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J-Pouch ForumsGeneral Discussion
Anyone heard of foods containing "lectin" causing problems with pouchitis and other inflammatory problems?
winter wish Read it but not convinced! I think the fact he sells a load of expensive supplements is always a red sign. .. some research suggests that certain lectins could actually be beneficial in activating elements of the immune system. The much stronger evidence is that the longest-lived, healthiest people in the world tend to subsist largely on plant-based diets. (Those include lectins, often in abundance.) This case for basing a healthy life around what seems to be working for large groups of... [ more ]
lewis Some of the first foods I eliminated were those I was eating most frequently. Those were tomatoes, green bell peppers, and potatoes. I've also eliminated anything that is "whole grain" such as bread, oatmeal, etc. I've also nearly eliminated all sugar, corn syrup, and splenda sweetner. I have been using small amounts of Stevia and some locally harvested honey. No milk and only small amounts of feta cheese and goat cheese on an abundant amount of spring mix and romaine lettuce salads. [ more ]
Bobish Interesting, hadn't heard of that so had a search..... https://authoritynutrition.com/dietary-lectins/ Basically it's saying lectins bad, in everything, removed or significantly reduced by cooking. Out of curiosity what foods are you avoiding that are giving you the benefit (or what foods are you eating if that's easier lol). I guess anything that gives your gut an easier life is gonna help! [ more ]
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J-Pouch ForumsGeneral Discussion
How to best get your protein?
winter wish I have malabsorption issues, including fat malabsorption so I have to take Creon with every meal. Taking them has improved my absorption of food. [ more ]
TE Marie I wouldn't get a reversal unless there is a pouch failure. I now have an ileostomy due to pouch failure. There is output to deal with it too. I lost a 80 some pounds after my j-pouch surgeries over around 18 months. I had the weight to loose. (Unfortunately I have gained back 30 lbs and I have other health conditions that haven't helped me hold steady.) My doctor was concerned that I was loosing the weight too fast and wasn't looking at the actual amount I weighed itself. You're holding... [ more ]
winter wish http://www.bbc.com/news/av/hea...tein-supplements-use This was discussed on BBC news last Sunday. [ more ]
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J-Pouch ForumsGeneral Discussion
Bo Shen diet
Susan 1000 ❤️
winter wish I was trying a vegan diet which in retrospect didn't suit me. I have thrown out the carbs and restocked! Interesting Inly a few weeks ago aquired kefir and I am making it with goats milk. Thanks [ more ]
BuckeyeNate I'm not sure there is more to it than what you've said. Avoid refined sugars and refined carbs (processed foods & white breads). I would also recommend adding kefir to your diet if you have not done so. [ more ]
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J-Pouch ForumsGeneral Discussion
Going off TPN
Randers.USA WinterBerry gave some great advice above. Use real foods, cooked, and try and use a blender or food processor on foods like chicken, roast beef, etc. Soft broiled salmon or halibut has protein and such. Also, make sure you get enough fluids.. this is not an advertisement, but in the past, two products that helped me were a high calorie high protein elemental liquid food, known as Peptamen..vanilla flavored, drank ice cold, was the best...Also, a product I still use often, Ceralyte 90... [ more ]
Winterberry Hello, Mad. I would treat your insides and your pouch as if it were a 1 year old toddler for now. Highly nutritious, soft foods for a toddler. Try things like soup (cold soup would taste great in the summer heat). Fruit smoothies for vitamins, add Greek yoghurt for protein, or avocado for good fat. Tofu or eggs. Fish, chicken, and peeled, well cooked vegetables. I keep bags of frozen fruit in my freezer for smoothies so I always have them handy and I don't worry about the fruit going bad. [ more ]
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J-Pouch ForumsGeneral Discussion
Post J pouch takedown
Andrew16 I am sorry your having a rough time with your takedown surgery. Do not be discouraged by where I am at this point! Everyones body is different and everyone heals differently so keep your head up, try and be as optimistic As possible and you'll be okay. This is a huge obdsticle to overcome and it will be worth it in the end! [ more ]
Veggiescott I could have written your post myself including having Dr Greenstein as my surgeon! I am only two months post take down and regret sneaks in every now and then also as I am not having an easy time, but everyone - including Dr Greenstein - tells me I just have to be patient and it will get better. I have to admit it scares me to hear that you're still experiencing difficulties after six or seven months; I was hoping to be 'semi regular' by six months. I'm sorry that you're going through this... [ more ]
Andrew16 thank you winterberry, very much. It is reassuring that i am not the only one lol. i am on opium tincture, and lomotil together to control my bowels. This combo seems to work the best for me. For the butt burn, calmoseptine cream worked great. I am just taking it day by day, some days will be good and some will be bad. thank you all for replying. [ more ]
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J-Pouch ForumsGeneral Discussion
Anemia
Annikki I had an Endometrial ablation in 2013 that solved the heavy bleeding but I have seriously wicked cramps. In 2016 I had Uterine Fibroid Embolization which took my periods from light to even lighter but I am still have painful periods. [ more ]
LindsLaLu81 Annikki, How did you fix the heavy period situation? [ more ]
Annikki I have a j-pouch and I found spinach to be my superfood. I eat it almost every day. However really you need to figure out they WHY. I had super heavy periods and once I solved that I was able to keep my numbers in range. [ more ]
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J-Pouch ForumsGeneral Discussion
Imuran or 6 mp?
Halo52208 Thanks Jan [ more ]
Jan Dollar The side effect profile is the same for both drugs. Unless you are getting pancreatitis, then your symptoms should improve as your body acclimates to the drug. Two weeks may not be long enouh for this. If you are taking it in the morning, try taking it at bedtime instead. Also, be sure your doctor is informed of your side effects. You may need blood tests sooner than planned. Check this link for more info: https://www.med.unc.edu/gi/spe...tis/IMURAN%206MP.pdf Jan [ more ]
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J-Pouch ForumsGeneral Discussion
UC or not
hever Hi and thanks for your reply, he is actually being considered right now for a fecal transplant. My daughter is really keen for this as he has had countless doses of Flagyl and some other really nasty antibiotic, I cant remember the name of it, but special permission was required for him to have it, it never worked, he still has c. diff. He saw his gastrologist today, his oncologist is also keen and been pushing for it, he has a scope soon, I think its a sigmoidoscopy as too small for... [ more ]
TE Marie HEVER, I am sorry your grandson and family are going through all of this Flagyl is what got rid of my c.diff, after 8 months off and on, in my j-pouch. Many here use it without the PN side effect for pouchitis. I don't know the percent that have this complication. I wonder if he is too young for a fecal transplant for his c.diff. [ more ]
hever Hi TE Marie, thanks for your reply. Yes it sounds like Serotonin and maybe other brain needs could be involved, I'll do some research on it. Bit worried about this PN problem as my grandson nearly 2, has had cancer for the last year, in his abdomen, a massive tumour, in remission now, but his treatment has included plenty of Flaygl, as he constantly has c. diff, reflux meds, Vincristine a chemo drug, all of which can cause PN, of course he is too young to tell his mum, still its a worry on... [ more ]
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J-Pouch ForumsGeneral Discussion
Raw Broken SKin
Winterberry Hello, Less70. I bought a sitz basin and squeeze bidet bottles from Amazon (one bottle for home, one for away from home). They worked so well I bought an attachment for the toilet. They saved me when I suffered burn or fissures. Try filling the sitz basin with water as warm as you can tolerate. Really warm water will soothe the area and bring blood circulation to that area to heal inside. My barrier cream was Zincofax, the one used by rash-y, shouting babies. I hope any these work for you. [ more ]
roseviolet Hi, If you have time, warm sitz baths are good. Perineal bottles and portable bidets are available on Amazon and Allegro Medical, among other sites. They are inexpensive. I think I bought a pkg. of 3 bottles so I would have enough water to spray the area thoroughly. These are quick/easy to use to keep the irritated area ultra clean, the gently pat dry with soft bathroom tissue. (If tissue alone is used, some irritating residue will most likely be left.) Creams that worked when I used to get... [ more ]
Scott F Others may have creams to suggest. I'd recommend a bidet (there are some very inexpensive ones) and perhaps sitz baths. [ more ]
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J-Pouch ForumsGeneral Discussion
Blocked J pouch
RZRAZ You say that you feel your pouch being full. If that is the case and you do have a structure, it would be on the exit end. The good news is you can find out for yourself if it is a stricture. Just use your finger. I know easier said than done and I'm only new to all of this, but I just left the hospital with all this information on Wednesday. Maybe it's something you hadn't thought of. Hope this helps. [ more ]
SalT Yes I thought about a stricture. Really hope that's not the case. I recently had blood tests that showed I had very low blood sugar levels and I was extremely dry. Hope with a lot of liquids I can fix it . [ more ]
Scott F Not drinking enough can cause real trouble. Most of us get dehydrated before we start making pouch-shaped bricks, but your body could behave the other way. If you've developed a stricture that could also stop things pretty thoroughly. [ more ]
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J-Pouch ForumsGeneral Discussion
Remicade
Deve Actually yes I gained a lot of weight back while on remicade, maybe about 60 pounds. Now I'm very skinny not because I don't take remicade anymore but because I have an anal structure. [ more ]
GraceB I had my J-pouch surgery in 2010. For the first 5 years I had a hard time with it always getting pouchitis and on antibiotics. I have learned what to eat and not to eat. During that time everyone here was very helpful and still is. I still can not gain any weight and have problems but not like before. My gastro never mentioned going back on Remicade after my surgery. Maybe because the remicade didn't help me before the surgery. I was on it for 2 years. For the ones that went back on remicade... [ more ]
Jan Dollar I never was on biologics prior to colectomy. A decade post colectomy I developed enteropathic arthritis and was started on biologics, going through Enbrel, Humira, Simponi, and Cimzia. More than a decade after that, I developed chronic pouchitis, and I was switched to Remicade and Imuran. I have not been diagnosed with Crohn's, but like CT explains, it really does not matter. Just doing what is needed to remain functional. By the way, I have been fine with all these years of biologics, and I... [ more ]
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J-Pouch ForumsGeneral Discussion
VSL #3 Probiotic - Thoughts?
drone3 I used to take VSL #3 4 sachets a day. I spent thousands of dollars over the years. One day i figured out it was triggering my arthritis, so i switched to a much cheaper probiotic it didn't seem to work as well. Then i tried taking it before meals usually 10 min before a meal and bang it works really well. Im now of the opinion that if you find a good enough probiotic and take it 10 minutes before each meal you get great results. So before each meal i take x2 probiotic capsules and x1... [ more ]
Janiep VSL #3DS IS WHAT I TAKE AND IT IS A GAMECHANGER FOR ME!!!!!!!! [ more ]
Scott F Jeremy, I find that VSL is worth it for me. As CTB wrote, there are discounts and financial assistance available on the VSL web site for the prescription-only VSL #3 DS. In addition, some insurance companies cover it. I managed to persuade mine to cover it, but it took me about a year. [ more ]
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J-Pouch ForumsGeneral Discussion
Life after jpouch removal
Lambiepie Crystal, sorry about your complications. Things will continue to subside as you heal. I felt sore and tired for about four or five weeks.... Clear bloody leakage from where? I didn't have that, but I did have a sore butt for awhile. Don't let the doctor or anyone make you feel like you're being a baby if you need more pain meds for that. I needed more Percocet after this surgery than after my first three. When you get down or sad, read your jpouch posts to remember exactly why yours needed... [ more ]
Winterberry Crystal, I'm sure you are so happy to be in the comfort of your home. I'm sure someone who has been through the removal surgery will post and let you know what to expect. Get lots of rest. I hope everything heals soon. [ more ]
Crystal<3 I was in hospital for 2 weeks..I had some complications but am home now..I am very sore ..Especially my behind...I hope this heals soon.. is it normal to have like a clear bloody leakage? And for how long. i can't wait until I feel better ..I think this is the worst surgery I have ever had .. Thankyou for asking how I was doing [ more ]
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J-Pouch ForumsGeneral Discussion
Radiation
chiromancer I had radiation for a rectal tumor before surgery and my j pouch failed, was it related? probably. I would say that after radiation it is probably best to go with an ostomy, the data points in that direction. One thing we know is that the small bowel is much more sensitive to radiation than the large. [ more ]
Balletbarre Wrong diagnosis originally? [ more ]
Winterberry Hello, Balletbarre. I'm sorry you are facing so many difficulties. Can you try Metamucil before your meals? It might help to bulk things up so that you can hold on. Liquid stool is difficult to hold, especially while asleep when your muscles are relaxed. Have you had an endoscopy to check for pouchitis? What does your old specialist say about help, if he says the pouch is not working due to radiation? When you can't have a bowel movement while on the toilet unless you stand up and sit down... [ more ]
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J-Pouch ForumsGeneral Discussion
IBD and Cannabis
drone3 Cannabis use wasn't worth the shift in mental state for me. To deal with a chronic auto immune condition you need to mentally be very strong, cannabis altered my mental strength and drive and was a net negative at the end of the day. Nicotine has been beneficial but obviously not worth the lung damage. [ more ]
Former Member I dont need to read a little closer. I've not discounted anyone thoughts, I've expressed my thoughts on a forum post that I and everyone else on this forum has been invited to respond to. A forum member can't ask for a groups opinion on a subject and expect all opinions be in agreement. Forums members who support the use of cannabis shouldn't turn against or attempt to belittle the opinion of others. I'm pretty certain the senior management of cigarette companies, Hollywood movie directors,... [ more ]
RollinwithnocolonJH I also didn't like the high feeling so i took it at night. I make sure I'm not home alone with my 7 year old, and that my husband is home as well. to me the side effects of narcotics are so much worse. I was going to the bathroom 15-17 times a day sometimes more. I literally tore my pouch and created a fissure from pooping so much. I was at my wits end. I was on antibiotics, steroids and narcotics. Nothing even came close to touching it. I finally asked a friend who has severe anxiety if I... [ more ]
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J-Pouch ForumsGeneral Discussion
Intestinal Blockage
drone3 I had constant blockages over a period of three years until i figured out i just couldn't eat anything hard specifically - nuts, seeds, peels. Blockages can come from adhesions and even crohn's inflammatory narrowing. Either way a healthy diet is absolutely essential to maintain a healthy environment in the intestinal tract and pouch. If there are constant blockages i highly recommend sticking to soft and smooth foods, you can even get a vitamizer if required. [ more ]
sudie Hi mum. I have had 6 blockages now since just before Christmas needing hospital with Ng tube each time pain meds and to stop vomiting,on one visit had adhesion surgery hoping this would help but have had two since,the surgeon now has me taking gastrograffin when the pain sets in so I don't have another hospital trip it worked last week I don't take any bowel slower products I have had help from a dietician doing fodmap diet which really helped ,we feel and have noticed that when I eat fruit... [ more ]
CeeeeCeeee My one and only blockage was caused by my small intestine twisting on itself. Most painful experience of my life! Six days in the hospital. Four on morphine. My surgeon held off operating and massaged my abdomen very firmly each time he visited.....ouch!!!!! After four days things "unkinked"! Lucky me! The ng tube was quite an experience.......not having it in but getting it in! Having it in was a breeze! It's been 12 years and I haven't had another blockage. Yippee!!!!! [ more ]
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J-Pouch ForumsGeneral Discussion
Arthritis
drone3 I have AS, it took me a year to figure out how to manage it. This is what i do to avoid flare ups and live mainly pain free. 1. Diet - no sugar, no alcohol, no caffeine, no preservatives, no starch (this is absolutely essential, you can go to kickas.org to learn more) Basically you need to go Paleo. 2. 35% Food Grade Hydrogen Peroxide drops in pure water x3 daily 3. Avoid trigger movements and scenarios, ( for me it involves not sitting on anything hard and no contact sport) There is... [ more ]
Annikki I was recently diagnosed with Enteropathic Arthritis. And like my UC it's attacking my joints in all my limbs. I have just started taking sulfasalazine but it takes up to 12 weeks to start working. [ more ]
Jan Dollar Impossible to say. If you have IBD related spondylitis, it tends to progress more slowly and have less joint damage. Of course, treatment slows progression, so that is important. I would not ignore it. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Anal stricture treatment after healed fistula
Kenny D No problem. No real side effects except headache from rapidly opening blood vessels, minor dizziness, all temporary. Please keep us posted. all the best! [ more ]
Deve Yes he had a hard time getting a pediatric scope in there, I screamed when he did it even after being drugged. I guess that's why he says it's scar tissue and with the amount of bowel movements that I reported daily. I'm from Western NY State in the Southern tier near Pennsylvania. My primary doctor will probably give me the cream if I ask, as long as it's not risky in some way. He usually doesn't have a problem prescribing much of anything. Thanks for the help. [ more ]
Kenny D Did he find anything with the camera? Is that how he concluded scar tissue? Has he heard of ultrasound, its non- invasive, and can detect if it is scar tissue. Anyways, moving forward, use stool softeners, get orange flavoured Metamucil and stir it into water so you have a consistency that flows like soft ice cream. It stimulates the bowels and give a smooth consistency upon exit. One other distasteful thing I have done in the past: I will roll my fingers in toilet paper, lean to the left or... [ more ]
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J-Pouch ForumsGeneral Discussion
Thought Humira might be the answer but he needs the pouch OUT! 😥
Mysticobra Hello. I am so sorry he has gone through all this. And if he is reading this I gave up with 1/10 the problems and time. Time was the problem with me. I will be two years out from removal in October this year and I'm still recovering from the damn thing. I couldn't keep it because it was slowly killing me. Of course I didn't realize it until 26 months of having it. My surgeon wouldn't do another pouch. She didn't think I would survive. I look back and I know I wouldn't have. Like I said. I'm... [ more ]
Scott F I pretty much agree with Jan. I brought up pouch options because you described your husband as "devastated." Trying again with the very best surgeon isn't crazy, but the history suggests a higher risk of failure. [ more ]
Jan Dollar I am so sorry your husband is dealing with this nightmare. A diagnosis conversion to Crohn's could be at the root of all his misery. Nobody has to do anything wrong or be negligent in not knowing in advance this was Crohn's all along. IBD is notorious for being very difficult to sort out and it can take years or decades to fully manifest. If you want to travel to New York (Dr. Remzi), Cleveland Clinic or Mayo Clinic (which both have specialists in IBD surgery), you might get reassurance that... [ more ]
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J-Pouch ForumsGeneral Discussion
Would botox help my fissure?
RB15 Thanks again Scott I actually asked the surgeon how i would know if i was having spasms, he said that i would feel a cramping type pain down there (which i never do) only pain from the fissure. He said if he were to do the botox he would first scope the pouch and check everything is ok, then would check if the fissure is internal or external. I asked him about incontinence and he said he has a very low % who suffer that and that he would only yse a very small amount on me. I hear you... [ more ]
Scott F The diltiazem's key advantage is that it doesn't cause headaches. It's hard to predict whether it will be more or less effective for you than the nitrate in the rectogesic - their mechanisms are very different. Pouch prolapses can vary a lot from just loose mucosa getting in the way of pooping sometimes to the extreme version where the pouch protrudes (inside out) from the anus. I don't know that you have a prolapse, and the infrequent symptoms could make it harder to detect with a single... [ more ]
RB15 Scott F - is that all a pouch prolapse is? The name sounds pretty serious, but yes it comes and goes and its almost as if the anus is constricting in that very moment causing the stool the block up and stretch the fissure, yet the consistency is always the same afterwards so i know its not that. I have got a tube of Diltiazem but have not used it yet, has it got a better reputation for healing than rectogesic? I will try do a bit of reading on everything, thanks for the help! P.s. Do people... [ more ]
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J-Pouch ForumsGeneral Discussion
Bowel Resection Soon
skn69 Temoty, Although I was not subject to adhesions and obstructions for over 30 yrs, in the last 8 I started to get both. I had about dozen pouch redos and various hernia and obstruction surgeries between 2000 and 2015. The first obstructions were more like an ileus (when your bowel doesn't wake up post op or worse, 'falls back to sleep' so to speak after a few days...it can also be the sign of bowel swelling. As time went by I found that I had some repeat sites where my bowel seemed to twist... [ more ]
temoty thanks for the replies. [ more ]
Winterberry Hello, Temoty. Call the surgeon who is performing your resection and ask if you can talk with one or two of her patients who has had this procedure done. Surgeons and doctors sometimes have a list of their patients who are willing to be a peer patient and can give you support, information, tips on what to expect, and aftercare. Your own GP might have some patients who are willing to talk. Try not to worry until it is actually decided to resection. Good luck. [ more ]
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J-Pouch ForumsGeneral Discussion
Has anyone done spinning with a jpouch and then bleed after?
lablover my husband does spinning and it doesn't affect him. Feel better!!! [ more ]
Scott F I'd use xylitol (and sorbitol and mannitol) very sparingly, if at all. They tend to cause diarrhea. As part of a conscious process to manage stool consistency the sugar alcohols might be fine, but otherwise they are potential trouble. [ more ]
jeane Will do. Thank you. I believe some of it is from has release during sleep also. I just cannot believe I slept over five hours last. night without waking!!!!!!!!!! I never sleep on my stomach as at my age I'm trying to avoid those facial wrinkles from your face mashed in the pillow but I'll do anything for sleep these days!!!!! [ more ]
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J-Pouch ForumsGeneral Discussion
adhesions
Annikki I had problems with adhesions when I was pregnant and they were being stretched and ended up going to the hospital because I was in so much pain. I also can feel one at my old stoma site when I stretch too far. Feels tight. [ more ]
Marcella Thanks for passing this information along. I have had my j pouch for 15 years and the last two have been very stressful with infection, partial blockages and lower abdomen pain. The past month has been especially fun. I also have rheumatoid arthritis. Double the fun! But, I keep to my daily routine , go to work ,and smiling as much as I can. [ more ]
Jan Dollar Both of the above are correct. To clarify, adhesions are bands of scar tissue that form internally in response to surgery, trauma, infection, foreign bodies, etc. When viewed directly, they appear almost like ligaments or tendons, in that they are dense tissue that do not stretch. Anyone who has had abdominal surgery has adhesions. Most of the time they feel like nothing because they do not have nerves in them, unless nerves got trapped in them incidentally. They do not show up on x-rays or... [ more ]
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J-Pouch ForumsGeneral Discussion
Iron supplements
Scott F Bill's combination with Vitamin C really does help absorption. There's a combination product called Vitron C that has both in a single pill, but Bill's method sounds less expensive. [ more ]
BillV I take one 325mg tablet of Ferrous Sulfate daily with 500mg of vitamin C, 2 hours before eating breakfast. This brought my iron level into the low normal range, which my PCP said was OK. I just learned from my daughter, who had weight loss surgery, that this kind of supplement did not work for her. Her doctor recommended a supplement called Proferrin Forte, which she says makes iron more absorbable for people with shortened intestinal tracts. I know nothing more about this product, other... [ more ]
CTB23 I am just taking 65mg pills. I had lab tests in March and things are ok right now. Unfortunately I haven't seen the actual numbers, just a call from the doctor's office that indicated no issues. [ more ]
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J-Pouch ForumsGeneral Discussion
Boxing with a jpouch
Bobish As far as I know when people are stuck after intense training its often due to dehydration (salts sugars and liquid imbalance). Having a pouch would make you more prone to that.. maybe something to keep an eye on [ more ]
Former Member YSHARAIRI In regard to throwing up when sparing, are you throwing up due to exhaustion? Maybe since your illness, you've not reached the level of fitness you had before surgery but your determination believes you still have it and you're pushing yourself too hard. I guess " you got the heart but you ain't got the tools no more ! " [ more ]
Ysharairi Maybe i am pushing my body more than it can handle ,anyway thanks alot for the help sir i really appreciate it . take care [ more ]
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J-Pouch ForumsGeneral Discussion
need help understanding this from MRI ??
Pouchomarx Heard back from Dr Shen in regards to this "wall thickening or mural hyperenhancement of the pouch"., and he stated its of no significance and nothing to be concerned about. [ more ]
Pouchomarx Jan I thought the same thing, that sentence is in same paragraph as "no" to everything else.... I emailed Shen to ask, but he doesn't reply to emails like he used to and his nurse is out for the next week. thanks, I am glad that there are no leaks or anything bad going on.. [ more ]
Jan Dollar These terms are generally associated with inflammatory conditions. It could be a transcription error (transcribing doctor said "no" but it was not picked up by the transcriber listening to the recording), or the degree was minimal or inconsiquential. The main thing to focus on is Dr. Shen's interpretation. I would presume that he actually looked at the images, not just the report. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Mouth ulcers/ Lichen planus
Deedeeh no, i was plagued with them when i was initially diagnosed 20 years ago but once i was put on my meds they went away. i have had the pouch about 6 years ago and havent had anything like it again... .just the odd one every now and again. hope you find some help they can be so painful. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch, Weight Gain, & Chronic Fatigue
DEE2015 GRANDMA WHO DID YOU SEE AT UM? [ more ]
grandmaof1 I will say one thing. I am tired of being exhausted. It sucks. Dr. at U of M said in time it will get better. Gosh I hope so. [ more ]
grandmaof1 I finally am somewhat happy with my weight. A year ago during the year long struggle to recover I weighed 105# at 4'10" and a half. I got to have that half. Sucks being so short. I have lost since my first surgery over 45lbs. I am now at 115. I don't want to gain anymore and I doubt I will. I still have issues trying to eat. I don't get it. I am always going to the bathroom. I want to stay where I am at. I finally look great. That is what keeps me going. I hate eating. But ya know you have to. [ more ]
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J-Pouch ForumsGeneral Discussion
In ICU
skn69 Thanks Jan, Am lining up appointments for all of my specialists as per orders, not taking the drugs (I was at my pharmacy yesterday...asked about the beta blockers...Told him my BP is normally 110/60 with 2 pots of coffee in me when stressed and he told me that I should keep far, far away from them)...I will end up passing out from low BP...my heart rate was a steady 60 with dips down to 50 and all other indicators (glucose 4.1, O2 sat at 90 (low but that's me) were great...They did... [ more ]
Jan Dollar Glad you are back home and survived all that medical attention. Sadly, sometimes we just never find out what happened. The good news is that we live through it and can resume our lives. Reminds me of the time a few years back that I was hospitalized for sepsis. No cause found. I am still here. Jan [ more ]
skn69 Thanks Jan, everyone. Friday morning at rounds we made an agreement; after the cardiac CT and the arteriography, if all was clear then I could escape.They wanted to give me a weekend pass and get me back Sunday night but I wasn't having it. The results were perfect, nothing to report and the Halter results came in just in time...there were a couple of Asystoles during the night but that's it. So they released me on my own recognizance! My exit package includes the report and a prescription... [ more ]
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J-Pouch ForumsGeneral Discussion
"Megapouch" term
TE Marie My j-pouch was enlarged too, which probably factored into it's failure. (The main problem was my cuff.) [ more ]
Kushami That's very interesting to hear, tulsamom. Unfortunately my whole pouch has enlarged, which is one of the reasons I can't have revision surgery. My surgeon also said they don't know why it happens. He was involved in taking biopsies from enlarged pouches to see if there were any detectable changes or causes, but the muscle tissue appeared normal when it was analysed. I'm glad to hear your pouch could be fixed :-) [ more ]
Kushami Thanks, TE Marie. I will read up on prolapses. Should have mentioned that I am in Australia, so unfortunately can't take advantage of second opinions. The problem was revealed by a CAT scan, and I'm happy with the diagnosis. Was just wondering whether anyone else had the same thing. It's sometimes called "floppy pouch" too, although that can mean a pouch that isn't emptying well for whatever reason (not necessarily due to the bowel-wall muscles giving out). [ more ]
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J-Pouch ForumsGeneral Discussion
Can I see a chiropractor with an ileostomy?
Kushami Can I sound a note of caution? There is a risk of adverse outcomes from chiropractic neck manipulations, but because chiropractors are not doctors, they are not required to warn patients about this. You know how before a medical treatment, your doctor tells you all the potential risks and things that could go wrong to obtain your informed consent? Well, chiropractors aren't legally required to do that, and they aren't subject to the same scrutiny or penalties as medical doctors when... [ more ]
Moe Thank you. [ more ]
Halo52208 Moe, When I had just had my surgery and couldn't lay on my stomach, the chiro adjusted me laying on my back using different way to adjust my back. Then to adjust my neck he had me sit in a chair. So you can be adjusted, just let the chiro know. Good luck�� [ more ]
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J-Pouch ForumsGeneral Discussion
J pouch surgery
Startoverlife I wish I could take a leave from work. I'll have to figure that part out. I have been trying to save some while I'm able to work with being on prednisone but it's not much. I need to be back making some money by the 4 to 6 week after the first surgery. Then maybe I can save more before the second one. I have developed small holes around my anus as well so I hope those will be taken care of and heal up properly in that time as well. I have had times when I went to the hospital where I would... [ more ]
Winterberry I took a leave from work, but I felt comfortable working at 8 or 9 months. At 5 months or so after takedown I was able to hold on comfortably. But I still made sure I knew where the restrooms were, and always kept a packet of baby wipes or moist paper towels when out of the house. You won't have the terrible urgency of flaring UC, and you will have some warning, a feeling of slight pressure in the back end. Then you have to make your way to a restroom. I always listened to the warning sign... [ more ]
Startoverlife I've avoided all those types of food for a long time now anyway so that doesn't bother me. I deliver pizza right now. How long did it take until you could go back to work? Is it easier to hold it in if you need the bathroom? For quite a while I have maybe 30 seconds to a minute to find a bathroom most of the time unless I'm sitting. Then I can hold it a little longer. I also use to lift weights. Is that still possible later down the road? I know you said you don't lift heavy things. [ more ]
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J-Pouch ForumsGeneral Discussion
Iowa City Doctor
katey Thank you, I had my surgery years ago at Mayo and I need someone for some problems I've had over the past few years. I know Mayo is great but Iowa City is so much closer, so I am looking around there. [ more ]
Halo52208 I see Dr. Polyak at the U of I. He's really nice. I like him. [ more ]
TE Marie FYI - I live in Iowa and went to the Mayo Clinic for 2nd opinions and treatment. My Des Moines GI referred me there vs IA City. [ more ]
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J-Pouch ForumsGeneral Discussion
What to expect 4 months post j pouch
Sunflower70 I agree with Scott. I had similar thing going on about 3-4 months after reconnection and it turned out to be mild pouchitis. It was tolerable but I could tell that something was off. I started the prescription dose VSL3 and used Rowasa enemas and it got better in about 3-4 weeks. Definitely consult with a GI to see if they want to treat it as pouchitis or do a scope. If you aren't taking VSL3, I really recommend it. I was taking the pills but it wasn't enough. The packets with the higher... [ more ]
Scott F This could be a recurrence of pouchitis, but the blood more often suggests cuffitis. Can you get scheduled for a pouchoscopy, or at least a competent rectal exam by a pouch-knowledgeable gastroenterologist or your surgeon? [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Upset stomach
CandiceT Thank you very much. It seems like there is a tummy bug in the office which I might have picked up. I am waiting on tests to come back to find out if I am celiac or not. But I have been vary careful with my food. [ more ]
Scott F Candicet, I'd guess that your upset stomach issues may have nothing to do with your J-pouch. Perhaps you have another food sensitivity to track down, or untreated gastritis, as a couple of possibilities. And since "upset stomach" can mean many different things, these are just guesses. Lomotil is safer in pregnancy than Imodium, according to the information available, at least until the third trimester. [ more ]
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J-Pouch ForumsGeneral Discussion
J-pouch back to ostomy
Crystal<3 ❤️
Jason351 Thanks Richard, I really appreciate your comments, the surgeon said he will discuss my options after he goes in with the scope next Tuesday so I will have to until then. Cheers, Jason [ more ]
RDSmith Hi Jason Sorry to hear you're in the wars mate, but looks like one decision is out of your hands. I would strongly recommend that you have the little bugger removed. As one who had that decision taken out of my hands, I have to deal with daily output from my JPouch even though it is disconnected. Every 6 weeks or so I have to flush it out with a lovely Fleet enema, which brings back the pain from before my surgery. My surgeon was reluctant to remove it once he saw all of the adhesions to... [ more ]
See all 37 replies...
J-Pouch ForumsGeneral Discussion
Metamucil vs. Konsyl
Former Member I don't remember hearing about Konsyl before. I never heard of it. I'm open to trying it. Metamucil is god awful stuff when it comes to taste. It's overpriced too even when I buy it as a storebrand at Walmart. Taking it in capsule form never works too, unless maybe you swallowed 50 of them. [ more ]
Scott F Aussie, I wouldn't suggest mixing psyllium into hot food. Among other things, it's likely to sit too long after getting wet. [ more ]
Aussie Can powdered Konsyl be mixed into morning oatmeal or other hot foods? [ more ]
See all 20 replies...
J-Pouch ForumsGeneral Discussion
pain in legs
13 Years & Counting Are you taking a TNF blocker? It could be from that. [ more ]
skn69 Yes and no...(other than the result of an accident last year) I usually get pain if I am very dehydrated...that is a tell for me or if my legs feel as if they weigh 1000lbs each...or swelling due to salt abuse, toxicity or overuse (I walk a lot)...also I get pain from inactivity...yes, not moving and not walking makes things worse for me...getting up from bed or the sofa after long periods of inactivity is really hard...but once I have been walking for a while things tend to loosen up and... [ more ]
LoveLife Wow Leanne! I hope your new knees are good. Pouchomax, I think it can be difficult to determine when to see a doctor or not. So many small pains here and there but generally I am living a good and happy life [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Capsule scopi
Cath75 I will get the results 29/5. Kind of knew it never would take as much as 10 hours, but very surprised it just took 3,5. Especially since I have a good period.. thank you for sharing Leanne! [ more ]
Leannern I had it and it went through me so fast that they couldn't get a good reading. Hope yours works out! [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Prolapse with erosion
Jackie S Thank you Winterberry and Te Mari, I appreciate both your responses. Jackie [ more ]
Winterberry Hi, JackieS. If you are okay eating chicken, try a piece of chicken roasted or baked your favourite way is good protein and digestible. Eggs, scrambled with turmeric sprinkled on top while cooking (helps with inflammation). Firm tofu added to smoothies. If you decide to eat beans, chickpeas, lentil, etc., for protein remember it might be irritating because of the skins on each bean (beans are also carbs, but high in protein and filling). If you love butter, try replacing it with just-ripe... [ more ]
TE Marie If you count calories or Weight Watcher points while adding protein and decreasing carbs you should be okay with your dieting. The Greek yogurt I eat has 22% of the daily required protein and the protein powder I use in smoothies furnishes 43% of the dally requirement. You don't have to eat meat to add protein. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Cleveland Clinic Doctors
rubberstamped2003 Sorry JFill21 I am not familiar with Dr. Hull. Hopefully, you will find someone on this site who can help. RACH123, Yes, I know the feeling of "let's get this done, and move on" but, if the Docs are thinking about two surgeries, it is beneficial for your body to rest and adjust before moving along to the next surgery. You will have to find a way to let go, relax, and trust the Doc at the helm (easier said, than done.) There are not too many situations the Docs have not encountered in there... [ more ]
Pilot Debby The CC has great doctors, it does not matter if a few have left or not. I think the issue people are having is they just are not their doctor. Everyone thinks their doctor is the best and has the most experience but the reality is they are all very well trained, you will be fine no matter who you pick. [ more ]
Rach123 ❤️
See all 19 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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