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J-Pouch ForumsGeneral Discussion
Jpouch narrowing (stricture) symptoms
T TomU
Pouchomarx I would sometimes get that but it was caused from intense gas. I didn't have the issue of emptying though [ more ]
Jan Dollar Could be. The most common type of outlet narrowing is anal stricture at the suture line. The scar can contract over time, narrowing the opening. It leads to incomplete emptying and pouchitis from fecal retention. Has it been a while since you've seen your surgeon or GI? Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Pain in low belly and back
E Ellybelly
diann744 Here's the updated link for the one posted above: http://www.spondylitis.org/Lea...pondylitis/Diagnosis [ more ]
Ellybelly Thank you Jan, if I decide to try the Moringa I will definitely let you know how or if it helps in any way. Hello Sharon, thanks so much for your reply. Sorry to hear you live with so much chronic pain as well. I agree with you about the massage, chiro, heat and keeping moving. Actually I agree with all that you say. I too take a vitamin D supplement, B12, VSL3, i try to stay away from narcotics as well. My dr. Suggested amytryptiline but I have been hesitant after reading more about the... [ more ]
skn69 Hi Elly, I am a k poucher (since 1979) who was doing pretty well for a long time... back/hip pain from scoliosis but it was always manageable with Ibprophen or some other OTC med plus chiropractic and exercise (exercise is what helps the most). 3yrs ago I went back to work full time (I have to climb 1 mile up a steep hill with a heavy backpack to get to the subway or walk a bit further up a mild hill to get to the tramway) and killed my back the first day out. That's when the pain became... [ more ]
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J-Pouch ForumsGeneral Discussion
could Advil be the culprit (bloody stool)?
J JHendrix
diann744 Here's the updated link for the one posted above: http://www.spondylitis.org/Lea...tions-Of-Spondylitis [ more ]
Jan Dollar Not ALL pain meds are potentially bad for the pouch, just NSAIDs. Jan [ more ]
Fight like a girl This happened to me. I was trying to run a small business and standing all day and at night I took pain meds. I forgot which brand, but I ended up with a bleed bad. I went to the e.r. it scared me because that never happened before. They put me on celebrex but then I had another bleed and then a blockage. No pain meds now for me. I just try and deal with the everyday fibro pain now and arthritis isn't too bad (not yet). Be careful of pain meds. Dr. Shen in Cleveland Clinic just told me I... [ more ]
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J-Pouch ForumsHelp! Need advice now!
back/tailbone pain
P pouchE
diann744 The updated link for the Spondylitis Association is http://www.spondylitis.org/Learn-About-Spondylitis [ more ]
Jan Dollar Could be directly pouchitis related, or it could be inflammatory arthritis, related to ankylosing spondylitis (AS). Enteropathic arthritis is a spondyloarthropathy related to AS. If your pain is mostly in the upper buttocks, that is sacroiliac pain, and a hallmark of spondyloarthritis. But, you need this pain to persist for 3 months or more to be considered this disease. But, it wouldn't hurt to study up on this, in case this continues. http://www.spondylitis.org/about/overview.aspx I get... [ more ]
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J-Pouch ForumsGeneral Discussion
Weight Gain
FM Former Member
aka KNKLHEAD I was as low as 165 while going through surgeries. It is interesting that one of my friends said, "I looked great!" albeit I was very skinny for no other reason than I was unhealthy at the time. Since I had a pouch redo in the fall last year I am EASILY up to 195. I have a voracious appetite and now I have to be careful and have "normal people problems" -- need to exercise and eat better! [ more ]
rachelraven I'm 5'2" and had my surgery at age 19. Went in around 105lbs at the time; left at 89lbs. During the four months with my ileostomy, I just ate whatever I wanted. After takedown, I settled at about 105-110 again. Im 45 now and have the issue of a lot of 40 year olds: I'm up to 135lbs! I hung out at about 123-125lbs for a billion years, but age is getting the best of me, despite eating better and exercising 3x/week. [ more ]
skn69 Somehow, for a lot of girls, it seems like weight gain is a no brainer once we are healthy again...it sort of follows us around and jumps us when we are not looking... But a lot of guys complain that they can't seem to get back to a healthy weight and that they look too skinny or undernourished. For the guys you need a two pronged plan of attack...firstly nutrition...High protein diet with extra protein to build muscle, healthy fats (nut butters, coconut oil, olive oil...) and good proteins... [ more ]
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J-Pouch ForumsPouchitis
NSAID & Pouchitis
M Maxx
Jan Dollar Once a week aspirin should be OK as long as you do nothave GI symptoms. While it will affect your platelets and make bleeding more brisk, it will not necessarily cause pouchitis. But, all bets are off if you begin to have symptoms. All pouches have some level of constant inflammation, so what is worth treating depends on the degree of inflammation. You were placed on a version of mesalamine, which is for IBD, so I would suspect your inflammation is not the minor, subclinical type. Still, if... [ more ]
Maxx My doctor put me on Apriso (because Flagyl makes me sick). He wants me to come back after 2 months. I hope Apriso will do the needful. Just trying to avoid another Pouchoscopy, I would keep monitoring for any bleeding. If that happens I am planning to take the Cipro. [ more ]
Scott F Mayer, there are two schools of thought on pouch inflammation with no symptoms. Some folks consider silent inflammation as a problem worth treating, and others consider it as a "normal" finding, not worth treating. It's a bit of a nuisance to treat, since the only way to tell if the treatment is working is yet another pouchoscopy. I'm not enthusiastic (for myself) about treating things unless they are causing a current (or at least well-understood) problem. What does your doctor recommend? [ more ]
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J-Pouch ForumsGeneral Discussion
warning graphic pictures. Sorry but is this a prolapse or just hemorrhoids?
pouchingtonpouchington
Jan Dollar If it was a perianal abscess, I don't think it would protrude more or less with a BM. It also would be painful all the time. Sitz baths help hemorrhoids and an abscess. Whatever you can do to reduce staining helps with hemorrhoids. Tweaking your consistency, thickening and slowing diarrhea, bit not to the point of making it difficult to empty. Jan [ more ]
SonnyJ215 It it doesn't drain on its own with the sit batz then they'll do a tint incision to drain then clean out what's causing it I watch videos on YouTube the little graphic but at least you get to see how its performed [ more ]
pouchington I'm seeing my rectal surgeon tomorrow. I hope to just show her the pictures because it's hard to get it to protrude without emptying my bowels. That would be quite awkward. If it's rhemorrhoids what's the best fix and if it's an abscess what's the best fix? [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch Revision Surgery-Losing Hope
N NancyD.
michhebe I've had my j-pouch in 1998 and was pretty good for 10 years or so then pouchitis more and more almost monthly the last year. Was going to have pouch removed but decided to try something first 6 months now) reduced sugar intake (most) not to feed the bad bacterias that in my mind at least (not scientific) might be causing the inflamation , taking B12 supplement (1200mcgr) daily even if my blood test always showed ok (read it could still be wrong and not show) vitamine D and use calmoseptine... [ more ]
tf Hi Nancy, I believe we all have been were u r at sometime or other during this journey. My surgeries for J pouch was in 2013. I felt like I went thru hell and back often. My hemoglobin is low and my dr advised b12. Some days I have zero energy. I get b12 injections which do help. Right now I'm thankful things r quite. But, just a few months ago I was having bleeding, pain & burning. I had a scope and pouchoscopy. Both drs. said no inflammation but the adhesions were very bad. I started... [ more ]
Ljz Nancy, how are you doing? I sent you a private message about docs in our area. Hoping Dr. Remzi or others at CC resolved your issue and that you are feeling stronger and perhaps gaining a little weight back. Did you have revision surgery already on your pouch? Hope you are well! laurie [ more ]
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J-Pouch ForumsHelp! Need advice now!
Tailbone Pain
W winnie
winnie Thanks Jan and Sharon! Going to doctor tomorrow. [ more ]
Jan Dollar Granted, abscess type complications are usually seen in the early months post op, but stranger things have happened. It easily could also be from adhesions that are getting more problematic over time. But, either way, it is good to rule out something more nefarious. Jan [ more ]
skn69 Ditto on what Jan said...it could be a slow, festering abscess or it could be something related to the sacroiliac...both would do well with a scan...it will allow the doctor to narrow down the list and decide what course of action to take...the sitting then more pain could be either an abscess, a cyst (ovarian but towards the back) or a sacroiliac problems...they all need different plans of attack...please do get it checked out. Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
Opererative 'tips'?
BobishBobish
Shainy my understanding of having a subtotal colectomy with rectum left would be that you still have an end ileostomy and the rectum is just left there 'disconnected' and hopefully not causing any problems I had this as phase 1, and life was good. the ileostomy was easily managed and I could eat and drink everything I wanted. one of my surgeons patients decided life was good like this and not worth the risk of going for the pouch. I went for phase two, so I got the rectum removed, j pouch created... [ more ]
Scott F Good luck, Bobish. Remember that folks visiting and posting here aren't average J-pouchers. Most J-pouchers do well and have minimal interest in a support forum. [ more ]
Bobish Cheers for the thoughts guys, much appreciated. Cheers for the advice CTBarrister.. will bear in mind. ive always been a 'minimal drugs' kinda guy anyway. Scott, that's kinda what I thought to be honest, but figured so many people on this board have been through the procedure, someone might have some thoughts. ITSaneWorld, wishing you well with your outcome... will be interested to see how things improve for you over the next few weeks/months. Thanks for your support [ more ]
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J-Pouch ForumsGeneral Discussion
Do you have a special routine for nights out when you won't be near a bathroom?
I iHateColitis
Shainy I generally eat a lot, so I tend to go a few times in the evenings even though my output is fairly thick. I only take one immodium a day, not sure if I need it to be honest but its routine and it works for me. Not having a bathroom near by would be a problem for me, I'd either have to have not eaten much at lunch, or just timed things really well with emptying before I head out. I always go out with pocket size clinell wipes so as long as there is a working toilet somewhere near I have... [ more ]
Former Member Ever since I received my pouch, I've always avoided that situation. If I was stuck in it though, it would probably mean a few hours of sleep or hopefully 5 or 6, maybe just 1 hour too. I know I'd struggle to get back to sleep after my pouch wakes me up. I never wanted to go camping post j-pouch. [ more ]
Disneynut I used to take Metamucil in the morning and one Lomotil, then if going out would do the combo I mentioned above. Now I have a bowl of oatmeal every morning plus one Lomotil and it works even better. I use the old fashioned oats, not the ones in the packets (too much sugar). If I'm staying home, I don't take any more Lomotil until bedtime (so generally 2 a day). Tomorrow I'm going on a hike so I'll take 2 before I leave. [ more ]
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J-Pouch ForumsGeneral Discussion
on going obstructions
M maddie18
maddie18 There is no way to tell unless you xray the area. My xrays can't be read anymore due to tons of adhesions and scarring. They have to give me a CT scan now. If I am in extreme pain, vomiting and not going number 2 I will go to ER for help....obstructions can be life threatening. I had an emergency op for one in '89..... I don't even remember the surgeon taking me into the operating room, that's how bad it got. He told me I was one hour away from dying and that he saved my life. This is... [ more ]
skn69 Maddie, I get both partial and total obstructions on a regular basis. The partials feel like I swallowed a watermelon and am trying to pass it through the eye of a needle...they can last for days...As long as I have some output and am able to drink then I do not go to ER. I roll around on my yoga ball, walk, stretch, do yoga, use heating pads etc... When I have a total obstruction I know if by the waves of pain (contractions?), I am unable to swallow a pill, even ice chips bring on immediate... [ more ]
Bill A About 5 months ago I had a severe pain and was sent to emergency after a xray showed the possibility of an obstruction. I was sent home and they scheduled a procedure which showed no obstruction. Since then I have had a couple similar incidents which were not severe enough to cause emergency I would have severe abdominal pain and would stop using any slowers and go liquid. Within a day or two I would be able to return to my daily routines. I would have gas and upset stomach and liquid... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Clindamycin
chili123chili123
Jan Dollar I would take it if it the best antibiotic for your issue. Deal with side effects IF they occur. I am not sure that yogurt would make much of a difference one way or another. Jan [ more ]
Scott F Plenty of folks have had C diff with a pouch. IMO that's not a great reason to choose not to take clindamycin if your throat issue requires treatment. You will be more prone to develop C diff while on clindamycin, pouch or no pouch, but the vast majority of folks in that situation won't develop C diff. [ more ]
chili123 Sounds like c diff is biggest concern with this medicine......anyone had cdiff with a pouch? [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Success with IUI post j-pouch surgery?
T tango9
ksr I have the j-pouch. had 9 IUIs with clomid and injectable hormones none worked. kept doing my own research found metformin and baby asprin. Got pregnant twice! it took me 7 years to get pregnant. [ more ]
JillM My point about the insurance is simply that the drs and insurance company felt the chances of success with IUI were so low they were willing to waive the required cycles. If you do IUI, you should be sure to have your follicle development monitored very closely by ultrasound to try and manage the possibility of a high order multpile pregnancy. This was the other reason my drs didn't want to do IUI - because it is almost impossible to manage the risks of mutiple births and they felt I should... [ more ]
chantalword I'm not sure this what you want to hear, but I have done 3 iui's which were textbook perfect according to the doctor, except that I didn't get pregnant. I've had 3 HSG's that all came back clear. We recently moved on to IVF and just had our egg retrieval a few weeks ago. We are waiting for further test results before transfer but everything is looking very promising. I feel like IUI is worth a shot because you never know if it will work. I don't feel like it was a waste of time or effort... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Pelvic Floor Dysfunction?
Y yogijano
ksr I too have had problems with compassion from many doctors. I have major problems with my pelvic floor. My current GI and OB/gyn are both understanding but these problems are beyond their education. I am going to see a urogynecologist about this. My vaginal area hurts and have not gotten anywhere in 12 years. I am now going to see if I can get help. After my j-pouch surgery 14 years ago, I had fecal incontinence for 2 years before I got any help. All the doctor's I spoke with told me to live... [ more ]
yogijano Thanks Sharon, you too! [ more ]
skn69 Yes and no, I think that in my case, things start with a moderate case of scoliosis (S curve at 18 % and a pelvic rotation) followed by a massive number of abdominal surgeries for all sorts of things...pouch related alone I must be up to around 18 or 20...plus hernias and girly stuff...so yes, inflamation around the old surgical sites, adhesions that just won't let go and goodness knows what else all contribute to the misery... I am a fighter...so I keep on fighting...I am also post... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pain and throbbing after BM
P Panthermom
CeeF Disneynut, how long since your takedown? And at what point did you learun that your pouch was enlarged from straining? You're scaring me! [ more ]
Disneynut Don't strain!!! I just got back from the Cleveland Clinic and my pouch is twice the normal size and I can't empty completely and it's from straining. I have pain just like you are describing. I have to go to a PT for the next 6 months to hopefully improve this so I don't lose my pouch (surgeon said 40% of people who have the problem I do have to get an ostomy). I have had one visit with the PT and already I'm not in pain anymore. I bought a squatty potty and have learned to empty correctly. [ more ]
Vanessa Drink a lot of water and try to get more fiber, I not a fan of Metamucil but love benefiber it works better. I also have aquaphor everywhere , bathroom, purse, etc. Helps with irritation. Try to use wipes or water and blot don't wipe it irritates it. If the stools are very frequent, urges, light green, nothing staying in and constant pain it's pouchitis and need flagyl to to treat . Best of luck [ more ]
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J-Pouch ForumsFAP Forum
how many bower movement you have ?
LM Luis Manuel
Megan O Luis, sounds like you are doing great! Especially only 3 weeks out. Things should only get better for you and you will be out and about in no time. I have had my pouch for over 30 years now and don't even worry about how many times I go [ more ]
nana1990 I go 3-4 times during the day and 1 time at Night, thanks to the MD Anderson loose stool management program, You guys should look it up online and ask your doctor!! It has worked a lot for me!! [ more ]
FAPLifer I am seven and a half years out, but have had a lot of GI issues (chronic pouchitis, and possible Chron's, been diagnosed but dr isn't 100% sold) the past two years. I go on average 5-6 times a day. Less if I am working, body just knows there is no time for a 20 min bathroom break. That's about how long it is for me. Any shorter and I am back in there within 15 mins. So I just get my phone out and hang out! Never had formed stools like my siblings who had the jpouch say they do. Mine is... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Has anyone had a Post j-pouch hysterectomy?
Jessica LJessica L
Jan Dollar Pain don't lie, eh? Good for you for persisting! Glad you are on the mend. Fingers crossed that the robotic lap helped prevent new adhesions! Jan [ more ]
UKSue I'm so glad you have found the cause of your pain and had successful surgery. Wishing you a very speedy recovery and years of good health! [ more ]
Jessica L So, after consulting the surgeon and running some more tests, it turned out that my gyn doc was wrong. Even though the radiologist kept saying I had a cyst on my left ovary, the gyn decided that that radiology was seeing my pouch and discounted the results. When the surgeon ordered tests of her own, they showed a 7 cm hemorrhagic cyst. So we decided to just remove the left ovary and both fallopian tubes. I had the surgery on Tuesday, done using robotic laprosocopy. My surgeon said that I had... [ more ]
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J-Pouch ForumsGeneral Discussion
Pouchitis Diagnosis
3Rebecca33Rebecca3
John Curtain Sorry I just realised my post is on the wrong forum. Apologies [ more ]
John Curtain In the 6 months prior to my j pouch surgery in 1990 my doctors tried drugs to alter my brain patterns as a last ditch attempt to treat UC before surgery. They didn't work and gave me the worst nightmares I can remember. After surgery I began to smoke cannabis and it has helped me enormously ever since. For you people at there that are staring surgery in the eyes and if things don't improve definitely get stoned. It will alter your brain patterns and it just may help. It definitely has helped... [ more ]
Jan Dollar SIBO is a relatively new diagnosis (but not that new). It is also associated with IBS and is why Rifaximin is now approved to treat IBS. The point is that we are more susceptible to it because we no longer have the ileocecal valve that kept bacteria from traveling "upstream." http://www.ncbi.nlm.nih.gov/pu...erm=Sibo+ileal+pouch Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Please tell me it gets better
SW Sharon W
skn69 Sharon, Is there a dollar store anywhere near you? (I was playing with the grandkids yesterday and got an idea for you) I have found that with a little bit of imagination, a few dollars and a trip to the dollar store you can make just about anything. I would see if I could find a plastic bucket (here we call them sink liners because they don't have handles, are shallower than buckets and smaller), round or square depending on your body and comfort zone, an inflatable inner tube like the kind... [ more ]
lablover Sharon, It does get better. My husband is going on 22 years with his j-pouch. So much better than having colitis and the medication that sometimes made him feel worse than the disease. [ more ]
Itsanewworld Sharon. The squirt bottles are a must for me. The consistency of stools changing that some can feel uncomfortable and itchy. Therefore the immediate squirt from the bottle is instant relief. I keep two hand in case in squirt isn't enough. I'm 3 weeks out and I'm now where I feel I have good days and some not so good. I eat stuff to try to bulk the stool as I find when it is bulky, the stool doesn't irritate much when being released. [ more ]
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J-Pouch ForumsGeneral Discussion
Looking for J-Pouch Surgeon - Metro DC Area
S Suzy-Q
Dunninator it's definitely not close to you, but Hampton, VA is where my surgeon (dr. FitzHarris) is and he is fantastic. [ more ]
rgv512 I have the best surgeon in Northern VA. His name is Dr. Donald Colvin snd he has done hundreds of j-pouch surgeries. I love him!!! Did all of my surgeries and more. Give him a call!! [ more ]
kc80 Dr Vincent Obias at George Washington is my colorectal surgeon. I had my j pouch done a long time ago at the Cleveland Clinic by Dr Fazio (very well known j pouch surgeon) and Dr Obias studied under him there. Definitely ask how many he does but I think he might be a good option... [ more ]
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J-Pouch ForumsGeneral Discussion
Mouth sores/thrush
H Halo52208
Halo52208 Thank you guys so much. You have put my mind at ease. It's slowly going away. I get my blood checked in a couple weeks. I will definitely check my iron. [ more ]
Lambiepie Halo, long term Cipro use gave me thrush. I couldn't take it anymore without the mouth infection starting and having to start a swish and swallow. As mentioned above by Strange, I also developed a sore tongue from severe iron deficiency. [ more ]
Linguist Hi HALO 52208, I have experlenced mouth ulcers several times before. In one particular case, I had to be admitted to the hospital because the ulcers were extremely painful and they started spreading all the way down to my throat. I was unable to speak, drink and eat. It took the docs several days to figure out what was going on. Finally, a ENT consultant said I was having a severe case of herpes simplex infection! For I could not swallow anyting including tiny acyclovir tablets, I was put on... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
tampons and jpouch
ksrksr
ksr Rachel, I just buy the cheap store brand ones too. In my opinion, they work just as well. Also, having to change them so often, I don't feel so bad about going through so many. [ more ]
rachelraven I use them, always have. Yeah they push out at times when I have to empty, but I really hate pads, and extra moisture with my perianal fistula/seton is worse. I just got used to cheaper cardboard ones. [ more ]
elliepouch Hey, I realize its been a while since you posted, but I never use tampons because of this and because my body often tends to push them part way out with a bm and it just seems ridiculous given the number of times a day I go. [ more ]
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J-Pouch ForumsGeneral Discussion
Gas
ItsanewworldItsanewworld
Jan Dollar Most intestinal gas is due to bacterial action on undigested carbohydrates. So, you can reduce your portions (smaller, more frequent meals), or reduce your carbs in general. It is highly individual regarding which carbs you tolerate best. White rice is pretty universally well tolerated. Bland does not really have much of an impact on gas. Spices can cause irritation and diarrhea though, but that is different. Jan [ more ]
Sharon W I have had some but not an overwhelming amount since takedown 3 weeks ago tomorrow. And my diet is anything but bland. I try to do easy stuff but I live the taste of peppers and garlic. It kills later though. [ more ]
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J-Pouch ForumsGeneral Discussion
Testosterone therapy/jpouch
P Pals
dew No. The only problem I've had was when my doc wanted me to try Axiron and my levels dropped to more than half, more like 2/3rd's. I then developed slight gyno in my right breast. Only noticeable to me. Went back to injectable and seems to have ceased. FYI subcutaneous injections will give you a better response then intramuscular. [ more ]
Pals Any problems with it [ more ]
Pals ❤️
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J-Pouch ForumsOstomy & Skin
Weight loss Help!
AllyKatAllyKat
AllyKat The funny thing after I posted this and a few months in the weight started to come back without doing anything too much different. I think the body just needs to adjust to the ostomy. I was able to reconnect and along with Entyvio I'm doing great, thanks for asking. I hope your daughter gets better ASAP (((hugs))) [ more ]
liz11 Chronmom i was in a similar situation with a diverted jpouch and high loop. My GI docs helped me. Surgeons aren't always the best to deal with things like the weight loss, absorption etc. with the high loop primary goal is to slow down transit so stuff can get absorbed. A few things I remember are: never drink when eating eat 5-6 small meals every day rather than three normal meals. Protein at every single meal. reduce sugar including sugary juices or sugary supplements like carnation, boost... [ more ]
CROHNMOM Hi Everyone, how are you all doing now with your weight since it's been almost a year since this posting? My daughter went through hell with her Jpouch - she had it for 16 years with CD so basically ran out of time. She had it diverted with loop ileostomy. During all this, she lost a lot of weight. She was 118 and now 85! She was thin to start with and now she looks awful. Surgeon told her it's a high end ileostomy so we know that she's not absorbing all the calories. But she's currently... [ more ]
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J-Pouch ForumsGeneral Discussion
Popcorn - do or dont
ItsanewworldItsanewworld
skn69 I had a huge bowl yesterday...eat a lot of it (a low calorie snack depending on what kind and how you make it)... I am careful with the unpopped kernels and chew a lot and very well but other than that (and at the times when I have obstruction I avoid it like the plague!) My rule is try a little, do not over do it and then try again later. I make my own (do not buy the expensive kind) with very little oil and use 2tbs of melted sugar (caramel) that I drizzle on top of it with some sea... [ more ]
Inbetweener The concern is blockages. I personally wouldn't go there so soon after you've had an operation done...I'm a year after my last surgery and if I eat popcorn I only eat a little and I k ow I'm going to suffer for it later on that evening/ in the middle of the night. My opinion is that it's just not worth it! Certainly not so soon anyway. But indeed everyone is different. If you do eat any, just do a little bit and chew well, and aee what happens. Drink well too. I'd suggest crackers or crisps... [ more ]
Scott F I enjoy popcorn whenever I like. Some folks have trouble with it. [ more ]
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J-Pouch ForumsGeneral Discussion
is there a 5ASA + Pain killer?
K kdmos75
Jan Dollar No, not that I know of. But there are B&O (belladonna and opium) suppositories. They work well for anorectal pain and spasms. The bad news is that they are expensive and not all insurance covers them. There also are various topical lidocaine preparations. That aside, topical hydrocortisone (suppositories or foam enemas) are also used to treat cuffitis. Some people get better and quicker results with it. Plus you can use use it in addition to mesalamine (5ASA). Jan [ more ]
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J-Pouch ForumsPouchitis
Augmentin + Cipro (+ occasional Flagyl) no longer effective
F FreeAtLast
Scott F Pepto Bismol *is* an antibiotic, with some advantages and disadvantages (just like every other med). I suggest you stay within the labeled dose. It's generally very well tolerated, but there have been occasional reports of bismuth toxicity from it. [ more ]
Inbetweener PB long term is a way better option than Abs long term...I hope the PB continues to help, good for you. Your body will be much better off the ABs...I got symptoms of thrush down my throat etc every time I finished AB's. Also, Cipro can affect your tendons so you may feel achy when you come off them. Good luck. [ more ]
FreeAtLast On a whim (and because I read about it being used by some on here), I decided to pick up some Pepto Bismol at Walmart the other day ($1.96 for 40 of the generic caplets is awesome!) and lo and behold it works! No more frequency issues, bloating, gas, urgency, etc. I've been off my antibiotics for about 4 days now, taking 2 PB caplets in the morning and 2 in the evening. My poop is black, but it doesn't bother me. Anyone else taking PB in place of ABs, and if so how much? Anyone on PB long... [ more ]
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J-Pouch ForumsGeneral Discussion
PROBIOTICS
MIKEEYMIKEEY
Jan Dollar Maybe you have pouchitis and need "real" treatment for that, not just the preventative help that probiotics provide. Probiotics can reduce pouchitis incidence but not prevent it completely. Jan [ more ]
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J-Pouch ForumsFAP Forum
Odd question/ Poll about Hair Growth and FAP
J Jennga
Chuckus Once we have our colons out, absorption is an issue. I never had an issue with hair or nail growth before surgery or after though. The absorption issue doesn't have anything to do with polyps, per say and in general, unless you have your polyp riddled colon still intact and maybe also have tons of polyps in the remainder of your GI system either....... just my $0.02 [ more ]
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J-Pouch ForumsOstomy & Skin
DESPERATE - Perianal abscess and cellulitis after j pouch diversion
C CROHNMOM
Jan Dollar This sounds just awful and I am so sorry that your daughter is having all these issues. This will not fix her issues with abscess/fistulas, but have they discussed TPN or some other type of nutrition therapy to get some weight on? It is nearly impossible to fight all these constant infections when there is such a nutritional deficit. Jan [ more ]
LORI726 Hi, i really feel for you!! I have/had 2 fistulas but have not suffered anything that horrible since being diverted. If she keeps getting abscesses, I wonder if the whole fistula tract was not addressed or if the fistula keeps breaking off into other fistulas and causing more problems. Is she on any medication? I am having a hard time gaining weight after being diverted with my j pouch still intact. I am hanging out between 105-110 pounds (normally 120 pounds) which is a 5-10 pound gain... [ more ]
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J-Pouch ForumsGeneral Discussion
Carbonated drinks
ItsanewworldItsanewworld
Jan Dollar The main thing is that there really are no never/always rules. If you crave something, it is worth trying, even if it affects your pouch function. It is important to feel normal and do normal things. Maybe you have to adapt a bit and that is OK. Unless you are craving broken glass and carpet tacks, you can indulge without suffering anything worse than gas and/or diarrhea. We all know that is not fatal! Jan [ more ]
SonnyJ215 This was a great question I'm glad you asked it I always wonder the same because I'm bored of water and sugar free sports drinks ... I had my first 3-4 beers and Diet Pepsi I don't think I had any side effects I'm 5'5 months post takedown [ more ]
lablover My husband drinks Coke that is made in Mexico (made from cane sugar). He drinks it once or twice a week. Does not give him trouble. [ more ]
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J-Pouch ForumsHelp! Need advice now!
bloated with gas
N new2thisstuff
Jan Dollar Just remember not to take any charcoal supplements with or within an hour or two of other medications or supplements. It will prevent absorption. Jan [ more ]
Centro Hi all first time on the forum for me. Like a lot of you I have had lots of trouble with gas after getting my j pouch . The thing that helps me a lot is a tiny homeopathic pill called Carbo veg .. It's a vegetable charcoal and it has been invaluable. Have a go and let me know whether you have as much success as I've had with it . [ more ]
Randi M Steve-love to know the answer to that..takedown was June 12th and I have gas all day that doesn't come alone..as soon as I get cleaned up from the last gas attack the next one comes..trying to figure out how the pouch works as most the bm's are coming w gas [ more ]
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J-Pouch ForumsHelp! Need advice now!
Lactose Intolerence
M meghspd
meghspd Thank You so much Scott . Have to keep on adapting �� [ more ]
Scott F Meg, you might be able to slow things down to a manageable level with soluble fiber (e.g. Metamucil) and/or Imodium. The cells that help digest lactose recover over a few weeks or so, but not all adults can digest lactose very well anyway. Good luck finding a diet that works for you! [ more ]
meghspd Thanks so much for replying... Sorry couldnt get back to You earlier since I am too tired due to too much watery diarrhea ... You gave some useful information . I didnt know that intestinal cells that help digest can wash away due to increased input ... That means with increased diarrhea there no chance that it can heal ... Also You mentioned that ot takes time to heal . Does it take years for them to build back on the walls ? Do they heal at all ? And is there anything that I can take or do... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Watery diarrhea and sharp abdominal pains
KB Krys Bingham
Kirsty Hey! Thank you for reply!.... I'm not a cannabis user although when I have aches and pains I may have a few puffs from a J but I'm scared its doin more harm then good... So I find this interesting. Thank you [ more ]
John Curtain I was admitted to hospital with a c diff infection 2 years ago. I was told that the bug had been identified and I should expect to recover as soon as my fluid levels were OK. After another 48 hours I was still unable to retain fluid. I told the hospital doctor that I had been using cannabis for the last 25 years and I would like to smoke. The head doctor enabled me to leave the hospital grounds for this purpose. I smoked my joint and six hours later I was released from hospital after being... [ more ]
Kirsty Hi sorry this is way back u posted this but for the past 2 days Iv been having all these symptoms!! What was the outcome from this please thanks [ more ]
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J-Pouch ForumsGeneral Discussion
Support?
C Clark_00
Scott F Clark, I'm sorry that cuffitis is giving you so much trouble. It's amazing how miserable that tiny bit of tissue can make you. The stripping proceduere sounds like a mucosectomy, which removes the lining layer of the rectal cuff. That's the part that gets inflamed in cuffitis. The additional surgical option is pouch advancement, in which the rectal cuff is removed and the pouch is hand-sewn to the anus. This can work very well as long as the surgeon is extremely well-trained and experienced... [ more ]
BillV Hi Clark, I know how discouraging it is when a surgery designed to improve your quality of life does not turn out close to what you expected. I was one of the early ones to get a j pouch after a straight connection did not work out. It’s a long story, but I hung in there since I strongly did not want an ileostomy. When problems like this happen, you want to be treated by a surgeon who has lots of experience in dealing with j pouch problems. It is my understanding that the Cleveland Clinic is... [ more ]
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J-Pouch ForumsGeneral Discussion
Effectiveness of immodium by form
I iHateColitis
ytcrockpot I had no idea that immodium came in gel caps, always took the caplets since they come in multi symptom, but usually take too long to work. Wish immodium made multi symptom liquid. ive switched to liquid keopectate, pepto liquid no longer works for me Just looking on Amazon and found immodium instant melts, 5 stars across the board, they are shipped from the UK. I just ordered a few boxes. [ more ]
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J-Pouch ForumsGeneral Discussion
Imodium shelf life?
PouchomarxPouchomarx
Spooky We actually had a thread like this a while back. Basically, expiry dates guarantee that a medication is at full potency AT LEAST until the expiry date. This does not necessarily mean that the medication is not effective past this date, but that the manufacturer is no longer guaranteeing potency. There is generally no harm in taking medications, other than there is a chance they may not provide the full effect. Indeed, provided that a medication is stored properly, it may be good even years... [ more ]
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J-Pouch ForumsGeneral Discussion
From Jpouch to perm ileostomy
NoGutNoGut
Jan Dollar Before assuming this is pouch failure, I'd consider a course of Cipro or Flagyl for pouchitis or bacterial overgrowth. While uncommon this soon, it is not unheard of. You'd know within a couple of days if it is useful. For me I had a huge improvement of symptoms within hours of my first dose of Flagyl. Bowel slowers and diet modifications did nothing when I had pouchitis symptoms. Antibiotics were like a miracle. Jan [ more ]
NoGut RE5, Are you familiar with the magazine, "The Phoenix"? You might want to google it. It's the official magazine of the United Ostomy Association of America. I believe it publishes about four additions per year. I believe the cost is around $10.00 per issue. You will find many inspirational articles in it regarding ostomates and how they are accomplishing great things. Many of the individuals these articles pertain to have accomplished wonderful challenges physically. It seems their ostomies... [ more ]
RE5 I just recently went back to the ileostomy. I'm not gonna lie my mind is still in a bad place. I'm 24, a male, used to being in very good physical shape and now I have to worry about a bag for the rest of my life (most likely.) Good news however, no more stomach pain, immense cramping, and I'm not having butt burn every other day from the pure liquid stools. I suppose we just have to make the best of our crappy situation. [ more ]
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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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