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J-Pouch ForumsHelp! Need advice now!
Sharp pains from Stomach down to groin
EmmaNZEmmaNZ
skn69 Emmanz, So sorry...no idea...it could be anything from gas to a minor blocage to adhesions building up on through... Do you have any chills or fever? How is your output? Normal or not? Can you eat normally (a great indicator)? Can you get a heating pad to see if it will help or a hot bath? No matter what the pain it is usually my go to method for easing pain... My usual reaction to unusal pain is try to ride it out if there is no fever or severe symptoms and apply heat...if things get worse... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Surgery -2 Step or 3 Step?
Becky18Becky18
rachelraven I was hospitalized and on high dose steroids, TPN, and still bleeding and had a two step. My surgeon said he'd never do one steps ever again as he had one patient do extremely poorly, and one was one too many. I was only 19, though, and if you will, besides a rotten colon, otherwise healthy. That sounds bizarre but it kind of was true. Youth has a way of making everything less awful, sometimes. I had 4 months between surgeries. Everything went classically well for me, and I was commuting to... [ more ]
YogiLori I had the three phase surgery. My surgeon wanted to do the two phase as I had a spot on my colon they were concerned was a possible cancer. To be removed they had to build the pouch right then. I thought it would be too much for my weakened body. It's a long surgery. My surgeon agreed to do the three phase and left the part of colon with the spot (you have to have part of the lower colon remain to have viability in the area you are attaching to, they then remove it in third). I was only... [ more ]
skn69 How open is your surgeon to discussing options with you? Some are willing to listen to your arguements and reasons and then may consider alternate options if they think that it is possible and that it will not put you or your health and future pouch health in danger. Mine was in the long run and we wanted to do my k pouch in 1 shot but ended up with 3 steps due to how weak I was and what he found when he got in there. I wasn't happy but the end result was worth it. Sharon ps. Writing down... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Could it be Spondyloarthritis?.
MB Mountain Baker
rachelraven Illnesses often intensify regular pain, especially joint. If it's a virus, it'll just have to run its course. I'd do the PCP thing first. [ more ]
Jan Dollar When I was diagnosed, my back pain was predominately sacroiliac (upper buttock). It radiated to my hips. I couldn't even roll over in bed. It didn't matter what I did, it persisted. When my rheumy conducted my history, she said the fact that I had decades of various tedinopathies (particularly Achilles and plantar fasciitis) and UC, pointed to enteropathic arthritis. All my blood studies (RA, HLA-B27, ANA, etc. were all negative). If your pain does not resolve, definitely seek a rheumatology... [ more ]
Mountain Baker Thanks for responding. I have had back pain for years but nothing like this. I'm hoping that it is just a virus. Theresa [ more ]
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J-Pouch ForumsHelp! Need advice now!
Obstruction? Stricture? Pelvic floor dysfunction? Unsure
A aliiien
Jan Dollar Jake, there are oodles of posts here about diet, and I probably am the worst person to ask for advice on that. It is mostly because I am not a believer in a "j-pouch diet," but more of a diet that works for my j-pouch or your j-pouch. I truly do not worry about it and if something causes problems, I just avoid it in the future. After 20+ years with a j-pouch I try to ignore it as much as I can. I could tell you to eat this and avoid that, but it may be completely wrong for you. The main... [ more ]
aliiien Hi Jan! It's been about eight months since I saw my GI; I was scoped because I was having symptoms that didn't match what other episodes of pouchitis I'd had before, although that turned out as only pouchitis as well (whew!). Everything looked fine, and he biopsied a few pieces which were also fine. I have a host of things non-GI related to see my PCP about anyway (appointment is today), so I thought I'd go to him first as a front-line in the hope that I'm just missing something and it's... [ more ]
JakeG88 Gastrointestinal . Yes I believe there is a very intelligent one not far from me. I will be requesting to see her In the next day or two. I'm cutting more things out of my diet things that usually bothered me more. Would you know of a few different foods that might be easier on my system. I'm all worried an paranoid and I know that's worsening things. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Lap Band after J-Pouch
R rachelintx
CeeeeCeeee I had wonderful results joining Weight Watchers because there were so many choices of foods I could eat and I never felt hungry! Basically, I bulked up my meals with lots of veggies! Since I had restricted my intake of veggies while in the throes of U.C., being able to eat them since my J-pouch surgery has been wonderful! I don't even like to cook so eating out was not a problem. I lost a lot of weight and managed to keep most of it off! It's been over ten years since my takedown. Best wishes! [ more ]
Former Member I was thinking about lap band surgery just so I can reduce intake which in turn reduces outtake. Problem is I don't meet any of my insurance company's requirements for it, such as: HUMANA’S PRE-APPROVAL REQUIREMENTS Humana requires the criteria below be met or exceeded in order to cover weight loss surgery. Body mass index of 40 or higher OR a body mass index of 35 to 39 with at least one comorbidity that may include: Hypertension Type 2 Diabetes Severe Sleep Apnea Joint Disease A letter... [ more ]
rachelintx I saw my colorectal doctor yesterday and HE brought up weight loss surgery - not me. He suggested I seriously consider the Sleeve surgery. I told him I have thought about it but wasn't sure if I was a candidate since I have a J-Pouch. He said, "Oh you are definitely a candidate." So...lots to consider here. Losing the prednisone weight is just awful and discouraging. I always have a fear of those worst-case scenarios where surgery is concerned. I have two precious kiddos and I want to be... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Obstruction
JP janice pollard
debbieod Hang in there i am 8 years out and every day is a challenge [ more ]
janice pollard I can't begin to tell you all how much I appreciate the responses and all the knowledge that is shared. I don't feel like I have bounced back since my admission in March. As you know , it's always one day at a time. I take monthly B12 injections because of the ileum involvement. Sometimes I feel like being me is a full time job. I appreciate being part of this group. Sometimes I still feel really scared. [ more ]
njd One possible reason for being extra run down could be low Vitamin B12 levels. I've had my pouch since 1999, but only found out last year that j-pouchers are extra-susceptible to B12 depletion, because most of it gets absorbed in the last 2 feet of small bowel - which many of us no longer have! My energy levels and ability to heal faster bounced back considerably after doing B12 shots for 6 months. Anemia and low iron are also frequent j-pouch side-effects that can contribute to serious... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Dark thick stools with pressure
N Nidhi
Jan Dollar Cuffitis (UC in the retained rectal cuff) is a pretty common complication, and one of the first signs is bleeding. Left untreated, symptoms progress to be like pouchitis. It is not urgent, but you should be examined. Jan [ more ]
Scott F As Jan wrote, we could start guessing, or you could see about an appointment with someone who can do a proper examination. There might be a long wait for an appointment, though - will you be in NY for a while? In any case, the answer to your question is "maybe." The change is of more concern than the small amount of blood. Has your diet changed much? Could the pressure just be gas? [ more ]
Nidhi Stools are dark brown . And pressure is not painful . But it is something which never happened before. I got scared on seeing the blood on my finger after my self examination . Is the blood really a matter of concern or it is possible that I might have scar th something and that why blood appears . [ more ]
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J-Pouch ForumsHelp! Need advice now!
Blood in stool after takedown
W Willie
Jan Dollar A bit of random bleeding is fairly common, even early after take down. Your red gummy vitamins could be a factor, so I suggest stopping them for a week or so to see if that changes anything. Daily vitamins are less necessary than most people think. But, if you are really concerned, don't be shy about calling or emailing your surgeon's office for reassurance. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
? Prolapsed pouch?
L Ljz
Ljz I take! If you don't mind me asking, how long have you had your prolapse. Is it progressing/ getting worse? What is your plan - obviously having to visit ER not good, but does prolapse impact your daily life? I wish I knew how long I could hang in this condition- some days I wonder! My bleeding increased a lot last week, which brings up other concerns for me. Caring thoughts to you both! LJZ [ more ]
Ljz Starry Night, hoping you've got some relief by now, sounds miserable to have to maneuver it that way! Not sure I could- hoping you're getting it figured out! ANDREWAZ707, thanks for suggestion of lemon water. Probably better for me than Colestipol [ more ]
Ashley22 ❤️
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J-Pouch ForumsHelp! Need advice now!
Fermentation in ostomy/intestines?
NonmouseNonmouse
Jan Dollar What you describe is typical. Everything is a mess for a while. It takes months. Jan [ more ]
Nonmouse This is immediately subsequent to colorectomy (16 March)- nothing has even begun settling down, yet. [ more ]
Jan Dollar I would think that if you had some sort of gut infection, your symptoms would be consistent, not intermittent. This would lead me to believe it is diet related or perhaps related to medications you are taking, even antibiotics. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
what is a pouchogram and pouchoscopy
C canlafre
Scott F EUA (examination under anesthesia) is needed if some significant procedure is planned. Since your doctor suspects a pre-pouch stricture, he may be planning a procedure to dilate or release the stricture, which could be very unpleasant while awake. I'd suggest you find out what he's got planned. Even when it's the best path forward it's helpful (IMO) to know the risks. [ more ]
canlafre I just heard back and got my tests scheduled for this Thursday. They will be doing the pouchogram first and then the pouchoscopy. when I have my yearly scope they do it right in the office, but for this pouchoscopy they are putting me under, so it must be a little different. Hoping the doc finds what he is looking for on Thursday [ more ]
Scott F I'd guess that your yearly scope *is* a pouchoscopy. If you have a pouch, and the scope is entering from the south, your pouch is really the only thing to scope. [ more ]
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J-Pouch ForumsHelp! Need advice now!
UC to Chron's???
D DEE2015
Starry01 I was diagnosed with UC in 2003/2004 with ileostomy and then j pouch surgery. In 2013 started getting sick again and now crohns. Since then I've had a permanent ileostomy created at Cleveland clinic. My j pouch is still in there but has crohns and they want to take it out. I'm scared to take it out tho. it sounds like uc to crohns later is common from all my research. [ more ]
CTBarrister In my opinion the diagnosis is irrelevant, what is important is treatment to bring these symptoms under control. There are more inflammatory bowel diseases and forms than there are categories for them, and frankly they are all treated somewhat similarly. Patients either respond to the treatment or not and if not more aggressive treatments are used, like biologics. I was diagnosed with UC at age 9 and later Crohn's Disease, and numerous subsequent tests were inconclusive. I am now almost 53... [ more ]
Helen C. Dee, I had to go on disability due to my health issues. It took a lawyer to get me approved, but it is worth the time and effort to do so. Make sure you get a lawyer who specializes in disability cases. He will know how to navigate the system. I will warn you that it is a slow process. My advice is to make copies of all the forms the lawyer or Social Security will send you (once you have completed them) before you send them in. I found that I had to complete the same forms over and over... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Waiting for surgery
Becky18Becky18
CeeeeCeeee I weaned myself down to 20mg daily of Prednisone prior to my first step surgery. Whenever I tried to get below 20mg I suffered. When I woke up from the surgery I looked like Humpty Dumpty! I needed a steroid boost. It showed! They tapered me down from 20mg and I went home continuing to taper. It all worked out. Best wishes in getting a date for your surgery.....SOON! [ more ]
Becky18 Hi Scott and Jan, as of right now I do not have a surgery date. I think I am on the cancellation list. I have no idea when, but I know I have to do something about this now. I emailed the secretary today and she finally emailed back asking a couple questions like when was my last blood work and when was the last time I was on prednisone. So I know she is trying hard to get me in. I haven't had blood work since January. I am going tomorrow to my family doc for blood work. I'm expecting to be... [ more ]
Jan Dollar You are right. This WILL turn into emergency surgery if you do not treat your symptoms. How long has it been since you've been checked for anemia? By the time I had my colectomy I was just on the edge of needing a transfusion, and I was bleeding for only 6 months. I was taking 80 mg of prednisone at the time of my surgery. Not ideal, but better than a ruptured colon! Did they give you a new surgery date when they cancelled? I find these sorts of things pretty intolerable. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Doing well , I think???
PouchomarxPouchomarx
Pouchomarx That is indeed correct. My original pouch had a sinus and a leak. They tried to repair it a few times but all failed. [ more ]
Former Member Poucho.... When you say this is your 2nd pouch; do you mean your 1st pouch was completely removed and a new pouch was constructed from the remaining small intestine ? [ more ]
Ljz Wow! That's great news! Continued success with this new pouch! Well deserved! LJZ [ more ]
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J-Pouch ForumsHelp! Need advice now!
Butt/Anus burning and bleeding
AnnmariealAnnmarieal
Hermione Hi don't know if any help- I use Ilex ( I get this on prescip. as I am in the UK) together with Calmoseptine which I get on Amazon for about £5.00 a tube. I also have to put some 'inside'. I find it makes for a much happier butt !! [ more ]
Former Member Ilex Protectant Paste ilex Paste is also available on NHS Prescription within the Uk, so totally free if in receipt of benefits, otherwise a Prescription Charge applies. [ more ]
salmander Claire, Yes, that is the exact product, and showing the exorbitant price too. Check if it's sold at any other location. Perhaps you could contact Amazon or Onlinestore directly to verify the price. I'd be willing to bet that there is an extra "1" in the price, but even that seems a bit exorbitant to me. It's not some kind of rare or hard-to-find product, so that price just doesn't seem right. Google Soothe and Cool and you should come with several places that sell it. Perhaps it's even sold... [ more ]
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J-Pouch ForumsHelp! Need advice now!
U C in lungs
Maggie MaeMaggie Mae
deweyj Azathioprine? aka Imuran, or Mercatoprurine? aka 6mp [ more ]
Brewbirds Yes off it for now until I chat with my pulmonary Doctor. Just wondering if I can try another combination to keep the antibodies down? [ more ]
deweyj off methotrexate? if I recall correctly I think it was the mtx that was suspected in her case. as to my cough who knows bit of a mystery as I didn't have it with Humira. but to be candid it did get so annoying that I had to buy bags of Halls cough drops because I would sometimes just have coughing fits. the good news the Halls quelled the fits so never anything more than oddity. I am pinging my friend now to see if she can shed more light as well as confirm her current medications. [ more ]
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J-Pouch ForumsHelp! Need advice now!
FIRST ENDOSCOPY more bms
bederyparisbederyparis
bederyparis jan thank you and i agree with you. In france they dont prescribe meds until they are sure and in this case the gastro wants to have an idea of the level of inflamation. [ more ]
Jan Dollar Yes, scoping can cause an uptick in inflammation/sensitivity. You should be back to your baseline in a few days. I am not sure what the point is in waiting for the pathology report in order to treat pouchitis. Granted, ALL pouches have a minor level of inflammation, but the doc should be able to discern that from pouchitis before the path report comes in. For example, I had a lot of inflammation on scope. The path report just ruled out any dysplasia and noted that it was chronic... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Mouth ulcers before UC diagnosed
Christopher100Christopher100
Deedeeh i had a ton of mouth ulcers pre diagnosis of UC. they were really painful and big and i had a lot of them at one time. after treatment i have not had them again, except the odd tongue one as you say but absolutely nothing like it was before the onset of the UC thankfully. i do believe they were part of the onset of the illness. [ more ]
Hermione I was diagnosed with UC in my early 20's. Throughout my teenage years I always had mouth ulcers and continued to have them all the time until I was 35 when I had my colon removed. I had an ileostomy for the following 15 years (although I had terrible problems with it!!) and guess what.... no mouth ulcers!! I had a Jpouch formed in 2015 and since take down in August 2015 I have continually had mouth ulcers. [ more ]
Ashley22 Before I was diagnosed I suffered from really my mouth ulcers. They were mainly just on my tongue and I would have as many as 9 or 10 at once. I was in high school at the time and it made talking, eating, brushing my teeth, etc a very painful experience. Since I got my colon removed two years ago I have only had the tongue ulcers twice and both times it was just one and they were small. I know that mouth ulcer are more common in crohns patients than in UC patients but can occur in both. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Teenager with new J-Pouch Struggling with Recovery
BM best mommy
best mommy Thanks so much to everyone for their thoughts and feedback. My daughter had a CT-scan -- two of them actually -- and her pouch is totally normal. Turns out this was all recovery related issues. I think after the second scan she had much more confidence that she is actually getting better and is no longer a 'sick' person. In fact yesterday she said she "felt really good." That is the first time I have heard her say that in 5 months! Hopefully the move back to her regular old teenage life will... [ more ]
MNpoucher This hit home for me as I was 17 when I had my surgery and in hs. I was so happy to get rid of the ostomy but the first few years with the pouch were not what I was expecting. Has been checked for a ln anal fissure? Had one myself for years that would only get slightly better using steroids. Then I was prescribed nifedipine paste and it made all the difference. Occasionally I will still get a little burning but the paste relieves it right away and my fissure has been gone for years. The pain... [ more ]
Momma Hi Mommy, I just saw your post. My 15 yr old son had his surgery in December at Mt Sinai too. He just had his step 2 on 3/4. His take down is not until June. I would love to chat and share stories. Who was your surgeon? I think we actually chatted in the hallway. I will private message you. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Can't eat -get full easily
M Momma
skn69 Surgery, illness, fear of not controlling his bowels....can all put pay to his appetite...give him time...tempt him with small, easily digestible snacks (a couple of crackers w/peanut butter, apple sauce heated up in the microway with a sprinkle of cinnamon and brown sugar, oatmeal...). Maybe he will do better with 6 tiny meals than 3 large ones. As long as he is staying hydrated, eating small protein snacks (cheese cubes & Peanut butter works well too, chicken) and is not weak and... [ more ]
Momma 3 weeks ago [ more ]
Scott F How recently was the surgery? Sometimes the bowels take a while to fully wake up, and that can cause a bit of a logjam. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Freaking out I can't take it !! Help
S SonnyJ215
TE Marie Unfortunately I am getting my j-pouch removed in the morning. I have had a permanent ileostomy the last 6 months and it is not horrible. I was covering it up with press and seal wrap and expensive waterproof tape to shower. I read a comment by a gal that goes swimming in the ocean and gets wet whenever she takes showers and so on. She has never had a problem with it leaking. I started showering and bathing with nothing over it and she is right. All I do is use a hair drier on low and air... [ more ]
Angie Wilson Wow - a kindred spirit - I had the Compazine thing too - ER and IV benydryl - twice. Have had many of same problems - and yes, it's all been worth it. I think I was about 30 when I had the Compazine issue- had a day surgery for ovary issue and this was for nausea...wow - that was fun! Ovaries, uterus, etc. are long gone now - you gotta laugh at how much they can take out of you and yep - you still function. The toxic thing is something I will bring up to my GI person - something is off for... [ more ]
maryloar I too have a long term J pouch. Mine was in 1984.I had Ulcerative Coliis for 10 years prior and was told I was at risk for colon cancer. I would not be without mine. The first year after surgery was a nightmare. I had dehydration, swollen legs and several problems. The main problem was that I had Compazine poisoning and after 5 different doctors telling me basically it was all in my head, a sweet nurse in the ER diagnosed me with Compazine poisoning (symptoms similar to Parkinsons and... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hemorrhoid after step 2
M Momma
Scott F Hemorrhoids don't necessarily heal on their own, though the swelling and discomfort from them can come and go. At least he won't be straining on the toilet for the time being, since that tends to make hemorrhoids worse. I hope his stop bothering him! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Blockage?
Treys momTreys mom
deweyj glad he is feeling better. curious was he bloated at all? to my mind, there are several things that indicate a blockage. first it starts without passing stool or gas. since I like to believe my superpower is pooping on demand this in and of itself is alarming. after all who wants to lose their superpower? second I begin to bloat as things back up. then peristalsis insistent beast that it is, starts creating waves of pain coincident with peristalsis trying to make its way through. and finally... [ more ]
Treys mom Thanks for everyones advice- still at hospital- they put him on iv fluids, morphine, anti nasea meds. Started passing some watery stool- he is feeling better. They are going to put him under anesthesia and check for stricture. [ more ]
clz81 My general rule since I've gotten my J-Pouch is any time vomiting is involved, I go to the acute care (it's 2 minutes from my house so very convenient). Even if it's not a blockage and ends up being viral or something else, it's very hard for me (and probably many pouchers) to rehydrate with just oral liquids. The sooner that I can get IV fluids, the quicker I'm able to recover. I've also been through A LOT of blockage and it's horrible...I get on IV fuids, anti-nauseas, and pain meds as... [ more ]
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J-Pouch ForumsHelp! Need advice now!
SSRIs (Zoloft, etc.) and terrible Diarrhea with J-pouch - help and advice please
S slouchypouch
SonnyJ215 I'm on Ativan as well I'm on a 0.5 dosage for anxiety it seems ok for a lil time I take 1 in the morning and 1 at night but I still get edgy I was think two in the day and 1 at night what's your dosage and how often? Thx [ more ]
slouchypouch Thanks MN, I've tried Wellbutran a few times in life thinking I was depressed or moody but it was like taking a sugar pill for me. No effect positive or negative. I've been Dx'd with "Pure OCD" which is a powerful thought rumination anxiety condition that can respond favorably to SSRIs (but not anxiety meds like Xanax). I've got a few more SSRIs I can try and then move on to mood stabilizers. Gut flora might be a good target next as there are now quite a few university Psychiatry cases where... [ more ]
MNpoucher Wellbutrin is another one you may want to try. Very similar to an SSRI and helped with my anxiety for years. Also easy to come off if you need too. Tricyclics are not. Kind of wish I would have never started nortriptyline (for migraines) because I don't want to take it forever if I don't need to but I have tried unsuccessfully to ween off but it was too difficult. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Bravo pH sensor stuck??
msjovimsjovi
Jan Dollar These things can become lodged, but it is not likely in the pouch. More likely it is somewhere in between, where you may have a narrowed area. Easy to retrieve if it is in your pouch, esophagus, or stomach. Not so easy if it is beyond the reach of a scope. You need to get an x-ray to see if it is still inside. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
feeling scared
AW Angie Wilson
Angie Wilson Great question - started taking capsules yesterday - that was once of my first thoughts. Did not know nausea could be a symptom - so thanks for that info! [ more ]
Lambiepie Angie, just one more thing: do you get enough iron? Nausea was actually one of my symptoms when I was really iron deficient as was extreme fatigue. Iron supplements darken the stool so maybe a deficiency lightens them? I know I've been on the iron bandwagon lately but I suffered so much when my numbers were low that I'm trying to prevent others from the same thing! [ more ]
Angie Wilson Thanks so much for replying! It is amazing how just having someone out there reply gives a person a lift - I must remember to reply to others! I think my stools are often yellow/green too through the years. I get cha - this is one of those, "this is different" things - you know your own body, etc. -you are right - nothing to do but see doctor and hope for the best! Thanks again for the kind reply. [ more ]
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J-Pouch ForumsHelp! Need advice now!
C-Diff/ Severe dehydration/ very bad cramping nausea vomiting in the hospital now...
Jamie_M_WJamie_M_W
Jamie_M_W Thanks for the info. I'm going to discuss this with my gi doctor when he comes back from vacation I also will be seeing a infectious disease doctor. I'm still on the vancomycin doesn't seem to be doing much I still have another few days of it though I'm taking floristor also and extra probiotics. I called down to the mayo and spoke with a nurse of the doctor I've seen down there and they told me they have donor stool. But of course I would needs consultations first. Its a 5 hour drive. My gi... [ more ]
deweyj Personally I think Dificid is just another med. I do NOT know the details of its comparisons to Vanco and Flagyl when it was trialed. But that aside I would indeed explore FMT, it has something around a 90% success rate in vanquishing cDiff. There is a company that has pre donated stools. Just heard about it at a CCFA symposium over the weekend. not sure of the details so not much help. for recurrent cDiff, FMT seems to be the best answer. [ more ]
Jamie_M_W Hi , I just found out it costs 1,000.00 here in my town that my donor would have to pay out of pocket. As insurance don't cover the donor. I'm on disability. There's no way I can pay for it. But, my gi doctor isn't back until the end of the month. I'm hoping my extra vancomycin and probiotics will help with this. I will also ask about the dificid. Thanks so much for the advice. Jamie [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pyoderma
CshellCshell
Catinthehat Yes I have had Pyoderma Gangrenosum on my lower leg. It is related to UC in that it is an inflammatory auto-immune condition. Mine lasted about a year but it can vary a lot in intensity from person to person. I think that finding a good dermatologist is the best thing to do. I had the cortisone injections and I am on Imuran (azathioprine) to suppress my immune system. Mine eventually went away but has left some nasty scars. Search online if you have not done so. There are some facebook pages... [ more ]
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J-Pouch ForumsHelp! Need advice now!
E coli + fistula: Jan??
A akteacher
Jan Dollar Yep, like camping without the fun. Jan [ more ]
Scott F As your husband concluded, it's just darned inconvenient to live without running potable water, with or without health issues. [ more ]
akteacher Thank you both for responding. I think I'm going to stay put in SC until the issues in the village are cleared. I've had too many problems with the fistula & it's just a real concern to me that something will happen. (My luck is....if it's going to happen to anyone, it will happen to me!) My husband is in the village now & he's saying they are still without water & aren't really sure when it's going to be back on. He's decided to head to Anchorage until the week end. If &... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Butt Burn
M MandiG
Tanner I wet the TP with warm water before wiping. Great to use is Anhydrous Lanolin put on up inside and on rash. Buy from your pharmacist. Comes in a tube. [ more ]
MandiG Thank you all for your opinions and advice! I really do appreciate it. I apparently have had pouchitis for at least the last 6 months and the doctors did not know enough about my pouch to diagnose me correctly. Now I am waiting another two weeks just to see a doctor for it who still doesn't know squat about it and there is no changing that because where I live there are not very many pouchers. Oh well. This last week between the butt burn hitting me at the worst possible times and all the... [ more ]
Mysticobra Man... When I had it there was no relief... Period. It would subside until the next time I went and at times I was pulling my hair out sitting there. I don't have the problem anymore. But... No pun intended... It seems that the burn goes with the territory at one level or another. There are things to calm it but but it seemed while I had my pouch it was there all the time. No matter how clean I kept myself or no matter what I ate. It got so bad with me I used lidocaine cream. And that... [ more ]
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J-Pouch ForumsHelp! Need advice now!
pouchosocopy bowel prep regime FULL PREP WITH MIRALAX AND NOTHING BUT LIQUIDS
C Chrissey86
Jan Dollar If you have to travel, I definitely would plan it so it is convenient for you. You don't want to add extra stress to this. I must admit that I am fortunate that my GI is a 15 minute drive for me. I can't imagine having to get on a plane for care! Jan [ more ]
CTBarrister It's necessary because he doesn't want you flying out to Cleveland Clinic and not being clear for the scope and then have to tell you, "you were not clear - I think you had some inflammation and polyps but I really couldn't see it!" I have actually overheard these conversations in recovery rooms while waiting for my own procedure to start. You would be surprised at the number of people who blow off/cheat on the prep. A LOT. And it sounds like you are looking for a reason to. Just do the prep... [ more ]
Jan Dollar I don't have Dr Shen, but I do clear liquids the day before, take a few Dulcolax the afternoon before, then tap water enemas until clear an hour or two before leaving the house. I am fine with it. Miralax is more gentle than Ducolax. I had a couple of hours of diarrhea. I had a meal on my way back home. I was hungry, but not starving. I don't get weak or shaky with this, and I am over 60. But, only you know how you respond to things. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Nighttime incontinence
Chad44Chad44
Chad44 Thank you for everyone for taking the time to reply! [ more ]
CeeeeCeeee My experience with Flagyl is that it works for me but not immediately.....sometimes a few days after I've completed the entire prescription I begin to see improvement in my symptoms. Best wishes! [ more ]
Scott F The usual next antibiotic to try is Cipro. Flagyl did nothing for me, but Cipro acted like a wonder drug. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Rectum/j-pouch removed complications
toobusy2cleantoobusy2clean
Mysticobra I had mine done four months ago. I cannot get the bottom part of the incision to heal right at the public bone? First two times it was open. Now it's sealed but I can tell it's infected. Third time it has become infected. Cut open twice bigger to heal. Now I think I may have to do it again. Not a good spot. But this may not have anything to do with what's going on with your daughter. Mine just is in a very thin skinned spot I guess. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Partial Bowel Obstruction
S Sandyj
Sonja6 Im going through the same thing right now, except the being pregnant part. I've only been able to get pregnant once and didn't even know I was pregnant till after I miscarried. I've had horrible adhesions since my takedown 12 years ago and horrible periods since an ovary removal a few years ago. So I just thought the horrible pain and bleeding was a combo of the both. But I woke up this morning with that same pain. Can't stand up strait at all, super nauses for weeks, headaches which I never... [ more ]
pinklady I am 15 weeks and 4 days pregnant and have been admitted to the ERywicefor partial obstructions.that cause severe pain nausea vomiting.It has take 24-48 hours to pass.Once it passes I have a sore tender stomach.I hope this does not continue.I am trying to eat more bland but prior to pregancy I never had any issues with obstructions.I hope I can make it through this pregancy with out any more issues [ more ]
Sandyj Thank you for sharing Your experiences with me. It looks like my uterus is compressing my pouch, thus preventing solids to flow through. They weren't able to look at the small intestine further up, do to the amount of radiation, so there could be an obstruction further up. At this point they are putting me on TPN until I deliver and hoping everything gets better after that! [ more ]
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J-Pouch ForumsHelp! Need advice now!
pouch spasms
M M_Party
Jan Dollar I get it on Amazon. http://smile.amazon.com/Heathe...eathers+tummy+tamers Jan [ more ]
Brewbirds Jan- can you tell us where we can find the peppermint oil you are taking? [ more ]
Jan Dollar I have found much relief from the cramping and churning by taking enteric coated peppermint oil three times a day. Seemed too simple to be true, but it helps. Oxycontin is potent stuff and a hassle to keep getting on a regular basis. Even Norco was a big hassle for me. That is why I asked my rheumatologist to switch me to tramadol. It probably would not work as well as oxycontin though. When you say it does not constipate you, maybe it is just because it is new in your system, as the GI... [ more ]
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J-Pouch ForumsHelp! Need advice now!
7 MONTHS OUT STILL APPROX 10 BMS PER DAY
bederyparisbederyparis
rachelraven Today I went 5X, and I'm 25 years in. Yesterday it was about 8X. I just don't count generally, as long as there's no urgency. What I eat impacts it, but not like it used to. I've gone as few as 3X a day, but that's rare. I'd say six is my average, with usually zero at night, but occasionally 1X. [ more ]
Spooky At 7 months, you are still a relatively short period out from your takedown, and there is plenty of room for improvement. While some j-pouchers do settle around 10+ BMs as the norm, at this stage in your recovery, there is no reason to believe that this will be the case for you. J-pouches are complex and it can take you body a while to adjust. In my experience, I really noticed changes around 1.5 - 2 years out. Those improvements tended to come in leaps and bounds, rather than gradually. I... [ more ]
Muddygirl I am 9 1/2 months post takedown. Right after my jpouch surgery I was taking Loperamide (2xday) and Benefiber in my morning coffee. I did this maybe 3 weeks off and on and it seemed to me that it really did not help me. I am somewhat of a stubborn person and decided to not do either anymore. On most days in a 24 hour period, I have 3-4 BM. This may be the best it gets and I am good with this just as long as I can get to a point I can eat more variety of food without having to deal with the... [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
Sex and J-pouch??
I IrisB
Former Member ❤️
Martiangirl Hello lovely people, I ve not visited the site for several years. My pouch surgery was in 2007. I ve never had any problems with it and my sex life has not suffered at all. I was single at the time of my surgery but it didn't stop me dating I agree that on my "sexy days"eating foods that will result in thicker output helps. So I stick to potatoes ,chips or boiled, it makes no difference as they work best for me to bind everything. I must admit I do not pay too much attention to what I eat so... [ more ]
Angie Wilson Yes, you are right. sorry about pain meds, cane, etc. - you are just a person who wants to do so much and time/health at times got in the way - like it does for all of us - I assure you you have done a tremendous amount of things others can only dream of - but, it seems in life that it's never enough - there are always those other dreams that don't work out. Never say never with you - you may not walk the entire Great Wall - but you may visit it and someone can carry you. We took this trip... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Substitute For NSAIDS
CTBarristerCTBarrister
JLH You might also try acupuncture [ more ]
CTBarrister My left arm is going numb and there is a pain in the area between my neck and left shoulder. I am a bit leery of opiates due to their constipating effect on me but will keep my options open. My PCP doctor thinks the physical therapy may alleviate it. [ more ]
Jan Dollar Just watch your dose. Better to combine with an opiate or something like tramadol than to max out the Tylenol dose. Oh, and don't be shy about asking for muscle relaxers if you need them. When I had a compressed nerve root in my neck that was really inflamed, my neck and shoulder muscles spasmed so much I could not lower my shoulder. Flexeril or Robaxin can help relax it a bit. But, the heating pad made the biggest difference. Unfortunately, PT just made things worse. Bottom line, I just... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Chronic joint/muscle pain and what to do?
V van
FAPLifer I had horrible joint pain everywhere. Took me 15 mins just to get out of bed every morning. That along with other symptoms, my doctor has diagnosed me with Chron's, along with my good old FAP which caused me to get the j pouch. He put me on Remicade. Took a couple of months, but after that I had no pain. Didn't even have to take the occasional tylenol. If you are having other issues besides the joint pain I'd ask about Remicade. It worked wonders for me, and I had to miss one infusion... [ more ]
van Hi everyone. Thanks for all the advice. Jan I think your right as I have had X-ray/CT and it's all come back neg . [ more ]
AllyKat I'm trying Accupunture and the overall pains I get seem much better. Personally, I don't care if it's age related, UC related, Entyvio relanted, weather relanted, I'm not going on any more meds. Looking at natural stuff. i also found Epsom salt baths work wonders. [ more ]
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J-Pouch ForumsHelp! Need advice now!
leaking update
R Rebe0505
Jan Dollar Oh there IS inflammation, just not much in the way of acute inflammation. The deep ulcers were indicative of chronic inflammation. That may be why Entocort was not discussed. He did say I could use hydrocortisone suppositories or even VSL#3, but he didn't have much hope for them. Yes, I do like my GI. He's not a j-pouch specialist (he's a liver specialist), but he is very responsive to emails and does lots of research to stay on top of treatment trends. He also works closely with my... [ more ]
Rebe0505 hmm.. jan you say ulceration but not lots of inflammation does that change anything in concern for dysplasia i wonder???? sounds like your dr plan is good to me.and you seem lucky to have a doctor so knowledgeable ..i always felt calmer and better when i felt there was another alternative to try and seems like you have it for now..good plan to me..(i think like i would be) you were thrown by last scope and jumped to a place you were not at yet..When i have my head screwed on right i know i... [ more ]
Jan Dollar No, but I've been on short courses of prednisone here and there. I suppose it is on the table, but not at the moment. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Leakages, pain and blood.
KD Kate Deaken
Scott F People commonly have trouble with their loop ileostomies, including discharge from the pouch that can be hard to hold in. It's reasonable to call your GI or your surgeon to get their sense of it. Have you tried any dietary changes that might help a bit, at least with the ileostomy output? Is it possible that you're dehydrated? The best way to tell is to make sure that your urine is clear or light colored; hopefully you're able to pee separately to check. [ more ]
Kate Deaken Yes I have an external bag still with a take down surgery planned in 3 months. I've just been having so much trouble since my last surgery in October when they built the j -pouch and removed my rectum. Do you have an ileostomy ? Or any advice, I would really appreciate it. I'm at a point now where I don't know what to do. If I should go to my GI or call my surgeon, it's definitely been a rough journey. [ more ]
Scott F Kate, I'm sorry you're having so much trouble. Do you still have an external bag? When you wrote "the output in my bag" it made me wonder if you still had a loop ileostomy, with another (take down) surgery planned. [ more ]
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J-Pouch ForumsHelp! Need advice now!
cant empty pouch
bederyparisbederyparis
Angie Wilson Great advice - well explained as always, Jan. Thanks for all you do! [ more ]
Jan Dollar I am not sure that this is abnormal. Many people think you just sit there long enough for whatever is at the exit to "explode" out, and you are done. But, unlike a rectum that contracts when full, the j-pouch empties by gravity. So, yeah, it is not atypical for more stool to drop down after the pouch empties. You clean up, stand up to wash your hands, and "whoops" there's more that wants out. The longer it has been since you last emptied, the more there is to come out. Sometimes what I've... [ more ]
Angie Wilson I don't know - I sure wish I could help you. What has your GI person said? Have you had pouchoscopies, etc. to try to get a diagnosis? Sometimes I've had better luck with a GI person than my surgeon when issues have come up thru the years. I bet they can fix it. Also, when you say 7 to 8 times in a short period of time - what do you mean? Some people with j pouches (my dad - I can remember) sat in the toilet for about a half hour at a time....I don't know if he had this sensation.. but it... [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
? Obstruction
J jmatec21
Ray C Welchol is seems to be not recommended for people who have bowel obstructions: Do NOT use Welchol if: you are allergic to any ingredient in Welchol you have a history of certain bowel problems (eg, blockage, paralysis, slow movement of the bowel muscles) or major stomach or bowel surgery, or you are at risk of bowel blockage you have very high triglyceride levels or a history of inflammation of the pancreas (pancreatitis) caused by high triglyceride levels [ more ]
deweyj NG tubes or I love the expression, hose down the nose suck but they work. and Jeff's mom is spot on, regarding an ileus which may occur post operatively, CT scan process the nature of the dye seems to stimulate and awaken the bowels I had a friend who's surgeon did this for her and bam, floodgates opened. but as Sharon well described there are various reasons for obstructions so best to try and identify the root cause. this unfortunately is not always a simple task. good luck and I hope you... [ more ]
Angie Wilson All great advice - have had obstructions that have passed on their own in hospital. I don't mind the ng tube at all - I always ask for dilaudid when this happens. So ng tube does not bug me. It has usually take 4 - 6 days to go away - the IV keeps you hydrated. I hope this works out for you. I had one time when I had to have surgery - but only once and that was also due to a multitude of other factors - sure hoping no surgery needed. The pain of an obstruction - especially as I tend to stay... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Painful Fissure and New GI Doc in Tampabay
D DAP
JLH i stayed on imodium as i was told it slowed down the transit time in my gut and minimize frequency. slowing down might have also thickened the stool, but when i went off it there wasn't much difference. try it both ways and see what works for you. keep at it as this is a situation that if you don't do something it will get worse, and then you are left with surgery, which is not a good option. janet [ more ]
DAP Thanks for the info. I'm going to try the humira. Did you or anyone else stay on Loperamide while having the fissure? I have been off of it since I originally got the fissure. Seems right to be off to make the stools easier to pass, but maybe I'm wrong??? [ more ]
JLH after about six weeks on humira i had a scope, at which time the skin around the fissure had 'granulated', which was a good indicator that it was healing. because the pouchitis had only responded a small amount the doc doubled the humira dosage, which i continued on for 4-6 weeks. humira wasn't working for the pouchitis, but the fissure had healed!! i ended the treatment, which would have been about 3 months, and the fissure never returned for the remaining one year plus. then i got a k... [ more ]
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
Imodium or Pepto Bismol tabs?
LMacLMac
Jan Dollar If you take the caplets instead of the liquid or chewable Pepto, black tongue is not much of an issue. Jan [ more ]
lclassen Another side effect of the Pepto is that your tongue can turn black too. Happened to my husband and it scared us to pieces!! �� For my pouch, I've been on Metamucil since the day I got it... 18 years ago. Won't miss a day. I also will throw in an immodium if needed. Personally, I'd stay away from Pepto. [ more ]
LMac Thank you Jan! [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
Imodium causing nausea
alecz222alecz222
Angie Wilson I agree - I can't take Imodium anymore - I don't do any kind of fiber..but this all happened over time with my pouch. For first several years, took fiber w/ small amount of water...then, that became something that plugged me up too much. Now, I opt for more output and lots of hydration/propel/etc. because the stopping up is not fun. Point is- your small intestines do adapt (or do for many) and change over the years - as Jan said. What works at one stage is maybe not what works at another -... [ more ]
Jan Dollar I would suspect that the Imodium is slowing your gut too much at this point. Hence the nausea. The lesson? Things change. It is not that you are suddenly reacting to the Imodium, but that your need has diminished because your gut has adapted over time to not having a colon. Jan [ more ]
See all 2 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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