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J-Pouch ForumsGeneral Discussion
Waiting?
M Moondog
Spooky I actually thought longer wait times were better. In my case, I had an emergency colectomy and then had to wait over 2 years for my surgery, as I had been so ill. I then waited another 6 months between the 2nd and 3rd surgeries while my j-pouch healed. The waiting part is frustrating, but the healthier your body is going into surgery, the better the outcome. [ more ]
Moondog Yeah i have a end ileostomy now. and thank you all so much i feel better about it. i really need to talk to my dr. about what is next in terms of j-pouch. its been almost 2 months so a couple more months of healing wouldnt hurt. Sometimes just get frustrated and really just wish time would hurry lol. i just have to remind myself to take some deep breaths and be patient. "not an easy thing for me" [ more ]
rachelraven You have an end ileostomy now, right? Right now, I don't think there's any rush to create the J pouch for you, especially if the doctor thinks you're not ready. Some folks have an end ileostomy for a year before they get their J pouch created. Kinda hinges on the person and the situation. Though WHY your doctor thinks he wants to wait is another question... doesn't sound like they gave you any concrete reason. Once created, unless the surgeon goes one step and doesn't do a diverting... [ more ]
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J-Pouch ForumsGeneral Discussion
cuffitis statistics...
W wiggles
Jan Dollar It does not mean that the pouch itself failed because of the cuffitis. Pouch failure generally means either defunctioning the pouch with a diverting stoma or pouch removal with ileostomy. So, in regard to the cuffitis, failure means intolerable symptoms that do not repsond to treatment, or intolerable side effects of the treatment. The end result is the same of no functioning j-pouch. Jan [ more ]
Pouchomarx Why would cuffitis cause pouch failure?i have had it since takedown 5 years ago.meds help somewhat I guess [ more ]
Jan Dollar This study at Dr. Shen's pouchitis clinic indicate a little less than half are refractory to 5-ASA treatment. Of all the cuffitis patients in the study, about 16% wound up with pouch failure. http://www.ncbi.nlm.nih.gov/pubmed/23328773 Of course, statistics are fairly meaningless if you are in the small percentage of failure. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Constipation
I iHateColitis
Kline84 I have that same problem... In the morning it feels like I need to go but I can't.... Then as soon as I'm on the road to work its like I need to go now! Not sure why that is. If I eat anything to help move things along then I am up a few more times at night and the morning is still the same old thing. I found coffee in the morning helps speed things along so I can get it out of the way. I even wake up extra early just to have time to get things moving along now. [ more ]
Jan Dollar You can increase your fruits and vegetables. That should get things moving. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
ASACOL TREATMENT for Jpouch?
fourgrubbsfourgrubbs
TE Marie I was on Asacol for 14 years and had no kidney of liver function problems and some get them right away. I don't know if it would even work with our pouches. The coating is made to keep the pill from dissolving until it reaches the pH of the colon. Our pouches are so small I doubt the pill would have time to dissolve all the way or at all. I don't know if the pouch pH is the same as colon, just assuming. You can get the Mesalamine in pill form without the coating and many of us use it in... [ more ]
badguts My doc has me on CANASA suppositories and the active ingredient is the same as ASACOL, melsalamine. It does seem to work better than oral. [ more ]
n/a My original surgeon put me on Asacol about 10 years into the jpouch. He was suspecting Crohn's of the pouch and I think it was the last thing he could think of to try. It actually did help my jpouch behave better for a time, until other unfortunate issues arose (fistula, abscess...) While I don't think it's typical to use Asacol for pouch problems, if your doc is suspecting CD it might be worth a try. I had no side effects save for some hair loss. You do need to have blood work done... [ more ]
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J-Pouch ForumsGeneral Discussion
Great Apps For J Pouchers
CTBarristerCTBarrister
dgtracy suebear thats awesome! no wonder it has so many great functions catered to us lol [ more ]
suebear The creator of GI Monitor is a friend of the NorCal jpouchers and a jpoucher himself. Dewey's app rocks. Sue [ more ]
CTBarrister Here is another totally cool thing about Fooducate. You can pick a category of food and it will tell you what the best graded products are. Example: In the category of nut butters the top graded nut butter is Woodstock Farms Raw Almond Butter. They are handing out a lot of A's to a lot of products in this category, but Woodstock Farms appears to get their gold medal. I never heard of this product before but now I will look for it. [ more ]
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J-Pouch ForumsGeneral Discussion
Pouchoscopy enema prep?
J ju330
Bruce D I have had several scopes of my pouch on a two year interval at Cleveland. The staff hands you one or two pediatric Fleet enemas for you to administer just before the exam. Or, if you prefer they will administer it for you. I do it myself. The scope exam is interesting in that you are facing a large color monitor and you can see the inside of the pouch, any abnormalities, polyps and so forth. If you ask, the surgeon will generally conduct a visual tour for you pointing out the highlights. Be... [ more ]
n/a Cleveland Clinic has me do a fleet prior to the pouchoscopy, and I have a 2-1/2, 3 hr. drive to get there, so similar situation. I take one fleet along with me on the trip, and use it in the bathroom prior to my appt. I just schedule about 15 extra minutes, and it works out fine. I can continue using the bathroom, if necessary, while waiting for the scope. [ more ]
CTBarrister My prep has always been liquid diet after lunch the day before and Fleet enema the morning of. The Fleet enema in the past tended to irritate my pouch and my GI has told me if that is the case, to use a warm tap water enema. However that may be also due to the amount of inflammation I have had. The impact of the Fleet enema in my case is that it produces semi-explosive watery bowel movements for 1.5 to 2 hours after being administered. Therefore, if I have to be at the office at 7:30 a.m. I... [ more ]
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J-Pouch ForumsGeneral Discussion
Weighty loss
PH playin hooky
PolypsAplenty Four weeks after my take down I started gradually adding more high residue foods back into my diet. I was told that, as the swelling subsides, you have less risk of a blockage. I think the trick is to avoid adding a whole bunch all at once, and to add them one at a time so you can tell if you have problems with a specific food. Eating a large caesar salad for your first veggie meal might not be the best idea. I'd ask your surgical RN or WOC nurse if you have specific foods you are worried... [ more ]
playin hooky Thanks for the replies. I am 5'10" and before my last flare I was 210 then with the flare I was done to 170 and then after colectomy I left the hospital at 135. I was able to get back to 175 through surgery 2 and had decenT thick output with my ostomy but was eating hi calorie foods like cheese burgers and fies. Now I came home from reversal at 175 and am down to 169 now. I am eating rice, grilled cheese, pasta, grilled chicken, not exactly high in calories. I am still going 8-12 times a day... [ more ]
Spooky I lost a lot of weight with UC and gaining back after the surgeries was a bit of a struggle. I had and obstruction and ileus post opt and basically couldn't eat solid food for 3 weeks. I would say losing at least some weight seems to be the norm with this surgery even without complications, but regardless, your focus now should be on trying to put weight back on. At my documented lowest I was 86 pounds (I'm 5'3). Prior to getting ill, I weighed around 120. My GI wanted me to drink 6 Ensure a... [ more ]
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J-Pouch ForumsGeneral Discussion
C diff symptoms?
A akteacher
vanessavy You can't take cipro if you get c.diff. If you are on cipro it is very possible to get c.diff. Take it from me. I was on omnicef, cipro and suprax for a year and had c.diff battle due to those drugs. If I ever have to take cipro I have to take it with Flagyl together to fight having a reoccurrence of c.diff. Once you have c.diff you can always get it again easily. Flagyl did nothing for c.diff. I had to go on Vancomycen. I have bright red blood that comes out of me and severe cramping as... [ more ]
rachelraven Greenish, foul smelling, watery, frequent stools are often C diff, so it might very well be. Coupled with the long history of Cipro, it sounds suspicious. [ more ]
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J-Pouch ForumsGeneral Discussion
Is this normal?
Kline84Kline84
Kline84 Ok thanks for all the help Jan! [ more ]
Jan Dollar Epsom salts probably won't make a difference, but definitely wouldn't hurt. You never know. But, you'd have to get the bath water waaaay up there! With the NTG, be sure to use a very tiny amount, as the dose does make a difference in regard to the headache. Good luck! Jan [ more ]
Kline84 6 hrs is definitely a long haul lol my GI is 2 hrs away... I guess there are downsides to living in the least populated state! Lol I think I will give the OTC cream a shot and maybe start using the nitroglycerin a little more. I willing to put up with a headache at this point if it means healing faster. I was also wondering if adding Epsom salts to my sitz bath would help? I have heard that Epsom salt contains healing and pain relief properties. Today seems to be going ok as far as pain goes... [ more ]
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J-Pouch ForumsPouchitis
Anemia and Pouchitis
B Bogey
Bogey Thanks Heather... That all sounds pretty familiar. The fatigue isn't what I'd call "severe" yet but I do feel a bit lightheaded and my stools are definitely less solid than they have been. If this is Pouchitis I definitely want to get it nipped in the bud before it gets any worse. I was just starting to enjoy having my HG levels back to normal! [ more ]
HeatherPyle I was just diagnosed with pouchitis and had accompanying iron deficient anemia ( Iron Serum 11, Iron saturation 2%, Ferritin 4, hemoglobin 10.7). I went to the GI and he set up an endoscopy and colonscopy. The colonscopy will confirm the pouchitis. I have both pouchitis and ulcers in the pouch. I had other symptoms as well-severe fatigue, dizziness, lightheaded, headaches, nausea, watery stools, and undigested food passing through. The GI put me on Flagyl as well as 325 mg of ferrous sulfate... [ more ]
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J-Pouch ForumsPouchitis
Muscle Pain in Back of Thighs
NancoNanco
skn69 Could be potassium loss or sciatic nerve pain from sitting or laying ni a diffent position from your usual due to the surgery or the pouch or even the position that you use when sitting on the throne. For the potassium you could try pickle juice, bananas or tomatoes...for the sciatic you could put à tennis ball under your lower back André roll around on it while sitting or laying on the floor and for the throne position you need to sit with your legs and toes pointed inwards. Hope this helps... [ more ]
clz81 funny you say that, i totally do this week (and my pouchitis is flaring), however, i think it has more to do with the fact that i overdid it in my zumba class :-) [ more ]
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J-Pouch ForumsGeneral Discussion
A Question about Anemia & J-Pouch
TiredofbeingtiredTiredofbeingtired
lhh65 Same here. I went into my colectomy surgery in 2011 steeled with iron infusions and a hemoglobin of almost 12 (previously it had been about 8 or lower because of UC and C. Diff). Then, while I had loop ileo, at one point my hemoglobin was hovering around 13 -- for the first time in decades and even while I was actively bleeding with an odd complication in my pouch. But after my takedown last spring and an incisional hernia surgery in July, I started to feel I was losing ground: 11, 10,... [ more ]
mgmt10 Hi! I am in the same exact boat you are in. I could have wrote your post word for word. So far I have just been getting treated as well (iron infusions) but no answers as to why I'm always getting depleted. I'm in the dark too. I'm seeing a hematologist and in fact tomorrow I have another round of labs to do to see if I need more infusions. I have a feeling I'm going to need them because i have been really dragging lately. It's so weird. My jpouch works great and I can eat a well balanced... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Help has this happened to anyone??
G Ginabello
Ginabello Well my blood work came back all good..I have been off my heating pad since yesterday.. Hopefully I won't have anymore bleeding episodes? [ more ]
rachelraven Sounds like it. Hope your blood work is good! [ more ]
Ginabello it's definetly not through the anal canal..It is coming through the seton probably from me over using my heating pad.. He packed both ends of the abscess with kaltostat. I had some blood work done and they will call me with results.. He says not to worry it does happen and should heal itself..Very strange complication? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Feeling Discourage/RV Fistulas
toobusy2cleantoobusy2clean
n/a Toobusy, so sorry your daughter is still having problems. I have a pouch-vaginal fistula - like your daughter's (I think?), my fistula comes out just outside the vaginal opening. The fistula finally was dx'd 2-1/2 yrs ago, and I have had a seton in for a year. I was on antibiotics for approximately 2 years, I don't know if they helped or not. I quit abx's about 2 months ago and am doing just as well, if not better, while off of them. As in Rachel's case, the seton has absolutely improved... [ more ]
rachelraven Sorry to hear all of that. Yeah, I guess you can become resistant like that. Flagyl oral makes me sick, too... I list it as an allergy, but it's more a strong intolerance. There are other biologics, too... Might they try another for her, to see? Best I can say is that she might find some relief, then, with the setons, since medical management is failing her. It won't heal things, but it can calm things down. It did for me, anyway, so I'm glad they exist at least for that reason. [ more ]
toobusy2clean Rachel, Morgan has been on Remicade for the last 4ish years. We stopped it to try Humera for several months until she got her first fistula. She recently had a test come back showing Remicade was ineffective for her. She started up on 6-mp again. She has taken that before but it was when she was 6. She took Cipro until she lost 75% of her hair and was getting cystic acne all over her scalp and face. She can take Flagyl only IV form. The oral makes her throw-up. Does anyone else become... [ more ]
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J-Pouch ForumsGeneral Discussion
Humira for Crohns in J Pouch and chronic pouchitis.
SubskySubsky
Jan Dollar I took Humira for a number of years, but not for pouchitis. It was for my enteropathic arthritis. Still, my pouch and cuff improved quite a bit while on it. I am now on Simponi, mostly because it is a monthly shot, and I needed weekly injections with Humira. Plus, Humira would sting quite a bit, and Simponi does not. Simponi is not approved for Crohn's, at least not yet, but recently was approved for UC. Since I started on Simponi a few years ago, my GI has said my pouch has never looked as... [ more ]
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J-Pouch ForumsGeneral Discussion
Stricture..is the feeling you get always there or intermittent?
dgtracydgtracy
dgtracy When i went in that day and she did that there was another nurse in there who was holding me down...i was shaking all over...good night! that was horrible experience.. [ more ]
mgmt10 When I went in to be checked for a stricture my surgeon didn't even ask me if I wanted sedation. He just went right on in and dilated me and OMG did that hurt. I think they had to peel me off the ceiling. And I have a high pain tolerance. I had a few more in office dilations after that initial one and they didn't hurt half as much. So yes, definatley see if you have a choice to be put out! The difficulty emptying can definately vary with a stricture. Like Jan pointed out if your stool is... [ more ]
dgtracy I keep in touch with her boss on this thing called mychart. She came in during an exam one day and we talked became good friends (I suspect because of our red hair lol) but she emailed me on there and told me I'm okay with communicating with them through it so I will def 100% do that. Don't want a wasted trip [ more ]
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J-Pouch ForumsGeneral Discussion
why did i let them cut me?
W wiggles
rachelraven Sorry to hear of your troubles. You don't know til you try, I suppose. I've been pretty lucky. I hate to hear of others who don't fare so well. My J pouch gave me my life back. [ more ]
wiggles pain, blood, cuffitis, frequency, urgency, constipation, diarrhea, depression, anxiety and a plethora of drug trials to try and curb all of those symptoms. this to me is misery... [ more ]
Holly HM I underwent what they called situational depression when I first had my j-pouch. I have been on antidepressants for years. I take Elavil for the depression but my GI doc says it is also good for my Irritable Pouch Syndrome. Don't give up. Go tell your doctor about your depression. Antidepressants are not feel good pills, but they do keep you out of that deep dark hole. Blessings on you. [ more ]
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J-Pouch ForumsGeneral Discussion
Help with fatigue
N NewShinyCD
Jan Dollar Sounds like your fatigue improved with more activity, so I wonder if that is your key. I know that with my enteropathic arthritis, the more active I am, the more energy I have and less pain I have. You do not have to run to exercise. If your labs have checked out fine, other than the vitamin D (which is becoming an epidemic of sorts in regard to deficiencies), then I don't think you can blame it on diet, at least in regard to deficiency. I would still take the vitamin D, and have that... [ more ]
dgtracy i guess my question is if there is a better time of day to have your blood drawn...do levels become altered as quickly as soon after eating..or having an active day vs sitting on the couch till appt time..I would be interested in this as well, though my j pouch isnt that old at all i end up being tired alot right now..could be because of not sleeping like i would like though. [ more ]
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J-Pouch ForumsGeneral Discussion
Free Items
R Ro-C
Ro-C Thank you Liz! I called my doctors office this morning and they said they'd love the donation!! Great suggestion! [ more ]
Pluot Hey Ro-c, if you don't get any takers here, a lot of the time doctor's offices will take unused prescriptions as long as they're still factory sealed and give them out as samples. I boxed up all my unused rectal meds, 5ASAs, etc after my colectomy to bring to my GI... she said she'd be happy to take them but I should hold onto them in case I needed them after surgery That was a sad moment! [ more ]
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J-Pouch ForumsGeneral Discussion
Upper torsoe and rib pain
P phonix2g
Jan Dollar Sounds like costochondritis. This is inflammation of the cartilage of the ribs and is consistent with the symptoms you describe. If it was pleurisy (inflammation of the lung lining- pleura), they would have been able to figure that out by now. The good news is that it is generally benign. The bad news is that you just have to let it run its course. If it is persistent or you have other joint pains (especially sacroiliac), you may want to look into seeing a rheumatologist. This can be related... [ more ]
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J-Pouch ForumsGeneral Discussion
the brain, the gut and a new study
L lhh65
Jan Dollar Yes, you need glasses, Kathy. Very interesting read though. It seems they are finding more and more links between gut health and your overall health, especially how your gut bacteria influences your health. Jan [ more ]
kathy smith That's very interesting Laurie. (However, I may need glasses because I read that first sentence as "...can affect brain function in hummus". Who knew that hummus has a brain?) What I found interesting is that dairy can be beneficial even though humans (or hummus) didn't start out being able to tolerate dairy beyond infancy. It will be interesting to see how this pans out with a further and larger studies. Thank you for the link. kathy [ more ]
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J-Pouch ForumsGeneral Discussion
Pain and depression
J jessll
phonix2g I used to smoke weed recreationally when I was younger but when I got older it had opposite effects on me. I know my mother in law has had stomach problems for a long time and that is her medicine so she is distracted by the pain and gave her an appetite and obviously put her in a good mood. I had a friend that smoke every minute of the day and I knew when he didn't have weed because I didn't like him then ha ha I would tell him to go smoke weed so I could like him again. It is tough after... [ more ]
dgtracy When i get up to use the bathroom which is about 4-5 times a night right..(a month and a half after takedown) i tend to smoke a little bit, just enough to help put me back to sleep but i have also found it help with very loose stools as well, i think/want to say that it helps with the feeling of pressure on my behind as well but i lay down right after and soon fast asleep. It definitely helps i would say. [ more ]
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J-Pouch ForumsGeneral Discussion
FODMAP diet / bacterial overgrowth
L liz11
kathy smith I was thinking of you when a read an article about a woman who quit the 'live on light' diet because she got a message from the universe that told her to stop. Living on light. There couldn't be anything wrong with that. Or could there? kathy [ more ]
liz11 Exactly jan. It was clearly described in the links. It has nothing to do about malabsorption. Other than sibo can cause that. But the fodmap diet is about targeting specific foods that the bad bacteria thrive on in a scientifically proven, methodical manner. Simple as that, [ more ]
Jan Dollar I think the point is pretty much the same whether it is SIBO or food intolerance. I may be misunderstanding the concept, but my understanding is that the bacterial overgrowth can be dependent on specific food for the bacteria. Not all bacteria thrive on the same food, so the only way to know which food to eliminate that is specific to your specific gut flora, is an elimination diet. All bacterial overgrowth is not the same. The same could be true for food intolerance (which may actually be... [ more ]
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J-Pouch ForumsGeneral Discussion
Post colectomy thoughts
S Salmak
dgtracy would you say walking/running working out is also good for those with a j-pouch? [ more ]
mgmt10 Walking is so good or you. Do it as much as you can as long as you are feeling up to it. Congrats on getting thru the first step! [ more ]
Salmak I just went on a 30 minute walk - feeling good! My health wasn't great prior to my surgery (and I was steroid dependant), I was still working up to a week prior to the big day though. [ more ]
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J-Pouch ForumsGeneral Discussion
What works for me
G GlennF
iHateColitis Glenn or anyone else, Could you please touch a little bit more upon the fiber and intermittent fasting? What is the science behind this? [ more ]
Midnight Lady Glenn, I'd love to hear more. I have had my j pouch for a few years now and have been having trouble emptying it. I keep thinking of ways to change my diet and I have thought, as of two weeks ago.. QUIT having so much fiber! I have been buying all products with fiber, extra fiber and even stir in benefiber into my coffee. Perhaps it's all too much and I should try a few of your tips. Like the white starches and leave the fiber to some vegetables and a little fruit. Why cocoanut oil? Just... [ more ]
Dave @ Wa Good information I have been avoiding GMO foods and only eating what is organic or I know how it was made. One other area I fund huge is stress management. When work and life overwhelm me I don,t find time to exercise and the pouch goes wack. Generally resulting in increased bleed internally and anemia. This requires iron infusions and then once my energy is back I go back to exercise. I have had reduce hours at work and give up some community service to get a better life balance and make... [ more ]
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J-Pouch ForumsGeneral Discussion
Open incision after take down
S Step
KimMYatsko Finally got it to work. Thank you for posting the pics. Definitely helpful! Mine looks very similar [ more ]
Dog Plays for me with Quicktime player. If you don't have that, maybe try the VLC player (http://www.videolan.org/vlc/index.html) [ more ]
KimMYatsko I just had my take down on May 30th. I am kind of in a different situation than most of you as my colon was damaged due to severe necrotic pancreatitis. The pancreatitis was a side effect of chemo for stage iv breast cancer. I have no history of bowel disease so the surgeons were unsure of what the take down would produce afterwards. I feel almost guilty telling you all this, but I was pooping normally within two days. I had no diarrhea, burning, obstruction. It's been two weeks and my... [ more ]
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J-Pouch ForumsPouchitis
Help - your advice would be appreciated
C ChrisBastian
Scott F Bob, why do you think long-term antibiotic use would damage your immune system? I don't think that's a side effect of antibiotics. [ more ]
Robert1 Hi there,I was told by my surgeon that I had chronic pouchitis over 4 years ago, was prescribed cipro with no side effects, but after a couple of years I started to become immuned to cipro, so he started to alternate 3 weekly cycle with augamentin another antibiotic, this worked well for a while with no side effects. but I still suffer with pouchitis, seriously considering going back to a permanent ileostomy, one thing that is stopping me is that my immune system has been damaged using long... [ more ]
ChrisBastian Scott, Vanessa & Griff, thank you so much, I confess that I have been terrified that this was the end of the pouch because the flagyl wasnt working as well as it had, but you all have given me some light in the tunnel so to speak. I'm allergic to Penicillin but my investigations tell me that Cipro isnt a Penicillin base - if I can get remission I'm keen to try probiotics and I've heard that slippery elm is good. I'm no race horse but prior to this bout I was running 3.4 km per day and... [ more ]
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J-Pouch ForumsPouchitis
pouchitis or yeast?
sophies momsophies mom
rachelraven Cipro totally did that to me. Milk of magnesia (it's a non-stimulant laxative; anything else cramps me up something fierce) in a lesser than normal dose (1-2 mls at bedtime) and a morning cup of grape juice helped when I had that problem. I tend to be thicker, normally, and never needed the likes of Metamucil or Immodium or Lomotil, so I always thought that was why things got too thick for me with it, but constipation is a common side effect in general. [ more ]
CTBarrister All or most antibiotics have a constipating effect because they are killing the bacteria creating the fluid. You are on a rather high dosage of cipro and flagyl and it is to be expected. Lay off imodium until needed and drink a lot of fluids. I don't think it is a good idea to drink sugary drinks and see if you can get either natural fruit juice or the unsweetened variety. [ more ]
sophies mom So I called my dr in cleveland again. I'm now taking the flagyl (500 mg 3 times a day) and cipro (500 mg 2 times a day). Not having any pouchitis symptoms. Typical side effects of dizziness and a bit of nausea. But I guess its the cipro that has slowed my gut waaaaay down. Things are like thick sludge. Sorry to be graphic. I'm not taking any of my immodium or lomotil and I've quit the fiber supplement. I have found that a couple of prunes help a lot. Is this common? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Horrible acid cramping in stomach, help!!! - have a J-pouch, had surgery last week
kblgalkblgal
kblgal Thanks - I called my doc and they insisted I come in tomorrow and go back to clear liquids. What you say about the pain meds actually makes sense. I'm unfortunately on them for another problem, severe muscle pain near where my stoma was. And now also on them for my wound pain so I still need to be on them. I'll see what they say about the pain meds. I can try at least not taking my short-acting Oxys for now and see if that makes a difference. Thank you! [ more ]
Jan Dollar It could just be gas cramps, which can be extemely painful. Unfortunately, opiates slow the gut, making the gas distention linger even longer. This is a fairly typical complaint, and catches many by surprise when they begin to advance their diet. It may seem counter intuitive, but tapering down your oxycontin slowly, may help this to resolve faster. In the meantime, reduce your carbs, sugar in paticular, but keep your fluids up, and focus on easy to digest foods, like soft meats, cooked... [ more ]
kta I'd call my doc. [ more ]
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J-Pouch ForumsGeneral Discussion
? for Liz and Jill
L LisaT
liz11 Open. I would think all excisions would have to be open due to previous surgeries, adhesions, and blood supply to jpouch. I would be worried about the competence of a surgeon that suggested he could do it laproscopically. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
yearly gyno exam and she did an "anal" exam . Not happy!!!
P phoenix08
rachelraven I just had an in office quickie manual dilation. Owie. But luckily things are doing pretty alright... Too bad my stinking fistula hasn't matured yet (I knew it'd take longer than a month). I know my CRS knows what he's doing, but man, his exams are wicked stuff. [ more ]
Jan Dollar What I suspect is that you had a stricture developing and your GYN exam turned into a manual stricture dilation. Your symptoms sound very much like people who had forceful digital dilations without sedation. I sure can understand the pain, since there are oodles of sensory nerves in the anal canal. Doing the self dilation should help keep the stricture from reforming, so that is a good thing. Hope all your treatments help. I agree that your GYN should have stopped if she felt resistance. You... [ more ]
rachelraven Geez. What sort of exam did she do? I've had to have rectals for various reasons over the years since I got my pouch, and everyone was gentle, and would even use a smaller finger to be safer sometimes. It's not that you can NEVER have an exam (my surgeon does exams... I've had scopes... I've had dilations and EUAs), but they need to be gentle ones. [ more ]
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J-Pouch ForumsGeneral Discussion
Turmeric
ktakta
Spooky I'm not sure of the dosages, but it just so happened that when I was hospitalized with UC, the daughter of a patient in my ward was studying to be a naturopath. She recommended that I take tumeric as it's good for IBD and inflammation, as well as other digestive issues. I have been sure to include tumeric in my cooking every since; it's a pretty easy ingredient to add to rice, soups, quinoa, even salads. I don't find it has much of a taste on it's own so it doesn't really change the flavour... [ more ]
kta Thanks for the replies. [ more ]
n/a I tried it - when using it via supplements, I had GI problems (diarrhea, gas). When I eat it in foods, I do OK with it. You may need quite a bit to make a difference, but it is worth trying. [ more ]
See all 4 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Children with two IBD parents
P Pluot
Jan Dollar Actually, I was the one with UC first. Age 15, very severe pancolitis. My husband was diagnosed around age 45, left sided colitis, after we had children, and after my colectomy. I have one son with colitis (pancolitis), diagnosed at age 20. He quickly responded to IV steroids and has been in remission for about 5 years. We just know he will be able to deal with UC in stride, just as his parents do. While they are learning all the time more and more about the genetics of IBD (Crohn's has more... [ more ]
hart155 I have Crohn's so although none of my 7 siblings have been affected by it I have told them that they should not tempt fate by dating people who have inflamm. bowel disease. Having been through what we go through it is highly emotional thinking that our children are experiencing that type of pain. However, I think it is only fitting that people with IBD have kids with it because they have such a base of knowledge. I still say I would want my kid to get sick over a kid with parents with no... [ more ]
vstRN My understanding is (if I'm remembering correctly) that I think it's around a 10-15% chance if one parent is affected and around 35% for both parents. Don't quote me though since those are at the top of my head. If my opinion matters at all though, marriage is tough. Marry who you love. And I'm sure being with someone who gets a lot of this is a huge support. While my husband is loving and great and what not, he has still never really gotten it... and it can be tough a lot of the time. [ more ]
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J-Pouch ForumsGeneral Discussion
Takedown and fissures
V vstRN
vstRN Thank you Sharon. I really appreciate the advice. I think one of my problems (maybe contributing to the fissure?) is a really tight and spasming sphincter. I think I jinxed myself thinking that the 2nd takedown would be easy... boy was I wrong. [ more ]
skn69 Local anesthetic cream (there are some long lasting ones that give you up to an hour of relief)...there are also aloe vera gels with local anesthesia which are great on delicate parts (hubby's hemoroids!) and fissures...I had them on my stoma (k pouch) and they were living hell, I cried every time that I had to put the tube in and ripped them open again and again...soaking and keeping the zone clean and dry helps plus I am sure that there are tons of topical ointments out there... Good luck ... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Impingement and anti-inflammatories
rachelravenrachelraven
Jan Dollar I'm sure you know that NSAIDs are a mixed bag (sort of like prednisone). Lots of good effects, some not so great, and some really terrible. I was one who tolerated them fine for years, and years, and years. High doses of ibuprofen even (which I guess is one of the worst for gut inflammation). I was on 800mg three times a day when I finally developed liver inflammation (turned out to be fatty liver disease), and the ibuprofen had to go. I also developed pouchitis. The good news is that these... [ more ]
AyrishGrl I have recently started using a pain lotion prescribed by my rheumy doc. It has to be compounded, but it does help. It has a mixture of 4 different drugs I think - there is an anti inflammatory, numbing agent, muscle relaxer and something else. It helps my bursitis and fibro pain. I too have to be careful taking NSAIDS. [ more ]
rachelraven Thanks. I'm icing when I can, I'm being very careful with the amount of Motrin... And I looked up some PT exercises. I have a friend who's a PT who gave me a few tips, too. If it's no better this week, I'm going to see my PCP about a PT script. Always something! I'm *ok* by, like, now (8pm), then I go to sleep, and it starts over. [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
VSL#3
P phonix2g
LaneyLove I was given a five dollar off coupon at my doctors. They had a stack of them, so they are out there. It is still expensive, but any little bit helps. Also, try calling different pharmacies in your area and see if they will "beat" the price of the other competing pharmacy. I notice a change in how I feel after not taking my VSL for a day, so, for me it's worth the $. I also only take 2 a day so that helps with the cost [ more ]
dgtracy I may consider asking my surgeon for a presciption..i have two insurances but my pharmacy will only bill one, i would be interested in seeing what i would have to pay..its federal insurance so im hoping very little..80.00 is a nice chunk out of my monthly expense. [ more ]
RLC Thank you for the information! Roberta [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Adhesions - who has had painful ones too & have any of you been able to prevent them?
kblgalkblgal
grandmaof1 Adhesion are very very painful. I just got out of the hospital from a one night stay after I went in by ER. I had such pain they thought I was blocked. Nope I wasn't. They were not sure so they sent me home. After posting it on here I found out how painful adhesion's can be. I think that was what my pain was. So I feel your pain. Each day is getting better but I am waiting for the next issue with them. I pray not though. I also do still rest. I am exhausted. I wish I felt as great as others. [ more ]
skn69 I didn't mean no yoga ever (goodness, I love exercise and have been doing it my whole life...) or to give up on exercise just to take it really very slowly in the begining...just because things look healed on the outside doesn't mean that they are done on the inside...it takes time for your body to heal and adapt to its new anatomy and functions...unfortunately I was always in a hurry to get back to 'normal' and overdid it more often than my body cares to remember...and then paid the price... [ more ]
kblgal Thank you so much, guys! Don't worry, I have been walking around plenty. I'm just glad to have the confirmation that walking is good, but the certain movements above are BAD. How long did it take everyone to get back to lifting heavy objects normally? I just want to know when I can safely lift without having to think about it. Thanks, I've been wanting to get a massage - never knew it would help with adhesions but that sounds great! [ more ]
See all 9 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Pregnancy Fears
G GingerSnap
skn69 Ginger, I had my k pouch done at 18, back in '79, when no one talked about fertility or other issues other than survival and success/failure rates...so babies were not their priority. I married the following year, tried naturally for 1yr and then started the horrors of infertility docs in the '80's...IVF docs wouldn't touch me back then, the HSG showed a mess inside of me and generally nobody gave me any hope. We opted for adoption, got pregnant and miscarried...happened a couple of times... [ more ]
clz81 I'm so sorry you were painted such a horrible picture. You don't seem to be getting the most accurate information. The truth of the matter is pregnancy with a j-pouch is not all that different than with a colon. As mentioned earlier, you MAY have some issues conceiving (blocked tubes, scar tissue), but once you get pregnant, there shouldn't be a whole lot more to worry about than the normal pregnancy concerns. I've never heard about issues of damaging or rupturing the j-pouch. I didn't have... [ more ]
JillM Well, I think the dr could have been a bit more thoughtful in how he approached telling you all this... Here is the thing...There are risks. But there are in a "normal" pregnancy too. Being a parent requires a huge leap of faith, j-pouch or not. THe real risk of vaginal delivery has nothing to do with damage to the pouch - sure its possible but highly unlikely. The risk of vaginal delivery has to do with longer term issues and the potential for weakening the sphincter muscles. As for... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Post Op Pain
O ObiSean
mgmt10 I had some pain 4 weeks post op but it wasn't anything severe or that I couldn't handle. Severe pain is never normal and should be addressed right away. If you are really uncomfortable I would get it checkout out. [ more ]
See 1 reply...

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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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