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J-Pouch ForumsHelp! Need advice now!
BM problems (perhaps due to over stretched Pouch)
S Solomin
kk Solomin, Sorry to hear you have still not had surgery. Not sure if doctor was correct but I was told that me getting sick to my stomach had to do with scar tissue and understood bowel obstruction that until 1998 corrected itself. I find that not emtpying as often makes this happen. Not sure if it will work for you but I did find that bands you put around your wrist and it is on a certain pressure point helped and also I used motionease that you put behind each year in certain area. I got the... [ more ]
Solomin Hi, I have been examined enough (recently) and have taken many tests (which seem to never end!). I do not have a stricture, nor do I have any ulcers or inflammation. I do not have pouchitis either. It also does not appear that I have a prolapse pouch as it does not appear that I have those type of symptoms. I am scheduled for a pouch redo, but the waiting list (in Toronto, 300 miles away) is currently 2 years. Thanks for the comments. It is much appreciated. Solomin [ more ]
kathy smith There have been others here who've had an overstretched pouch and sometimes what happens is that the pouch prolapses or falls over on itself. There are numerous posts here on prolapse. Do a search on prolapse and see if any of the symptoms sound like what you're going through. If it is a prolapse, the pouch can be tacked to the abdominal wall which may alleviate the problem. A pouch re-do (and maybe reduction of size?) might also help. Have you been checked for a stricture? That can also... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouch ulcers :(
N Niro
fourgrubbs I have had them too in several of my scopes. Sometimes, I find that I have pain almost similar to when I had my colon. I don't know what to think of it. You are not alone. [ more ]
Sewdaring I just had a scope of my pouch toady and there were a couple of ulcers in my pouch. The GI said that ulcers are not uncommon and he didn't seem concerned, so I'm taking that as good news. [ more ]
Niro Hello again Has anyone got any experiences to share of finding ulcers in their pouch during a scope? My gastro says that this is common in most pouches but I am really concerned Many thanks in advance for any advice [ more ]
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J-Pouch ForumsHelp! Need advice now!
who has a bidet?
C clouseau
grandmaof1 I have a bluebidet.com. It is simple and easy to install. I love it. I have had it before I was even diagnosed with precancer cells in my colon. It is not expensive. I die when I have to go to the bathroom somewhere else. It has never broke either. I sometimes wish it was heated water but instead if I am that bad after I go to the bathroom I then have to get into the tub. I love it!!!! [ more ]
CeeeeCeeee My TOTO seat is heated and I thought it was something I really didn't need because I live in southern California. Well, now I hate sitting on a non-heated toilet seat! After 10+ years, my bottom loves its "bum warmer"! [ more ]
Connie We do. Got a bidet attachment before my son's take-down 12 years ago. It wasn't one the best--the original heated seat was made of a type of plastic that kept breaking. After we replaced it 2-3 times, they finally switched to an unheated seat that does not break. Even so, the rest of the mechanics still work fine, and it has been great to have, prevented a lot of BB. It is one of several things I never would have known about without this site. [ more ]
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J-Pouch ForumsHelp! Need advice now!
bloating & some pain
FM Former Member
Former Member Thank you sooo much for your help. Appreciate it. [ more ]
beckysmom How is your husband feeling? It was good to hear he was able to go to the bathroom. He may be sore in his intestines for a few days following this, take it easy with the foods, soups, broth pudding, jello, and stay hydrated. Hope he is feeling better. [ more ]
Former Member his tomache is extended but not much pain. He did go to the bathroom all day. I have been giving him chicken soup for dinner & grape jusice to drink. I just gave himthe heating pad as you suggested. He can not walk, just to the bathroom which is close to him. He is mostly bed ridden. Thanks so much for your help & if you can think of anything else I can do It would be appreciated. [ more ]
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J-Pouch ForumsHelp! Need advice now!
So much gas, with terrible odour!
P pninas
skn69 Sounds like you are learning how your pouch functions on your own...and it is a learning experience...you will figure it out as you go...but most of us know that sugars cause gas and removing them and fruits helps...although I do not reccomend avoiding fruits in your diet unless diabetic or allergic...just moderate and cut down...have fun learning the ropes and try keeping a food journal. Sharon [ more ]
pninas Hi Sharon and Black Diamond - thanks for your replies and ideas. Must admit that I haven't tried the peppermint oil yet - am wondering if peppermint extract would do? I have it in my cupboard for baking! I'm now almost 4 months post-op and am doing pretty well. The bloating has subsided and the gas has subsided somewhat, but hasn't completely gone. I read on this forum about trying Beano and Pepto-Bismol, and have been experimenting with those. I've had success with Pepto-Bismol and have... [ more ]
skn69 How is it going??? Has there been any relief? Sharon [ more ]
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J-Pouch ForumsHelp! Need advice now!
Please Help!!! Probiotics??
K kjones02
kereen It seems like I have bad gas when I first start probiotics and then it gets a little better as my GI system gets accustomed to them. Sounds like you have a very sensitive system, maybe start with a very small dose and work your way up and see how you tolerate them? Good luck, hope you get feeling better. [ more ]
beckysmom My daughter has tried "align" probiotic and does not have the gas that she has had with vsl #3. [ more ]
kjones02 guess no-one can help me??????????? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Reversal Surgery - creams and burning
Z Zee87
mgmt10 I happen to like Calmoseptine ointment. It has menthol in it for a cooling feeling. Walgreens carries it in the isle that the Depends are in and you can also get it on Amazon.com. You can click on the Calmoseptine tab at the top of this page for info. [ more ]
Zee87 Thank you for your advice, beucfree, Lew and jeane. I'll look into those products and see what works with me! I'm just hoping that my skin will eventually get used to my frequemt bathroom visits! [ more ]
jeane Zee87, AS Lew indicated, vaseline is very soothing with no burn like some of the other creams cause. I also used cocoa butter on many occasions. [ more ]
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J-Pouch ForumsHelp! Need advice now!
need help ..advice
M meghspd
TE Marie If she is a poster on here you can private message her. Look up here profile and below it select the option to send her a private message. After you send the message it will go to her private email. Many people don't check her very often. Good Luck! [ more ]
meghspd Thanks a lot for your input toughenough I have scheduled an appointment with my c/r surgeon. Will see what he will say. Seems like Adiana is also similar procedure and is pretty new but doesnt have any metail coils so the risk of perforation is less. But I am not finding any information on which RE or OB/GYN does that procedure. I have also scheduled an appoinment with my OB/GYN to discuss mini laparotomy and risk of hurting the bowel. I am trying to contact Arabella who had done essure but... [ more ]
TE Marie If I were you I'd get an appointment with your C/R surgeon as he/she should be consulted about this surgery as well. Sometimes OBGYN's and C/R surgeons both are in the operating room for difficult female surgeries. I think you are right to ask about this now. There is a woman's topics place on here too. You might want to post there too. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouchoscopy results--cuffitis!
John95John95
kk I have found that I get a different answer for the same problem from different doctors. I didn't have pouchitis until after 10yrs. the ulcers have always been in the same area(part I was told left to connect) so mostly given suppositories to get meds. where it needs to be. Asked one doctor (surgeon) location of ulcer calling it pouchitis and he didn't tell me only answered by saying not signifcant of location. Two yrs. ago gastro told me where and called it cuffitis. I don't know but I am... [ more ]
jeane Yes... I get cuffitis at times without bleeding. I also have joint and muscle pain snd was suspicious this was from long term antibiotic usage as I never had it before jpouch surgery and have been on augmentin for over a year. My surgeons nurse refutes this. They tell me it is from the underlying pouchitis but I am skeptical. [ more ]
liz11 Yes you can have cuffitis without bleeding. I suspect canasa suppositories might be ok as they are local and shouldnt have systemic effects. But you need to ask your doc. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Does Tindamax cause nausea like Flagyl?
John95John95
liz11 jon also try to call the tindamax manufacturer directly yourself. Sometimes the drug manufacturers have patient assistance programs. At least they should be able to give you enough for a month to see if it works. [ more ]
John95 Thanks, NancyAnn, and Liz, for your replies. Cipro gives me terrible joint pains everywhere as well. You've helped me work up the courage to try Tindamax, but I just called the pharmacy and asked how much it will cost, and they told me $290 for 28 pills. I don't have prescription coverage. I'm asking my doctor if there's anything cheaper I can try. [ more ]
liz11 Tindamax was the best for me. no side effects at all - unlike cipro and flagyl! I can't eat at all on flagyl. Cipro causes me tremendous joint pains. Tindamax was so fabulous that I forgot I was even taking it. So go for it. Everybody is different so try it and see what happens. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Re j-pouch surgery
FM Former Member
Laurie49 Good for you Rocket! I had my 3 step beginning in 1996, my kids were 5 and 8, so I can't speak to the infertility question, but there are so many people on here who have had healthy children after jpouch surgery. Franny, it is imperative you find the best colorectal surgeon. Interview, interview and then interview again. Any good doctor will completely understand (and frankly, who cares if they don't). After suffering with a bad colon (does he have UC?) -- this may be a relief. I'm sorry... [ more ]
Rocket franny19, I had the three step surgery and the 3rd step surgery was completed in April, 1994. By July, my wife became pregnant and today, I have two kids. Rocket [ more ]
darealfoo Being that I'm in between surgeries for the J pouch, I'm probably not as qualified as others to answer, but here's my $0.02 anyways. Impotence/erectile dysfunction, although rare, is a possibility. I think the stats claim that this only happens in less than 1% of men. To be safe, I had my kids stored at a cryobank (but turns out I didn't need to). Although many j-pouchers suffer pouchitis at some point, very, very few suffer chronically. It's usually treated with antibiotics and for the most... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Lower back pain with lack of feel in right leg
D darealfoo
darealfoo Hey all just an update. Turns out it is a pinched lateral femoral cutaneous nerve. Long story short, heat pads and Grasile for as long as it takes. Thanks for everyone's input, it helped a lot! [ more ]
darealfoo Thanks for your input guys. It's been exactly 3 weeks since surgery and it's not going away (though I have been physically exerting myself a lot more). I'm going to see the neurologist today just to be sure it's nothing serious. Yeah, it's a massive surgery that puts tremendous stress on the body so no complaining here! It's amazing we can function so well without a 5-6 foot organ. [ more ]
Blake D. I had a lot of back pain after all 3 of my surgeries. Totally normal. I believe it was because after the surgeries, you don't stand fully erect for quite a while/ mixed with laying around a lot. I would always walk with my head and chest forward a bit because I didn't want to stand fully erect because I was afraid I would stretch out my incisions or something. Bye the way, I did this unconsciously to protect my body. It never sank in till after I had my 3rd surgery and the back pain was... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Too many nightly toilet visits, advise?
FM Former Member
TE Marie I think you are having cuffitis (UC) as the frequency returned and you are taking mesaamine suppositories. I think you have UC in your rectum. They removed my colon and left 2 cm of my rectum attached to my rectal cuff. They stapled my j-pouch to that 2cm. That we bit of rectum has the mucosa that has the ability to have UC and you have an entire rectum of it. I know how waking up all the time is and how it affects your rest. Some people have suggested that instead of eating dinner earlier... [ more ]
John95 Ingrid-Marie, What condition did you have that your doctors decided to perform an ileorectal anastomosis? Is the inflammation totally under control when you use the mesalamine suppositories? I would ask your doctor about dicyclomine; it helps to control the spasms. Also, you might ask for diphenoxylate-atropine (brand name Lomotil), which I believe is much more effective at slowing down the gut than loperamide. Your doctor will have to get it on license though, as it is not readily available... [ more ]
Former Member of course, we have different systems, but two things that worked for me and my jpouch: 1. chia seeds to concentrate my bathroom trips during the night and day. chia also worked to cut down irritation and itchiness, at least for me! 2. using lomotil up to 8 pills a day. good luck. you might also want to keep a food diary. perhaps you can see a pattern (for example, coffee makes you get up three times, green tea makes you average just once). i hate keeping a diary myself, since it is... [ more ]
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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 ]
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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 ]
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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 ]
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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 ]
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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 ]
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J-Pouch ForumsHelp! Need advice now!
Constant Nausea
S Solomin
liz11 Are you also under the care of a gastrentonologist doc. I found that a good gi doc was more helpful in my diagnosis and treatment of a problematic pouch than a not so great surgeon. Also i learned that many of the tests such as the ones you listed were useless if they werent done or read by someone who was very experienced with jpouches. [ more ]
Solomin Well, I have had so many tests that I refuse to have more or be tested for the same thing again: endoscopy rectal exam Pouch examination barium enema (pouch defacography) upper GI Ultrasound X-Ray MRI CT Scan blood tests galore All test negative in terms of ulcers, pouchitis,gallstones,kidney stones, and inflamation. They way I feel at times, it is like I have a partial obstruction. If this is the case, the backup is probably what is causing the nausea. So far, I have never vomitted from... [ more ]
CTBarrister Did you communicate to all 5 surgeons the constant nausea symptomology? Because I sort of have the same question as liz11 as to whether this nausea is necessarily due to a pouch structural issue. I have had 2 J Pouch revisions which corrected a mechanical issue with my pouch when it was not emptying correctly. Prior to these surgeries I NEVER had any nausea. My concern is that the nausea could be due to something else and is mistakenly being blamed on what you think is a mechanical issue... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Is it chrons pouchitis or bacteria overgrowth
GT Good to be healthy
Solomin One of the better antacids is pantaloc. I am not certain if one can determine with absolute certain crohns versus ulcerative colitis. As for bacteria overgrowth, I have taken cipro and Flagyl at the same time. In my case, I do not tolerate cipro well either, and can no longer take it. It is also possible that diet is causing your symptoms. Have you tried avoid carbohydrates and sugary products? What about avoiding gluten? Bread is a killer for me. gives lots of gas. Good luck! Cheers, Solomin [ more ]
Good to be healthy Thanks so much for all of your replies. They have taken biopsies of the stomach and pouch but i have not heard if they seen evidence of chrons in those biopsies. I am going to see my family doctor and see if he knows whats in the reports and if he can send me to another specialist quickly. They only scoped my stomach and not the whole upper GI to my knowledge. I have taken zantac, tums and acid reducers for the stomach pain with some success. Sometimes the pain goes away after a burp. Also... [ more ]
fq that seems strange. I would go to another doctor. He should be able to try other antibiotics first. sometimes you need a few courses to nip it in the bud (assuming it's not chronic). other antibiotics should be tried before biologics. i don't know why he is so quick to assume crohn's. i would ask another doctor. [ more ]
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J-Pouch ForumsHelp! Need advice now!
burning pain
K kk
jeane Mine is in both arms 24/7 and legs often ache also. Feels as though I am being poisoned many days to be honest and contributes to constant fatigue and exhaustion (plus lack of sleep). Has to be inflammation in other parts of my body since getting jpouch and from the pouchitis doctor claims. [ more ]
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J-Pouch ForumsHelp! Need advice now!
6 Days take down help please
A Angeltears
Angeltears Thanks guys yes I dont eat junk or sugar as hubby us diabetic, normally fruit veg and high fiber diet,but not over doing the fiber right now only been out of hospital 3 days so not going to push my luck. I feel your pain Blake the spams are shocking I'm so glad I found this site I knew nothing about how the j pouch would react my surgeon was not very helpful in that area of information Will start exercising in the next few days my incision is still quite sore so dont want to pull on the... [ more ]
dtmack No problem at all. Glad to hear you are doing better. Just watch food, drink lots of water or gatoraid, and walk. Exercise is really good for the gas as well. Best to you Derek [ more ]
Blake D. I'm 2 weeks past takedown. My biggest issue is the spasms and gas. They absolutely suck, but they have gone down quite a bit for me so I think I'm progressing. The next issue is sleep. Its hard to get. I sleep for about 2 hours at most. Third issue is butt burn. Calmoseptine is great. I think I would've scratched my ******* off by now if I didn't have that stuff. We have to stay positive and assume things will get better. I wish I could say I only go 5 times a day. I'm probably in the 9 to... [ more ]
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J-Pouch ForumsHelp! Need advice now!
emergency surgery....big decision
FM Former Member
JillM I choose an ileostomy at age 30 so I could start living my life again. That was 11 years ago and I have never regretted the choice. Two babies (now 6 1/2 and 4) later I can say that I love my ileo and the freedom it gives me - no pain, no drugs, no more surgeries, no diets. Only you will know when you are done trying to make the pouch work for you. For me it is when I felt I was living around the pouch. Please feel free to contact me if you have questions about living with a perm ileo. [ more ]
TE Marie I hope your birthday is tomorrow and you get pain relief right now. How far away would someone have to drive to get the belladonna opium suppositories? I think some people on here take it orally. Is that available until the suppositories come in. Things will get better. [ more ]
Former Member so I found out it's not a stricture...doctor Shen thinks it's dyschezia...basically a mechanical issue where the rectum muscle is constricting at the same time as the j-pouch. I was prescribed belladonna-opium suppositories to stop the spasms but no one has them in stock!!! and there is a back order so no one can order them either In the meantime I'm home bound and stuck on tpn until I can eat like a normal person. Going back to Cleveland for a manometry and defecography on my birthday :P [ more ]
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J-Pouch ForumsHelp! Need advice now!
GI Hemorrhage - Need Help
K kereen
kereen For meds I take 10mg prednisone daily, plaquenil, topamax, tramadol, hormones for ovarian failure due to lupus. I take fioriset or hydrocodone if the migraines are terrible. [ more ]
kereen Thanks Jan, I had a scan for a Meckel's diverticulum years ago due to these hemorrhages. It was negative. Apparently my small bowel had a lot of scarring, the GI felt it was from my bowel resection surgery. Is there another way to get a Crohn's diagnosis other than seeing in that 100 cm of small bowel? My old GI felt I did have Crohn's, the new guy is not so sure. I'm overwhelmed and just tired of this. I have been diagnosed with Lupus as well. I have a lot of joint pain (especially back)... [ more ]
Jan Dollar No, not sounding normal at all. Even with the hemorrhaging, you should still be able to eat once the bleeding has stopped. Of course, anxiety can play big in these things, so don't underestimate it. I would think the vascular malformation and/or ulcer would be the most likely culprit, but since they were not able to visualize the source due to not being able to see the entire small bowel, it is sort of up in the air. I imagine they have been entertaining a Crohn's diagnosis, but no hard... [ more ]
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J-Pouch ForumsHelp! Need advice now!
intestinal blockage in 85 year old mother in Walnut Creek, CA
S scallop
Jan Dollar Hope your mom is doing OK and it was not something serious. At 85, any number of things can be going haywire. Fortunately, intestinal obstruction is pretty common and most any reputable hospital is equipped to deal with it. Since she does not have a j-pouch, that is not so much of a concern. Jan [ more ]
Connie According to US News & World Reports, at #30 for gastroenterology nationally, John Muir actually outranks UCSF. I know it is a high-end facility. Here are the US News & World Report pages for both: http://health.usnews.com/best-...dical-center-6930043 http://health.usnews.com/best-...dical-center-6933853 [ more ]
BarbieG Get her walking if u can. Try giving her prune juice or orange juice. Does she drink enough water throughout the day? Masaging helps too. I have been in the hospital with many blockages only to have them move after waiting in ER for hours. If it is serious, make sure u have the most experienced doctor in the area. Good luck. [ more ]
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J-Pouch ForumsHelp! Need advice now!
BLOCKAGE!
B beckysmom
beckysmom Sorry Paulette, She is better from the blockage thank you. Hope to never return again. Thanks for asking. [ more ]
TE Marie Is she feeling better yet? Your post was over a week ago and I sure hope she didn't have to be hospitalized. [ more ]
beckysmom Thank you Lou. She doesn't take anything to slow her down, she is too afraid of slowing things down since she has had so many blockages last year when she had the stricture. Thanks for the information! take care. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Former stoma site hurts
S Subzeromambo
Subzeromambo Good advice! I did a massage but it was really the heating pad that worked wonders. I increased my distance only .5 miles today but I can really feel it. I am sooooo out of shape. The half marathon is the CCFA Team Challenge in Las Vegas Dec. 2. Tomorrow is strength and cross training, followed by a lovely day of rest. [ more ]
BarbieG Good for you! Walking is the best! It sound like u might have adhesions. Can't see them on X-rays, but they can pull like rubber bands. Only way to get rid of them is thru surgery. Then of course you end up with more. Try massaging the area and a heating pad. Give yourself a rest every other day to heal. Good luck! When & where is the marathon? [ more ]
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J-Pouch ForumsHelp! Need advice now!
5 days after takedown - 10 hours with no movement
FM Former Member
BarbieG Try cutting up food very tiny & chewing well. U don't want to get blocked. Eat chicken salad wraps, omletes, yogurt, oatmeal, potato soup, baked potatoes, pasta salad, burgers, but no fries! Greasy & sugary foods r bad. Low residue or low fiber for the first few months. I actually craved vinegar after surgery. Ate romaine lettuce chopped up tiny w dressing. Also had it on pasta. I think it has healing properties. [ more ]
beucfree I ate chicken and some potatoes among few other things that are low in fiber for first few weeks. And protein shakes. I haven’t tried vegetable yet. In my view, it’s too early for vegetables. [ more ]
Former Member Thanks for the advice beucfree and clz81. I did call the surgeon's office and spoke with his nurse today. She thinks maybe I am eating too many bowel slowing foods, plus with the combination of percocet which also slows things down, that could be why I'm not going much. But I'm not sure what to eat really...because the surgeon had said to avoid high fiber foods at first. I guess I will chill on the cheese, potatoes, rice, etc. What did everybody else eat the first few weeks after takedown? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pain feels like broken glass around pouch
S Subzeromambo
Subzeromambo I confess that I hate GIs. I was left sitting in my toxins for 16 hours after my colon perforated by three different GIs. Each one told me I was "over sensitive to pain," I was experiencing "normal morphology," and that I would be "going home in a few hours." A nurse went behind their backs to call a surgeon. In one hour I lost enough bloody liquids to fill two wine bottles. She saved my life. I know that I will have to see a gi soon but I really dread it to the point of screaming... [ more ]
vanessavy My pain is a mystery to everyone and they do think I am nuts. I just had another CT scan and 2nd pouch scope and both were fine , just have fluid build up in my pelvic area. IT is horrible pain. I went on vacation and didn't have it, came back home and it is back. I also have an allergy I developed here so wondering if it is all related in some weird way. find a new GI [ more ]
Spooky Pain feeling like broken glass is generally suggestive of a fissure(s)--though your issue seems to be in the pouch rather than during elimination. In that case, definitely contact your surgeon. That pain level is not within normal limits and should be checked out. It could be pouchitis so that is also something to rule out. [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
Sore rectum
FM Former Member
Former Member Sorry I haven't replied lately, I just started a new semester and I have been crazy busy. I haven't seen a doctor yet because as an international student I have limited amount of time I can miss class or I risk losing my status in the country. I have been trying to get an appointment after class but they close at 5PM. I have only had one really bad day, the rest moderate, but the last day or two it's been more or less normal, but I know from experience that it doesn't mean the inflammation,... [ more ]
vanessavy Cipro works ok for me but I take a stronger one that is the best called Omnicef, not sure what the generic name is. I love this antibiotic and it is a favorite at the BCIR program ostomy nurses. I don't get pouchitis, I get small intestine bacteria overgrowth that re occurs [ more ]
JJA My most common pouchitis symptoms are rectal pressure, increased urgency, and nighttime leaks/accidents. If the rectal area is bleeding, and feels more inflamed/painful vs just rectal pressure, I'd consider possible cuffitis. [ more ]
See all 10 replies...
J-Pouch ForumsHelp! Need advice now!
Hello
HAPHAP
vanessavy I would talk to your doctor and get off that antibiotic asap. Tingling is a sign of Nueropathy and that is really bad to develop. How often are you rotating your antibiotics and what one are you on now? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Contact Sports with a J-Pouch?
FM Former Member
vanessavy I rolled for the first time in BJJ and I have a BCIR with a stoma. I was good, just had soreness on my hips but I think that is from another surgery so the guard was painful but I think that will pass. Other than that I Olympic weightlift, crossfit and do Muay Thai. [ more ]
Former Member Thank you, "Worried Mom"... so glad your daughter is doing well! Gives me hope! [ more ]
CTBarrister I am not sure exactly what the concern is that underlies this thread. Football players and hockey players have had their spleens ruptured during games. I would think a ruptured spleen could happen with any contact sport and I am not sure why that would be less of a concern than an injury to a J Pouch. This is not to mention injuries to other parts of the body which could occur and necessitate surgery like ACL tears in the knees, rotator cuff tears in the shoulder, etc. Regarding girls... [ more ]
See all 12 replies...
J-Pouch ForumsHelp! Need advice now!
UC & Thyroid Disease?
B BethT
hever Cassiecass, yes there are eye problems associated with UC, about a year ago one of my eyes went quite red, and ached, I have glaucoma, compliments of the maternal side(UC compliments of the paternal side)anyway, went to my eye specialist, he asked me if I had any autoimmute diseases, I said UC, tho I have a J pouch so not really got UC anymore, he said, yes its still in your body and 'episclerosis'is caused by it, 'sclerosis'being more serious. If you try to find posts by a man called Dave... [ more ]
SteveRM I am about 8 weeks out and still having joint problems. I do hope they subside. I may try this new stuff that Fred Couples (the golfer) is using called Anabloc. It has some kind of tobacco incrediants in it (does not cause cancer). I think there is high correlation between smoking and UC. I quite smoking about 5 years ago and that is when my UC started. [ more ]
Spooky Yes, I definitely agree with Sue. At this stage post takedown, you are still recovering. You are not automatically "cured." It can take time. I definitely had very low energy after my colectomy, which lasted a number of months. I'm not sure how sick you were before your surgery, but I was quite ill and malnourished. After surgery, I experienced a number of symptoms including hair loss, at times debilitating fatigue, reduced appetite, depression/anxiety, frequently feeling cold, poor exercise... [ more ]
See all 10 replies...
J-Pouch ForumsHelp! Need advice now!
jan need to inquire about saccharomyces boulardi
R Rebe0505
Spooky With probiotics in general, I also try not to get sucked into paying for a brand. What I look for are studies which prove how much actually survives stomach acid. Most of the higher quality probiotics will have that information listed, and they're not always even the most expensive. But it's amazing how many probiotics are on the market which don't even include that information one way or another, even brand names. So those are the ones I avoid. [ more ]
Jan Dollar So true. I do know that most of the studies that are done are on specific strains, so brands can matter. But, there just is not a lot of controlled research in regard to all the probiotics out there. I wish I could say that one strain of probiotic is as good or effective as another as long as it contains the same species, but I can't, because I just don't know. Plus, when you are dealing with C. diff, you want to be sure you are taking care of business! But, even C. diff has different... [ more ]
Rebe0505 jan thanks ..am going to check out jarrows after all..see ,check ss boulgari and c-dif.. sometimes you get what you pay for and sometimes you just pay for a brand..so worth..checking ut.. thanks again rebe [ more ]
See all 7 replies...
J-Pouch ForumsHelp! Need advice now!
Hemroids?
BE Brian E.
Brian E. Thanks so much! I will hook those things up. Greatly appreciated! Take care. [ more ]
Jpouch8888 Hey Brian, If I were in your shoes, I would start using Charmin Wet Wipes instead of TP. I assume the hotel TP is not very soft. Also, take hot baths and very gently massage the area that is bothering you, if tolerable. Whenever I have Butt Burn this helps, so hopefully it could help with your hemorrhoids. Also, I would take a little bit of laxative (milk of magnesia) so things come out liquidy for easier passing. You may also want to go on clear liquids for a day so your bowel movements... [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
where to get florastor
R Rebe0505
Rebe0505 yes i do..thats what you get for writing to late at night..costco is what i am talking about for florastor two bottles for 58 99.thus one bottle 29 dollars each.. [ more ]
suebear Do you mean Costco? Sue [ more ]
Rebe0505 woops correction or clarification... the 58.99at cosco is two bottles for that amount thus each about 29 dollars each bottle i said it wrong in last e-mail..after ordering just the florastor for a year you easily make back the 55 dollar embership..besides getting other great buys at cosco.. who knew??everyone has been telling me about cosco..took me a while to get it!!! [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
9 weeks and butt burn is worse than ever!
S stpaulmom
Former Member Sorry to say that the butt burn after take down is miserable! A lot has to do with your diet, you really need to watch what you eat. I used the Nupercainal & Calmoseptine, flushable baby wipes, the softest toilet paper, and most important was getting a squirt bottle filled with water that I still use after each bm. Just make sure that you are completely dry before using any of the creams. I do remember sitting in the bath tub at night crying after eating something I didn't know would... [ more ]
NewPouchMike hey stpaulmom hang in there..... lots of us have been there !! I'll throw a couple more ideas out there for you. First, NOXEMA COLD CREAM !! It won't help prevent but after you have already been burned it will soothe/cool things. Buy a tub and put it in the shower and use it LIBERALLY.... !! right where it hurts... Also, I'd go online and buy some ILEX ..you can get it on amazon.com for less than 10 bucks. It puts a barrier of thin rubbery layer over your skin. I like it far better than... [ more ]
John95 stpaulmom, I agree with vstRN that Calmoseptine is a must. You can buy this online or in some pharmacies. It has zinc oxide which acts as a barrier; it also has menthol, which provides some cooling relief. In my own experience, it works better when used for prevention, so I'd suggest putting it on in the morning before you go to the bathroom for the first time. I've found that applying it in the midst of butt burn and itching can actually aggravate the itching for a time. I'd also suggest... [ more ]
See all 9 replies...
J-Pouch ForumsHelp! Need advice now!
5 year old with major butt burn!! Help
FM Former Member
Connie I second the suggestion of a bidet attachment. My son was 9 at the time of his colectomy. We had a bidet attachment installed shortly before his TD, He uses it religiously and has never had too much problem with BB. [ more ]
Jpouch8888 With him being 5, make sure that he is very clean after a BM. Any leftover residue can be very irritating so dont be shy in cleaning him very well with a warm wet wipe, etc a little further up than you think. Of coarse, as long as it does not bother him. [ more ]
Lynne2 I find cleansing with warm water and then drying with a blow dryer works better for my skin when it is irritated than using wipes or anything that wipes against the skin. I also make sure to apply a good layer of barrier cream after the skin is clean & dry. I haven't gotten a bidet yet, but they sound wonderful and I'm considering getting one soon. I've always used a squeeze bottle. I agree that looking at diet and bulking agents could be helpful. When I'm having issues like your son's,... [ more ]
See all 11 replies...
J-Pouch ForumsHelp! Need advice now!
What's next??
L LisaT
CTBarrister The MRI Enterography is looking for thickening of the bowel that would signify inflammation in the ileum. In effect it is a test for Crohn's because they want to be able to see if there is a pattern of inflammation in the ileum that would suggest they are dealing with Crohn's. It sounds like you are communicating with intermediaries and minions and you need to speak to the big dog (Sonoda) himself. "I did not hear back" is not an acceptable aftermath of a scope. You need to call and request... [ more ]
jeane I would call Dr. Sonoda's nurse back and ask to speak directly to him. It is not acceptable to have two procedures done when a surgeon is concerned about crohn's and not speak directly to his patient. If you have nothing wrong like crohn's or pouchitis, maybe you have IPS, but that would cause symptoms similar to pouchitis which is does not sound like you have. You may very well also have adhesions which I am not sure what the symptoms for those are. For the record, I often have gurgling in... [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
26 year old female- trying to navigate my way through all this. Any help appreciated!
F FrustratedButFighting
JillM Sent you a PM - happy to help if I can. [ more ]
vanessavy Sorry to hear! I would look up "My doctor knows me best from behind" on Facebook. The lady that runs that page, I think her name is Cherise, has an ostomy and does tons of videos and I believe she is also an ostomy nurse but not 100% on that. might be rumor I heard. I looked her up when I was going to get a jpouch with a temp ileo. June is FAP month? That is crazy anyone would even say that. Also it is a rare disease, but 30% of us get it with no family history. It comes from the father's... [ more ]
Colleen2001 So sorry to hear of your troubles. If I hadn't just had my takedown, I would FaceTime you (or Skype)and show you my routine. Do you have an end ileostomy, or a loop? I suggest you post to the ostomy and skin forum. It's a great group of people, some who opted for permanent ostomies, but others who are awaiting takedown. I also agree with liz. Contact Convatec, Hollister, etc. They will help you order what you need, and also give free samples. Both have catalog's online as well, just to give... [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
Lomotil & fluid retention
B BethT
NewPouchMike beth, I don't remember the exact timing of when my feet first started to swell but I think it was just about when I started relying heavily on lomotil ???.... anyway, my docs were not overly concerned... they just put me on hydrochlorothyazide (??)... and it pretty much immediately reduces/eliminates the swelling... I would stay on it for a month or so and then try to wean myself off the hydro.... over time, I have begun to transition to immodium from lomotil and as I use less lomotil... [ more ]
See 1 reply...
J-Pouch ForumsHelp! Need advice now!
Cramping after a Total Colectomy
FM Former Member
Rocket Niko's Mom, Glad I could help. Being a man, I loved playing baseball and football when I was growing up so if I couldn't play, I would really take that very hard. So I understand how that can be very frustrating for your son not being able to be active in sports. But the story is inspiring as you said, and there are so many other cases where athletes have come back regardless of their health situation. Rocco [ more ]
liz11 try to get him moving and active. Oftentimes it really helps in getting things moving through the system. He's been out of surgery for 3 weeks now, so he should definitely be able to walk several miles a day and do some other mildly active things. [ more ]
Former Member Thank you sooooo much for this post, Rocket! It is so inspiring and I will show it to my son. [ more ]
See all 4 replies...

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Bill Johnson founded the J-Pouch Group in 1997.

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

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