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J-Pouch ForumsHelp! Need advice now!
Prolapse
P Pear2393
Alock Yes i had prolapsed pouch. I was not able to empty it. I would have to sit on the potty with the sits bath with warm water to evacuate a little at time.I went for surgery to have it stapled up. Because of my asthma i had to have a spinal block. It was not a big deal as far as the procedure just embarrassing to be in the position .I would think that is how they would have to take care of your bladder. I don't think they would have to cut you. Good luck. Hope all goes well. Ps I have had my... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Jpouch output
BenBBenB
Kushami That is good to hear! 3–4 BMs is great. Most people find their pouch improves/settles in for the first year (mine did), but it sounds like you are making good progress already. Hope your recovery continues. Porridge – yum! [ more ]
BenB Evening Sarah, I'm very well. Saw my surgeon today who is over the moon with my recovery and how well things are working as am I. Currently going between 3 and 4 times a day. A bowl of porridge in the morning seems to do the trick, wont go to the toilet until 6 or 7 hours later. Now looking at sorting out my diet and getting back to exercising [ more ]
Kushami Hello Ben, How are things going now? I hope the swelling has improved and you are starting to get a routine. Please post again with more questions as you recuperate. Cheers, Sarah [ more ]
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J-Pouch ForumsHelp! Need advice now!
Colorectal surgeon
A Angitat
CeeeeCeeee I'm sorry you are having such a rough time. Hopefully, you will find a solution soon! I have had experience with the following two colorectal surgeons. They are both excellent, in my opinion. Daniel Ng, MD and/or Babak Rad, MD Newport Irvine Surgical Specialist Group (NISS) 510 Superior Ave., Suite 200-G Newport Beach, CA 92663 1-949-791-6767 It might take you awhile to get an appointment. They are both very busy. Explain how problematic your situation is. Also, my wonderful... [ more ]
Lesandiego Mathew Isho - San Diego. I too had emergency removal, so had to find a new doc (I didn't even know what a J-Pouch was.. ha ha). Anyway, he did step 2 and 3 for me and I have had a pretty smooth ride (at least as far as my pouch goes) for the past 6 years. [ more ]
Angitat Yes please. Send me names. I am sorry if I already sent this, but I have received quite a few pain meds due to complications so my memory is hottific Angitat [ more ]
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J-Pouch ForumsHelp! Need advice now!
Blockage
A Alaine
Alaine I had surgery for a blockage June first. This problem is post-op after three and a half weeks. They had me on solid food after a week in the hospital. Maybe they should have introduced food more slowly. Part of the problem is my weight dropped to under 100 pounds in the hospital. My gastro doc is testing me for C. Diff . I’m scheduled for a Cat scan this week. [ more ]
duck11 Sorry to hear of what you are going through. Do you know with certainty it is a blockage? Did they do imaging tests in hospital? I had my first really severe blockage in October (also after decades with a good pouch). I had to eat clear fluids for weeks until I could pass food normally. It was hard energy-wise but i definitely felt better for both pain and bloating etc. not eating solid food. It took c. 5 weeks to get back to normal. It seems if you are going 20x/day, you couldn't be blocked... [ more ]
Alaine Scott, I was tested for C. diff in the hospital and that was negative. My blockage was not near my stoma site, I asked. I was in the bathroom ten times a day before I started feeling worse. I’ve needed to strain to go ever since I’ve come home from the hospital. I’ve never had pouchitis so not sure about how that feels. My pouch has been trouble free until now. Waiting to hear from my gastroenterologist and surgeon. [ more ]
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J-Pouch ForumsHelp! Need advice now!
12-year old son - decision on colectomy & j-pouch
C CureJLB
lablover No advice..just cyberhugs. [ more ]
Caroline's dad Our doctors recommending removing the rectum as well. From what I remember from our numerous discussions was that the existing rectum could develop UC as well. Believe me, my wife and i wanted to preserve every bit of her as we could but ultimately we had faith in our surgeon and GI Dr and we took their advice. In the end we're glad we did, although I'm told Chrone's can develop in UC patience, it is very rare, so removing her colon and the rectum, even as barbaric as that sounds, has given... [ more ]
CureJLB Hi, Kim A. I'm glad our experience is helping others. Where is your son having the surgery? We are getting close to making a decision ourselves. Good luck with the surgery this week and please let us know how it goes! [ more ]
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J-Pouch ForumsHelp! Need advice now!
what could this be
pennie07pennie07
pennie07 CTBarrister Thanks for your reply. I went yesterday to see the surgeon - had an appt. my CRP was high and iron level low as well as ALB. They don’t really know what it is either, but they said maybe pouchitis so they gave me some cipro to take. They asked me to take loperamide in the evening before bed but I haven’t been doing that. I started cipro yesterday. Surgeon asked me not to take the Pentasa enemas together with the cipro because then they won’t know which med actually helped treat... [ more ]
CTBarrister One last comment - be careful with loperamide. It can make pouchitis worse if you are taking it with antibiotics (overthickening of stool) and it does absolutely zero for the inflammation. It gives you the illusion that because you have less BMs and no leakage, it’s treating the problem. It’s not. It’s just slowing things down and by doing so, possibly making the inflammation worse if it’s not otherwise being treated. I have extreme sensitivity to loperamide when combined with antibiotics... [ more ]
CTBarrister Ulcers are inflammation or a manifestation of inflammation so as far as the Doc saying it’s not pouchitis and it’s not Crohn’s - the question is what is it then? Incomplete evacuation in my case always was a hallmark symptom of pouchitis or inflammation of the Pouch. I believe the Pouch isn’t as elastic when inflamed. If you look at an MRI the walls of the Bowel thicken where it’s inflamed. This was observed on my MRI Enterography at the J Pouch inlet and was attributed to backwash ileitis,... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Blood in Stool Occasionally
PSJPSJ
TE Marie In addition to the above it could possibly be cuffitis. It is what caused blood in my case. I hope your scope goes well. [ more ]
PSJ Thank you for your replys! [ more ]
PSJ Crohns runs in my family but they assured me.before surgery that was not it. The blood is not too dark but I need to get checked. I think I just don't want to get any bad news after years of things going better. Remicade tomorrow and I never stopped just went gradually ro 12 weeks between and decided it was a mistake. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hydrosalpinx
CD Celsie Denise
Mo I was diagnosed with hydrosalpings before I had my daughter. I was told both tubes were filled with fluid and I would not get pregnant without doing IVF. So I had surgery to cut and cauterize the tubes. They were going to remove them but there was difficulty in doing so. I then went through IVF to have my daughter, who is now 12, but it only worked once even though we tried for another! Good luck! [ more ]
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J-Pouch ForumsHelp! Need advice now!
5 months post take-down blues
J Jfill21
Kushami Seconding the suggestion for psyllium husk powder – the fine stuff. I took a couple of teaspoons mixed with a small amount of water immediately before main meals. I found it had a cushioning effect. Made BMs less liquid and reduced butt burn. Also, I found things kept improving for the first 12 months. At 6 months my BMs reduced. Hope things continue to improve for you too. A year-long recuperation is quite a project :-) [ more ]
Jfill21 Hey Sunflower! Thanks for asking. I’m better now than I was a month ago. Two weeks ago my surgeon’s nurse prescribed a week of Flagyl which helped calm things down. The butt burn is mostly under control and frequency is down a bit. Still not where I’d like to be at 7 months but haven’t lost my optimism. I continue to do pelvic floor exercises (along with regular exercises and light weights) and trying to add more foods to my diet. I still don’t feel like my pouch is completely emptying in... [ more ]
Sunflower70 Hi JFILL! Just wondering if you are doing any better. I hope so. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Constantly Bloated
J Jawesome
Kushami Hello there, Did your surgeon make any specific diet suggestions? The healthy diet of someone with a colon may not be suitable for someone with a j-pouch, especially when you are only 4 months in. I had to stick to a low-fibre diet for most of the first year – no raw fruit or vegies, no high-fibre legumes (e.g. lentils, chick peas), no cabbage or sprouts, minimal onion (and make sure it was well cooked), no hot chilli, and no nuts or seeds. I stuck to well-cooked vegies, stewed fruit... [ more ]
Winterberry Hi, Jawesome. Also look up food combining. This is where certain food groups eaten together can cause fermenting in the stomach and can lead to bloating and gas, and other digestion upset. For instance, protein (meat, chicken) eaten with carbohydrates (potatoes, pasta, white rice, white bread) is not recommended because it can cause a range of digestive rumblings. [ more ]
Bubba1028 I agree with Te Marie - someone suggested the Beano pill. I take that before lunch and dinner (gas isn’t an issue for me in the am). It has gotten better the farther I get from the surgery, so there’s that to look forward to. Hope you find some relief soon. [ more ]
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J-Pouch ForumsHelp! Need advice now!
VSL#3 Info
S ScottV
Scott F VSL #3 DS (double strength) is by prescription only. They may be calling this VSL #3 900 now. The regular strength packets, now called VSL #3 450, have never required a prescription. Some insurance plans cover the prescription-strength product. A savings card can be found here: http://vsl3ds.com Good luck! [ more ]
GrannyJ64 I too recently started using VSL and only prescribed one packet a day. My pouchitus is pretty bad and I have finished the cipro. still using canasa though. It looks like maybe I should be using more than one packet a day. Also wondering if anyone has been successful in finding a cheaper way to get it. I paid $85 for mine and it isn't the strongest which I really want to switch too. I thought it was prescription but the pharmacist said it isn't , so very confused on that matter as well. Thanks [ more ]
Scott F VSL capsules are okay compared with most health food store probiotics, but one or two capsules per day is a pretty low dose for preventing pouchitis. I take four double-strength packets daily, which is a high dose, equivalent to 32 capsules daily. It’s certainly true that Cipro isn’t good for the probiotic bacteria, but it doesn’t kill all of them instantly. It seems like I still get benefit from the VSL, in spite of the Cipro. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Fistula
A Aimc
Aimc Thanks, I keeping everything crossed it stays that way [ more ]
JHendrix Congratulations. Happy to hear a success story, especially when it comes to a fistula. [ more ]
Aimc The fistula is healed. I ended up having surgery. Thank God no more gastrograffin enemas. Wow no one should have three. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Prednisone and pouchitis
MN marc nolan
TaraMcP Oh, and Im a fulltime Remicade infusion nurse manager, who literally thinks, lives, eats and breathes this life and disease... and i truly feel ive tried everything and its just not meant to work out. Im always super positive and im getting more and more ok with a permanent ostomy [ more ]
TaraMcP Marc, My story is almost identical... a very rough daily 3 yrs with my pouch. Ive tried everything, every diet, antibiotic, pred, stelara. Hindsight the best years physically were with my ostomy.... maybe we should both throw in the pouch and go back??? I want to, im so close... my life is dependent around my shitty pouch. Cant eat, cant sleep, cant work out, meds meds meds... gaining weight. They say cd, they say pouchititus.. or both? Whats your plan? I need inspiration too Tara [ more ]
marc nolan C Diff has been ruled out. Cipro was working at the start with Prednisone but once I tapered off the pred it came back, so we switched over to Tinazadole which I have been on 7 days, it does not seem to be not working. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Kenalog injections!
T TomU
TomU I think Kenalog is used at the Mayo Clinic for this kind of thing, which is why my consultant uses it. I'm not sure of its success rate though. It is predominalty an anti infmamatory but must have somd anti spasm qualties to it i'm assuming. [ more ]
Scott F Kenalog is a surprising choice to me. Botox is sometimes used, generally if the sphincter spasm is causing anal fissures. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Cuffitis help **PLEASE**
G grandmaof1
ccolbymontucky hopefully you are feeling great since this was a few months back! i've been there several times w/ "out of nowhere" cuffitis flares even with 5 years past and great pouch function. i know how badly that ring of fire burns. this is an amazing ointment that you need a script for and must get compounded but it works wonders! my amazing j-pouch surgeon formulated this: *ketam/lido/diaz/baclo 3/5/0.75/2%* it's ketamine, lidocaine, i think diazepam, baclorin (an antibacterial)...i apologize i'm... [ more ]
Jan Dollar The lidocaine jelly should work well enough to insert suppositories. Both Canasa and hydrocortisone suppositories are pretty much equally effective, but Canasa is much more expensive (brand name only). If it helps you to not feel alone, our deductible is $9600 for both my husband and me ($4800 each). Health care is our biggest expense. Jan [ more ]
Scott F Proctosol is for external use. It might be applied *slightly* internally to treat internal hemorrhoids, but never deeply enough to reach the rectal cuff. If the issue is that it’s painful to get the medicine to the rectal cuff, it doesn’t matter whether it’s cream, foam, liquid, or suppository, it would still have to pass through the anus for insertion. If the pain is simply too extreme for local treatment you could try oral mesalamine or oral steroids, and that might cleear up cuffitis for... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Constant leakage
J Jessi
Jessi Taking lots of sitz baths! They help a lot. Hadn’t thought of the hairdryer. Thanks! [ more ]
Jessi Thanks for your reply. Yes, I’ve been doing kegal exercises since my second surgery on 12/26/17. I haven’t tried Imodium yet as my surgeon didn’t want me to. He asked that I try to hold off on that for now. I’m not sure why, but I’ll definitely ask when I see him Monday. I was reading that the Imodium actually helps absorb the water, so I’m wondering if that might be the solution to this annoying issue. [ more ]
Jessi Thanks for the reply, Scott. I’m using lots of barrier creams. I started using them as soon as I had my first bowel movement in the hospital after takedown. Just can’t seem to get ahead of the irritation. I was given Amoxicillin for the inflammation (allergic to cipro and Flagyl makes me very ill) but had to stop it after 8 days as I developed an allergic reaction. And yes, I am able to fart off the toilet sometimes. Usually if I am laying in bed. I don’t trust it too much yet. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Possible Hemorrhoids?
KalynKalyn
Kalyn Hah. Thanks Scott! I was trying to be...polite, even if not completely correct. I appreciate that knowledge. [ more ]
Scott F I’d also guess hemorrhoid. FWIW, the rectum is technically the very last section of the colon, certainly not visible externally. The polite name for the exit point is the “anal verge.” The impolite name is known to all. [ more ]
Kalyn Thank you so much for answering! That puts my mind at ease, just to know it's what I thought it was. I see a lot of sitz baths in my future. [ more ]
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J-Pouch ForumsHelp! Need advice now!
6mp or jpouch
K Karinharris
Karinharris Thank you Susie so glad to hear you are doing well now sounds like the worst is behind you I know there are risks with both options and living with UC for all these years has been an ordeal but if it wasn't for what I thought was a bad flare but was actually c-diff they may not have found my kidney cancer wishing you many more years of a happy healthy life [ more ]
Aimc Mine was 3 stage. The worst surgery is the first which is the colon removal. At least for me it was. [ more ]
Karinharris Really like the thought of being able to get off medications due to already having cancer and having one kidney my friend has Crohn's and says he would only do the surgery as a last resort but the thought of getting rid of UC totally and being able to get off maintenance medication seems like a good option I am so glad to hear from others to have been there done that robotically was that done in one two or three stages [ more ]
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J-Pouch ForumsHelp! Need advice now!
J Pouch Twist at connection
B Bergie77
Catherineann When I had the twist in my pouch, then yes, eating high residue food like fruit and veg was guaranteed to cause a blockage. My surgeon warned me about laxatives when he found out I was using them to clear some of the blockages at home. He told me the most common over-the-counter ones function by causing a large influx of water into the gut, which pouches are not desgined to handle. Pouch walls are much thinner than normal colon walls so there i s a higher risk of a gut tear when jpouchers... [ more ]
Bergie77 I can barely eat solid foods without feeling blocked bloated backed up. I have to use laxatives to keep it liquid in order to be able to get some partial relief. Does fiber fruits vegatables etcc give you instant blockages? [ more ]
Catherineann I did not have a MRI Defecography done I've honestly never heard of it before. I did have a very thorough scope done under general that showed nothing. When I had an abdominal x-ray during a very bad blockage it showed that my gut was obstructed but my surgical gastro couldn't find underlying the reason for it or the ones before/after it. All blockages thankfully cleared on their own and only test that revealed the twist was the final one where the surgeon stuck a camera into my abdomen. My... [ more ]
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J-Pouch ForumsHelp! Need advice now!
A pain in the butt.
S shortjosh
Shane199 Hey Rodlg, My response above was right after my 6-15-15 surgery. Well I had a second redo and that didn't work so I ended up just removing the internal pouch and am left with a permanent ileostomy. I'm 24 years old and no one wants to hear that but I've gotten so much of my life back, it's soooo worth it!! But to say the least after that surgery, I had a leak in the pouch which was causing an abscess to form which was what the pressure was from. It feels like a bruise. Mine didn't get better... [ more ]
Rodlg ❤️
Rodlg I. Ha ing this same issue had surgery 3 weeks ago. Guys can you tell me what happened does it get better [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pregnancy with or without J-Pouch
F faljes
Elizabeth123 I had my colon out on an emergency basis due to UC in 2006 then had the j-pouch surgeries in 2007 once I had been off of prednisone long enough to undergo a major surgery. I had a couple of bouts of pouchitis in the first two years following surgery, which responded immediately to 2-week courses of antibiotics. I then researched probiotics and have been taking them religiously ever since, and have now gone 9+ years without any incidences of pouchitis. I took Garden of Life Primal Defense the... [ more ]
JG I had a one stage surgery to remove my colon and do the j pouch back in 2011 and i have chronic pouchitis that i manage with antibiotics. I got pregnant in 2014 on our first try (I was amazed) and had a healthy baby boy in 2015. I pretty much chose to have a c-section just because i was worried about messing up my pouch or getting a bad tear or something. The docs said I would be fine with vaginal delivery, but I didn't want to chance it. Anyway, my son will be 3yo in July. I saw you... [ more ]
Scott F For most J-pouchers pouchitis is an occasional nuisance, easily dispatched with a short course of antibiotics. In all likelihood it wouldn’t occur at all during your pregnancy. For a small number it can be more troublesome, though, and when J-pouches fail it’s most often from pouchitis that can’t be controlled. If you want to get rid of an external bag then a J-pouch is a fine choice. If you’re happy with the bag then you can save yourself some surgery. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Rectal Pain
R Rodlg
Bubba1028 It’ll get better each day. Even though you don’t feel it now, just take it day by day. Is there a osteomy support group around that you might be able to reach out to? Keep posting here. We’ll listen. [ more ]
Rodlg Thank you! Just want get back to life again ☺ [ more ]
Bubba1028 I only had two steps but I did have bloody mucus for the first two weeks or so. Then I’d have mucus a few times a day until the takedown bc the small intestines is technically partially hooked up. I think that part will be normal. Hope you are feeling better soon. [ more ]
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J-Pouch ForumsHelp! Need advice now!
probiotics
MIKEEYMIKEEY
MIKEEY Thanks so much [ more ]
tf I couldn't take VSL3 either. My dr said it doesn't have to a expensive brand as long as it was over 50 billion and a high bifidio, lactob. I have been taking Vitamin Shoppe brand Ultimate 10 probiotic targeted release high bifido formula 50 billion. It's about $49 for 2 month supply if u take 1 a day. I usually get when they are running a sale, I have credits. It's been good for me. [ more ]
MIKEEY Thank you so much JHendrix I will look into this. [ more ]
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J-Pouch ForumsHelp! Need advice now!
J pouch deterioration
Richard_UKRichard_UK
TE Marie Very interesting Ciromancer. On the way to j-pouch removal I elected to be diverted to a perm ileo first. I was hoping my j-pouch would get better. I should have listened to my surgeon as had the j-pouch removed 6 months later. These surgeries were at the Mayo clinic and the ileo stayed in the same place both times - on the left. When I had my meeting with the stoma nurse she just marked locations on my left side. My perm ileo works a lot better than my temp one did and I was thinking that... [ more ]
chiromancer I have had my j pouch removed. The end ileo is in approximately the same location as my loop was. The location is not usually related to how much small bowel remains. The bowel is not gravity powered. It goes down up and around. ileos are usually on the right side, but not always. I wanted the stoma to be some lower than I got, as it would make consealment easier. The stoma nurse felt it would would be less prone to leaking if we located where it was originally, so I went with her... [ more ]
Former Member I wasn't questioning or contradicting the procedures you've endured. After all, I'm just a patient and my limited knowledge of procedures has only been learnt from forums such as this or my own experience, I would of thought that when the J pouch is removed a stoma can protrode from a point close to the old stoma site and if positioned on the opposite side of the abdomen, then maybe what remains of the small intestine is not long enough to reach the old site, Before my J pouch, it was often... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Perianal Abscess Still Leaking
A analab
analab Thanks Scott! You've been really helpful. Here'a MRI report of my dad, it has too many medical jargon and we can't make anything of it (sorry about the image quality, that's how my dad sent me). The doc has said he'll go with seton stitch and keep it there for 6 months then will see what to do next based on the response. [ more ]
Scott F Fistulas can make you miserable in various ways, but it would be very unusual for it to be life-threatening. Folks here who’ve actually had setons could do a better job than I describing the experience. Nobody seems to like them very much, but they are often better than nothing. [ more ]
analab Thanks Scott! My dad got his MRI done today. The doctor has asked my dad to call him on Tuesday after he has reviewed his MRI report. Is seton painful? Also, is fistula life threatening? [ more ]
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J-Pouch ForumsHelp! Need advice now!
narrowing of rectum
L lbwhittom
TE Marie Have you had a surgical dilation? I had thus done when the pouch scope dilations didn't work. I ultimately had pouch failure but only had my j-pouch 5 years. [ more ]
Library Lil' I had my first j-pouch for 20 years, but the last 5 years I had to dilate due to narrowing. The time between each dilation became less and less. I finally made a decision to have a j-pouch redo (January 2018). Currently ,I still have my temporary ileostomy. My reversal is scheduled for July 2018. You can continue to dilate, but at some point you may need to make another decision. Only you are living your life day to day and will know when it is time to make a change or continue with the way... [ more ]
jeane I do this regularly also for the same reason. My options were temp ostomy and pouch advancement. I also have stubborn anal fissures due to the narrowing. So far i have sticking w dilations every six months but definitely not the optimal situation. [ more ]
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J-Pouch ForumsHelp! Need advice now!
What should I do?
A Ajd4957
TE Marie It sounds similar to one of my former problems- a stricture. I had to give myself enemas in order to empty . If it is a stricture it might also be the cause of your pain. A pouch scope would help diagnose and they could do a balloon dilation during the scope. [ more ]
Scott F Whatever order you do things in, it’s best to make one change at a time. That makes it easier to figure out what helped. [ more ]
Ajd4957 Thanks so much Scott!! I will try that. I did hear also maybe getting some Kefir or high probiotic yogurt might help too. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pain during and after a blockage
EmmyschmemmyEmmyschmemmy
msh98991 ❤️
skn69 Emmy, Sometimes the blockage isn't something that you ate but something that is eating you...stress, a twist, stricture, scar tissue/adhesions, an elbow in the gut or something else...just remember that at the 1st signs of it, stay off of solids, stick to hot liquids, try grape or prune juice to chase it or hot green tea, massage the area, bounce (yes, I bounce on a pilates ball and stretch my abdomen over it backwards...sometimes I can stretch it out), walk, climb... Just avoid food and... [ more ]
Emmyschmemmy Hi Sharon, Thanks for your reply! I am feeling so much better today. Just ever so slightly sore in the abdomen, particularly when I eat. The waves of pain died down after being on a liquid diet for 24 hrs, and I’m slowly transitioning back into soft solids. I was hoping that I’d be able to see what was causing the blockage when it worked its way out, but I never did! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Single stage on 4/30
R RyanDad
RyanDad Wanted to provide an update on this. First of all thanks for the responses. We actually had a hospital CNA come in with an entire bag of tricks to try and give my daughters some relief to the issues. They spent about 2 hours in the middle of night trying different configurations of pads and bandages, adult and childrens diapers until they found what worked. It was a combo of adult diaper and maternity pads that gave her the comfort/dignity balance that worked. For the most part the single... [ more ]
skn69 How old is she? You didn't say... Yes, the drainage tube is a pain, disgusting and very uncomfortable...The only help is constant distraction, keeping her busy with other things, get her to keep a diary or journal of the travels through healing. It is a temporary upset in a long journey towards a better life...as Scott said, this is a good thing...it is almost over. Let her complain, cry, bit-ch, cry whatever it takes, this is a huge change in her life even if it is for the better, look out... [ more ]
BenB Tell her to remember why she is there. It's a means to an end which will hopefully allow her to get her life back on track. I had my final surgery last week, sore and bruised but well worth it. My drainage tube went in just above my groin, leaked daily, caught it a few times while moving, was a nightmare but needed to be done. Stay strong. Wishing her all the best and a swift recovery. She'll be up and about in no time [ more ]
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J-Pouch ForumsHelp! Need advice now!
Does this sound like pouchitis?
K 07kro
07kro I haven't spoken to my gastro doc (haven't seen him in over 2 years, before I had the first of my surgeries), but I have an appointment with my surgeon tomorrow. I am feeling better today though. No leakage, and the stool has firmed up a little bit. Appetite has increased as well. I hope it was just a minor gastro bug or something. [ more ]
Bubba1028 Not too sure about most of your symptoms, and seeing as I’ve never had pouchitis, I can’t give much feedback. But I did want to add that whenever I’m sick- gastrointestinal bug or anything, I seem to leak at night. I’m not sure why, but I just chalk it up to my body is concentrating on other things to get me healthy. Just wanted to throw that out there. Hope you’re feeling better. Have you talked to your Gastro doc or just the ER doc? [ more ]
Scott F I also suspect food poisoning. Some forms of food poisoning are bacterial, so the fever isn’t all that surprising. If it persists then you should be tested for things like Salmonella, Shigella, and Giardia. Your gut it still recovering, and sending plenty of fluid downstream quickly. Your pouch sounds like it’s probably working just fine, under difficult circumstances. Good luck! [ more ]
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J-Pouch ForumsHelp! Need advice now!
7+ Months, Wound From Perianal Abscess Drainage Not Healed
J Jbnyc
Keifu I know this forum has been inactive for awhile. If someone could point me in the right direction that would be greatly appreciated. After a year of responses I hope everyone’s wound is healed? Could you please give me insight how it healed? What the doctors have said during your 2nd round visits ? Any tips with the recovery process? I had my perennial abscess removed nov 17 last year and to this date I am still discharging or sometimes bleeding (it’s been 4-5 months of slow healing). The... [ more ]
BuckeyeNate At this point, there probably isn't a ton you can do (as frustrating as that sounds). Our bodies sometimes just heal at slower rates. [ more ]
Jbnyc Now, May 1st, and its still not fully healed. Does anyone have suggestions on how to effectively speed up the healing process? [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
I've just been diagnosed with Crohns and I have a j pouch
S Shelbycedrone
RinaJP I too have recently been diagnosed with Crohn’s with ulcers throughout my ileum and a stricture situated right about the tip of the pouch on the other side of the bowel. Because of the stricture, only cutting the stricture out is not possible and I am facing full pouch removal if the stricture fully closes. While I was initially shocked that I was probably going to need surgery to remove the entire pouch, I’ve come to terms with going to a pouch removal. I have suffered two long years of not... [ more ]
Still Standing I am. I was originally diagnosed with UC but with ulcers above the pouch, I’ve been given the crohn’s diagnosis. I’m on Humira every week, Entocort, imuran, plus Amitriplyn and lomotil at night. These help me maintain a fairly ‘normal ‘ life. I am scoped about every 4 months to monitor the healing of ulcers. I was really sick before my j pouch surgery. Even dealing with crohn’s , life is a whole lot better. Take one day at a time. Allow yourself time to heal and see what happens. You’re in... [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Poucher with Crohns
FM Former Member
CTBarrister As I mentioned earlier I have carried a “suspected Crohn’s” diagnosis for many years since inflammation was discovered above the Pouch. The diagnosis will not change anything, it’s how you treat it going forward that will. Laura, low carbs, low sugars, antibiotics and now biologics (Remicade) have sustained me. My scopes show that the Remicade works much better on the inflammation in the Pouch than the inflammation above the Pouch. So losing the Pouch may not end up being the issue. You can... [ more ]
Still Standing I’m a j-poucher with crohn’s. I’m on Imuran and Entocort plus lomotil and Amitripylin for night issues. As of today things are working as they should. I have ulcers above the pouch which ate being monitored for healing with scopes about every 4 months. I take things one day at a time. I watch my diet to avoid pouchitis. I take supplements to boost my health. Nothing has really changed but the diagnosis. [ more ]
LauraLee I had my JPouch for 4 years (with lots of issues) and after a Pouchoscopy last week, the doctor told me I have Crohn’s. It was shocking!! I’m still trying to assimilate everything. My first thoughts were why me? Now my biggest concern if what I would do if my JPouch fails like in many similar cases. I had a total colectomy and never got used to my ostomy bag. Those were the most difficult months of my life. My question is: Does anybody who has JPouch and Crohn’s can deal with both or mostly... [ more ]
See all 31 replies...
J-Pouch ForumsHelp! Need advice now!
gallbladder surgery and the j-pouch
ksrksr
Babs52 Yes, I recently had Gall Bladder removal laproscopically ,I have Crohns and J pouch. Surgery and recouperation was very diificult. Disdended ilea caused severe pain ,post surgery. Non stop diareha for 3 Days,,still continuing. Personally, due to Crohns complications, the fewer abdominal surgeries the better, for a person with J pouch and Crohns, unless absolutely required, my Gall Bladder would stay,, 1) Pain post surgery,, violent Crohns flare up.. 2) Doctors can not tell you what to... [ more ]
Mcalen Hi, Can anyone suggest well known laparoscopic surgeons in the UK.? thanks [ more ]
Scott F Most cholecystectomies are done laparoscopically these days, at least in the US. It's fairly easy to find sugeons with experience in this procedure, and they will have all run into adhesions before. The key is to find a surgeon patient enough to work past the adhesions safely, but wise enough to know when to convert it to an open procedure. [ more ]
See all 22 replies...
J-Pouch ForumsHelp! Need advice now!
Reversal in March, what products to have ready?
BenBBenB
BenB I'm home from hospital, was in there for a total of 3 days. Stomach is sore but everything is working. Now the training begins [ more ]
Bubba1028 I got those pad things from amazon! Good luck! [ more ]
BenB That's nice to hear, I thought Id be attempting to hold it every time I needed to go. I understand it's going to take time. I'm ready to give it my best I'm very fortunate that one of the stoma nurses I see is a J-Poucher herself. As the date approaches questions are popping into my head, ill have to have another chat with her [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
Green output
mzmcgee1232mzmcgee1232
mzmcgee1232 Wow I been eating like 6 twizzlers a day... an was wandering why I kept seeing traces of red.... lol... Thank you for the input... I'm still trying to figure it all out... it's been a little over a year since I had my jpouch...so new things keeps coming lol [ more ]
skn69 Beware of blueberries too...makes it green...vegetable chips (beetroot, purple carrots etc) they give you all sorts of colors and any gummies, kool-aide, various colorful kids' candy...all make for interesting output colors...my favorite is Twizzlers and their new flavors...all sorts of surprises! Sharon [ more ]
mzmcgee1232 omg lol [ more ]
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
Abscesses?
L Laraweb
Laraweb Thanks Scott appreciate the reply. hopefully the doctor will help me figure out the cause rather than just treat it again. [ more ]
Scott F Sometimes an abscess can recur because it didn’t fully resolve when it drained. Sometimes it may recur because is has a connection to the gut - a fistula or a sinus. And sometimes the condition that led to first one still exists, and leads to a brand new one. [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
florastor
J johnjthompson
Winterberry Hi, John. If you're taking a probiotic for the first time (or a new brand for the first time), it can take a few weeks for your gut to become acclimatized to the good bacteria. The gas you're experiencing could be the good bacteria re-populating your gut, a good sign, I think! It should resolve itself. I took Florastor for a few months shortly after my reversal and it helped, and I do remember some minor issues while my insides adjusted. I don't take probiotics anymore because everything is... [ more ]
See 1 reply...
J-Pouch ForumsHelp! Need advice now!
Imodium
HockadooHockadoo
Sunflower70 It works great for me. I take 2 per day, rarely more. Have been doing that for over a year. Btw, if you've been taking Immodium for a while, don't stop it suddenly. Taper off slowly instead, if you want to stop for some reason. Otherwise, you risk withdrawal symptoms -- kind of flu-like. [ more ]
lablover Helps my husband... [ more ]
Ænigma Oh and for me Lomotil stops the feeling of having to go but Imodium slows the actual go. [ more ]
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
Son back to loop ileo- questions
M Momma
Momma Yes always good to be home. He is a bit better today... a bit more energy and eating more. Hopeful he is on the mend. [ more ]
Jeffsmom Wow that was quick. Jeffrey is usually in for about two weeks. Aand complaining about pain for months. Im sure you both are happy to be in your own beds! [ more ]
Momma We got home from the hospital on Saturday. He’s out of pain and sleeping through the night (and day lol) and not living in the bathroom. So much better than last week, so thankful for that. I suppose this is all normal recuperation I just tend to over worry about everything. Drs never checked him for vitamin deficiency and I read some people need b shots and iron shots. I bought him some chewables. If we don’t see an improvement by next week I will escalate to the Drs again. I do think we... [ more ]
See all 7 replies...

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William J. Johnson
bjohnson@j-pouch.org

Bill Johnson founded the J-Pouch Group in 1997.

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

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This ileoanal web site is designed for educational purposes only and is not engaged in rendering medical advice or professional services. The information provided through this ileoanal web site should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you have or suspect you may have a health problem, you should consult your health care provider.


Materials presented on these pages are copyrighted by William Johnson and Linda B Hurd. Except as superseded in individual documents found here, these materials may not be sold or redistributed for profit in any way without express (not email) written permission of the authors. This includes, but is not limited to, translations into foreign languages, mass archival as on a CD-ROM and inclusion in commercially published compilations (books).

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