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J-Pouch ForumsHelp! Need advice now!
Living with fistula
S Sln
GinLyn So odd, the things that are used regularly in NA as opposed to here, and I'm sure that is true for Australia, etc. For instance, setons are very rarely used here, but the plugs with the extra cells are used regularly! I don't think they use stem cells here, however -- or at least that's not what they used with me. It was extra white cells spun together; they are having great success with it and are using it in a wide variety of surgeries. Remicade is also used here, although more sparingly. [ more ]
LHetti I had r/v fistulas instead and had two setons for 3 years, but they didn't hurt. Remicade really helped me for two years (setons were still in then). In the end, I went for the perm. ileo. as my Crohn's was getting worse in the cuff and the fistulas were just making new tracts. I'm sorry that I'm not the success story you're looking for, but wanted to at least call out Remicade- it's the one proven to close fistula tracts. [ more ]
rachelraven My GI's friend/colleague is doing clinical trials for fistula plugs that get entrenched with stem cells, and it's showing promising results. My hope is for this to work for me eventually. They don't do plugs, because of the high fail rate with the glue alone, but the addition of stem cells is showing better results. But it's not "out there" yet. Hopefully soon! [ more ]
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J-Pouch ForumsGeneral Discussion
Another Flagyl Q
GinLynGinLyn
GinLyn Yay, indeed. At least our lives aren't boring, eh? Gin [ more ]
Jan Dollar Stress can certainly be a factor. For me, when my neck was at its worst, I had spasms bad enough that they were causing my head to tilt and my shoulder to raise. I really wasn't even very aware of it. I was more focused on my tingling hand. I was first sent to an orthopedic surgeon, then the spine doc, who correctly diagnosed after an MRI. This was after PT just made things worse. Apparently, accellerated spinal stenosis is common with spondylitis. Yay! Jan [ more ]
GinLyn Thanks, you've confirmed what I thought. Another trip to the doc with another issue, yee haw. I am also wondering if perhaps the extreme stress I'm living with at the moment is contributing. Perhaps the salivary stone thing, which is still not completely gone and slightly swollen, is pressing on a nerve wrong? No clue. Sick of stupid things. Cheers, Gin [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Pregnancy and medicine
MeganMegan
LHetti Oops, I meant to say 19 when I had my pouch. I think I would say yes, talk to your GI or surgeon. The reason is that an OB will handle their side of things, but they are not the one to prescribe your medications. Therefore, you might want your GI in the loop, esp if they need to adjust medications if you're trying in the near future. [ more ]
Megan That's great to hear! Would you all recommend talking to a surgeon or a GI doctor, in addition to the ob-gyn? [ more ]
LHetti I was just when I had my pouch surgeries, so it was off my radar also! I have been very blessed to have two babies. I didn't need any fertility treatments, but it did take a little while to conceive (maybe about 8 months then well over a year the next time). The reason is took a while is certain months I was on Flagyl and not able to try. The recommendation to me was NO Flagyl first trimester. I desperately needed it with my 1st pregnancy, so they allowed it 12 1/2 weeks, but really wished I... [ more ]
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J-Pouch ForumsGeneral Discussion
Jpouch with Temp Ileostomy--Leaky butt?
IsolationaryIsolationary
CeeeeCeeee And......when it is suggested that this would be a good time to practice your kegals, smile and say, "Thank you for the suggestion." The mucus which is currently seeping out of your back end has to be the most slippery substance in existence. They should call it "Mega Lube"! Don't be disheartened if, as hard as you crunch those anal sphincters, the "Mega Lube" still manages to ooze out! Once you are reconnected it will serve its purpose by helping you easily pass effluent. More than not, you... [ more ]
GinLyn I did have that occasionally with my last temp ileo; annoying, but nothing to worry about. If it gets worse, has other symptoms, changes colours or contains blood (etc.) then you should contact your doc. Gin [ more ]
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J-Pouch ForumsGeneral Discussion
Ladies...
nocolon-2000nocolon-2000
rachelraven Antibiotics definitely affect me with causing yeast infections, but I'm more often bothered around my fistula than in the girly parts. Monistat or creams or OTC is never enough. Last time, a full week of oral Fluconazole was necessary. Ask about a script for that. [ more ]
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J-Pouch ForumsGeneral Discussion
ilex from the UK
kenadikenadi
kenadi I'm not sure what was going on with my PC, but when I first accessed the site, somehow I got on the UK page because it was showing me the prices in GBP and really high shipping to the US. Jan's link got me to the right place. Thanks for clearing things up! Love my ilex! -Kenadi [ more ]
Jan Dollar Correct, and that is only for distribution outside of the US. Medcon is still the distributor for the US and the company is still located in Massachusetts. https://www.ilexhealthproducts.com/usd/about_us.asp Jan [ more ]
Former Member Oakmed a UK company has bought the Ilex Skin Protectant Paste from its Manufactures, according to their terminology; more than likely entered into some kind of long term licensing and distribution deal. More details can be found here: https://www.ilexhealthproducts.com/about_us.asp [ more ]
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J-Pouch ForumsGeneral Discussion
Sore butt
U UjohnjC
Fight like a girl Hi UjohnjC...I struggle awful with this too. Sometimes I just cry. I was able to quite things down a bit with lomotil (prescription) and B&O suppositories from Dr. Still awful sore though. I have a fissure that won't heal. I only use warm soft papertowels with vaseline while wiping and then I leave some vaseline on. I take sitz bath with epsom salts as often as I can too. I try to stay away from anything that has alcohol in it burns really bad. So sorry to hear of your pain. [ more ]
Former Member Try ilex paste; it's by far the best product for such a situation: https://www.ilexhealthproducts...d/products.asp?cat=1 If in the UK, it's also available via a NHS prescription: https://www.ilexhealthproducts.com/default.asp [ more ]
UjohnjC I've been dabbing and I have bidet [ more ]
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J-Pouch ForumsGeneral Discussion
Frequent trips
U UCBloke
UCBloke Hi, sorry for the late reply! Yes they have told me to take immodium (instants) 2 x 4 times per day. Not really making a difference. I still get the multiple trips per hour to pass a small amount. Occasionally I do get a full release of the pouch, which makes a difference to how I feel adterwards, just need this to happen each time I go. Thanks I've been reading.. I know it's a question for my doctor.. Can I take Bentyl or something similar at the same time as immodium? [ more ]
mgmt10 40x a day is quite a lot even for the early weeks post op. Have they given you anything to slow the bowels such as Lomotil or Imodium? [ more ]
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J-Pouch ForumsGeneral Discussion
Please help re: nausea/dehydration/medications
TE MarieTE Marie
TE Marie P.S. I lost a lot of weight after my surgeries too. No one worried about it that much as I had plenty of prednisone weight to loose. I'd suggest that you drink protein drinks. There is one out by Carnation that is 100 times better than Boost. They are high in calories and are healthy for you at the same time. It might help to drink them in-between meals as it is better if we east smaller more frequently than the usual 3 meals daily. I also use PlantFusion which is a protein powder. I mix it... [ more ]
TE Marie I'm sorry you are nauseated as I think I know what you are talking about Branchy. I had a lot of dehydration problems after my first surgery. If I wasn't projectile vomiting I was nauseous. So it's a good thing that isn't happening to you. I know how it feels when we think throwing up will make us feel better. My take down was 4+ years ago and I'm constantly working to stay hydrated. My metabolism is also messed up because of my thyroid so I don't know why I just started having the nausea in... [ more ]
Branchy Hy everyone, I have same problem very unpleasant nauisa and it's so bed that keeps me awake at night. It feels like I am going to vormit but I can. I had my 1st surgery February 2nd and nausea started 10-15 days ago suddenly. I did't change anything regard to my diet or take any new medicine. Since I was released from hospital I all take Controlok(for stomach).I tried every natturally preparation,but nothing helped. I'm waiting to get a date of my 2nd surgery but I am very afraid becouse of... [ more ]
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J-Pouch ForumsGeneral Discussion
Please respond if you have insight
ccanepa456ccanepa456
Jan Dollar Not specifically, but if you have evidence of Crohn's or ischemia, that might give some clues into why prolapse is occurring. There are a number of different types of prolapse too, and the defacogram would sort that out. A thorough workup can help unravel a puzzle. It may not seem relevant now, but itmight be later. Chronic fissures can be a sign of perianal Crohn's, so something to consider. Fissures occur on their own too, so don't get worked up about that. Jan [ more ]
ccanepa456 So the biopsies won't tell him anything about the prolapse? [ more ]
Jan Dollar He is just being thorough. If there is evidence of Crohn's or poor blood supply (ischemia) in the biopsies, that would be helpful information. It would not determine if there was prolapse, malrotation, or other structural issues, but it might help figure out what the mechanism was to get you there. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
surgery scheduled for may 5, doubting my decision
N nharr613
Scott F I had my surgery 1600 miles from my home, which certainly counts as traveling. My brother lived in the area, though, so I was able to stay with him on discharge. Also, I had a single stage procedure, so I only had to go through it once. [ more ]
Mysticobra I found out for sure I had UC at 40. I will be 59 in a few months but had my colon removed at 58. Elective. I chose to. Looking back I think I had it all my life. Just no big enough flare till 40 and was sick as a dog. But simple meds put it in remission for 10 yrs. From. 50 till 58 I was up and down with it. I was like you. OK most of the time. But had flares. I won't go into details. We all know. After my surgery I had the worst time in my life. Problems cropped up... Not the surgeons... [ more ]
Jan Dollar Yes, I agree that your ongoing use of topical meds will improve the appearance of your rectum. But, that does not mean it is not affected. It just means that portion is responding to topical treatment. So, you are right that your decision to go forward seems right for you. One caution I must put forward at this point is in regard to your desire to go forward with surgery to avoid medications. Please do not place your idea of success on whether you are able to be drug free. It simply is not a... [ more ]
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J-Pouch ForumsGeneral Discussion
Cough/lung issues - who to see?
n/an/a
Jan Dollar Good news that you have an effective treatment. It probably does not matter if this was related to your IBD history, since the treatment would be the same. Jan [ more ]
n/a An update - I did see a pulmonologist, and after a few tests (including a methylcholine challenge), it appears my cough is possibly asthma related. No, there's no certainty in the dx at this point, however - we are trying a steroid inhaler (Qvar) which is working great. Not sure if the cough was in any way related to the IBD process, but am very pleased that there is a relatively easy/benign(?) treatment. There are other dx possibilities, including bronchiectasis and vocal chord issues, but... [ more ]
n/a My GP put me on meds for acid reflux to see if that was my problem, as well. They didn't affect my cough at all, unfortunately. He also tried antibiotics for a possible sinus infection (no affect), and nasacort. We did not discuss the possibility of IBD-related lung issues, as I didn't really consider that until recently. [ more ]
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J-Pouch ForumsGeneral Discussion
Pituitary / Adrenal Issues
P Pouch4Wf
Cdub I have Addison's Disease (secondary) caused by the treatment of my UC in my teens. The dosage was (the medics have acknowledged in retrospect) too high and for too long, and I was diagnosed with the Addison's and Hypothyroidism about five years later. I'm on Steroid replacement therapy for life, most probably. It's generally very manageable, and after the UC doesn't seem like such a big deal, but energy and tiredness is an issue. [ more ]
Jan Dollar So, what is your resting heart rate when you are not under stress? I ask because THAT is what is what you should be looking at. Stress and anxiety are normal triggers for adrenaline. When I had my 24 hour cardiac monitor, I had runs of tachcardia while sleeping or reading the newspaper. So, no, I do not recommend that you increase your stress during the test, but just go about your normal day. Read here for more info on inappropriate sinus tacycardia:... [ more ]
melissa111 Thank you! This helps me a lot. Your situation sounds almost EXACTLY like mine, except I'm pretty sure my heart rate was normal before age 13. I think if I do have the tumor, it is intermittently secreting because I only have symptoms at certain times and the triggers are hard to explain to doctors. I'm afraid any test I do won't be accurate for that reason. My resting heart rate is always higher than average, even when I'm calm and relaxed. But on days when I'm stressed I can really feel it... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Possible obstruction?
SassyanSassyan
tulsamom It doesn't sound like a typical obstruction which usually comes with sharp pain in mid abdomen and nausea. I'd look at other ideas.. [ more ]
Scott F If you're not having pain I'd also consider a stricture a possibility, and there are other less likely possibilities. Have you scheduled a GI appointment? When was your last pouchoscopy? [ more ]
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J-Pouch ForumsGeneral Discussion
Famous Persons With UC/Crohn's Disease
CTBarristerCTBarrister
Paul H In the UK, Darren Fletcher who played for Manchester United & now for WBA & Scotland had UC & now is a pouchie is playing full time again. [ more ]
Spooky It may have been mentioned already, but Amy Brennem, actress on TV shows including Judging Amy and The Leftovers, has a j-pouch. [ more ]
Jeffsmom Marie, I think all that screwing around contributed to him back problems! [ more ]
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J-Pouch ForumsGeneral Discussion
Pouchscopy, I'm a bit worried
I Ikh
Ikh Thanks TeMarie, I'm reading it. I don't like the idea my pouch is not healthy, although it's not that bad, and I don't feel much bad. I'd prefer to find a trick to remove the inflammation as the pouch is doing it's work very well... I don't know if I need maintainance antibiotics, I suppose that I should kill all the bad bacteria causing the inflammation then repopulate (day by day) with good bacteria, then have a nice diet (but not so strict) and then perhaps have a maintainance antibiotic,... [ more ]
TE Marie VSL#3DS has 900 Billion bacteria per sachet as compared to other's with 5 or 10 million or billion. Below is a link to a paper written by Dr. Bo Shen from the Cleveland Clinic and others. It's about everything that can and does go wonky with pouches. Please look for the page #658 were they talk about testing the efficacy of VSL#3. The article isn't that long There was obviously over 600 pages relating to something else. http://gastro.ucsd.edu/fellows...%20Review%202009.pdf If you get better... [ more ]
Scott F VSL by enema is quite interesting but poorly studied. Oral VSL does pretty well surviving the stomach, unlike the bacteria in yogurt. Why not try it the usual way first, and save the experiments for if the usual fails? [ more ]
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J-Pouch ForumsGeneral Discussion
Lomitol
U UjohnjC
UjohnjC Thanks Scott usually can hold it so sore today hard to hold it im only taking 1 lomtil 3x a day now [ more ]
Scott F Increasing the dose might not help, since you're getting a signal to go when only a tiny amount is in the pouch. Can you ignore that signal a bit, to help your accommodation? In any case, you *really* don't want to take more than two tablets at a time, nor take them closer than 4-6 hours apart. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Takedown- Leak - HELP!!
T tango9
Jeffsmom Tango, funny you should ask. My son just went through this. In Dec they found an abscess near his pelvic bone. They put in the drain. In Jan they found the fistulia. Put him on TPN. Was on TPN on two months. unfortunately it didn't work. The fistulia actually got larger. So, on March 12th they reversed the j-pouch to put him on complete bowel rest. So now, he has his ostomy back for 6-8 months. Hopefully you will have better luck. But I have to tell you, being on TPN is extremely difficult. [ more ]
tango9 Has anyone had success and avoided more surgeries by going on TPN with a drain to get rid of a fistula post take-down? [ more ]
GinLyn Of course you are frustrated!!!! Probably a bit frightened as well. I did not have exactly that problem, but did have my own shares of ups and downs. Hang in there -- and yes, I know exactly how impossible that seems. Perhaps they can repair the leak when/if they go in surgically, but if there is too much fecal loss you run a major risk of sepsis; it is truly better to be safe and go back to the ostomy for a bit and get totally healthy again before trying the pouch. So sorry, Gin [ more ]
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J-Pouch ForumsGeneral Discussion
mayo clinic doc recs
D desisn00ps
Madi78 Dr. Robert Cima is a great colo-rectal surgeon in Rochester. [ more ]
TE Marie Are you talking about Mayo's in Rochester, MN? If so my GI there is Dr. Edward Loftus, Jr. He's the director of the IBD clinic there. If you can't get an appointment with him I'd suggest you get an appt. with someone else. Every other GI and medical professionals that I've dealt with have been great. It sounds like you really need a surgeon and I can't help you there. [ more ]
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J-Pouch ForumsGeneral Discussion
Chest Pain
slightly_creativeslightly_creative
skn69 My mom taught me that the darker the stool (containing blood) the higher up it started. So if it is black and tarry it is very old blood (or something else that I don't remember the name of) but fresh blood from local irritation, fissures, ulcers or other such things is bright red or a diluted red due to mucus or other fluids. Yes, those air bubbles are unusually sharp going down ... Still, be vigilant...dehydration can also cause chest pain from what they call thickening blood (in cases of... [ more ]
slightly_creative Thanks for the reply Sharon, After reading your explanation on the feeling you've experienced (like a stuck lump inside the esophagus) I'm sure that's all it was. The last bit of juice that was in the cup I rushed down and probably had air trapped inside which caused that pain. I've been concerned with some of the colours exiting my behind. I've seen really dark brown, almost black stool before (closer to when I had a pouchoscopy, possibly the cause if anything inside was irritated?) and... [ more ]
skn69 Hi Slightly creative, How are you doing? Yes, I get certain types of chest pain, usually linked to swallowing too quickly (feels like a square lump of something is stuck in there), a huge air bubble getting stuck, a small elbow in my guts or some other such thing. I stopped thinking it was a heart attack every time once I saw a seriously good cardio God... The other chest/back pain that I used to get was a very unhappy galbladder that rocked and rolled in there and caused horrible... [ more ]
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J-Pouch ForumsPouchitis
Pouchitis....I suppose...?
P Pouch4Wf
Jan Dollar At first glance, I'd say no, this does not sound like pouchitis. Diarrhea is a hallmark symptom of pouchitis. But, your wife has a lot going on. Overlapping problems, lots of meds, and a difficult recovery/pouch adaptation. I had some pretty bad pouchitis without severe frequency, but a LOT of abdominal pain. Six months of Cipro is a long time, so switching to flagyl makes sense, since bacterial overgrowth could still occur on Cipro. Now that she is off bowel slowers and opiates (good for... [ more ]
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J-Pouch ForumsGeneral Discussion
radiations impact on the burning and itching
T TracyAnn
TracyAnn Thanks so much for the info Jan. You are an amazing help to many. ~Tracy [ more ]
Jan Dollar I have heard of other members here having similar burning rashes, but they did not have radiation. I would susect that this is due to minor leaking and not your prior radiation treatment. Radiation damages fast growing tissue, so it could be related. My main thought is that this is a fungal infection (easy for the doc to check by looking at a scraping under the microscope in the office). In any event, silvadene creme is both antibacterial and antifungal, so you should be good. It can take... [ more ]
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J-Pouch ForumsGeneral Discussion
Rectal/vaginal fistulas and ruptered jpouch
jonnakayejonnakaye
Jeffsmom Jonnakaye, I'm so sorry that you have to make that trip to Cleveland alone. i can't image going though all that without someone. Thank you for your kinds words and I'm happy I inspire someone! jeff and me too, have just been through so much, we both have our health problems but I learned a long time ago, you have to be positive. everyone on this forum, you folks have all gone through so much. Much more than Jeffrey I think. Even though he was diagnosed at 6 years of age, he was more acute... [ more ]
dtmack Originally Posted by jonnakaye: The time is getting closer for me to have multiple tests then surgery, about a week from now. I will be going alone. My family is small and they have to work and are helping take of my three children. CC is about 800 miles from home. This makes me anxious. Jeffsmom I hope that your son is feeling better and that you get to go on that trip to Disney. He is blessed to have you to care for him. You are such a positive inspiration to me. Dtmack I hope that you... [ more ]
jonnakaye The time is getting closer for me to have multiple tests then surgery, about a week from now. I will be going alone. My family is small and they have to work and are helping take of my three children. CC is about 800 miles from home. This makes me anxious. Jeffsmom I hope that your son is feeling better and that you get to go on that trip to Disney. He is blessed to have you to care for him. You are such a positive inspiration to me. Dtmack I hope that you were able to have your reversal... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Itchy & Raw
N Nancy17
Ljz I'm sure you're suffering because of frequency and acidity related to output being from small intestine. Itchiness could be related to fungal infection from all the moisture. My doctor prescribed Nystatin, though there are other meds that could help too. I use Ilex paste as a barrier cream- have to order online but made all the difference for me! You have to clean it off with Vaseline as it sticks really, really good! hope you feel better soon! ljz [ more ]
sunshine24a hi all new to the group ive had my Jpouch since 2004 when I've has the burning going on I use PawPaw cream always have a tube , rarely need it now , just on toilet paper a bit 1/2 teaspoon takes the sting out nearly straight away relief whoo hopefully helps x [ more ]
TE Marie Thanks for the tip! I've discovered that using a bidet with warm water also promotes emptying of my j-pouch. As the water is cleaning it promotes other BM's which is great for those of us who go and then have to go again 15 minutes later. [ more ]
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J-Pouch ForumsGeneral Discussion
probiotics...?
FL Fight like a girl
Fight like a girl Hi Scott..I actually asked Dr. Shen yesterday at my appt. his thoughts and he agreed that they need to be taken as far apart as possible from the antibtiotic which I didnt do at first. He also had no yes or no answer that taking them is not valid. He said everyone of his patients are different and you need to do what your body is asking from you. So if I feel better while on them..I guess that would be my answer to stay on them but to take them at different intervals. Thanks again. Patti [ more ]
Scott F I'm on both antibiotics and probiotics all the time. I'm pretty sure the probiotics are providing a benefit, based on how things went when I tried to reduce them. In any case, I take a very high probiotic dose (4 packets of VSL #3 DS daily, 2 at breakfast, 2 at dinner), and separate it from the antibiotic by as many hours as I can. It helps that the antibiotics seem to work just as well (for me) taken once daily as more often. I know the probiotic would be more effective without the... [ more ]
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J-Pouch ForumsGeneral Discussion
Flu and diarrhea
ktakta
Virdent Have you tried any pepto bismal? I swear I just got over the flu and for awhile there I really didn't want anymore water so I just drank whatever i could gulp down in mass so when water got boring I drank coke and it really didn't seem to give me any excessive D Where as I tried some vitamin water and that went right through me. Also, if you have any of those Vietnamese pho noodle shops around I suggest getting some somehow or another, those are perfect for being sick. [ more ]
kta Thanks, Sharon. I've taken your food advice and that seems to help. Yesterday, I began to feel a bit better and thought I was on the mend. Today, back to *#!~. I called my j-pouch doc and he wants a c-diff test today. Hopefully, my regular doc will do that, otherwise I have to drive clear into Seattle feeling like this. I'm just glad this happened on Spring Break - I'm a teacher- so I don't have to miss work and worry about what the kids are doing or not doing. [ more ]
skn69 Coconut water, chicken broth (the canned kind is full of good sodium), jello and rice water (cook the rice in double the water and drink the thick starchy fluid...it helps to bind things in there...you can add either salt or sugar and cinnamon to it)...when you are feeling better you can eat the rice. If you get dizzy (which you probably are anyway) up your sodium intake (try mixing a pinch of salt, a tsp of honey and a few drops of lemon juice in with a jug of water...it can be drunk the... [ more ]
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J-Pouch ForumsGeneral Discussion
Finally - surgery to end the obstructions
clz81clz81
TE Marie Holy Cow! I'm glad you are finally home where you can sleep in your own bed and for how long you want without them waking you up to take vitals etc. I think you got a rotten deal. Isn't one of the major benefits of having laproscopic surgery is to avoid scaring and adhesions? I was in the hospital 16 days with my first surgery and they only threatened inserting the tube several times. I can only imagine how that goes but it sounds pretty nasty! Take care [ more ]
CTBarrister Thankfully I don't have the same amount of experience as you with the NG tube (only had it once), but when they put it down on me I was vomiting and physically resisting the attempt to insert it. Since I was only 137 pounds at the time, I was easily overpowered by the Doctor who, as far as I could tell based on my limited experience, did an aggressive, forceful NG tube insertion that was skillfully done. It was 100% that I was not the first resistant NG tube patient he had encountered. [ more ]
TE Marie ❤️
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J-Pouch ForumsGeneral Discussion
Thinking about reversal
T The-SilMarillion
Lambiepie I'm an ex-poucher, too. They don't always remove the pouch, for instance if you're very ill or not up to that much surgery at once, but it's advisable to remove it eventually as it's considered "dead tissue" (I think?) I had mine removed, rectum removed, anus sewn shut and shop closed back there. This surgery was not as difficult as I'd expected, maybe because I was so ready for it. Percocet helped with the anal discomfort for a few weeks, then the pain just went away. I could sit from the... [ more ]
Ljz Question about reversal from jpouch to an Ileostomy... do they always remove the j pouch during this surgery? do they always sew butt shut? do they do it all at once? Long hospitalization and recuperation? I realize these are both big surgeries, but do not know if they are the norm for reversal or optional. I know if I were to revert to ileostomy, I wouldn't want to deal with any mucous or other leakage like I had with loop ileostomy before my takedown. thanks! [ more ]
The-SilMarillion Thanks for the reply. With each passing day, I believe having a permanent iliostomy is the best move for me. I've been deeply depressed over the last year or so, even to the point of complanting suicide. But the biggest issue I have right now is that I lost my job last August and don't habe health insurance. I live in the US but have a very little support here. I'm complanting moving back to England and getting the treatment there. [ more ]
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J-Pouch ForumsGeneral Discussion
Any tips for spicy food?
ATXGuyATXGuy
Scott F It's worth remembering that people with unaltered GI tracts can also experience this. It has inspired hot sauces named for how much they will make a person's butt hurt. [ more ]
ElmerFudd My quick answer: don't do spicy foods I have tried taking antacids along with spicy foods, and I do think it helps reduce the burn on the way out. I always tell people, a spicy factor of 1 in your mouth is like a spicy factor of 10 coming out of a j-pouch. I know that's not always true, and not true for everyone. But oooh the burn. Sometimes I'm willing to pay the price though. Steve [ more ]
Riya ❤️
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J-Pouch ForumsGeneral Discussion
Jan..?about long term Levaquin
H hattie
ElmerFudd I have become an anti-flouroquinolone (Avelox, Levaquin, Cipro) person, except as an absolute last resort. I have wondered if my nerve issues were delayed responses to being on those antibiotics. Read more about how these drugs work, and you will be averse to taking them except as a last line of defense. It's no longer just tendon rupture, but nerve damage that can occur with these meds. And for some people it just takes one round to do the damage. You will read about peripheral neuropathy,... [ more ]
Jan Dollar Funny indeed! Jan [ more ]
Jeffsmom Jan, I'm laughing because Jeffrey and I are so much alike in terms of some our health issues. We have almost exactly the same allergies! Bit the reason I'm laughing is because Jeffrey was adopted !!!. Other than his autism and IBD problems, the kid is really healthy. When he was younger, he never got the cold, stomach virus, or any virus, I did! I got it all, all the strep, colds, stomach viruses and what ever was floating around. It was a rare day that he was sick. Even to this day, I catch... [ more ]
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J-Pouch ForumsHelp! Need advice now!
total colectomy wiht j pouch
bederyparisbederyparis
skn69 Bederyparis, Did you say that you are in Paris? Who is your surgeon? Where are you being followed? There are certain surgeons who speicalize in open surgery and others do the j pouch through laporoscopy...I feel that the less they open you up the better. I agree with Jan, better a pouch than colon cancer. Some people are 'pouch lucky' and their body's adapt and settle down within 6 months...they go back to a new 'normal' life where they are pretty free to live any way they like and do not... [ more ]
CTBarrister For me, it was also a dramatic change for the better. I didn't have cancer but I did have dysplasia, and my colon was very close to perforating. If I interpret your post correctly, you are trying to choose between ileostomy and J pouch. I quite frankly hated the ileostomy when I had it, and even though it was a temporary loop ileostomy, there were clearly signs that I was going to have problem with any type of ileostomy. My skin reacted severely due to placements of ileostomy bags resulting... [ more ]
Jan Dollar For me, it was a fairly dramatic change, for the better! I was in a severe refractory flare with 20-30 BMs per day by the time I opted for colectomy and j-pouch. I have a higher than average frequency, more like 6-10 on my good days. Imodium (loperamide) does reduce frequency, but I try not to try to thicken my output too much. It can take 6-12 months before things settle down to what your long term function will be. Sure I can do long haul flights and travel, but I plan well. I take extra... [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Conflicted :(
S SemirA
Spooky I agree with what others said. Despite what you may read and what some doctors may tell you, a j-pouch is not a cure, nor can you ever expect to be the way you were before you had UC. But for the majority of people who undergo the surgery, there is a significant improvement in quality of life compared to when they had UC. Although my case was atypical in that I went only 3 weeks from the time of my UC diagnosis to surgery, my surgery was done as an emergency. I was critically ill going into... [ more ]
skn69 LIfe and experience changes things. What seems like a big thing or a deal breaker at 18 seems like a cake-walk at 30 or 40. 3-4xs/day? That is a gift. Do not have major surgery until you must. This is not a preventive measure or a cure as Jan says but a trade-off so beware. Some people have a very easy time of it, a few (3-6) months of difficulty with liquid bowels and then a life where their pouch behaves nicely forever. Those people are not posting on this site. They are very busy living... [ more ]
CTBarrister Don't wait too long and get toxic megacolon.......that's what almost happened to me and my colon was dissolving in my surgeon's hands when it came out, per what he told me. If it dissolves from the inflammation while it's still in your body (and you won't necessarily know it's happening because it will feel like your typical flare), things will get dicy..........4-6 bowel movements a day is not the end of the world. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Burning and Itching
J Jodih
Good to be healthy Imodium and Zantac help me [ more ]
Ljz Good luck! My mornings better too! Hope the Immodium and Ilex make a difference! Keep us posted! laurie [ more ]
Jodih Thank you all for the suggestions. I received my tube of Ilex today and will give it a try tonight. It seems evenings are worse than the daytime. I've tried calmoseptine and it did nothing for me My surgeon finally let me start Imodium and I think it's helped. Thank goodness every day seems to get just a little bit better. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Obstruction?
L LisaT
CeeeeCeeee I'm in classrooms all the time (supervising student teachers) and the scariest ones are preschool classes. Yesterday, the kids, the teachers and the assistants were all sick! The minute I left their classroom I washed my hands up to my elbows, practically bathed in Purell, rinsed/gargled my mouth with mouthwash and sprayed my nose with saline solution and blew, blew, blew! I'm keeping my fingers crossed that I didn't catch whatever was so abundant in that classroom! I'm really paranoid about... [ more ]
LisaT Thank you, Jan for the quick response. My gp didn't mention it to me last week, but I will call her tomorrow to double check. What's kind of interesting is, I was on Remicade for 2.5 years and NEVER got sick! I've been off of it for 8 weeks, and I've been sick as a dog. As a middle school teacher, we're near more germs than a small country! [ more ]
Jan Dollar I suspect it isn due to your virus. Even though it targets the upper respiratory system, the effects can be more broadly systemic. Long story short, many of us get gut symptoms with any sort of virus. You absolutely would have serious abdominal pain if you had an obstruction of any import. Are you sure you are OK to travel with the bronchitis (not to mention exposing others to the virus)? Jan [ more ]
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J-Pouch ForumsGeneral Discussion
New Cuffitis Statistics from CC
Jan DollarJan Dollar
Ljz Thanks TE Marie again for your input! Yes, I did take Asacol, with success, early in my UC days. Think I took it for a couple of year, then when UC moved up went to Imuran, which also worked very well for me. Then Remicade, also worked for few years! Thankfully! A sorry day when it just suddenly stopped! I prefer to treat directly (foam, suppositories) vs. oral meds, but just feeling like 2x day not enough. Maybe tomorrow he will propose I treat with foam more times per day to get under... [ more ]
TE Marie Anucort is Hydrocortisone Acetate 25MG suppository so I don't understand what your doctor meant when he said it wasn't hydrocortisone. I've never used foams so maybe that's what he meant - foam would reach more of your jpouch than the suppository Anucort treatment. I've read where a few people are allergic to Canasa. You said it hurt in the beginning and I'm thinking that was just because your cuff was so bad. It is mesalamine which is the active ingredient in Asacol and other oral... [ more ]
Ljz TE Marie, gives me hope that even after long time- 5-8 months that your cuffitis went away! I will keep up with the Canasa and foam and hope it works. My gastro thinks Anucort not as strong as Hydrocortisone so I never took that. I do take Lomotil - max 8 per day. I had bad irritation with Canasa initially but I've added it in as an extra dose recently with no ill effects. I do notice that after using the foam and Canasa I am able to have better/ larger BM, frequently with less blood so,I do... [ more ]
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J-Pouch ForumsPouchitis
Getting up every 1 or 2 hrs at night, help!
TinatTinat
Wes Safado I have had my j pouch for about two years. About 6 months in I started getting pouchitis regularly. Tons of urgency day and night. Up lots at night. I would take Cipro and it would go away for a few months and then come back again. We tried all sorts of tests to check out my intestines and see what was happening. Eventually my surgeon saw that I needed to dilate my rectal cuff inside regularly. I was terrified to do this. He said I needed to get a dinner candle and shave it down until it was... [ more ]
Catinthehat Repeating myself here, but Tylenol 3 (w/codeine) helped some, but since I have switched to opium tincture I can sleep 6-8 hours with no leakage or getting up. (I had been having frequent accidents at night). I often eat dinner about an hour before bed (due to schedule). I have found that a small glass of wine or even 1/2 bottle of beer with dinner will increase my chances of having problems. My GI doc totally supports the use of opium tincture. I don't feel addicted to it and it only caused... [ more ]
Bossis Originally Posted by jdhalf0110: So glad I took the time to come online. I have had a J pouch for almost 20 years, and have had the same issue off and on for most of that time. I have tried a light dinner, and or not eating for 3-4 hours before bed time. That might work, except for the fact then I wake up in the night so hungry I can't go back to sleep until I get up and eat something. A good night is one when I only get up 2-3 times, and those don't happen nearly often enough. I'm so tired... [ more ]
See all 17 replies...
J-Pouch ForumsGeneral Discussion
Jpouch and anemia
T TeensMom
Scott F Just as an aside, there's a big difference between men and women in this situation. Women do have an obvious source of bleeding until menopause. [ more ]
Spooky As others have suggested, iron deficiency is not uncommon with the pouch. I've basically dealt with anemia on and off since my colon was removed, with my hemogloblin sometimes fluctuating in the 8-10 range. Although I struggled with bleeding at the staple line a few years ago that contributed to the problem, other times there really was no rhyme or reason for my deficiency, as all other tests checked out and my diet was not lacking. My anemia has been under very good control for the past... [ more ]
KDelphi 21% of j pouch patients have anemia, and, this article, at least , is not sure why it occurs (or the other bloodwork anomalies, that, in me, at least, seem to be permanent) I also cannot take iron (but my primary problem before j pouch was constipation, so...) http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3424428/ [ more ]
See all 11 replies...
J-Pouch ForumsHelp! Need advice now!
Leakage from incision
JeffsmomJeffsmom
Jan Dollar Seromas can continue to produce drainage until the pocket collapses, so don't worry about that. I've had personal and professional experience with them. They are a nusuiance, but pretty benign. Hope the Tegaderm helps. If not, try trimming the wafer so that there is enough of a dry margin away from the incision, even if it means a smaller area of coverage. Jan P.S. Tegaderm is a cool product. I remember when it first came out. It was a really revolutionary product for dressings! [ more ]
Jeffsmom Oh great! Thanks Jan!! That would our luck. I just told him not to squeeze it. That it could make things worse. I'll call the surgeon tomorrow, but they only see patients on Weds, and Thus. I may just end up in the urgent care. The drainage amount has not lessened, not worse either. It just keeps coming out and coming out. It ends up leaking under the wafer no matter what we put on. I've tried waterproof band aids, gauze under the band aids, today I bought Tagaderm with the hope that that... [ more ]
Jan Dollar Discourage squeezing the incision! This could backfire and cause the internal sutures to fail and expose him to an infection that is deep, as opposed to a simple external one. Let the surgeon mess with it if it needs it. A teaspoon a day is no big deal, but let it drain on its own. I had a peritoneal leak that was saturating heavy dressings in a few hours. That thing took a couple of months to heal and it was the beginning of a cascade of complications that were rather huge (with my... [ more ]
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J-Pouch ForumsGeneral Discussion
Can having a pouch increase your risk for Crohn's?
SolomonSealSolomonSeal
Fight like a girl Good Evening Jan...yes that is what I meant being aggressive with starting some form of treatment not just antibiotics. I really feel I need to get this under some form of control. Can't sleep at night because of the pain and urgency to go and wearing pads now because of accidents. Bottom is so raw and the fissure just won't heal. So much pain! Dr. Shen gave me B&O suppositories awhile back to use but I couldn't even get one in without doubling over in pain and then when I finally did... [ more ]
Jan Dollar De novo simply means new, as in not previously seen. Does it mean you have a new disease? Maybe, maybe not. The doctors are intentionally vague, because they just are not sure. But, like CT said, it does not really matter what they call it. You have whatever it is. Often, a diagnosis change is more about accessing more treatment options, as insurance coverage often follows FDA approved protocols. So, yeah, it makes sense to be more proactive about discussions regarding treatment with Dr. [ more ]
Fight like a girl Hello...what does de nuvo crohns mean? I have had many scopes and biopsies done in the past 3 years and shows changes with "possible crohns identification" per Dr. Shen. But here again, possible. But with just being treated with antibiotics with no improvements...wouldn't you think I should be more aggressive with Dr. Shen and ask to at least try meds that target crohns and just not pouchitis, cuffitis, ulcers, c-diff, fissures???? And yes...the sky is falling when I hear the words ... [ more ]
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J-Pouch ForumsGeneral Discussion
SIBO
K KeepFighting(Manny)
skn69 I have never been tested for it but assume with all of the sugar that I consume(d) that I have a reasonable case of it...I cut out most breads, cakes, pasta and pastries (not easy where I live...Paris) and have practically removed candy from my diet but still eat tons of fruit, drink juice and eat chocolate. My symptoms were very bad gas and urgency as well as a very pasty mouth and loss of taste. I took pharmacuetical grade probiotics then the grocery store kind for nearly 8 months. It... [ more ]
Scott F The major symptom for me was gas (and associated cramping). The treatment was a few months of doxycycline, which seemed to clear it up. I wasn't formally tested, so the diagnosis was based on symptoms. [ more ]
See all 2 replies...

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William J. Johnson
bjohnson@j-pouch.org

Bill Johnson founded the J-Pouch Group in 1997.

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

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