about this because maintaining a j-pouch that has a tendency to fistulize is difficult and painful. Good luck! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hemorrhoids and leaking
shakedownLgshakedownLg
Jan Dollar One reason they might prescribe the enema over the suppository is cost. There are generic mesalamine enemas, but not for the suppository. Your plan may require failure of cheaper options before expensive ones are covered. Also, sometimes those suppositories can cause local irritation (they are pretty large). Jan [ more ]
shakedownLg I was wondering why they would give me an enema rather than suppository. I have a call in to my DR now and I am hoping to get on a round of Cipro too. I am starting to think Pouchitis is an issue right now as well. I will ask about the foam too. Thank you for your suggestions! [ more ]
Jan Dollar Mesalamine is not a hemorrhoid treatment. It is for UC, so this confuses me, unless you have cuffitis that is making your hemorrhoids worse from the nearby inflammation. How about trying mesalamine suppositories (Canasa)? Easier to retain than the enemas. Another option is rectal cortisone foam (Cortifoam). It does sound like you have pouchitis too. Have you tried a course of antibiotics? Jan [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
Going on Day 4 of takedown - feeling horrible
M MaryMomof3
TomU ❤️
lhh65 MaryMomof3 I hope things are starting to improve for you -- because I can literally feel your pain. I had ileus after my takedown (and two surgeries following that as well). Besides the ghastly NG tube, which they had to put in post-op, they also started me a few days later on TPN (total parietal nutrition), which they feed you through a PICC line. Though it was more than a week after surgery, it seemed to help me turn the corner. I had not eaten anything for almost 10 days by the time they... [ more ]
skn69 MaryMomof 3, How are you doing today? Is it calming down? Is it getting worse? Has the ileus resolved yet? All of my original surgeries up until 2007 went well post op with no ileus (I had over a dozen)...my only problem was healing and dehyssing. In 2007, 10 days post op and just as I was starting to feel better, I got a (what I thought) was an obstruction after eating a bagel. It may have been my 1st ileus, will never know. 24hrs of hell at home alone and terrified until my uncle drove me... [ more ]
See all 7 replies...
J-Pouch ForumsHelp! Need advice now!
Strange pains
H Hoping
Hoping Thanks Lambiepie. It is comforting to know this is not uncommon. I just did not realize so much pain would still be involved. I really think I may be on the edge of a flare so I am going to get back on the flagyll and see if that helps. GI had given me bentyl for cramps, but it really does not seem to help. Getting a little discouraged that everyday at the same time I just want to curl up in a ball and sleep! [ more ]
Lambiepie Yes, Hoping, that is how most of my days go. If there's anything urgent I need to do, I try to do it earlier in the day. I'll even try to walk my dog earlier because I never know what the later hours will bring. I'm not sure why this happens, maybe just more food in our systems that our pouches are reacting to. I cut out most dairy and that seems to be helping. [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Pouchitis? Or something else?
KarenchaseKarenchase
Jan Dollar Hard to say. Could be pouchitis or the flu. Since it was preceded by cold symptoms I would be suspicious of the flu. Enen if you got the flu vaccine, it is not 100% effective. We dehydrate faster, so don't hesitate to go to the ER or urgent care if this keeps up. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Using Probiotics
L Ljz
Scott F Laurie- I use both VSL and Florastor. The VSL seems to definitely help with pouchitis. I have no idea if the Florastor is helping keep C diff away, but I haven't gotten C diff in spite of long-term Cipro... [ more ]
See 1 reply...
J-Pouch ForumsHelp! Need advice now!
Weight?
D douglasj
TE Marie Re: Weight? [ more ]
douglasj Thank you for your kind, informative, and thoughtful response. [ more ]
TE Marie I'm your height and weighed as much as you do when I had my surgeries. Plus I am a woman. I asked my surgeon if weighing as much as I did was going to be a problem and he smiled and said no. He then joked about how he could loose some weight too - he's not that heavy. I had my take down 8 weeks after my first surgery. I lost 85 lbs subsequently, in around a year. I wasn't hungry and when I ate it hurt. My Internist and husband were concerned with my rapid weight loss but I wasn't worried. I... [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Serious Butt ITCH
ATXGuyATXGuy
Former Member ❤️
loralie78 ❤️
Txgal58 Completely understood! Have you tried Ilex? A little outside and just inside the rectal area works great for me. Also cool soaking baths. Seems like we all have to find our own combination! Best wishes! [ more ]
See all 15 replies...
J-Pouch ForumsHelp! Need advice now!
lower left abdominal pain
J JessGoguen
rachelraven This might have nothing to do with you, and it very well could be something more serious, but I have a REALLY tight IT band on the left, and when it's raging at me, I get this sort of "hip" pain that even makes going to the bathroom painful, since I have to do more pushing to go than an average person, I suppose. I also had to resort to birth control, because ovulation would KILL me on that side, too, and cause referred hip pain/IT band pain there, too, that worsened during that time and... [ more ]
JessGoguen Thanks for the response. Sucky thing is that my pancreas is slightly inflamed and my bile duct shows narrowing however we are not doing anything about it right now. I will repeat an MRI in 2 months. I am trying to cope and avoid the ER. Will call into my GI tomorrow and see what's what. [ more ]
Lesandiego Pancreatitis. Go have your blood drawn and tested. Lower left side back pain was my only symptom and it got progressively worse. [ more ]
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J-Pouch ForumsHelp! Need advice now!
K-Pouch catheter used during pouchoscopy--complications?
John95John95
John95 Thanks for the input, Jan. I haven't felt anything for the past couple days. I've been taking sitz baths so maybe that helped. I assume the abscess created some sort of internal tract, but it never reached the surface because it was drained into the anal canal. When do these tracts become epithelialized and therefore nearly impossible to heal without surgical intervention? [ more ]
Jan Dollar Abscesses are fairly notorious for reforming, so you are right to be somewhat concerned. Be vigilant with the sitz baths, as that is pretty much all you can do at this point. Don't be shy about returning to your surgeon if this escalates, but you have time to wait and see. Jan [ more ]
John95 Well, I stopped the antibiotics about four weeks ago and had been feeling pretty good ever since. However, a couple days ago, I started feeling mild-moderate pain in the same area. I haven't detected any lump or swelling, so I'm not sure what to make of it. I've taken a couple sitz baths today. Hopefully these uncomfortable sensations are transient and not a sign of something brewing… Happy Thanksgiving to all in the USA. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Advice....
B boyleb18
skn69 A very long time ago when they created my k pouch and left the colon in, I had the same problem...any time that the colon is left in place it wants to do its job, contract and empty out. I felt like it wanted to push itself out along with the (very foul smelling) mucus. That lasted until they removed it but I still have pressure and the occasional pain along with an uncomfortable feeling. Things should straiten out once the j pouch is created. You will be hooked up and have 'normal' function... [ more ]
boyleb18 I have had a consistent pain for at least 3 days with the pressure. Usually I get pressure then have some mucus discharge which is normal...then that pressure/urge goes away. This isn't. [ more ]
UjohnjC i waiting for takedown also i get that sometimes also not any pain though just pressure most days are good happens every once in awhile then goes away [ more ]
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J-Pouch ForumsHelp! Need advice now!
Fistula - Seton
C CROHNMOM
rachelraven No. Mine was much less intense than that, though it was NOT comfortable, and before the seton was in it hurt a lot more. The seton was in for 19 months, so the tract is more mature now. I never had discharge from the anus, only out of the fistula itself, which sits right on the anal area. Poor girl, I hope the next meds help her. [ more ]
CROHNMOM Thanks for your response. She was on remicade for 5 years but built anti body which explains why abscess and fistula. After her fever goes down, she'll start with humira and 6mp. The discharge is coming through her fistula and the rectum. The pressure/cramping is horrible when there is rectal discharge. Did this happen to you with your fistula? This pressure cramping and rectal incontinence is really taking its toll. Any input from anyone will be helpful. Thank you. [ more ]
rachelraven When I had my seton in, it stopped the cycle of abscessing/bursting. Occasionally would get discharge that felt weird coming out, but wasn't painful after the seton. Even with it in, I always had mucus discharge. It's out now, and we are trying a biologic to see if it'll close on it. The Medrol taper helped the most, it felt absolutely normal, so I had my seton removed, and had two wonderful weeks. Now, I'm on the fence and it's vacillating daily. Might have a few good days, then a not so... [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Lung Disease caused by UC / Pouch has UC / Pouchitis and Cuffitis
D DPKmalibu
TE Marie My experience at Mayo in Rochester has been great. My GI has referred me to 2 other departments and they all work together in treating me. I haven't had your health problems so don't know about trials. If I were you I'd check out both Mayo and CC. I'm sorry you are going through what sounds like hell. I hope that you can get better help. I've never heard of UC related lung problems before. Is it the case that your autoimmune system is jacked up and attacking other parts of your body or is it... [ more ]
skn69 DPK, No advice...just all of my sympathies in dealing with this nightmare. I know how hard certain medical situations can be...my only advice is to keep knocking on doors, never give up the good fight and do not take No for an answer. Not sure if there is anything that I can do to help but I do live in France and if there are non-perscription creams, foams or lotions that can help I would be happy to do so. Hang in there, Sharon [ more ]
Jan Dollar I do not have your issues, but I do agree that a trip to Cleveland Clinic or Mayo might reveal other treatment options. In any case, a second opinion is warranted. Jan [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Blood in Stool
kaitlinmckaylakaitlinmckayla
Anushka Kait, Thanks for posting this question. I am also bleeding and have just realized that I probably have been bleeding for a long time and that this is likely the reason I am so Anemic, with my ferritin levels dropping quite dramatically between IV iron infusions. So I will be watching replies to this post. I also have a lot of anal pain every time I go, so am guessing the blood might be associated with that, but I don't know. I have a scope scheduled for mid-January, but will urge my GI's... [ more ]
Jan Dollar Most likely this is cuffitis, an inflammation of the retained rectal cuff. Sort of like UC. You also can have regular pouchitis symptoms of increased frequency, urgency, diarrhea. I had UC flares throughout both of my pregnancies and both my sons were fine. You can use mesalamine products during pregnancy. You need to contact your GI or surgeon. Jan [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Severe pouchitis-next step Remicade
Grace2Grace2
kaitlinmckayla what are the symptoms of pouchitis? [ more ]
desisn00ps Remicade is def a silver bullet but be careful with developing antibodies to it. I went into anaphylactic shock after getting Remicade because of the antibodies I developed to it. Just make sure your doctor does regular blood work to check for that. [ more ]
AllyKat Thanks Rebbe, I already upped my anti depressant. Sorry, I didn't realize I was posting so down. Thanks for being a friend and concerned. Lots of stressful stuff going on right now, probably not helping, but yes, I'm sick of this whole situation. I have so much to do and I'm stuck in bed today. [ more ]
See all 18 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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