J-Pouch ForumsGeneral Discussion
Topics
Sorted by last update
J-Pouch ForumsGeneral Discussion
Hi, I married a Dr, a surgeon, and he is very supportive, helpful in every way. He knew before we married how my health can take over sometimes, blockages, pain, and had always accepted this is a part of me and I can’t change it. [ more ]
Hey - I married an Emergency Dept MD. Not my intent, of course, to find someone in the medical profession ... just happened. Her knowledge is extremely helpful. Lets see ... she reminds me to chew my vegetables thoroughly ... keeps me hydrated through double-headers while coaching our daughters softball games ... fluently translates any medical-speak that I don't quite get, and while she does not treat me, per se, knew I had gallstones after a few taps on my abdomen and pinpointing where my... [ more ]
I have been dating a veterinarian, slightly different but she's probably more qualified than some human doctors. She is very knowledgeable about my j pouch now and always helps me deal or figure out what is going on. I definitely get harassment from her if I am not looking after myself or following my GI's direction. If anything she is a big help keeping me healthy. Hope that was helpful. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
No worries, Flygirl - I wasn’t irritated. I was pointing out that we have an ostomy forum here, which is more specific to your situation, but that you probably had already amply covered the territory. I’m glad you got some help. [ more ]
Bobish- actually you were very helpful! Thank you! Having an ileostomy and a reversal. hoping for three months but can take up to six months to a year while we wait for the Remicade to work it’s magic 🤞🏻 . Sorry if me posting on this page irritated Scott. But I haven’t found anything out there for flight crew so I thought I’d spread it out amongst a few similar groups and see if I get any bites [ more ]
Sorry flygirl, I think maybe I misunderstood. If you are having an ostomy and then going back to how you were, then presumably that is a much simpler operation (especially if they use key hole surgery). You mentioned reversal which is often used to describe jpouch surgery, for this the entire colon and soft tissue is removed and that is major surgery. I've not heard of your procedure being done before, but it's likely not as demanding as I feared so my advice above might not be relevant. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
I'll toss in my two cents for what it's worth. I had the original takedown surgery and developed pouchitis shortly after that. I later had a diverting ileostomy and a second takedown and decided to do things differently. With the initial one I didn't use a probiotic and my first 'meals' were jello, fruit juice and broth. The second time around I opted to forego the sugary fruit and jello. I ate broth and thin yogurt and took a probiotic (couldn't afford VSL/Visbiome). I haven't experienced... [ more ]
The probiotic that has been best studied for pouchitis is now marketed as Visbiome. It reduced the frequency of pouchitis and increased the time until a subsequent bout. OTOH you might not develop pouchitis at all. [ more ]
Thanks Scott. I'm pretty sure my benefits at work would cover it if my doctor prescribed them for me, so I don't think it would be an issue money wise. Just curious about them aha. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
You obtain a set of dilators. Believe it or not you can get them from Amazon. Basically you start one number (size) under whatever number your surgeon dilated to, then go to the number they used. Simple as that. You do that until the surgeon tells you the stricture will stay opened. This should not be done unless you are first dilated by your surgeon or a GI doc. The reason being your spincter muscle is right around the area you are trying to open up. Aimee [ more ]
How do you do self dilation? [ more ]
I'm not due again until May 2020. I may just give it a go. Man the crap we go through. Thanks J9pouch. Aimee [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
I have posted on others qs before but i have seen an internal soft tissue physical therapist (basically does massage on my belly) and she changed like 15years of scar tissue for me. Totally softened up my belly. I was doing IVF for infertility, and I swear she made room for a baby to grow in a way that I did not think possible before. I also thought it was "normal" for me to have extremely painful areas on my abdomin (like if pressed), and she changed that too. Mostly she does massage but... [ more ]
I'm closing in on 5 months post-takedown. Currently, I'm taking Cipro and am overall doing better. Going about 8 times a day. Last weekend, I stopped taking it and my diarrhea doubled to around 15 a day. Went back on it and noticed an immediate change. I'm planning to stop taking it again this week or weekend. I have one more refill that I'm praying I don't need. If you're wondering, I was on Tindamax for 30 days after my first dilation at the Cleveland Clinic in early-February. It was... [ more ]
I'm sorry! I hate that you've been battling for 5 years. I remember the physical and emotional toll that 1.5 years of a malfunctioning pouch had on me. I cannot imagine 5 years. You are strong! I hope this dilation helps! How often are you getting dilated? Is it possible to increase the frequency of your dilations? I'm not sure whether that's a good idea medically with your fissures and such, but it seems like it could help. I agree with you, self-dilating is not the long term answer for me. [ more ]
See all 13 replies...
J-Pouch ForumsGeneral Discussion
i drink puerh tea instead of coffee now, the ripened puerh tea is much like coffee, this one is more like coffee flavor: https://www.umiteasets.com/ripened-puer-tea-cake.html [ more ]
I have psyllium (and yogurt, and VSL #3) before my morning coffee. I wonder if that's why I tolerate it so well? I couldn't tolerate coffee before my J-pouch surgery. [ more ]
My surgeon told me sometimes we just have to make choices. If we like really spicy foods, for instance, and find they tend to play havoc with our pouch function but you still want to include them in your diet......just go ahead and include them. Slather up with lots of barrier cream and know that once the spicy food is out of you, your discomfort should be over. Well, coffee is a "food" I refuse to give up. It causes me to have very loose b.m.s but I figure drinking it is just helping to... [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
I saw Align at Costco when I was at their pharmacy. They were also handing out flyers at the door, and one of the items was Align, discounted $4 off the regular price. [ more ]
It might be worth pricing the VSL or Visbiome capsules. I think they are something like 1000 times more potent than Align. I hope whatever you do works for you. [ more ]
I'm praying it works well for you! [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Great! FYI, surgeons and doctors might be like "yeah, that does nothing, but it can't hurt!" I would try for a month or two on your own and see if you notice a difference! very easy, nice, and won't cause any problems! [ more ]
Jenners-thank you this sounds very hopeful. I am seeing her today and will tell her about the castor oils packs. [ more ]
This might be a little out there but agree about the PT!!!! particularly castor oil packs. Changed my entire belly (for better). I was having problems with conceiving because of scar tissue. We ended up doing IVF, and got loads of eggs. Prior to inserting embryos I went to an "internal soft tissue physio therapist" to do work on my (bountiful) scar tissue. SHE WORKED WONDERS!!! my abdomen used to be very hard and full of "knots" and also extremely painful areas 9that I had gotten used to and... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Hi I'm in Salt Lake City. I go to Granite Peaks GI they have several GIs. [ more ]
I don't know anyone in Salt Lake City - sorry. I am on Entyvio and it is working well for me. The inflammation I had in the small intestine has reduced. (Shows we are all different and respond to different treatment in different ways.) I've only used Entyvio as a j poucher, not when I had UC, but a friend of ours is using it with Crohn's and having good results so far. [ more ]
I tried Entyvio and sadly was a non-responder. There were no side-effects either: no effects at all. Glad you are well, sorry to hear your daughter is not. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
I think you have the basics. I also brought my favorite tea since I knew they didn't have it and it was something I really looked forward to having after I woke up. [ more ]
Takedown? The hard part is over, the takedown procedure is nothing compare to what you’ve already endured. I didn’t take anything with me that was out of the ordinary. I was only in hospital for 4 or 5 days and I could of been discharged 2 days earlier if I didn’t live so far from the Hospital. I cant see any reason why a NG Tube would be necessary, I didn’t need one during takedown and the surgery its self didn’t take long; I was back on the Hospital ward before midday. I was lucky to have... [ more ]
Shower gel so you don't have to grapple with a bar of slippery soap. Or when you drop bar of soap. For going home after surgery, I packed pull on pants, and slip-on shoes. No struggling with zippers on a swollen tummy, or shoelaces. Large plastic water bottle. Bidet bottle will be the single most important item, so it's good you thought of it. I packed shower shoes and room slippers that could be put through the washing machine when I got home. I found the hospital pillows the worst to sleep... [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
All the best to you. I hope things improve for you in the future. [ more ]
Ok. Well as I stated before, the 3 months I had to have a temp one was pure hell. I look back to when I was told getting a J-Pouch was the only solution and wish I would have not been so quick to jump to that decision. So getting what amounts to the same type of surgery is not going to be an option for me this time. Thank you for your open and honest discussion. [ more ]
Yes, an ileostomy has an external bag. No one knows it’s there unless you tell them. Also, a lot depends on where the stoma is placed. Mine is below my belt line. I’ve seen some that are higher which would affect their visibility if you weren’t weary a shirt. [ more ]
See all 18 replies...
J-Pouch ForumsGeneral Discussion
I haven't had juice in days. I know I cant have it anymore. But I really do miss it. Everyone says that will pass. Things are already going much better. With my high in the low 200s now. Much better than 400 [ more ]
Sonja, cut way back on juice. One small bottle of juice will send your diabetic blood sugar skyrocketing because it is concentrated, with several fresh oranges in one bottle and you wouldn't normally eat several fresh oranges in one sitting. Also be careful how you portion sweet potatoes. They are a bit better for you nutritionally than white potatoes, but still there is sugar. You're right, the food that is recommended for j pouchers (white potatoes, white rice, bread, pasta, bananas) to... [ more ]
I feel your pain for sure. I have chronic obstructions due to adhesions. I had my last clean out 2.5yrs ago. 5 obstructions. There are times all I can eat is mashed up sweet potatoes and juice. But now due to a new diagnosis of type 1 diabetes they have no idea what I will be able to eat. I have a appointment next week with a diabetic dietitian. Drs are very concerned due to jpouch diet and diabetic diet being so different. Doing things outside of work that I actually enjoy is a necessity. [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
I uses to find probiotics really helpful (rice Bio-K usually. but even a nice kombucha would make a difference), but then i got pregnant and suddenly they made me feel like i was being poisoned. I could not stand the thought of them. So I stopped, and still when I try bio-k it makes me feel awful. but Better booch kombucha makes me feel pretty good. But it has a lot of sugar. I have ZERO idea if any of this is helpful! Just to say it all seems to be in flux. Sometimes they are helpful,... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Thank you [ more ]
Thank you [ more ]
For me personally, I limit some foods because of how I react to them. For example, I am lactose intolerant since surgery so milk products don't treat me well. I either use Lactaid when eating them or just skip them. I cut down on sugar cause it is a trigger for pouchitis in me because it feeds the bad bacteria. Other foods I do in small portions because of how they loosen or tighten the stool too much. One is raw veggies. I can handle a few carrots, but too many and I have pain when they... [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
Hi Jenners. In my experience, it’s only a matter of time when crap hits the fan and all hell breaks loose if treatment doesn’t go well. I suffered about 3 years with trying to deal with the ulcertions in my pouch until last year when my inflammation exploded and landed me in the hospital for 5 months. Stelara is a biologic. When on any biologic with a stricture, even with dialation, the stricture will close back up. My surgeon here was adamant that they couldn’t save my pouch because of poor... [ more ]
Heya, this all sounds so hard! 5 months in hospital sounds awful!!! Thank you so much for letting me know about your experiences. I do have some ulcerations in the jpouch, have been treated for a lot fo "pouchitis" over the years. Now seem to be changing diagnosis to Crohn's because found ulcerations further up small intestine too. Stellara seems to be a drug for crohn's? So this made your stricture worse? The doctor suggesting the surgery did indeed warn of the difficulties with bloodflow... [ more ]
❤️
See all 4 replies...
J-Pouch ForumsGeneral Discussion
The clear passage therapy was great! I have been doing very well since I had it. I am currently in search of a physical therapist closer to me that does similar type of therapy because it is so far to get to all the clear passage facilities. I do think it definitely helps. [ more ]
Do yu have anything to report on the Clear Passage Therapy? Would be great to hear how it went. [ more ]
I have had so many obstructions, one turned into an emergency surgery, I was one hour from losing my life according to Ithe Surgeon. If i don't take Super Enzymes with every meal I will obstruct or feel the painof an obstruction starting. Super Enzymes break down food in our digestive tract. They have been a lifesaver for me. Please try them. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Fly girl, I replied in the new thread you made for this topic [ more ]
I’m having my stoma /Ileostomy surgery in a couple weeks and I’m a flight attendant. For those of you Who are flight crew how long did you take off after having your bag placement? Especially flight attendants we have no options for light duty and have job requirements of bending twisting and lifting 50 pounds. And the routes I’m working gives very little time when I’m inner Island in Hawaii to have bathroom breaks. Boarding in the planning take longer than the actual flights themselves so... [ more ]
What's the longest you're looking at in terms of having to deny yourself a bathroom and how long would you be able to give yourself to recover first? I won't lie, it can definitely be done but probably not soon without drastic measures. If you need to go 6+ hours - realistically it could be 12-18 months before you get to that point even if you take to the pouch well. You can do a lot of things like juggle medicine and diet but for the really long hauls it is going to be tough for you until,... [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Hi Alex, as everyone has already said early days for you. Things will get better, but not overnight. I think the best thing you can do is to go easy on yourself. As new as your pouch is, eight BMs a day isn't really that bad. I mean, if you think about how many time we pee everyday, then the BMs really aren't that bad. You just need to take that first step back into your active life style. Yes things will be different, but so what. I've had my pouch for 16 months, May of 2018. It hasn't all... [ more ]
It takes a while to feel better. I was diagnosed with UC in April 2015 and had my first surgery in November that year. So I barely got used to even having it, just one crazy flare that didn’t get better, even with biologics. It’s been over 3 years since takedown and I have resumed most of my activities and more. For me, it’s a little different because I am semi-retired, but the days I do work I take Lomotil to help get me through and I know where all the bathrooms are along the way since I... [ more ]
First of all I want to thank everyone for all the nice words and advice. It really helps me to understand this phase of recovery and gives me the energy to move on. I think the combination of my current problems and the mental aspect of the recovery has knocked me down, but.. not knockout. Winterberry: thank you for the encouraging words. I try to live by all the advice I found on this great site. I take probiotics every day, pay attention to what I eat, drink enough water, don't eat spicy... [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Steroid tapers are usually only a problem after an extended period of treatment. It can take a long time to persuade the adrenal gland to resume its full responsibility in the matter. [ more ]
Ironically I am on a prednisone taper right now, my second one, although it’s not to treat inflammatory bowel disease but “inflammatory airway disease”, which I am now seeing a pulmonologist for. This started with pneumonia in April and a persistent dry cough ever since, which is apparently coming from inflammation in my trachea seen on a scope by a ENT. Since then I had a 50 mg Prednisone taper and 2 inhalers which haven’t resolved the issue. I am now on a 60 mg taper over 12 days, an... [ more ]
David, if you’ve had trouble getting off prednisone in the past then I’d recommend thinking smaller than your idea of alternating 5 mg and 2.5 mg. For example, you could try alternating 5 mg and 4 mg for a while, and then going to 4 mg per day. If you have an underlying condition that the prednisone is treating then simply withdrawing the prednisone will fail. You need a proper diagnosis, and then a plan for how to treat it, ideally without steroids if that turns out to be possible. You may... [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Yeah I have been a patient of Shens since 2008 and have been through a lot with him since, many procedures, needle knife, experimental procedures and a pouch redo 3 1/2 years ago. I am currently having some burning in the anal canal with a sore spot about a fingertip in, and I am basically getting blown off by his office. Unreal. He has me going in for MRI next week to hopefully rule out fistula. But only option he will give me right now is the hyperbaric oxygen therapy which is not an... [ more ]
Shen’s talent belongs in NYC. He needs the big stage. He will be reunited with one of his prized protégés, my former GI Dr. Oikonomou, who was recruited out of Yale by Mount Sinai with promises of a pouchitis clinic. Columbia-Presbyterian likely made similar promises to Shen and offered him a lot of money. Never forget that big talent needs a big stage. This is why Reggie Jackson signed with the Yankees in 1977, and many other baseball stars after him. It’s no different in the medical... [ more ]
Update on Shen,s move to NY Columbia Presbyterian. He will start there on Nov 1. I saw him today and asked why??He said 6 surgeons have left CC and he doesn’t have support for pouches or Pouchitis like he used to. He says Cc is concentrating more on colon cancer. He did say there are still good Dr,s at CC, but I will definitely be going to NY. He seems excited. Dr Kiran is there (used to be at CC). Shen,s daughter just started at HArvard—so he’s closer. He had 2 doctors from China with him... [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
Ya thanks I’m excited. I had the 3 step process. It’s been a year now since my first surgery and I has my jpouch created in March. I’ve been working out and getting I shape but got a hernia at the stoma site so I’m reduced to walking which I usually get 70-120 km done In a week. Any tips on things I should bring to the hospital with me? I have a good idea but maybe something you wouldn’t have thought of before your takedown. I had my pitch test last Tuesday so just waiting on the results... [ more ]
Thank you!!! I hope everything goes well for you too! ❤️ I’m 3 weeks post op now and still doing well! Stools have decreased and are thicker. Butt burn has gone way down. I’m out running errands and pretty much back to “normal” as far as doing my daily routine and whatnot. I do have a fissure but it’s not really too bad. I have a paste for it. I’m also back to a regular diet! Still being careful and chewing very well. Excited for when my lifting restriction is done and then I’d love to start... [ more ]
Awesome, good for you. I’m hoping to have my takedown next month I’ll pray for the same experience as you lol [ more ]
See all 17 replies...
J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
I have had a lot of stomas to close since they have moved mine 4xs. All have closed on their own in their own sweet time...nothing that I do or do not do will change that. I just keep them clean and covered with sterile gauze, protect them and the skin around them with something and avoid bathing for the first while, No swimming pool until they are completely healed or granulated in. To avoid ugly scars at I do pull the edges closer together with steri-strips but I do not try to close them... [ more ]
DH's healed(closed) by itself. [ more ]
I think it finally closed yesterday. I no longer covered it with gauze and the crust came off. It didn't weep. It took exactly 100 days! [ more ]
See all 12 replies...
J-Pouch ForumsGeneral Discussion
I had an experience with my Gynecologist where he was out for about a year. Turns out he had colon cancer, I believe. He did come back. He was out at the same time I was in the process of getting my pouch surgeries. We had the same surgeon. So, you never know. [ more ]
Yes. And No. I did have Dr. Hardi; went in for a scope in January, scheduled a follow-up for February and before I got to that appointment, I got a call from his office saying that the Dr. would be out indefinitely and that they would call me back once he get's back. At this point, it seems like a done deal; he won't be coming back. I wonder what happened? Maybe he hit the lottery. No. I don't know who I'm moving to. Have you come up with any names for a replacement? [ more ]
@rustyskyline Was it Dr. Hardi? Have you figured out which doctor you are looking at moving to? [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Hi, I had a 3 step surgery in 2010/2011, after 10 years with UC. I am thankful every day I have this surgery. I was just like you, going to the bathroom 15-30 times per day. Now, I usually go 4-6 times per day, with 1 of those overnight. No urgency-- I can hold it if I need to, and I do when I am in a meeting, or at the theater. The only time I ever have urgency is when I have pouchitis, which I get about once a year. But it is super easy to get rid of- just a course of antibiotics. I never... [ more ]
I've had my pouch for 15 years. When I first got the pouch, I was was going that often, 15-20 times a day. The biggest issue with that was the butt burn and I hadn't been told about Calmoseptine yet. I now don't go anywhere without it. It takes some time for the body to adjust but I'm sure it's different for everyone. After a few months I was down to less than 10 a day and within a year I was at my norm of 4-6 times a day. It really comes down to diet. Dairy doesn't process the same way it... [ more ]
Hi Gus, There is always a chance that you can still have issues after the surgery, excessive bm's etc, but as Scott mentioned, a good healthy jpouch is much better than what you are experiencing now. It may take time to adjust, finding a "diet" that works for you. Eating a lot, or having gassy foods can still make you feel that urgency and give you excessive bm's. I average 4 to 6 bm's a day, with little to no urgency. I have had a few blockages, a few bouts of pouchitis which have sucked... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Thanks, unfortunately all these fibers are having the opposite effect. Decided to try ground chia seeds, they absorb liquid. [ more ]
Benefiber and Citrucel also provide soluble fiber. [ more ]
Any other suggestions other then psyllium husk or rice? meds are slowing it down but not bulking [ more ]
See all 13 replies...
J-Pouch ForumsGeneral Discussion
An abscess can lead to fistula in most cases, from what I heard. [ more ]
I was cautioned by a dietician when I inquired about the keto diet for myself. She said that the keto diet stresses the kidneys quite a bit and with a j-pouch we are in a state of slight dehydration all the time due to the lack a colon. This also stresses our kidneys. I tried it for about 2 weeks and didn’t like it. I am vegetarian and had a difficult time so gave up and went back to my normal diet. I have to admit however that the keto diet saved my cousin’s life (she has all her bits) and... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
@blufnger03 - Honestly, I would absolutely recommend Dr. Obias for any surgical needs, but I can't recommend Dr. Chandler for GI maintenance. I had a really tough time and was not happy overall with his care. I now see Dr. William W. Immel in Springfield VA who I HIGHLY recommend. He is incredibly attentive, easy to talk to, and responsive. I literally started crying during an appointment because he was just so helpful and I had was frustrated for so long at the lack of empathy,... [ more ]
@kc80 and @Joanne - Just found this old post. Have you all been happy with Dr. Chandler's care? I had j-pouch surgery about 8 years ago, and get pouchitis about once per year, and am having a hard time figuring out which doctors know how to treat pouch patients. My old doctor just retired and I am currently healthy, so just looking. Please let me know! [ more ]
Thank you. That's very helpful. It sounds like GW has the best team. [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
❤️
POUCHOMARX - I honestly don't know. I wasn't making any changes to try to help this, it kind of just happened. I was thinking maybe my anal sphincter build up for the the years and finally they are able to hold it down while I'm asleep? It's not like I've been doing kegels on a regular basis (although I was the first year or two post surgery). Sorry that I can't be helpful with this! But what I can say, is that some things just take time. [ more ]
What did you change? I have very minor leakage since my redo 3 1/2 years ago and I am guessing this is just going to be my normal. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
I had a redo 3 1/2 years ago with mucousectomy and I was told by my GI, Dr Shen that the cells can grow back and you still can get cuffitis.. [ more ]
Yes-fissures are little tears in the skin in and around the anal area-it literally feels like you are pooping shards of glass. The ideal solution for these is a bidet attachment for your toilet seat-you can sit on the toilet and have the bidet attachment shoot a stream of water up to bathe the anal area several times a day-I have found this way more beneficial than creams, etc. [ more ]
Fissures feel like there are razor blades or shards of glass moving around inside when you try to have a BM. Buy a sitz bath (a plastic basin shaped like a toilet seat) for your son. They are available at drugstores or Amazon for approximately $14. It fits on top of any toilet (make sure the toilet lid is up). Fill the sitz bath with very warm water, or hot water if it can be tolerated. Sit in the water until it cools. The warm water will increase blood flow to the tissues in that area and... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Mostly it’s done by stool culture, which works best before antibiotics are started. C. diff is diagnosed with a different kind of test, but still best without antibiotics. You could try something like the following: 1) I have a combination of symptoms (diarrhea/arthritis/conjunctivitis) that sounds like Reiter’s syndrome/reactive arthritis. 2) It hasn’t responded to Xifaxan (if that’s still true) 3) Can we try a stool culture to look for a specific bacterial cause? J-pouchers probably have a... [ more ]
How is the specific bacteria identified? What should I ask my GI on Friday? [ more ]
Bacterial GI infections are usually contracted from contaminated food handled by someone who ignored the “Employees must wash hands...” sign in the bathroom. Some, like Shigella, are also infectious enough to be transmitted from person to person. Calprotectin doesn’t give very useful information in most cases. It’s usually a good idea to try to identify the specific bacteria before treating with antibiotics. In any case these can run the gamut from clearing up by themselves to killing you... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
This will be a tricky one to untangle. Have you had the shingles vaccine? That would decrease the confusion (going forward), and this might be a perfect time to get it (at least the first dose, since it’s unlikely to have been studied in people on methotrexate or Humira). Shingles is typically exquisitely painful, so if your original rash was merely unpleasant that argues against shingles. It doesn’t really matter much, though, whether one of the drugs predisposed you to shingles or simply... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
I had not thought of the possibility that Crohn’s diagnosis opens up additional treatment options but it could expand the scope of insurance coverage for treatment. That being said, the treatments are exactly the same for both UC and Crohn’s when inflammation is difficult to control. One of my colleagues who has his colon is on Remicade for resistant inflammation in his colon after Asacol proved ineffective after some years. Patients who have pouchitis and Crohn’s that do not respond to... [ more ]
My situation is similar. My Crohn’s dx (15 years after J-pouch) came from a Prometheus test, which i believe i got because i had developed persistent joint aches. Still not sure how accurate that is. But as someone else mentioned, that diagnosis may open up more treatment options. [ more ]
Wendy, Your scope findings make your situation virtually identical to mine, including the stricture at the J Pouch inlet. There is nothing to wrap your head around. It’s pretty simple. We have inflammation in the same areas. What you call that inflammation doesn’t matter. What does matter is how it responds to treatment. In my case it responds well to Remicade and low dosages of antibiotics. I have had my J Pouch 27 years and the last 12 or so with this same situation. Chronic dependent... [ more ]
See all 18 replies...
J-Pouch ForumsGeneral Discussion
I had a similar concern with sedation and anesthesia. I did have a small mess after an upper GI endoscopy. For bigger procedures I mentioned my concern to the nurse and was reassured by them and didn’t find anything to clean up. I’m guessing that they might have cleaned me up, but I was asleep at the time. I have always emptied my pouch immediately before climbing up on the gurney. Eating a light dinner or skipping it might be helpful, and letting the nurse know of the possibility would also... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
CT, thank you. I'll get a Brita filter. [ more ]
I mostly drink bottled water that is pre-filtered. Especially when on the road and travelling so as to remain consistently hydrated and not have to worry about these kinds of issues. A Brita filter like Scott suggested will do the trick for the tap water though. [ more ]
Thank you, Scott & Bobish. I just didn't want to pay a fortune for VSL only to find that chemicals used to sanitize water kills the bacteria. I usually mix it with kefir, but drink lots of water all day. Scott, if you take VSL DS and also use antibiotics and have success, I guess I won't give anymore thought to the water issue. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
I've been on azathioprine for 6 days already and yesterday was the first day of complete normal temperature and not needing Tylenol. It's been 3 days not needing Tylenol to be able to get up in the morning. No one ever believes me but I metabolize azathioprine really fast and I thought at first I'm imagining it but not needing Tylenol when I needed 3-4 a day before is quite telling. [ more ]
Well I don't know if I jinxed myself but I need to be back on azathioprine. At least that's what the doctor prescribed. My auto immune disease did not go away with the colectomy. It came back as arthritis caused by inflammation in flares. I'm devasted. I was at the end of medical rope. What will happen to me now? [ more ]
EIMs would be in the realm of a GI doc. If you think this is something that you have it would be a good idea for you to get a good GI doctor to make a dx . He can tell you if you will need to take a biologics or not. You could be worrying your self for nothing. It's very possible you are going through normal healing process, given the short time you have had a pouch. However, it you really think you have EIMs, the first step for you would be to find a good GI and get a dx. Good luck. Hope... [ more ]
See all 20 replies...
J-Pouch ForumsGeneral Discussion
The low fodmap diet doesn't have to be permanent but you may find that certain foods still bother you after you try reintroducing them. You may find your gas reduces with time, or that you are able to tolerate it better with time. [ more ]
Chickpeas are one of the foods that Beano works well on. For some people they can be gassy (like beans) for reasons that have nothing to do with pouches, colectomy, etc. [ more ]
Ok, so firstly chickpeas are (largely) fodmap friendly. So even if you followed fodmap you could still eat some chickpeas. Fodmap is an elimination diet, you exclude problem foods for approx 3 months, the reintroduce then slowly. Fodmaps basically ferment in the gut, reducing fodmaps means less gas. It's also important to reduce and control the amount of sugar you consume. The RDA for sugar is 35g. I try to stay around this, your tolerance may be different. There are 4 fodmap groups,... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Well if there’s one thing I’ve learned through this “adventure,” it’s to take it one day at a time. It will get better. We will never be as good or feel as good as when we had our colons. And this joint pain? It too will be manageable. No doctor or family member or friend can know what the solution is without you being a willing and active participant in your own recovery. The burden is on us to take control and figure it out, because if you don’t, you can end up in a downward spiral where... [ more ]
I'm actually having a really hard time dealing with this right now. [ more ]
I hear you. I’m thinking I might have to go back on a biologic after 10 years of Remicade. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
P.S. In case you opt for j-pouch surgery for your son: I had my j-pouch surgery done at Cleveland Clinic by Dr. Victor Fazio who was the head of the gastroenterology department at the time. I don't know if he is still doing surgery, but he is AWESOME! I would have HUGE confidence in any gastroenterologist who has worked with him or studied under him! [ more ]
I had all but 8" of my colon removed when I was 15 - straight connection. This was before j-pouch or any pouch surgery had come about. I still had some colitis in the 8" but no bleeding. I am so thankful I had the resection-felt so much better! The resection worked for 16 years but I ended up having to have j-pouch surgery and still have it 25 years later. After the resection I still had to be on a good bit of medicine. I'm allergic to sulfa drugs so a lot of times I had to use cortisone... [ more ]
Thanks so much for your input. Yes, im trying my best to find out what may work better for my son. Thanks again for your kind words. [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Well there's no pain when I'm passing the stool, but I can still notice a mild sort of pain when I feel my pouch filling up and feels tender if I was give my stool a bit of a push. I think I'd be seeing blood if it was hemorrhoids and be in a lot more pain... Just hoping it's a strain that's taking it's time to heal. [ more ]
Is it possible that it's a muscle or nerve spasm? Or the start of a hemmoroid? Or inflammation that is irritated when you push? Just some ideas. Sorry nothing definite to add. [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
I’m stretching out my stockpile of VSL #3 (by using a lower dose) and hoping it becomes available again before I run out. Visbiome is a perfectly good substitute in the meantime (and even for the long term), and may be even better than VSL #3, especially if VSL doesn’t have any insurance coverage advantages for you. Temoty, you didn’t say which VSL formulation you were using, but you can effectively substitute the equivalent formulation of Visbiome. So if you had a prescription for VSL #3... [ more ]
so you're saying to try and get a double strength script of visbiome until VSL#3 comes back? Nothing is clear in any of the forum posts or visbiome site about what to do...... Anyone with specific plans of how they are dealing with no VSL#3 right now is welcome. [ more ]
Two capsules of Visbiome is a pretty low dose. It might have a small effect on delaying or preventing pouchitis, but the dose does matter. If you have no problems with pouchitis it may be a waste of money. My dose is equivalent to 32 capsules per day, at least when VSL #3 is available, and it does seem to help me with pouchitis. There is no appreciable evidence (as far as I know) that it helps with cuffitis, though it does help some people with UC, which can be very similar. An adequate dose... [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
I had a GI doctor once who used to say "if you are going to be sick whether you eat toast or a steak, then why not eat the steak?" Basically, you have to eat. You should be on a soft food diet right now. Here is a link to what a soft food diet is: https://my.clevelandclinic.org...l-soft-diet-overview Start slow and slowly add fiber and less soft things to your diet. Certain things will make you gassy or uncomfortable, just like when you were sick: onions, garlic, cabbage, mushrooms, corn,... [ more ]
I know you have food intolerances, but wondering if you can tolerate high fat/calorie choices just to get jump started. For me, when my weight dropped so low, I could barely push open heavy doors in a public place. That's when I decided I didn't care what I had to eat, I needed to gain weight no matter what it took. I ate fast food, ice cream, candy bars until I had the weight on my body I needed to survive. No dietician gave guidance and likely wouldn't promote this as a healthy diet, but... [ more ]
It has to get better because I don't know how much my body can endure. I'm dropping weight each day. [ more ]
See all 38 replies...
J-Pouch ForumsGeneral Discussion
Sorry you are having such a difficult journey. First, no need to keep blaming yourself for not being a perfect patient. Many of us has been there, crying and blubbering because of the pain and stress of it all. It happens. But, you need follow up care. You can call your surgeon’s office for a referral. If that fails, call your gastroenterologist or primary MD and explain your current issues (in concise terms). They don’t need the whole drama. If asked what happened with your surgeon, you can... [ more ]
See 1 reply...
Join Us!
Founder, Creative Director & Web Master
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.
Forum moderator and advisor
Jan Dollar R.N.
General Disclaimer
- This ileoanal web site is designed for educational purposes only and is not engaged in rendering medical advice or professional services. The information provided through this ileoanal web site should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you have or suspect you may have a health problem, you should consult your health care provider.
Materials presented on these pages are copyrighted by William Johnson and Linda B Hurd. Except as superseded in individual documents found here, these materials may not be sold or redistributed for profit in any way without express (not email) written permission of the authors. This includes, but is not limited to, translations into foreign languages, mass archival as on a CD-ROM and inclusion in commercially published compilations (books).
Confidentiality
Confidentiality of data relating to individual patients and visitors to the J-Pouch Group Web site, including their identity, is respected by this Web site. The J-Pouch Group Web site owners undertake to honor or exceed the legal requirements of medical/health information privacy that apply in the country and state where the Web site and mirror sites are located.
The Crohn's & Colitis Foundation of America,
Philadelphia, Delaware Valley chapter, is located at
521 Bustleton Pike, Feasterville, PA, 19053.
Tel: 215-396-9100
National CCFA headquarters are at,
396 Park Avenue South, 17th floor
New York, New York 10016-8804
Tel: 212-685-3440 800-343-3637
Already a member? Sign In
