J-Pouch ForumsHelp! Need advice now!
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsPouchitis
Jpouch_2016 I wanted to share with you that magnesium will for sure make you have to go to the bathroom more. So maybe try stopping it to see if that makes a difference. [ more ]
Pouchmonkey - Thank you for sharing your experience. This is interesting info. Was the bacterial growth in your gut? For me, I thought it might have something to do with low K levels, but blood work showed my levels were normal. I will mention your experience w/ my doctor, maybe they can give me an antibiotic or suggest something else. Have you tried probiotics? If so did you find that it helped? [ more ]
I had a lot of aches & body pain-mostly back & neck, & was going to PT & getting trigger point injections for a year, had also gone on humira & my Dr’s PA put me on Xifaxan (expensive antibiotic) after I developed a sensitivity to Flagyl...& the body pain disappeared...he said it was a bacterial growth & im looking at changing the diet to try to avoid sugars & other carbs (already GF). Best of luck to you, hope you feel better soon! [ more ]
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J-Pouch ForumsOstomy & Skin
I find as a guy the travel bidet with the small angled spout is best .I also find the travel bidets are easier to clean as they do get splash on them and you can put warm water in them and that feels great I also bought a one size fits all toilet seat bidet that didn't fit and I don't know how easy to keep them clean .the travel bidet is easy clean,warm water if you don't have an electrician and cheap [ more ]
@Chook- I ordered my sudocrem from Walmart (I’m in Seattle Washington - USA) under $12 and delivered in 3 days! Active ingredient is zinc oxide w/ some lanolin. Very nice but honestly you could buy the zinc and add lanolin and make it your self. But I’ll use it. Very mild effective and smells nice. On to water cleansing 💦 To further reduce butt burn. I now use water! For those who can’t add a bidet to their toilet, like me, I recommend Tushy’s travel Bidet! I bought a Pink one and it’s... [ more ]
Dear Eniak1980, We have identical medical issues. I'm always dealing with anal skin irritation. I've found that the best (non-irritating) wipes are Target's Fragrance-free. I take out about 25 at a time rinse them in warm water and ring-out any remaining chemicals. I've tried every wipe on the market and these are the best. After using the softest toilet paper that I can find, then I use the moist wipes, and then let it dry for a couple of minutes, and then cover the irritated area with... [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsPouchitis
I am like most of you having to deal with Chronic Ileitis. I have had pouchitus before and successfully treated it and no problems now. I should start by saying I have had my j-pouch for 18 years. I have had several adhesion removal surgeries and 2 resections of the small intestine. My recent routine pouch scope however showed all is well except for my ileum being very inflamed, leading my doctor to think I have developed crohns . He ordered and IBD panel blood test and I tested negative for... [ more ]
You are welcome Karen, anytime Happy Holidays to you too [ more ]
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J-Pouch ForumsGeneral Discussion
Your welcome! Hope things get better [ more ]
Hi Mary, I had dilation done under anesthesia. I'm my case I ended up with several blockages needing hospitalization and a gi tube to unblock before they finally tried to do a pouch scope and found the stricture that didn't show up on ct scan. So I guess my symptoms were pains in the abdomen, constantly straining and not being able to empty my pouch. Bloating was terrible also, and I would feel nauseated alot. Hope this helps you. I do self dilate now a couple of times a week. It helps. Aimee [ more ]
Mary, The terminology used isn't important. I had a flap or as Scott said a "wall" of tissue that was blocking stool in my J pouch. My surgeon called it a septum. Yours called it webbing. I am suggesting it's the same thing. My doctor also called it a "flap". It's an abnormal development of tissue or a channel that is impeding stool. That is the bottom line. There was no intention to belabor the terminology because I think we are referring to doctors using different words to describe the... [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks! My 2020 scope was delayed by the pandemic, which was just as well because I had some mild pouchitis symptoms early in the year that required two rounds of antibiotics. By the time I was scoped in September, all was good. The Humira's still working for now. [ more ]
Hope all is well and things have continued to go well on Humira! [ more ]
For the first time in years, I just had a good scope! No pouchitis or cuffitis. My diagnosis is officially Crohn's now and the Humira has been a great help. Hopefully it keeps working. [ more ]
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J-Pouch ForumsGeneral Discussion
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Well, that all depends on what you consider the “life” of the j-pouch. The tissue certainly does not have an expiration date any more than your stomach does. That said, your risk for pouchitis does go up as time goes on, and depending on your tolerance for chronic problems, it could last a lifetime, or not. Just remember, all our body parts age and develop issues associated with life on Earth. My j-pouch is over 25 years old now and has not disintegrated yet! Jan [ more ]
I have found that by eating a Specific Carbohydrate diet, and eating small meals, I have better bowel control. [ more ]
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J-Pouch ForumsGeneral Discussion
Bleeding can have several causes and that is why it is not easy to say whether to treat it or not. The fact that it is infrequent and resolves spontaneously means that it is likely very benign in nature (like bleeding from irritation or hemorrhoids). If it was more persistent or associated with other pouchitis symptoms, then treatment would be more necessary. Bottom line, I agree with your doctor’s assessment. I do disagree that antibiotics are the only treatment. If bleeding is from the... [ more ]
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J-Pouch ForumsHelp! Need advice now!
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Maybe you should get a second opinion from a gastro. [ more ]
Do you think you could have cuffitis? I have those same issues when I have cuffitis. But I also have other issues at the same time. The urge to push and the pain in my rectal cuffitis. I have never felt this type of pain. It’s unreal. Let me know what you find out. [ more ]
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J-Pouch ForumsGeneral Discussion
I was told by my Gastro doc that people with Ulcerative Colitis are more at risk for blood clots in general so it wouldn't surprise me the post surgical risk for those of us with IBD might be greater. [ more ]
Thank you. I appreciate all of your feed back on so many of the questions I have asked. I'm a guy, but I appreciate that information. [ more ]
One other thing. JoeJoe not sure if you are male/female but I am aware of 2 different women I know (one I dated), both with genetic/familial predispositions to blood clotting disorders, who suffered DVTs and pulmonary embolisms due to taking birth control pills. The one I dated told me she took the birth control for virulent/aggressive menstrual cycle symptoms and she told me she had to stop BC and use marijuana instead. She had to go to ER, severe leg pain, was put on Coumadin and pain... [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks lunky. I am a male but we had baby Recently. Lots going on. I haven’t tried stretching , but I could look into that. [ more ]
Hey JAT, I get muscle spasms in the same area, around the ostomy scar. My abdominal muscles in that quadrant tighten up and it's very painful. Fortunately it doesn't last too long. I noticed this after my colectomy when I still had the ostomy. This is not gas pains *though I get those too*. I think they are more likely when I've been using those muscles, but I also think they became less frequent/severe after I was able to strengthen those muscles after surgery. You have a newborn, so that... [ more ]
You are welcome JAT. By the way I forgot to mention: Write down the stuff or say out loud the stuff you are grateful for. Whenever I am feeling down, doing that activity always makes me happy and feel better [ more ]
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J-Pouch ForumsGeneral Discussion
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Thank-you Elif. I will say that next time. Still thank-you for sticking up for me though, I appreciate that a lot Thank-you for being sweet this time And I will research that, that sounds cooL! Thanks [ more ]
Instead of: “Stress and Anxiety CAN cause gastro problems including pouchitis” a more accurate way of expressing this idea could be: “Stress and Anxiety MIGHT cause gastro problems, POSSIBLY including pouchitis” Still, you made good progress on epistemology. I think you should also research epistemology. Congrats. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Don't give up. It's a forever tweaking of the diet. Food & vitamins especially pro & prebiotics are so important. Exercise especially stretching & relaxation ones. No high impact. [ more ]
You are welcome! Keep posting!! Your posts help me [ more ]
I was about to say the same thing as Winterberry...what is your diet? What do you eat and when? What do you eat it with?? At what times? Are you more sedentary now with the confinement and Covid? Have you changed anything in your routines??? What you drink? Your meds???? Maybe we can help you to find a method that works for you and helps. Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Hi Jan Dollar. Thank you for sending a reply. I was given Cefuroxime in hospital 5 days ago. I was reluctant. I have taken Flagyl many times with simple pouchitis which worked well. I am far beyond that now. I am allergic to Vancomycin. Today, I wake up with my skin itching and the beginning of hives which I have with other antibiotics and cough worsening. I am crampy and more nauseous with it. My incontinence continues. I am abandoning this drug. (negative Covid a week ago in hospital). I... [ more ]
Some IBD people have even said that NSAIDS have made their UC worse too. NSAIDS have a ton of side effects! [ more ]
Cefuroxime is a second generation cephalosporin, a broad spectrum antibiotic. While it often is fine for a variety of infections, one of the more serious side effects is C. difficile infection, which can present with the same symptoms as UC. With the symptoms of cramping and dark stools (indicating bleeding higher in the GI tract), I would report this immediately to your doctor. Were you given a cephalosporin in the hospital? Were you tested for C. difficile? Unfortunately, your history... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Oh dear, I had no idea you had no insurance, I am sorry to hear that! Insurance in the US is a definite must for us. I would suggest seeing a gastro anyway you can. [ more ]
Maybe you have a stricture??? I think you should see a gastro [ more ]
Thank You. With all the expertise on this site I hope others can offer advise. [ more ]
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J-Pouch ForumsGeneral Discussion
You might need a combination of antibiotics and biological, like others have suggested. I am on Cipro and Humira and it seems to be a good mix for me, but I had to try an few to get here. It’s almost like you have to be a chemist to figure it out. Sorry you’re going through this. I know that once we get the j pouch we hope we’re past the tough patch! I hope you can find the right mix that works for you! [ more ]
Your welcome. Thank-you Scott. I will try to post references on here more often whenever something is questioned. [ more ]
Fair enough - thank you for supplying references. Mesalamine doesn’t tend to work in pure pouchitis, as these articles admit, but if all else fails at least you wouldn’t be the first one to try it. [ more ]
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J-Pouch ForumsGeneral Discussion
Sharon, that is amazing information. Thanks for sharing. My go-to meal for feeling good and a long transit time is chicken or fish, rice and a small amount of veggies. [ more ]
Just to give you an idea of how it works, each food group has its own digestive time. All are based on the time it takes for the food to digest on an empty stomach, alone without another food group mixed it. Fruits: about 20-40mins Starches like breads, pasta, rice, potatoes etc: 2-3hrs Soft cheeses and simple dairy products: 2-3hrs (sometimes less if it is plain yogurt) Hard cheeses: 4-6hrs Animal proteins: eggs, fish and seafood: 2-4 hrs Red meats: 6 hrs This is the time it takes to digest... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hope you feel better! You are welcome [ more ]
Ok thank you - I will ask about that if this treatment doesn't help! [ more ]
I think you should get a second opinion, but yeah hopefully they will clear up soon. I know proctofoam helps a ton, so at least you have a second option just incase. Keep me updated, hope you do better [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsWomen's Health & Pregnancy
Keep us updated Hope you get better [ more ]
thank you both ladies!! I saw my surgeon and I have a small (most likely superficial) umbilical hernia and I am scheduled to have an abdominal CT Friday. Per my surgeon the bigger concern is a hernia beginning to form in the scar tissue under my ostomy scar. So probably all small and not problematic for now but it has me giving serious consideration to having my abdominal reconnected electively in the next few years to avoid dealing with it as an ongoing issue 😬 [ more ]
It sounds like there is the beginning of a hernia brewing there...but only your doctor can really tell you if it is that or something else...until you can get in to see someone, avoid too much lifting (duh, toddler means no choice?) but try lifting from the knees and arms and less from the back...if possible can you get a hernia belt on? or at least some sort of Spanx???? Anything that can help to support your abdomen... Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsHelp! Need advice now!
I am glad you are great! I am too [ more ]
My bladder seems ok, no changes with it really. It’s mild/moderately prolapsed but has stayed pretty stable. Trying very hard to not strain and make it worse! Hope all is well with you [ more ]
You are welcome dear! I hope it works as it has worked for other people. Let me know how it goes How is your bladder??? [ more ]
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J-Pouch ForumsGeneral Discussion
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J-Pouch ForumsGeneral Discussion
It happens in some cases, but as IBD people, we are resilient. The fact that we remain after the darkness came and we are still here proves we are resilient. We can overcome anything, if Crohns does happen, we will cope with it and not lose hope. Do not worry about what will or not come, enjoy the present [ more ]
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Thank you, @CTBarrister , for the concise summary on this. I recently went through a series of work ups on my small intestine and they suspect Crohns, but here is what I know: My biggest issue is not being able to maintain my ferritin level--this is what made the doctor's suggest Crohns. I feel lucky that this is my biggest symptom and it is treatable by IV iron infusion. Occasionally (several times a year) I will have frank blood in the toilet. Scoping and swallowing the camera pill... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Congratulations!!!! Boy Or Girl??? And what is the name??? [ more ]
Just want to update everyone that I had a c section back in December with a vertical incision on my existing scar. It is taking longer to heal but I personally think it’s worth it rather than making a new crisscross one. My doc wasn’t able to do much scar revision since I didn’t have much extra skin to cut out around my belly. But the new scar looks like a thin pink line over the old incision. My scar darkened quite a bit during my pregnancy with the hormones and it being right on the linea... [ more ]
My doctor wanted a natural delivery, but I insisted on a c-section because of prolapse. With both pregnancies, she used the same scar. It wasn't an issue. The one issue I had post pregnancy is that I didn't walk enough in the days following the delivery. So by day 2 or 3, my system hadn't started up again and they had to insert the NG tube (worst part of the JPouch surgeries for me). So my advice is make sure you walk. Congrats on your pregnancy. [ more ]
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J-Pouch ForumsPouchitis
If you have had the pouch 32 years with one or two isolated incidents of pouchitis and a recent scope shows things were fine, it would be extremely premature to consider biologics, although it sounds like you may be having a pouchitis issue. Scott's suggests on hydration and perhaps Metamucil sound like a prudent first step as you may be getting dehydrated for some reason. If the issue persists other antibiotics besides Cipro should probably be attempted. I would also suggest you may also... [ more ]
Maybe you should try bioloigcs for pouchitis. Like Remicade for example? [ more ]
A few different things can interfere with pouch emptying without causing pain. “Well formed” stools aren’t the ideal target for most J-pouchers, and they are harder to eject than the pudding/applesauce consistency that seems to work best for many. I’m guessing, though, that you’ve had formed stools for a long time and the emptying problem is something new. Even so, softer stools might work better if, for example, you’ve developed a stricture. Another possible obstacle to emptying would be... [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks Lori. My diagnosis may, indeed, be Crohn's. It was my original diagnosis, but the surgeon said pathology looked like UC in colectomy. I like the idea of just going higher via pouchoscopy to attempt stricture dilating. I will discuss that with GI and surgeon. [ more ]
They may be able to go in via a scope and open up the strictured area. I had a stricturoplasty (surgery) done on an area above my pouch but the stricture ended up returning (maybe b/c my UC diagnosis turned out to be Crohn’s?). I had multiple scopes done after that to open (and then re-open) the strictured area. Ironically, my stricture caused minimal symptoms for me personally but it was definitely a cause of concern for a number of GI people that I have seen along the way. Hope you can get... [ more ]
Your welcome honey, good luck and keep me updated [ more ]
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J-Pouch ForumsK-Pouch Korner
J-Pouch ForumsHelp! Need advice now!
It’s much harder to find than it used to be, but I get VSL #3 DS at Sam’s Club pharmacy. I don’t know if it’s true nationally, but in Maryland the pharmacy has to serve you even if you’re not a member. Visbiome is almost identical (and is probably closest to the original VSL formula), and might possibly be easier to find. [ more ]
Can you get Vsl3 ds any more? [ more ]
I use lots of VSL (4 DS packets per day). Since I'm never in remission, it's the best I can do. When I reduced the VSL last year I started to have symptoms, so I *think* the VSL lets me get by with a lower dose of antibiotics. The studies showed a stronger effect at preventing pouchitis than treating it, but I think it can help with both. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hey Doug Hope you have good luck with the Jpouch.I was scared also.but I am more scared of the bag now. [ more ]
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I love your quote! Some people do not like it but I am one of the people that do!!! [ more ]
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J-Pouch ForumsGeneral Discussion
I hope things get better for you! I think it will since he opened stuff up. [ more ]
Pouch inlet = top of pouch where stool enters Pouch outlet = bottom of pouch where stool exits. Every set of scope pics I have received have used those terms for at least the past 10 years. The inlet is the area that is commonly strictured due to backsplash stool/no backsplash valve being present in the pouch as there was in the colon's inlet from the ileum before colectomy. The outlet would more likely be strictured due to inflammation in the cuff or cuffitis. [ more ]
When you say pouch inlet, are you referring to top of pouch? or do you mean where pouch and anus meet? cuz the last few years I was told I had a few small ulcers at the pouch inlet but that was at the top where it goes into the pouch.. they said no meds as long as not having symptoms which I haven't. They said it doesn't appear to be crohns related and biopsies were fine. I had UC btw.. just stated sometimes there are ulcers there [ more ]
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J-Pouch ForumsGeneral Discussion
Yes I also gained weight after my colon was out. When I was sick with uc I was literally starving to death. I lost 90 pounds in about 45 days. Once I had surgery I started eating everything I could get my hands on. I'd even wake up in the middle of the night and eat. The problem was I couldn't shut it off and I gained to much weight. It wasn't until my surgeon told me he wouldn't operate on me if I didn't get in shape that I realized I needed to get back under control. After that I started... [ more ]
I was sick before my surgeries, so my weight was low. Gained some weight back with the bag but then lost again with the j pouch. Now I don't gain really, just stay around 118 to 120. I was 142 before I got sick and dropped to 117, then about 130 with the bag. Everyone is different I guess. [ more ]
Joejoe, I think we have all have put on a few pounds with covid. Mine tends to want to congregate around my middle also. I decided to go join a weight loss group online. I've lost most of what I've gained, thank god lol. I also try to walk for 40 to 60 minutes a day and drink lots of water. Hope this helps. Good luck. Aimee [ more ]
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J-Pouch ForumsGeneral Discussion
AJ, I'm so sorry you're going thru this..pls find comfort in the fact as a collective, all of us here, can relate in some way, because while we all have such. unique issues, problems, symptoms, setbacks, etc., I think we all know the personal hell of being in so much physical, emotional/psychological and spiritual pain, that no one can even SEE (eg not that I'm comparing cancer to IBD, but EVERYONE with a reasonable intelligence above the age of 12, is fairly well-versed in the hell that... [ more ]
Hi Kath, Glad to hear you are doing well. Yes the pain will make you sell your soul to the devil. I lived on the heating pad and did not miss a day of work. Don't know how I hot through it. My doctors have not talked about a reversal but did mention possibly a kpouch. They want me to try Hyperbaric Oxygen Treatment. Trying to get that passed with my insurance . This is a nightmare and hope nobody has to go through this. They say my pouch is in excellent condition but the problem is below it. [ more ]
YES!!!! OMG, hear ya, I feel ya... About 2 & 1/2 years after I got the Jpouch (surgery done in '98 - before there were biologics - FDA approved Remicade in ~ 2000, when I was 27). So the pain was soooooo excruciating (I was gulping Tylenol 3 by the fistfuls for a few weeks - it was SCARY and HELLISH), so as much as I wanted to keep the J-Pouch, I "begged" my colorectal surgeon for (surgical! lol) relief, so within the week, he operated me in Nov of 2000 (the reason I remember exactly... [ more ]
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J-Pouch ForumsGeneral Discussion
You are welcome! I am sorry for your trouble, remain strong honey and do not give up. I hope everything will be okay. [ more ]
Thanks Lauren. I have a phone appointment to start with Feb 3rd with my surgeon and also, before that, with the GI who ordered the enterography. My recent gastroscopy showed gastritis, duodenitis and the pathology showed changes to the mucosa of the esophagus. (GERD or ?other) I am falling apart. [ more ]
I would definitely go to your colon surgeon about this after you get everything done. I think you should take all of the info that you will receive and the pics as well to your colon surgeon and have him take care of you. That is exactly what I would do in this situation. Good luck [ more ]
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J-Pouch ForumsHelp! Need advice now!
Yeah our periods can definitely be hard lol, NSAIDS are the only thing that works for me unfortunately. Yeah, I learned about the NSAID thing from watching J-pouch videos on YOUTUBE from Doctors and reading research online. Too bad we have to do all this research instead of our doctors telling us. If you are going to continue taking NSAIDS too then try taking it with a meal to lower risks. Sounds great about the Yogurt!!! I have been doing that for years! No problems Your welcome for everything [ more ]
Oh wow, I know how that feels tho, I suffer from headaches and cramps with my period and NSAIDS are sometimes the only choice, I didn't know it could be so bad for the pouch, drs always say try not to take NSAIDs but don't specify why. Thanks for the input and will definitely add the yogurt to my daily diet! [ more ]
You are welcome my dear! And yeah definitely! NSAIDS can cause pouchitis unfortunately and it can irritate the pouch. Many doctors recommend we do not take it as a J-poucher. I take it anyway (OOPS LOL) NSAIDS are the only thing that works for my period cramps unfortunately. I know I need to look at other options though. In the past when I took NSAIDS, it made my pouch bleed a lot too. I take NSAIDS with a meal now or with food and I have not seen any blood since I have been doing that. I... [ more ]
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J-Pouch ForumsK-Pouch Korner
J-Pouch ForumsHelp! Need advice now!
Well tanks a lot for your input. My insurance will be takin off in a month or so. The straining has gone down a bit but my rectum is still ....idk rashed up from all the whipe. I might self dialet tonight but I don't feel like drinking...🥴😂 [ more ]
@Gjergj It sounds like you really need to visit a doctor, even though you don’t have insurance. The only way to get the right treatment is to first work out what is actually getting treated. Although open enrollment for subsidized insurance has closed, you may be eligible if you’ve lost a job or had other life events. Also, you can generally enroll in Medicaid at any time if your income qualifies. Good luck! [ more ]
Yeah I have not got professional dialet since I was a teen. And I use to dialet regularly. Once or twice a month. But than I stopped because my gauges were only 14,15, and 16 and those maxed out. I had to use little effort to dialet. 2nd well I don't like sticking a metal rod in my ass one or twice a month. 🤦🏻♂️🤣 Anyway I haven't dialeted since idk a decade. I never really had issues. Until recently. So idk should I still dialet if I have Fissure, stricture, cuffis, pouctitus and or... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Hi! Another success story for you!! My colon was initially removed laparoscopic but I immediately began to have internal bleeding in recovery, they rushed me back, cut me open wide and gave me lots of blood. Per my surgeon, the tissue around my colon was just so much sicker than imaging indicated so it did not cauterize properly. So the initial surgery was planned, the emergency surgery for internal bleeding obviously was not and the colon removal most likely would have been emergent had I... [ more ]
There should definitely be some more stories! I know lots of women on here have gone on to have babies. For me, the time from when I first started undergoing fertility testing to my (frozen) embryo transfer was about 5 months. We did genetic testing on our embryos to increase our odds of success, so there were about 2 months between the egg retrieval and the transfer. Good luck with your procedure! I hope you can schedule it soon! [ more ]
Hi susbo, well the cancer fear came from my brother who told me about a friend who got tube cancer after the IVF treatment. But I guess she was just a very rare case. Im so happy for you that could get pregnant with IVF!! How long did it took you from your first appointment with the fertility doc until your first pregnancy? Today I went to my gyn. She found out that I got a leak of progesterone since days before my period starts I already have sort of very few bleeding. And she sends me now... [ more ]
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J-Pouch ForumsGeneral Discussion
It’s an absolute must to use a bidet bottle or any kind of squirt bottle. I also have a bidet toilet. But if I’m traveling or not home, the squirt bottle comes along! I found out the hard way, an entire vacation ruined because my butt hurt sooo bad. Since using the squirt bottle, no problems!! Barbara UC - Colectomy & J pouch 2003 [ more ]
Thank-you so much! That means a lot to me And same for you too! [ more ]
Lauren - I love your positive and caring attitude! [ more ]
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J-Pouch ForumsGeneral Discussion
Agree with everything! EMily Parris had Stated too that the surgery medicine stuff the doctor gives us, can also cause hair loss as well. Mouthwash helps me with my tongue as well. https://www.youtube.com/watch?v=5IUyjz0B2Vo [ more ]
I also noticed the year before my colon was removed my fingernails looked terrible.they all had like waves of thicker and thinner nail.I looked it up and read that when your body suffers a trauma your fingernails stop growing but then restart so my body was probably going through traumas were it stopped hair and nail growth while it figured out what was going on.i think.but my nails look normal now. I now look at my nails and tongue to judge how healthy I am.Ive started cleaning my tongue... [ more ]
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J-Pouch ForumsGeneral Discussion
im in the 9 percent group that goes 10-15 times a day in a 24 hour period. I am still taking mesalamine at the lowest dose at which enables me to function and the urgency is not there, while the frequency is. Otherwise, it was total mayhem with regards to the inflammatory process. Things have calmed down to a manageable extent. This all evolved later on with me. I had easier years when my pouch was younger. Now comming close to 20 year mark as a jpoucher & veteran living with a subtotal... [ more ]
It’s very hard working when your pouch is giving you issues. I stopped working 5yrs ago. It was the best decision, I’m able to focus on me and take care of myself without worrying about work. I know not everyone can stop working, but if you can, it’s worth it. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
You are soo welcome my dear Continue to pass the word I actually learned the water thing from a YOUTUBE video on how to prevent blockages for Ileostomies, I was like, " I bet this is great advice for pouch people too" and here I am advertising it and doing it lol So happy you found a great guy [ more ]
Thanks so much, Lauren! I've continued drinking and that and the collagen powder I started taking in March have really helped. My anxiety has gone down because I'm not worrying about it. Have a great day! Scott, not married, but got a beautiful ring for Christmas and will be moving in with him soon, lol. Since he has only known me 3 years post surgery, he has SLOWLY been learning. I guess I can be called a success story because he thinks I have no issues with not having a colon, lol. I've... [ more ]
I was the one that said that about the water. So happy my advice helped! I like to advertise drinking water: before, during, and after every meal as much as possible on here. I am happy it helped you dear! I am glad you had fun that day too! How many bowel movements a day do you have??? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Thank you, Scott. I will try these ideas! First I will try the peanut butter. I liked to be as natural products before pharmaceutical. ‘Diane [ more ]
I started BiPAP a couple of years ago and haven’t experienced increased gas. If you’re swallowing air perhaps a chin strap would be worth a try. I can think of two possible causes of the nighttime accidents: the increased gas or the deeper (and better!) sleep. Do you take a bowel slower (Imodium or Lomotil) at bedtime? I’ve found Lomotil to be helpful. A small, fatty meal (like a spoonful of peanut butter) at bedtime can also slow things down. Good luck! [ more ]
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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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