Calmo
Visbiome

Skip to main content

Topics

Sorted by last update

J-Pouch ForumsGeneral Discussion
Vomiting & j pouch
FM Former Member
Former Member I appreciate the input. My daughter had wondered if it could be from being too full. I have considered obstructions, etc. because we've dealt with them in the past but she is still passing stool normally while these episodes take place,so I didn't think that was it.I will definitely look into it. I had her surgery date wrong as well-it's only been a year, not two, so I know there's still adjustments to be made. She struggled with numerous complications prior to the final take down- its so... [ more ]
tulsamom What you describe sounds like partial obstruction. Pain and vomiting could be because the stomach content can't go anywhere. This can be cause by inflammation, scar tissue or strictures. I would suggest you search for this on this website and see if it sounds like what your daughter is experiencing. Good luck to you both. [ more ]
Laurie49 JPouch Mom -- I've had my pouch for 16 years now (wow! I can't believe it's been that long!) and I get nauseous if my pouch is full. I know it sounds weird, but there is a direct correlation for me. It happens a lot during the night. If I wake up feeling nauseous, I will realize that I need to empty my pouch. I'm certainly not saying that this is what is happening to your daughter, but if it is consistently happening at the same time of day, perhaps it's because of having a full tummy from... [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Anxiety over the bathroom?
M Megals
Spooky Oh yes, loo was quite common while I was in the UK. But "loo" is a term we use a lot in Canada as well, at least I do. Still, I've also always wondered the origin of the term; but I guess it's the same reason why many people in North America call it "the John"! [ more ]
KiwiPoucher Thanks for that explanation! Expect you came across the most commonly used name when you were in England...."Just popping to the loo!" Now I am wondering where on earth "loo" came from, will have to do some research. [ more ]
Spooky KiwiPoucher, In North America, toilet itself isn't a rude word; it's more when/how it's used. For example, in North America, it's not considered proper etiquette to ask, "where is the toilet?" or (such as for a student) "May I please go to the toilet?" You would normally say, "where is the..." or "may I please go to the washroom/bathroom/restroom." (Or you may even say, "I need to use the ladies' room or little boys' room." *LOL*). I've spent some time in the UK and I admit it took me a week... [ more ]
See all 29 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Ways to help Implantation
MsSterlMsSterl
CeeeeCeeee Not the same situation but last December I needed to have a complete hysterectomy and my gyn. surgeon really wanted to do it laprascopically. My colorectal surgeon said it wouldn't work because I had alot of adhesions. Still the gyn surgeon was determined. Up to the minute they put me under I repeatedly told the surgeon I would not be in the least bit disappointed if he had to open me up. Well, he had to for the reasons mentioned above and he did so along the same scar as the original... [ more ]
commandz My doctor talked to the chief of surgery about me and was telling him about my total collectomy and wanting to take my tubes out and he said that we shouldn't do it laprascopically because they would have to go in around the small bowels and since that is all I have and have been doing well they don't want to mess with that. So I don't think that we are going to do anything and try without blocking anything and do IVF. I can see either side on making my decision but I don't want to be cut... [ more ]
beth156 MsSterl-I'm actually getting the Essure placed tomorrow morning... YIKES!! for 95% of people it takes 3 months before you can have IVF. YOu need to wait for enough scar tissue to form to block off the tubes. They verify that you are ready for IVF via an HSG test. If after 3 months, some dye still leaks though, you need to wait another 3 months. My specialist said he has done about 30 essure placements for hydrosapalinx and all of them except for 1 person were good to go after 3 months, and... [ more ]
See all 9 replies...
J-Pouch ForumsHelp! Need advice now!
Having A-LIF L5-S1 surgery.. have pouch concerns.
OnealOneal
Jan Dollar Yeah, not like the "good ole days" when you were kept in bed, immobile, for weeks. Jan [ more ]
Oneal Thanks Jan. Great advice. [ more ]
Jan Dollar Well, yeah, scarring may prove to be problematic since that part of the spine is right behind your pouch. Would it be possible for your spine surgeon to confer with your pouch surgeon prior to surgery, so that he is 100% up to speed about your inner anatomy and any pitfalls that may present? I understand the reluctance for a posterior approach, as there is greater risk to the spinal cord that way. I am not sure where you get the idea that you will be bedridden for a week or two. My... [ more ]
See all 3 replies...
J-Pouch ForumsPouchitis
HUMIRA for Pouchitis AND Ankylosing Spondylitis
K Krazy1
Jan Dollar Justin, you may want to give Simponi a try if Cimzia does not work out for you. It is approved for AS and awaiting approval for use for UC. I did not need to wait, as it was prescribed for my arthritis. http://www.prnewswire.com/news...litis-162627466.html Jan [ more ]
Krazy1 Thanks everyone! I hope you all have a great day! [ more ]
JDShaw Worked for my AS and Pouchitis for about a 1 1/2 years. I was symptom free then it just stopped working one. I'm trying Cimzia now and so far no luck but I have only had one dose. [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
traveling home shortly after takedown
G Guest
Guest i would love to leave right from the hospital. were so eager to get home... [ more ]
Srf1 A couple of things to keep in mind. You'll be just starting out eating again following takedown surgery so your diet and the amount of material in your system when you get discharged will be pretty limited (liquid/semisolid diet). As mentioned the narcotic pain killers will slow you down and hopefully you'll find a "window" of time when your new pouch is nice and quiet - for me it was morning till early afternoon. If you can find out what your hospitals discharge policy is you should be able... [ more ]
Guest how do people travel from other cities states and countries like i read about. they can all afford to stay in hotels for a month. probably not even weeks... [ more ]
See all 6 replies...
J-Pouch ForumsK-Pouch Korner
Saw the doc today
EricEric
skn69 Dixie, I found that moving around a bit helps when I cannot find the right direction or am overful...Twisting and turning a bit or standing and bending forward and back..then I try to reintroduce the tube...could take a few tries...I also, in extreme emergencies lay on my back on the floor, raise my legs (a leg lift) over my head and try to lift up my hips or lift my legs up onto the bed while laying on the floor..the thing is to lift your hips up to get your pouch to move around a bit..then... [ more ]
Dixie from Saskatchewan Thanks everyone for all the information. I had my surgery November 24th & was intubating just fine until about a month ago. Then I started having problems inserting my tube & it was then that I realized my valve was moving around. I'm on my second Kock pouch & my first valve didn't move at all & I never had problems inserting my tube. My first Kock pouch fell off my intestional wall. Dr. Cohen was unable to repair it & it was at that point he took out the first Kock pouch... [ more ]
skn69 Vanessa, I said valve redo...not pouch. Sharon [ more ]
See all 15 replies...
J-Pouch ForumsGeneral Discussion
I just want to say thanks
FM Former Member
Jan Dollar Yes, so true. No guarantees in life. But, I think generally, this surgery is not done on a whim, but because there really are no better alternatives. There are no colectomy options that are completely without issues. You just have to pick which issues you are willing to live with and go for it. If it is a bust, you move on and go for plan B. No point in lamenting the fact you have bowel problems or shaking your fist at God about it. Even people who seem to skip through life without a care... [ more ]
Former Member A lot can be done. Life requires more planning for sure -- and maybe that's not fair compared to others who are healthy. I jut eat a small yogurt for breakfast, take Imodium before the ride, and grab a snack like granola bar to eat in the middle of my ride. Sometimes I do have to stop and find a bathroom. It happens. I tell you one thing, docs don't talk about it much, but exercise helps bowels physically and psychologically. Sitting still, a sedentary lifestyle, is not good with a pouch. As... [ more ]
ActiveUC'er 80km!?! That's awesome! Congratulations! I look forward to being able to do things again and hearing posts like yours is always encouraging. Even with the complications of a jpouch, it will most likely be better than the UC! [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
Eating Issues
K KiwiPoucher
Spooky Eating does increase peristalsis so if you are early on post takedown, it can take a while to adjust to the sensation. But I would agree that if you are going that much, an anti-spasmodic would be a good option. Hopefully as your system continues to adjust you can eventually reduce or discontinue the antispasmodic. [ more ]
KiwiPoucher I am about 6 weeks post takedown. On May 17 this year I had the single stage operation which took 9 hours, but then got sepsis and they had to do a loop ileostomy a week later. It is interesting being on this site that most people have it done in 2 or 3 stages, which actually makes more sense to me as it gives the J=Pouch time to heal. Saw surgeon last week and thankfully no stricture. Have been taking buscopan (anti-spasmodic) before last 2 meals and things do seem better! Thanks for... [ more ]
CTBarrister As noted above, bentyl, levsin, lomotil, donnatal. Bentyl and levsin made me feel a bit loopier than donnatal which is my anti-spasmodic of choice. [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
How should you feel after 1 year
T Traveller
fq at 3 months out, I am experiencing this too... pooping is not "smooth", discomfort and soreness afterwards, difficulty expelling the last poops and gas. i also thought it gets better in 1 year.... maybe it takes even longer for some, or maybe those are just the "quirks" and our new normal of the pouch. [ more ]
JenniferG yes, i have all those things at times [ more ]
Traveller Thanks Marianne, Kobi and Jen Can you tell me whether any of you still get pain when going, or feel uncomfortable or a little sore afterwards. I remember when I had a colon, even with UC, after I went to the toilet I felt fine until I had to go again. Also do you have periods when you are frequent for short periods e.g. 5-6 times in 3-4 hours. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Fighting Off Negative Thoughts/Negative Ideation
CTBarristerCTBarrister
Subzeromambo DJB, Your post made me laugh. Our club finally banned any business from being conducted in the exercise and conditioning areas. Members can be expelled if they receive more than two citations. It is considered "conduct unbecoming of a member." I always found eavesdropping on the lawyers and developers a lot of fun but peace and quiet is even better. [ more ]
CTBarrister I probably should listen to music. My gym has TVs on the treadmills and I try to watch the TVs with the subtitles. Unfortunately this guy spots me at the gym and he comes over and we have a bunch of cases together and he is like me, the candle burns at both ends, and he is a "true believer" for his side as I am for mine. And we both know this and that is why we get along and can actually conduct settlement negotiations in a gym. It is just the relationship we have and the way we are wired. I... [ more ]
suebear Oh brother! Stick some earplugs in your ears, turn up the music, and tune everything else out. You don't have to practice law in the gym. Sue [ more ]
See all 41 replies...
J-Pouch ForumsGeneral Discussion
IBD Arthritis - I'm so confused?
K kereen
Jan Dollar Here's the thing. You can have IBD related arthritis even though your colon is gone. It does not mean you have Crohn's. It is true that the more common form of IBD arthritis follows the bowel disease course. But the spondylitis form does not. It has an independent course. If you are willing to try, there are other biologics to try, Humira or Simponi, but you need to watch your ANA closely. There also is methotrexate. If this was lupus, you'd probably have a better result with the planquenil. [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
burping like a sailor....anyone else?
fqfq
fq thanks everyone! i think you are right, i am adjusting still. runner4449 - I re-read what I wrote and also laughed/burped out loud! i realize it's important to keep a sense of humor after everything we go through! good luck with your takedown [ more ]
Laurie49 fq -- I'd say your body is still adjusting and any way your body is releasing extra gas is a good thing. I'd give it a bit more time and if it continues, don't allow your doctor to dismiss it. [ more ]
runner4449 FQ- You gave me a good laugh in this thread. I'm not laughing at you...I promise. It's good to know it's possible to have more burping after take-down. I think I would be alarmed, too. Let us know if you try any of SKN69'S ideas, and how they work or don't work for you. SKN69 - You are very helpful in your suggestions. You've now mentioned a few things since I joined this website that I will definitely have on hand to try if certain issues pop-up after my take-down. Thank you! [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Take down scheduled
runner4449runner4449
runner4449 Thank you, SBS. I may very well see you at a future race; especially through Team Challenge. God Bless! [ more ]
SBS Runner4449, it's nice to hear the optimism in your voice. :-) It's a tough road we have to walk down, but you will get through it. No one ever says it will be easy. Best of all, you are not alone; you have a new set of friends to take the walk with you (even if it's only virtually). That goes for everyone on here. Hang in there and best wishes for an issue-free takedown. I'll be looking for you on the running trails in the not so distant future. Steve PS: love your new avatar/pic :-) [ more ]
runner4449 LIZ11 and fellow pouchers - I was at the hospital today to have my stent removed (had one for my ureter), and dropped off the article LIZ11 recommended I look at regarding J-pouch irrigation/enemas. My surgeon happened to be at the hospital today, and I asked the staff to make sure he got it and called me after reading it. I just got off of the phone with my surgeon, and I'm happy to say he is perfectly okay with me stopping the enemas. Once again, acknowledged that I'm a competent woman who... [ more ]
See all 20 replies...
J-Pouch ForumsPouchitis
if you have pouchitis, is it bad to take bowel slowers (immodium/lomotil)?
fqfq
clz81 Jeremy, I take rotate antibiotics with pepto bismol every few weeks to give me a break from the antibiotics. I have chronic pouchitis so I couldn't go more than a couple days not on something. But yes, they can lose effectivess with extended use and in my case they have for sure. Cipro and Augmentin don't work for me anymore, which is horrible since they used to work amazingly well. I'm rotating xifaxan and pepto right now. [ more ]
Jan Dollar For me, one of the ways I know it is pouchitis (or a cuffitis flare) is that bowel slowers don't work. At least not to any major extent. But, yeah, it is safe. But, I let up on the dose once I take antibiotics until I know how thick my stool will get with them. Jan [ more ]
Jeremy S clz81, do you take antibiotic everyday whether you have pouchitis or not. I only take it when I have pouchitis and as soon as it knocks it out I stop until the next bout of pouchitis and then I do it again. I've always heard that if you take antibiotic too much it will not work and you will be immune to it when you really need for something real serious. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
FYI Mt. Sinai (Toronto) IBD Group
SpookySpooky
Dixie from Saskatchewan I have a Kock pouch. When I was in Mt. Sinai for my repair surgeries I went to a couple of the IBD support meetings that were held in the hospital during the day. There were people there who had j-pouches & ostomies or relatives of those who had IBD or the surgeries as well as those who were just interested in IBD. My significant other also attended one of the meetings with me & he learned a lot during the meeting. I found the meetings most informative & it made me realize that... [ more ]
See 1 reply...
J-Pouch ForumsHelp! Need advice now!
Dumping Syndrome/Insulin Imbalance?
pouchmonkeypouchmonkey
Jan Dollar The event monitor is WAY smaller than the Holter. About the size of a pedometer. You could probably stick it in your bra, but it probably would be uncomfortable. I needed to wear mine for only about a week, although it was approved for a month. You only need to wear it long enough to find something. It's funny, there was nothing reported on my Holter recording either. But, once I had the SVT on the event monitor, the cardiologist said he reviewed my Holter again, and there were short... [ more ]
pouchmonkey Thank you all for your replies! I have worn a holter monitor & it just noted HR between low 60s to 130s, but stated it was otherwise "normal", my EKG & echo have been normal, my dr suggested wearing an event monitor for a month-but I'm a performer & don't really know how I'm supposed to fit wearing a heart monitor for a month into being on a stage in front of a lot of people? I'm tiny, & have a hard time hiding things in clothes-I had to wear maternity clothes when I had my... [ more ]
TE Marie Jan, Your son was born with PAT, paroximal ? atrial tachycardia. Not sure of the spelling but had an extra electrical pathway in his heart - our electrical pacemaker. He was converted with electric shock the first time when he was 2 days old. He was a 10 lb newborn in a NICU with tiny babies. Long story short they didn't do ablation procedures at that time, 1980. He had the procedure at age 15 and has never had tachycardia since. That's why I have a stethoscope and can count heart rates over... [ more ]
See all 8 replies...
J-Pouch ForumsPouchitis
Any theories?
LorsallLorsall
Lorsall Hi Sharon! Thanks for replying. Actually I already take my "happy liquid" (aka Prozac, which is an SSRI- selective serotonin reuptake inhibitor) because it has the side effect of raising blood pressure, and I have a nasty case of orthostatic hypotension. There was a concern giving me both of these drugs that they might not play nicely together because of the different effects on serotonin. And yes, my pouch has been quite jealous of all the attention my stomach has been getting, so like any... [ more ]
skn69 Sallie, A lot of antidepressants work that way on pouches too...for some reason serotonin uptake meds do the trick (has your pouch been suffering mild depression? A severe break-up or job loss??? )...no to take this lightly but it is a fact...enjoy it while it lasts and if it is not a med that you can take long term then you may ask your pouch doc for a mild antidepressant and see if that works its magic on your pouch. Sharon [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Eternally Grateful
K KiwiPoucher
Jan Dollar Kiwi, Most of us have had much suffering due to IBD, FAP, or other bowel disorders, so we are all sensitive to the challenges. Some suffered longer than others, some more than others. Having a haven like this where people understand is great. Certainly, not everyone is happy or satsfied with their outcome, but most manage to adapt or find workable solutions. Sometimes it means giving up on the j-pouch. Complaining for the sake of complaining is not helpful, and if the person is not seeking... [ more ]
suebear Wow, 33 years, congratulations! Unfortunately we have a long time troll on this site, who tricks new people into thinking that he needs help, and the more people try to help him, the more it ramps up his illness, and well, things just spiral out of control. He has been banned many times but he keeps coming back with a different screen name. If the board was static, yes, on one would respond to him. Sue [ more ]
See all 2 replies...
J-Pouch ForumsPouchitis
Pain management for Pouchitis?????
J JDShaw
vanessavy Most doctors will not give out pain medicine. YOu can thank the people who make these silly laws in our country. A lot get fines now if they hand them out. My last family doctor did only because I ran out.I had to pay out of pocket to him to do so though since it wasn't connected to his practice. Weird but how I got my Oxy refilled when I was 2 months post op and not able to get off pain meds. You have to go to pain management doctors, clinics don't do narcotics usually since they cracked... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Surgeon in Kansas City area?
FM Former Member
Former Member Thank you both! I wasn't aware I had more options than the one I knew of! Thank you again [ more ]
Debthetraveler Hello! My surgeon in Kansas City is Dr Lina o'Brien. I highly recommend her. She is so down-to-earth and spends quality time with her patients. I live in St Joseph and at one point had considered going up to Mayo Clinic. But my gastroenterologist referred me to Dr O'Brien. I'm so glad that I stayed local. So much easier to travel to Kansa City instead. She is at the medical mall on Carondelet at St Joseph Hospital. I had my first surgery at Menorah, and the second and third at St Joseph med... [ more ]
Dave Russell I got my j pouch at Mercy in Springfield Mo. the surgeon was Dr. Brooks. I am very happy with the results. Mercy is a very nice hospital and gave me the best of care. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Kaboom
L Lawrence
Jan Dollar I see, particularly in light of your other thread about getting out of the negative thinking loop. It is easy to let your mind wander into the "what ifs" and worry excessively about things that have only a remote chance of occurring. Of course, the best thing to do is to encourage your rational mind to take over and concern itself with things you actually have control or influence of. Easier said than done, I know. Remember, nobody knows what their future holds, so you may as well assume it... [ more ]
CTBarrister What I meant was the high dosages of antibiotics I take, and have taken for 17 years. I asked my pouch specialist what effect long term antibiotics usage would have on my liver. His answer: "you are the Guinea Pig." He also inquired about whether I drink a lot of alcohol, which I do not, even though I posted about a recent binge in the flagyl and alcohol thread. I have had some issues on past liver function tests, with abnormalities being detected. So this thread got me thinking again of... [ more ]
Jan Dollar Actually, Rick was going to have a liver transplant, but his cancer was too advanced by the time it was considered. He initially responded to the chemo, but relapsed later on. He was first diagnosed with PSC in 2005, when he had his colectomy (he had stage 0 colon cancer at that time). The liver cancer did not show up until 2009. While most PSC patients have UC, only about 5% of UC patients have PSC. Even less wind up with cancer of the biliary system. Liver transplant is more often due to... [ more ]
See all 6 replies...
J-Pouch ForumsWomen's Health & Pregnancy
2 Week Wait
MsSterlMsSterl
MsSterl So happy for u Sarah - Congrats!!! I am going to keep trying, not giving up yet. [ more ]
MsSterl Hi Speech Path, I am going to try again. I have an appointment on October 4th with a different RE so we shall see. I have been doing a lot of research so I have a lot of questions to ask the new doctor. [ more ]
rockandroller So sorry to read of your negative result. Only you and your partner/spouse can decide if it's something you can go through again. We all understand the sadness of this process, and not everyone is successful. [ more ]
See all 13 replies...
J-Pouch ForumsGeneral Discussion
living on peanut butter sandwiches...
G Guest
Rocket This is my last response to you. I hope you truly find peace in your heart. Negativity does not come from God. God is for everyone, anytime, anywhere. For your sake, I hope you seek Him out. I don't know if you are a Christian or not, but if you are, I am absolutly, positvily sure that Jesus loves you. Take a look at the Cross and realize He loves you. He died for you, me, the whole world. Please invite Him into your Heart. If you do, your life will change for the better. I wish I could help... [ more ]
Guest Well I'm sorry that doesn't fit in your book of alternatives, and oh I'm so sorry I even tried another alternative when you're suggesting just that, yet bring up the same old pathetic options that I've heard a million times before. [ more ]
Guest Well I'm sorry that doesn't fit in your book of alternatives, and oh I'm so sorry I even tried another alternative when you're suggesting just that, yet bring up the same old pathetic options that I've heard a million times before. [ more ]
See all 38 replies...
J-Pouch ForumsGeneral Discussion
Inconsistent JPouch
M MarkBB
mgmt10 I would say yes, for quite a while I wouldn't have two of the same days with my j pouch even eating the same foods. But I have noticed now that its been just about two years since my takedown that things are much more consistent. [ more ]
See 1 reply...
J-Pouch ForumsHelp! Need advice now!
Antibiotics successful for Cuffitis?
John95John95
jeane Your results are very similar to mine. Yes i believe we may have more inflammation than is normally seen in jpouches. Let's hope the meds clear this up for you. Even though I seem to have chronic pouchitis I am able to manage pretty well most days with meds and really eat almost anything i prefer [ more ]
John95 Hi Jeane, Just got the pathology report back today: 1- DISTAL ILEUM, BIOPSY: - ILEAL MUCOSA WITHOUT SIGNIFICANT ABNORMALITY 2- POUCH, BIOPSY: - SMALL BOWEL MUCOSA MILD CHRONIC INFLAMMATION, MILDLY ACTIVE - NEGATIVE FOR GRANULOMATOUS INFLAMMATION OR DYSPLASIA 3- COLON, RECTAL CUFF, BIOPSY: - MODERATE CHRONIC COLITIS, MODERATELY ACTIVE - NEGATIVE FOR DYSPLASIA Note: the inflammatory changes in the pouch would be consistent with pouchitis in the appropriate clinical setting. I wonder if the... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Raynaud's
J Jpouch8888
Jan Dollar Maybe, maybe not. They say that autoimmune disorders tend to cluster in a person, but Raynaud's is very common. I have it, but a pretty minor case. I am very sensitive to cold now, and never used to be. In the winter, I need to wear those gloves without fingertips while I am keyboarding, or my hands cramp up from the cold (yes, my house is heated!). I was also told by my rheumatologist to avoid caffeine and pseudofed, as they can trigger vasospasm. Jan [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Belly button pain
TE MarieTE Marie
TE Marie My stoma site is two inches from my BB and I have adhesion pain there so maybe my adhesions are multiplying... [ more ]
Karbear Sounds like adhesions to me. I get the same feeling around my old stoma site. [ more ]
TE Marie I had an abscess that grew between surgeries that was cut out during take down. I had a hole under my BB that was 2"L x 2"D x 1"W - my husband just had to measure it. I packed it several times a day until it healed and it left a 2nd BB under my original one. Then I had an incisional hernia surgery and they opened up the very same incision for the 3rd time. He got rid of my 2nd BB and refashioned my original one. I've had a lot of trauma all around my BB. It's not an abscess or hernia. Those... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
older j-pouches : do you still have bad days?
fqfq
clouseau I'm 20 years out and my bathroom visits are still every 1.5 hrs on average. My UC-crohns made me more suceptible to lymphoma which I was diagnosed with 7 months ago. Sometimes I have to go every 15 minutes and in the morning I can go 2.5-3 hours, when pouch is empty. I wish I could just sleep thru half or third the night and wear depends or something but I feel it moving and can't get back to sleep. Unless I have alcohol and then I do sleep better and wake up to a bit of a mess but it's... [ more ]
Spooky Even people with colons have bad days! (in fact, I know several people with colons who have far more issues with their plumbing on a regular basis than I would even on a bad day ) But to answer your question, yes. I would say that most veteran pouchers probably have bad days from time to time. For me, a bad day is usually due to butt burn/irritation or increased gas. And, as is the case with many female pouchers, I may have some issues for a day or two around the start of my period. [ more ]
Laurie49 fq -- I can tell you that after 16 years, for me it continued to get better and better. It's not the same as it was when I had a healthy colon, yet FAR better than having ulcerative colitis. Again, it's a new normal. Be patient and kind to yourself and don't listen to the people on here who have had their pouches for over 20 years and still bitch and moan, but do NOTHING to change anything. [ more ]
See all 17 replies...
J-Pouch ForumsGeneral Discussion
Seattle GI
T TMG
runner4449 I don't have a child, or have ever known a child that is in your situation, but I really like KILLCOLITIS'S recommendation for you. When my brother's brain tumor came back, my parents were in a similar situation. They had been going to Children's Hospital of Philadelphia (CHOP), but after a consult over the phone with Duke, and mailing them all of his records, they agreed to see him and try to do what CHOP wasn't willing to do; which was to treat him despite the odds. I'll certainly pray for... [ more ]
killcolitis Since this is a huge and very serious decision I would go to Boston Children's if it were my child. I say this because I've had many opinons in the case of my child (dx UC surgery soon) and they are by far the best. I also know many parents who have had great experiences there and who live in other states but who travel there for care for their children. I know it's a long way to go (I'm in Canada) but if it were me, that's where I'd be headed. Also, you can contact them and see if they... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
J pouch with Crohns in child
T TMG
fq i think the important thing to do is to get other opinions from other DOCTORS (surgeons, GIs) experienced with IBD, whether this is truly crohn's or not. without knowing, it's hard to say what is the best option. Cleveland Clinic has one of the world's best IBD and gastro surgical centers. Most people there are good, I assume. Heard great things about Dr. Shen, the GI there. There are other places in california closer to where you live, as mentioned, like UCLA, stanford, cedars sinai. not... [ more ]
TMG Thank you all for your advise. I tend to lean towards dawn58 who said, " I would do anything and everything ( as many surgeries as it takes), if there was a possibility of having a jpouch and not a permanent ileostomy". Although, my daughter is only 11 right now, her opinion is she does not want the ostomy bag. Middle school just started and on day 3 she came home mortified by the sounds from the ostomy bag. A few kdis asked what all that noise was. She said she had not eaten but day 3 of... [ more ]
RWNC I think you should schedule a consult at the Cleveland Clinic. You mentioned your daughter has a unique situation and they are the experts. I agree with Dawn that a J-pouch is preferably mentally but it may not be interest of your daughters health. J-pouches have a high failure rate in Chrohns patients so you need to go in knowing what the risks are. [ more ]
See all 12 replies...
J-Pouch ForumsHelp! Need advice now!
Bleeding During Flare
B bholli
Karbear Could it be an allergy to these foods? My nephew bleed diapers full when it was discovered he was allergic to cow's milk protein. [ more ]
TE Marie I have cuffitis and have bled nice bright red blood output that filled the entire bowl, but never have had it over and over again. After a big bowl full I have smaller amounts that come out with my BM's so I don't think you have cuffitis. I'd suggest you get an appointment with a good GI. Hopefully she/he will scope not only your pouch but up into your small intestines. My last flex scope he went up through 2 feet of my small intestines. Since you don't know the source of your bleeding I'd... [ more ]
kereen This does not sound normal at all. I'm not sure how onions or citrus would cause this but it sounds like you really need your pouch scoped during one of your episodes to find the source of the bleed. Trust me, I've been dealing with this for years. My bleeds are in my small intestine somewhere, not in my pouch. I was in the ICU from it last week and needed 5 units of blood. I wouldn't just accept this as normal, insist on a scope to find the source to get it resolved. [ more ]
See all 3 replies...
J-Pouch ForumsWomen's Health & Pregnancy
3 funded IVF attempts failed, unblocking my tubes? Desperate ;(
C Cozivfjpouch
rockandroller I think it would be misguided to assume that blocked tubes are the "only" reason you can't get pregnant. Many women on this board have at least one tube that's totally clear (I have two, matter of fact) and despite years and years of TTC and fertility treatments, can't get PG. Oftentimes the surgery we've had displaces the ovaries a little bit, or covers them with scar tissue, so even if your tubes are ok, the egg can't get into them because of scar tissue around the ovaries. We had to pay... [ more ]
See 1 reply...
J-Pouch ForumsWomen's Health & Pregnancy
Pregnancy w Stoma vs. no Stoma
FM Former Member
Gemini-K Thank you for this, its great insight and certainly gives me something to think about. [ more ]
Kate1026 I had a failed j-pouch and I've had my ostomy for over a decade now. I gave birth to my daughter in May and had basically no issues with the stoma throughout the pregnancy and delivery. I actually thought maternity clothes did a GREAT job of hiding the bag. I preferred the "full panel" style maternity pants with the wide, soft, stretchy waistband that covers most of your belly. The full panel did a great job flattening and supporting the bag without being constricting. I also wore dresses a... [ more ]
Gemini-K I am in the exact same situation that you are... I had my Step 3 Takedown Surgery in January, but severe cuffitis developed almost immediately. None of the many different medications were able to cure it, so my only option was to have another temporary ostomy created. Hopefully this diversion will help the cuffitis to cure. I had one child when I was 30, and I would like to have another child soon. Option 1 is to try to get pregnant now, with IVF and have a child (and more children) while... [ more ]
See all 4 replies...
J-Pouch ForumsK-Pouch Korner
Whod'a thunk?
skn69skn69
vanessavy It's a small world. One of my family members, very refined man fom Guatemala was having a conversation with a long time friend. These men are about 70 or so give or take. And my family member mentioned to his friend I was getting a BCIR done and my story, etc. His friend lifted up his shirt and pointed to his stoma and said " I have had the BCIR for 20 years!" I found that out right when I was having surgery. Makes me wonder who has what now when I talk to them since it's never always a... [ more ]
See 1 reply...
J-Pouch ForumsOstomy & Skin
Major accident for son's friend at sleepover
MB Mountain Baker
CJB You said it, Sharon! [ more ]
skn69 I am a big-mouthed busy-body who cannot stand to see people in pain and would not have a problem going up to the mom, inviting myself in for a tea and say, 'you need help.'...and then giving her all of the help that you can to make her and her son's life liveable from now on...I have yet to meet a mother who would refuse help for a suffering child and this kid is suffering. If he cannot live a normal life, is leaking and stinky then his life is pure hell. And he cannot be happy that way. [ more ]
fq i agree with Jill. Also, it sounds like they could use extra support and tips on how to make things more manageable....like when you mentioned the house was reeking with odor, he could use drops in his pouch. i even heard tic tacs help, which would be safe for the kid to drop in the pouch. maybe he needs a better ostomy system to help with the leakage so it is reduced, like wear a belt at night. Maybe he needs to also empty more often or set his alarm in the middle of the night so his bag... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Incontinence at night after takedown
U 1970UC
1970UC hey wisconsin....i completely understand. i think over time this issue will clear for us as we adapt and find out what our routine needs to be. be strong brother. your wife loves you regardless and trust what she tells you. i had the same feelings and my wife insisted on not worrying about it. i finally started trusting her and we have great intimacy regardless of if i am wearing my depends or not. we joke about it and that tends to help. runner....good luck with your takedown! i truly hope... [ more ]
runner4449 1970 - I'm pre-take-down right now, so I'm glad you are posting the question for people like me who are getting ready to embark on life with a j-pouch. I hope things get better for you soon. skn69 - Thanks for all of the tips you suggested. You mentioned a couple of things I either had thought of, or read about in managing night time soiling. It even helps me prepare for my take-down. Wisconsin - I hope things better soon for you, too. I know I'm struggling a little bit with the idea of... [ more ]
Guest im pre takedown and definitely notice my pouch is way more active with mucus if i eat anything with sugar. im passing way more mucus and noticeably having to hold it in more. no sugar practically no mucus so im sure that plays a part. that mucus is some slippery stuff... [ more ]
See all 7 replies...
J-Pouch ForumsK-Pouch Korner
Medina Caths in US Not inc. Edgepark
jeanniejeannie
jeannie Thank you John and Bodoni. Torbot the cost is only 8.00 and shipping is cheaper than Edgepark. Ordered 25 for cash instead of 1 per month which medicare allows. Jeanne in Placerville, CA [ more ]
jeannie Thanks for responses I will order right now. Vanessa I am frustrated because they will not take my email order because I am not buying the same things I bought from the last order. Tired of trying. Also I am a medicare paid patient and that may have something to do with it. Have to have calls made to a MD I will straighten it out later but right now I need them immediately Thanks , Jeanne [ more ]
John A I use Byram Health Care; no problems getting Medinas...(http://www.byramhealthcare.com/) [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
When will the pain and spasms stop?
Uc-DanielleUc-Danielle
Uc-Danielle Thanks for the advise. I did buy some of that cream and it does work well. Monday I'm calling clev clinic and seeing if they can give me something for the spasms/cramping. But asking them for a perscription is like pulling teeth. I think it's bc of my age I just want to feel better and I just don't get why the np doesn't get it I know my surgeon would be ok with it. It's just frustrating. [ more ]
NurseAlex Sorry you are having issues. It sometimes takes a while for our bodies time to adjust to the new anatomy...just give it a little time For the spasms there are antispasmodics you can take...you need an RX though. High fiber diet also helps me. I take 6 fibercon a day and a drug called Hyoscamine which is an antispasmodic. It dissolves under your tongue or you can get it in tablet form that you swallow. There are no side effects with it either. I have been a poucher for 8 years and over the... [ more ]
Onwisconsin For butt burn, what has worked for me is avoiding all tomato products and high acid items like citrus fruit. Also avoid items high in fat, more fat equals more bile- which is also highly acidic and causes bad burn. Go buy Calmoseptine if you do not have it, best product I have found among Vaseline, A and D, and Desitin. They sell them at Walgreens- ask them if you cannot find it. It uses menthol to soothe immediately following a BM, and uses zinc oxide for long term dermal health. Use wet... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
nutritionist needed
N NJK
vanessavy I have a hard time with some fruits and veggies digesting so I get creative. I have a vitamix blender and I put all my veggies like kale, parsley, apples, straberry, spinach and spirulina (highest form of protein the body can absorb, for examples then I take the pulp that is left and I deyhdrate it into chips or a bread. that way I get all the vitamins in 2 forms. As for fruits I take coconut water as a base and add all kinds of fruit and some greens to make smoothies. I use my dehydrator a... [ more ]
suebear It was about 6 months before I could eat fresh fruit and vegetables, comfortably. If they don't work for you, canned vegetables and fruit have most fiber cooked out of them and can be a place to start. Sue [ more ]
NJK No health issues ...maybe cuffitis that I have to stay on top of because my doc does not seem to catch it..great surgeon but not so great at the medicine part. I just want to keep myself healthy and I know that raw veggies will be limited. I guess I am trying to figure out where to go from here. I guess adding one thing at a time would be worth a try. Right now I am big on oatmeal, bagels with almond butter and proteins and carbs. Not many veggies. I guess I can try to add 1 veggie or whole... [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Cleveland Clinic Visit time?
vanessavyvanessavy
vanessavy Thanks guys. I planned on calling Monday either way to make sure they knew I had to try to be on schedule. I am planning on moving back up to the North East by December so it will be nice to establish a relationship with them for my FAP maintenance. Even if he sees nothing wrong when I go there, like everyone else! I have a plan for that. [ more ]
pauln vanessa,i hope dr shen can help you,good luck [ more ]
liz11 vanessa-he will most likely want to scope you. He doesn't trust readings and reports from other peoples scopes. Rightly so. I'm a perfect case in which my local GI should've caught my major problem on my scope but instead let me suffer for nearly 6months. Shen caught it in less than 30seconds. So like nancy ann said.. call and see if they will schedule scope in advance. If not I think a one night stay would be appropriate and just tell dr.shen thats all you are in town for. He will find a... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
2 or 3 months healing for takedown?
G Guest
Guest thank you for replying [ more ]
karensmith My surgeon bumped up my takedown due to my body's difficulty with the loop. It was of course dependent on my pouch test for leakage. My surgeon said ordinarily she held hard and fast to the three month schedule but my poor health and nutrition caused by the loop was not doing me any favors. [ more ]
Guest whats your date? ill be there oct 12th and maybe even sooner... [ more ]
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
bloody stool
I itsnotsherry
itsnotsherry I am sure I haven't eaten anything red. I see my surgeon on Monday. I will discuss with him, but now I am really nervous! [ more ]
chiromancer I had my end ileo about the same time and have had no noticeable blood since the early days. Beets and such do color it at times. The stoma bleeds a bit when cleaning and changing appliance but this is minimal. If you cant relate it to diet or trauma I would think you need to inform your surgeon. [ more ]
JenniferG First, are you sure you didn't eat / drink anything red? How much of the blood was there? I did noticed a little blood at times from my stoma but there wasn't a lot of it. [ more ]
See all 3 replies...

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.

 

CCFA

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

 

Join Now

Already a member? Sign In

Online Now

Copyright © 2019 The J-Pouch Group. All rights reserved.

Membership Required

We're sorry. You must be signed in to continue. Sign In or Register
×
Are you sure you want to remove from your Block List?
×
Loading...
×
When you block a person, they can no longer invite you to a private message or post to your profile wall. Replies and comments they make will be collapsed/hidden by default. Finally, you'll never receive email notifications about content they create or likes they designate for your content.
Note: if you proceed, you will no longer be following .
×
Link copied to your clipboard.
×