J-Pouch ForumsHelp! Need advice now!
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J-Pouch ForumsHelp! Need advice now!
I went to the ER yesterday evening and was put back on cipro and flagyl for the time being. I also am getting a stool sample checked for C. Diff just in case. I have an appointment with my surgeon on the 18th and hopefully we can schedule at least a scope. I agree with both of you that I need some diagnosing. Would it be worthwhile if I'm scoped to also get a CAT scan? I appreciate your perspectives! I'm new to this forum and I really like the people here. [ more ]
Anal fissures occur inside the anal canal, but generally before where the pouch would connect with the anus. The anal canal is where all the sensory nerves are located, hence all the pain you feel. Anal fissures can be easily missed by the examining doctor. The main thing is to be more certain of what you are treating. Just becuse symptoms improve with antibiotics it does not mean it is pouchitis. When symptoms quickly return after a course of antibiotics, you schould be scoped to determine... [ more ]
Peter- It's obviously better to not need meds. OTOH, pay careful attention to the following choice (which you might or might not face): 1) "med-free way to exist with this pouch" 2) use of medications that enable *thriving* with this pouch I chose #2, and don't think it's a close call. I scuba dive, practice and teach martial arts, and go to the gym a few times per week. I don't fear long flights or drives or subway trips, and I don't have to leave meetings for a bio-break. For me, at least,... [ more ]
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J-Pouch ForumsHelp! Need advice now!
800mg is a reasonable daily dose. I usually take it for 10 days and extend it only if needed. The longer you are on it, the more likely you are to have side effects. If you start having tingling in your extremities, then definitely reduce the dose, or stop it altogether. Jan [ more ]
Today is day 5 of flagyl. It's the 2nd day of the 800mg dose. Do u think I should keep with that and maybe reduce after day 7. I don't know what the normal regime is. So far other than feeling fatigue and the metallic taste haven't had other symptoms. I usually get a lot of nausea on a higher dose to the point that I feel like vomiting [ more ]
You could try 200 three or four times a day. The smaller dose should cause less side effects. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
You can have IPS, irritable pouch syndrome which is like IBS. You can do an Internet search on it or look under Pouchitis discussion topic. I started a discussion there about IPS vs Pouchitis a while back and have links to 3 places that discuss it throughout the comments. It could be pouchitis again like you said. It sounds painful at 5 per hour [ more ]
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J-Pouch ForumsHelp! Need advice now!
I had oral fleet once - its a bit like picolax - but you had to drink a lot more and I couldn't cope with the volume (I threw it up!!) I personally think it would be dangerous in a possible blockage situation [ more ]
It's hard to tell from your description, but if he sent you home I'm guessing you're not in dire straits. Are you passing any stool? Able to hold fluids down? I don't know about the oral Fleet - whether it's a good idea or not. Fleet does make oral laxatives, but I don't know what product you were given. Did you get any effect from the antibiotics? They can thicken the stool, even to the point of constipation in some cases. Certainly talking to someone who can spell "J-pouch" would be more... [ more ]
First of all, could you explain what an oral Fleet enema is? I never heard of such a thing and the very definition of an enema is a rectal intillation. If you are not completely blocked, mild laxatives like Miralax are OK, but not harsh prugatives. Otherwise, you can focus on pushing warm, clear fluids, like tea and broth. The other question I have is when was the last time you had a rectal exam and or pouch scope with your GI doc or surgeon. I would suspect an anal stricture or a pouch... [ more ]
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J-Pouch ForumsHelp! Need advice now!
ljk, Sorry I wasn't too clear. I took 3 capsules 3 different times a day with meals or light meals and like Scott says you need to find out what works for you. Metamucil is nothing like Imodium as it is fiber that acts to make your stool less watery and it does not slow your system down like Imodium or Lomitol does. It doesn't cause hard stools just mushy, I hope this makes sense. If you eat an entire wafer I believe that is one serving or the equivalent of 5 capsules. So as Scott says you... [ more ]
The idea is for the psyllium (Metamucil) to mix with food, so just before or after a meal should do the trick (I take it before). One capsule is a very small dose, so it might well be insufficient. You could try more, up to a full dose (5 capsules) and see what works best for you. The effect is physical, not pharmaceutical, so you'll know how a dose worked pretty soon after taking it - certainly the same day. I get better results with the powder than the capsules, since the capsules didn't... [ more ]
Anyone else tried doing the pelvic floor therapy? I just started but I am already seeing results from it!! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Rhema, I've had my pouch about 20 years, going to the bathroom every 1.5 hrs on the average but got used it it. I was diagnosed with lymphoma 2 yrs ago and the systems then got much worse, in the bathroom about 30 times a day, severe pouchitis. I am on cipro an tintazole now and am back to every 2 hrs which for me is good, I've adapted. I go to Dr Shen at CC every several months for ballon dilitations for my strictures. My rectal vaginal fistula is now leaking to vagina a bit for the first... [ more ]
Rhema, My definition of when it is enough? I will know it when it happens. I have a very high pain tollerance and have a reasonably good constitution but there are times when the pain and surgeries start to add up...no one can tell me when it is time, I have to be both physically and mentally prepared to accept the next step, whatever that step may be. I wish you peace of mind and an easy decision. Sharon [ more ]
I wonder about the same thing, my take down was 3 years ago on 12/29. I figure my adhesion pain will potentially get worse if I have more surgery as I will still be using most of my small intestines, as I am now, because I'll have another operation to cause more adhesions. I have IPS, have you considered or has your GI considered if you have IPS vs or along with pouchitis? I started a thread a while ago about this and have 3 links in several posts in there regarding IPS. I had IBS along with... [ more ]
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J-Pouch ForumsHelp! Need advice now!
I am not sure that a woman over 40 in my family still has her galbladder...we all got them removed sooner or later...that is just our heredity... Mine bugged me from the age of 14 on...used to make my mom massage the spot just under my right scapula to the right of my spine with a decorative glass egg...the only thing that seemed to be the right shape and size to get to the pain. I had episodes where I was so sick, nauseaous, and in so much pain that I thought that I was having a heart... [ more ]
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J-Pouch ForumsHelp! Need advice now!
I just got a script for percoset. I have not taken it yet as the rectiv seems to really be helping. I cannot take any more recital meds at the moment as I really think they were making things worse. Glad to hear you have found something that is helping you also. Ill post after the MRI. I'm on 1000 mg of cipro and plan on staying on it until after the holidays. I just wish I could get off this medicine as I worry about long term side effects and it loosing its effectiveness. [ more ]
Jeanne, I'm still taking Norco 10/325 for pain daily up to 4 times daily which slows my system down as well as helps with abdominal pain. Have you ever taken any pain medication for cramping? My Internist prescribes it as she sees me at least 4 times a year and my GI is fully aware that I am taking it. I usually end up taking 3 per day but on a good day take 2 on bad days take 4 and wish I could take more. I also take dicyclomine during bad cuffitis flares, where I'm using anucort... [ more ]
Thanks Te Marie I have tried both without any success. I will try again. It seems without the cipro I tend to also get that nasty cramping and pain and increased movements also from the chronic pouchitis. At this time after being on them almost consistently for three years my Gi snd I discussed staying on and getting too least dose posdible which hopefully will be 500 mg a day of cipro with pulsing days. At least that awful throbbing Amal pain is better. Thank you for the responses. [ more ]
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J-Pouch ForumsHelp! Need advice now!
I hope that is the case. The reason why insurance companies had to cancel individual policies is because those policies didn't meet the minimum requirements required by the health care act. That only happened in states that didn't have the minimum standards so the coverage will hopefully be better and less expensive. It still is the doctor's fault for using the excuse that he needs to loose weight to have the take down surgery. It looks like she just doesn't feel competent to do the surgery... [ more ]
[quote]Cause from what I've been told premiums are a lot higher then what I'm paying now and deductibles are outrageous.[/quote} Please dont listen to what you've been told, check it out yourself or have someone help you. The amount of disinformation floating around about the ACA/ObamaCare is sickening. There is a lot of variability from state to state. Generally the states that have their own exchanges have more competition and better choices and rates. Regardless, If your income is below a... [ more ]
Yes I am self employed and my insurance did say I'm only covered in my state which us a bunch of bs but oh well the end of the month I'm done with them. So yes I'm sure being self employed makes this all harder because of my taxes and etc. Thats why we bust our bums in the spring to fall time to get money built up to get us through winter. But I contacted Medicaid again and they highly suggest I file for disability so I'm gonna look into my next options until I hear back from the healthcare... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Thank you all that have replied, this has truly helped me see that I'm not alone in this and that others have also gone through what I've gone. And that hopefully things will get better I appreciate it thanks again. [ more ]
Sometimes I wish I'd waited longer between my first surgery and my take down which was 8 weeks later. I agree with everyone above about trying to find a better system for your ileostomy. Frustration is a good word to describe what you are going through and this is also serious. Your boss probably doesn't understand that you've had 5-6 feet, your entire colon/appendix/rectum, of your intestines removed plus have had problems with your small intestines as well. This is no little gallbladder... [ more ]
ramon, I hear you. Sometimes I think I am the complication queen, a title I am not proud of. Try your best to think day by day. Also sounds like you MUST see an ostomy nurse as soon as possible. He/she should be working with you to get appliances/gear that fit, don't leak, are comfortable, and don't cause skin irritation. Try to focus on getting some assistance in that area. As I believe if you can get that problem solved, it may help boost your spirits at least a little bit. Hang in there... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Top post TE Marie, Really appreciate your reply.... [ more ]
I haven't heard of them becoming ineffective. I have chronic cuffitis and lately I can't miss a day without it recurring immediately. I have days where I'm visiting family or whatever and I miss using a mesalamine suppository and I can get away with it but most of the time I can't. My GI says some people get to a maintenance dosage of a few times a week but I haven't been able to and have been trying for over a year. You have described cuffitis, which is UC of the j-pouch cuff, perfectly. If... [ more ]
Ive been using them on and off for a couple of years but what if they become ineffective what would be my options? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Very recently I went through a bout of having to come home by noon and sleep for about 1 or 2 hours. It was unusual for me so I told my internist who ran blood tests and learned I was very anemic. I thought I was dehydrated because early on in my experience with an ileostomy, I felt the same way and being infused with whatever they give you for that purpose (IV) worked wonders. Not this time! Same symptoms, different diagnosis. Glad I checked it out. [ more ]
Connie, good to "see" you and I am glad to hear that Thomas is back to doing a fairly normal routine. It would be nice for you guys to have some boredom to complain about instead of the constant medical issues. Jan [ more ]
Seriously?, if you're still here: I would be that member with the grown son (age 22). Don't give up on this message board because of one bad exchange. There are a lot of helpful people here. With regard to school, she probably is right about the drug situation--it's rampant. I also understand and have experienced the various other school issues. Due to life-long chronic fatigue ( not chronic fatigue syndrome), frequent illness and the school district's inability/refusal to adhere to his 504... [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsHelp! Need advice now!
I posted 3 links in total throughout the thread to various articles, studies and presentations of Dr. Shen's about IPS, some including other j-pouch problems. There is other Irritable Pouch Syndrome information available on-line as well. [ more ]
Sudie, Thanks for the tip. I am having the Hydrogen Breathizer Test next Wed. I will have to mention this to the doctor. Rocket [ more ]
Rocket. Just a few days ago there was a post called FYI . Ips v pouchitus I found it gave me some info that I was not aware of and answered some of mine I think vanassy gave a link to dr Bo Shen interesting. Irritable pouch syndrome might help [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hi pamela, where did you have your jpouch surgery I see you live in London ,we live in west Yorkshire ,but originally from middx. My husband has had his jpouch for aprox 15years and it has never worked properly ,it is disconnected at the moment and he has an end ileostomy ,but the pouch still causes him many problems so heis waiting to go in and have it removed in Leeds. Hope you get sorted too. [ more ]
I had my Jpouch removed in March of this year. I was in the hospital maybe 5 days, no worse abdominal pain than any of the prior surgeries. My rear end was a little tender sitting, I was just careful on how I sat down. My doctor told me to take off 6 weeks for work and I was like, Yeah right! I was back to work after 2 weeks but my job doesn't require heavy lifting, I do a lot of sitting and thats all I was doing at home so I figured why not work? I feel fantastic now and don't look back, I... [ more ]
Hello my name is Pamela I'm from London I've had my J pouch for 15 months now, and after several complications my surgeon has decided to remove my pouch,close my bottom and give me a permanent stoma, I'm a little worried about the surgery I was in a lot of pain after my sub total colectomy and when they went to reverse it with the pouch, the first pouch died and I could not have a two stage procedure and it was done in one I was in intensive care for a while and the recovery was slow, can... [ more ]
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J-Pouch ForumsHelp! Need advice now!
I've read a few people saying it smells really bad, weirdly mine didn't smell at all. I used to pass it quite frequently though, maybe 2 or 3 times a day. Always quite a bit and always quite watery, so maybe it wasn't hanging around enough to go bad? [ more ]
As stated - perfectly normal. Some people have more output than others. And yes - it stinks. Steve [ more ]
Had the same thing. Not to worry. For me, I used an old cortifoam syringe to help evacuate it more thoroughly, BUT I had a colectomy first then jpouch six months later, so I had an unmodified rectum and 10 inches of colon still intact. For you, using a hard plastic syringe could be very dangerous. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Mine was only 3 weeks ago but I'm not really concerning myself with the colour of my stool, it's just the same as when I had a stoma, all different colours basically! Yellow, brown, sometimes a bit green (usually in the morning when I haven't eaten for a while), grey if I've eaten a lot of white foods like fish. I don't think it really matters. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Could be a virus. But this still could be an obstruction. Remember, you still have the rest of your small bowel and pouch beyond your ileostomy, and you can have a bowel twist in that area. So monitor this carefully and be sure to call your surgeon or go to the ER if this pain becomes sustained. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
This may be a silly question but have you had any dilations for your strictures and narrowing? I have had about five since my takedown two years ago and the last was the most successful. It was just a manual finger dilationu under anesthesia but it has significantly reduced my struggle with emptying my pouch. I did bleed a it after the stretching but it has been a Godsend for me. Keeping my inflammation at bay at my anastomosis connection has also helped with this issue. [ more ]
Regarding the subject of pelvic floor dysfunction and biofeedback vs manomotry, I had Dr. Schroeder and Dr. Shen retrain my muscles similar to kegal excersises. I've had my j-pouch for over 21 years and I did a few biofeedback sessions which I believe helped but eventually I still wound up having several strictures and rectal cuff tightening thus leading to enlarged pouch, weakened (as the Dr.''s in Houston) put it flabby pouch. Basically biofeedback may work for some people but it was not... [ more ]
I would not recommend Botox injections at the same time as biofeedback. The reason is that you cannot tell which treatment is effective. Botox is specifically used to treat fissures, so unless that is a current issue, I don't see the point. Basically, it is a chemical sphincterotomy and the value is that it wears off after three months, so it is not a permanent thing (a good thing if there is the side effect of incontinence). Anal manometry tests sphincter tone and function. Biofeedback... [ more ]
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J-Pouch ForumsHelp! Need advice now!
I so agree with the tylenol! why do they have to put it in everything? If I take cold medicine, and a tylenol #3, I am close to the limit for the day....dumb [ more ]
I see---thanks for clarifying....I have a lot of blood in stool, so I am going to make another 5 hr trek to my surgeon....wish me luck [ more ]
Correct. It was just be careful with Tylenol doses, to avoid liver damage. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
I'm so sorry to hear of the complications you are having due to infection. I'm not sure I understood right but I read that you had your pouch removed? Later had the lotus flap repair? Did they remove your pouch due to the fistulas causing to many problems? I'm so sorry my heart aches for you. It's so awful this illness is so complexed it touches so many aspects and so difficult for people around us to understand. I am still waiting to see what they will do for me because after my MRI that... [ more ]
Hi I am now 12 days post op from perineal/ vaginal fistula repair surgery, my surgeon decided to do a procedure called the 'lotus petal flap' , basically they took some muscle from the inside of my thigh and slid it across to close the deficit, unfortunately post op I got an infection and had to go on iv antibiotics, had a drain for 9 days , I was finally discharged from hospital on Saturday, although I have to continue to take another 5 days of antibiotics. I have a nurse come in daily to... [ more ]
I had the rectus abdominal surgery in December, 2009. It was a major surgery and I seemed to be doing pretty well, but 5 weeks after the surgery I developed an infection which not only destroyed the muscle, I could have died. Because of the infection, I will most likely need IVF to get pregnant. I think the muscle is way too big to put between someones vagina and jpouch. [ more ]
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J-Pouch ForumsHelp! Need advice now!
In discussing possible modification (lowering) in my case, my surgeon did say that mucous leakage or loss of rectal sphincter seal could be an issue - either temporary or permanent. . [ more ]
See if you can get your surgical notes as it will say in there if they used a stapler. It might be easier to get those that to talk directly to your surgeon. You still need to know if this is a temporary problem. Can you talk to your surgeon's nurse or email them your questions? [ more ]
What Type of surgery did you have? If you had revisional surgery it is possible your pouch is hand sewn and sometimes leakage can be an issue. I have read this goes away with time. If you are not leaking are you just feeling like you need to empty your pouch? If stool is pooling I can understand why you would have some inflammation but if your pouch was advanced and hand sewn I am confused as to how you can still have inflammation. [ more ]
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J-Pouch ForumsHelp! Need advice now!
I just filled a prescription for cortifoam at cvs. Sit down, $288 dollars one tube! My insurance deductible has not kicked in yet. [ more ]
Cortifoam (or any of the foam products) tend to be easier to retain). [ more ]
Van, When I still had my colon and UC flares almost constantly, I was prescribed medicinal enemas and instructed to hold it overnight. Cant remember what it was. Possibly cortenema. Anyway, I had the same problem as you. If I could hold anything overnight, I would not have needed the cortenema in the first place! Kind of like a catch-22. I was lucky to be able to hold it for a few minutes, let alone hours. Opiate pain killers helped me hold it longer, but the doctor was concerned that the... [ more ]
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J-Pouch ForumsHelp! Need advice now!
I don't know what's causing it but have a few other suggestions for dealing with it. Place a cotton or part of a cotton ball there after each BM. Use female mini pads, the thinner the better. The gauze and TP suggestions are good too, whatever is most comfortable for you. I don't think your weight has anything to do with it either and it sounds like something you should ask your doctor about [ more ]
It is mucus. I have it coming out of my stoma all the time. We are filled with mucus so it will come out. For me, it depends on where I am at. In Florida I have no mucus coming out of me so I think it is sometimes aggravated more by allergies. When I am in Texas, Ohio and DC I have to keep changing gauze. If I lay in bed with nothing covering it, looks like pure water comes out of me. [ more ]
The weeping associated with fistulas is absorbed pretty effectively by a folded bit of gauze or TP tucked between the cheeks just as you rise from the toilet. Give it a try. It's not a medical solution, but it is a practical means of avoiding wet spots. [ more ]
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J-Pouch ForumsHelp! Need advice now!
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That is one thing I forgot to mention to my doctor. My stool smells horrible. Rocket [ more ]
Because I alternate antibiotics one week with lactulose and no antibiotics the next, I am noticing I have foul-smelling stools during the no-antibiotic weeks. I am not sure if it is the lactulose or BO or what, but I don't have the foul-smelling stool during the weeks when I am taking antibiotics. [ more ]
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J-Pouch ForumsHelp! Need advice now!
I am moving to Philly in 3 weeks and would really appreciate names. I have docs all over but need to find a good local GI and GP. Joys of moving. Not to sad since the doctors I have had in DC are awful and find them worthless. [ more ]
Thanks Marianne, I normally see Dr. Daniel Sadler in Bridgewater who is located on Rte 202 South, just before Wegmans. In Flemington, I am seeing Dr. Stephen Willis. But I think you are right, I need to see someone with more recommendations and thanks for the suggestion. I sent CT Barrister a Private Mgs as I have been looking around. I think I will create a new post. Thanks again. Rock [ more ]
There is also a guy in Hillsborough.... Dr. Ciambotti. I have heard good things about him. He's got to better than the clowns at HMC. Anyway good luck. Maybe post a thread in general discussion about gi docs in NYC. Maybe you can get some other names. [ more ]
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J-Pouch ForumsHelp! Need advice now!
sometimes probiotics makes things worse, meaning more gas. Maybe try cutting probiotics out for awhile. Also, I mentioned in another post.. get tested for a cdiff infection. [ more ]
Hey Nolan, Thanks so much for the inspiring words. Some days I just feel so exhausted and unable to function properly and get very frustrated. I am going back to school for nursing after my experience, I want to be able to help others out who have to go through what we did. Even taking 3 classes is extremely difficult for me sometimes. I want to go back to the gym, do you know when I will be able to attempt this or have any words of advice? Thanks again! [ more ]
Hey Chrissey, I'm 27 also but I've had my jpouch for 9 years now. Even though it was that long ago, I can still remember how hard those first 6 months were. I was having to empty my pouch very frequently, and everytime I did it became sore. Had really a bad spasm in my lower abdomen and jpouch for a bit as well. I know 3 months seems like a long time to be dealing with these problems but it does get better. Your pouch is adapting to it's new role, and it's also stretching out. I found taking... [ more ]
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J-Pouch ForumsHelp! Need advice now!
If I take the Metamucil pills, I have to puncture them in several places first, or it passes right through with the gel soft but intact and the Metamucil still securely inside. [ more ]
I find the powder works fine. The capsules didn't do a good job for me. [ more ]
I am on Cipro for pouchitis. I did have a scope done October 9th and I go back November 17th to the GI dr. but was able to somewhat read my results and I think from what I read it is all good. So I have no idea if I have pouchitis still or not. Sure feels like it and nothing is working. Today is a day from hell just like yesterday. Many tears today. Some days I just don't want to go on, but I get on here and see some hope and know I am not alone. Some days I am ready to go back to the bag. [ more ]
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J-Pouch ForumsHelp! Need advice now!
That would explain it then. Sort of like having your tongue sliced. High concentration of sensory nerves. I am not sure that any oral pain meds will really put a big dent in that pain. Have they had you try ice or heat? Jan [ more ]
It was an anal stricture and he said I only had a couple cm opening to use the bathroom. He said he had to cut on both sides and pull the flap back and suture it. [ more ]
What surgery did you have? If it was pouch advancement, the recovery is a tough one. Whatever they did, if this was an anal stricture, the pain would be worse than any other surgery. That is because of the concentration of pain receptors in the anal canal and transition zone. Time should improve things, but it may take weeks. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
I agree with mainbound. Mine tapered off after a 7-day dose of Flagly. My doctor told me to take a probiotic. I cannot stand VSL#3, so I tried Align. After about 3-4 weeks of using Align (and no other meds), I have noticed a significant difference in my happiness with my J-Pouch. However, I do take 1 tablet of Tylenol PM at bedtime. I was taking Advil PM, but after about 2 weeks of taking it, it caused bleeding. [ more ]
Thanks everyone [ more ]
If Imodium doesn't work for you, Lomotil may do a better job (it does for me). Lomotil is prescription-only. [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsHelp! Need advice now!
I am able to eat ok but get very bloated. The pain is not all day but can last for hours. Bowel movements I do feel like I am straining to pass. I really appreciate all of your advice. [ more ]
The longer travel time could be related to your Norco pills (if you took them in the morning). Maybe? My surgeon had me go through the SBS because of obstructions the year following my takedown as a matter of procedure. It had to be done prior to justifying surgery. I don't believe the study showed the narrowing that was eventually show to be there when I underwent adhesion lysis (removal). In other words, the SBS showed nothing but I had surgery anyway. Two major adhesions narrowing down my... [ more ]
I get this way quite frequently and now eat mostly a soft diet. I still have BM's when this happens, they are small and can be frequent while I'm in pain so bad my Norco pain pills don't provide much relief. My worst area is where my stoma was, which was close to my incision. I had an abscess under my incision that was removed at take down plus I had incisional hernia surgery after that. So I envision a perfect storm for adhesions around there that is causing my partial blockages. My surgeon... [ more ]
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J-Pouch ForumsHelp! Need advice now!
thank you! [ more ]
Maybe you have a touch of pouchitis ? I know when I get super gassy and have frequent stools with burn, I call my surgeon for some Flagyl. He usually prescribes for 10 days and I get everything straightened out. Then, I try to take a probiotic, such as Culturelle, for a couple of weeks after . For the burn, try frequent sitz baths. I also used Maloxx on tp while wiping, followed by liberal amounts of Calmoseptine. Don't be afraid to put the Calmoseptine a little inside anal opening. Hope you... [ more ]
A PM would be great if you can thank you again LJK [ more ]
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J-Pouch ForumsHelp! Need advice now!
I get bad gas from SIBO and it gets worse buy the main culprit, sugar. If you are eating carbs like bread then that is pretty much the same offender. Check your diet. [ more ]
Some folks seem to get good results from Beano or Gas-X or digestive enzymes. Gas can sometimes be a sign of bacterial overgrowth, which might warrant antibiotics. [ more ]
Hi, I find carbohydrates to cause a lot of gas, especially Bread (wheat products). Try avoiding gluten and see how you react in terms of results. Good luck! Solomin [ more ]
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J-Pouch ForumsHelp! Need advice now!
Thanks, it has been a rocky few months and lately it's just a bit more frequent. As soon as I can, I will have them look into possible fistula and check the general j-pouch health since it has been a while. [ more ]
You can get diverticula anywhere in the GI tract (even the esophagus). I would not be surprised if your straining caused it. However, I would be concerned that tjis actually was a fistula or sinus tract, so I think you need to follow up with your GI and have him review the films. A fistula certainly would explain your recurring problems. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
I spent several years working an abd. surgery floor as a RN. It may be how you are carrying your weight.If you carry the extra weight in your abd,that may be why it is such a problem. Stitching fat does not work so well. I am sorry that sounds so bad but it is just the way the body works sometimes. This is not always the case, unfortunately, you would not know until after surgery if you would be the unfortunate one.I remember times when wounds were open and packed because the layer of abd... [ more ]
FYI - I was saying she "was not arrogant" because she wasn't going forward with the procedure.....that an arrogant doctor would do the surgery. I hope that is clear now. She is doing the correct thing in not proceeding as she has reservations. 250 pounds on a 6'2" tall man is not the same as 250 pounds on a 5'8" man. Sure if you look this up on a chart he's not in the normal range but there are some of us with UC that did not become underweight. Some of us gained weight that we could not... [ more ]
I think it's quite the opposite, an arrogant doctor would go ahead and do a surgery she's not actually experienced or confident with... 250 lb at 6'2" is technically obese and as mentioned upthread, without getting judgey about it the hard truth is that obesity is a huge risk factor for abdominal surgery. It sounds like you have only had a colectomy so far, so you would most likely need two more surgeries (one to build the j-pouch and one to reverse the ileostomy). First of all, it is... [ more ]
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J-Pouch ForumsHelp! Need advice now!
I am interested to see if anyone posting here has gone for pouch advancement surgery as of yet? [ more ]
Please keep me updated on your progress, my DD currently has a failed pouch and a diverted ileostomy. We are in the process of getting two different opinions. The first is I suggesting we remove the rectal cuff because he believes it has a motility issue and is too long at 5cm. My DD pouch became extremely dilated and bogged down. Our next opinion should be sometime in December 2012 in Cincinnati Colorectal Center at the Children's Hospital. Please tell me how you are doing. I hope your... [ more ]
Dear Jeane I am really feeling very sorry for your condition. It is painful and indeed difficult to manage. Many things are required for successful management of a condition. First and foremost is the access to a Doctor who is outstanding in his knowledge and skills and has time to give personal attention. If the problem is in the rectal cuff, left after IPAA, then the rational solution is to have that portion removed. Many times you get what you expect. One should never lie on the operation... [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsHelp! Need advice now!
Many folks can sleep through the night. I could when the Cipro was working, but now I seem to get up once. If Imodium doesn't work well for you, you might ask your doc about Lomotil. I get better results with it. [ more ]
after many years with Kocks Pouch I still suffer with pain. Does anyone seem to get a nights sleep or does everyone awake after 4 hours like me? All the questions I have asked over the years are met with a blank look. I do have a problem with milk type food and I know not to have these. I have a healthy diet and have only been given immodium. This seems to cause cramps now so have left these off. After years of asking for anti biotics and told no my GP does allow me low dose. This has helped... [ more ]
Cez- I find that Metamucil makes my stool consistency much more, well, consistent. Bowel slowers (Lomotil, Imodium) have a similar effect through a different mechanism. Have you experimented with these? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Have u tried miralax? My Gi suggested that for my stricture at the anastomosis. [ more ]
I have 2 strictures at least above and below pouch and go toDr Shen in Cleveland for balloon dilitataions every 3 months. I still get blockages occasionally but now have a digestive enzime before every meal and drink much more water than I did previously, Dr Shen recommendations and that has helped. Also no nuts or fiber and I try to chew well. My narrowing is very small so hardly anything fits thru my strictures even after dialations. [ more ]
Thanks for your input. To clarify, I have narrowing at the inflow "tube" leading to the pouch that's high in the "tube." This is a problem that due to the location is being left as is. (Can't resection due to location, balloon very risky so as long as I can deal w/ it, it will stay as is & hopefully not get any worse.)The stricture(s) are lower. 2 different areas. Decided to go ahead & do the Gastrograffin & the dilation. I need to speak w/ my surgeon again to clarify a few... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Oh, and there are also the Lacaid pills you could try. You take one with your first bite of dairy. It may be worth a try next time you have anything with dairy in it. If you do try it, don't buy the chewable ones...the one you swallow work better. It can't hurt. [ more ]
Milk shakes are common problems for those with lactose intolerance, because there is so much milk in it. Most adults are not or intolerant of milk, but just the milk sugar, lactose. Pizza is not a very good test because there are so many other things in it and the combination with the spice and grease can be kryptonite for many of us, even if we tolerate milk in any other form. My husband did not even know he was lactose intolerant until he developed UC. It was when he was in a flare that... [ more ]
Marianne, I am not sure I am actually lactose intolerant and have never been tested. But in the past, having things like milk shakes would pizza always had negative side affects. I believe I am as milk does cause problems. Rocco [ more ]
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J-Pouch ForumsHelp! Need advice now!
Thanks Guys! When did everyone feel like they were spasm free? Like how many months out? I can't wait until the spasms completely go away. [ more ]
My absolute forbidden ingredient is "mushroom soup". Tried using it in my favorite recipes (gravy, tuna casserole, and pot roast) from month 1-6 post TD with the same result. Symptoms were nausea, extreme gurgling, frequency, and it kept me going to the bathroom all night long. [ more ]
You probably have had onions in other things so felt safe in trying the soup. It makes sense to me to do so at 4 months. I would wait a while before trying it again. Have you tried taking digestive enzymes? Pizza is my favorite food so my pouch had to learn to love it pretty soon after I started using my new plumbing. LifeExtensions and Solray are two brands I've used and they both work well. They help digesting "repeating" and gassy foods. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Yes, sitz baths are what you need. They will help it drain, and increase the blood circulation, improving healing. This is considered a contaminated wound, so if some stool leaks out, it is no big deal. As mentioned before, just empty the basin and replace with clean water. No need to add Epsom salts or other additives. You can even use warm, moist compresses, basically, sitting on a warm, wet washcloth or gauze. What you do NOT want to happen is the draiange hole to crust over. You need to... [ more ]
After a BM, take a warm (actually, as warm as you can stand it) sitz bath. I'd recommend taking as many during the day as you can fit in. If you happen to leak a little stool into the sitz, just empty it out and start over (this has happened to me in the past as well. Best to try and keep the "wound" open and draining, and sitz baths are quite good in that regard. Stool going back into the fistula won't be harmful, according to my surgeon; however, you don't want to chance a UTI. [ more ]
I would let it drain on it's own. It sounds very uncomfortable. I wouldn't do the sitz bath as you are right in not wanting to get fecal matter back into the open fistula. Perhaps you can cover your bed with something to protect it and lay in such a way so you can rest. Take care [ more ]
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J-Pouch ForumsHelp! Need advice now!
The first trimester can be a challenge, even with a colon, especially when you are new to all this. Even though that fetus is teeny tiny, all the hormones and the growing uterus will put pressure on anything around it. Things will change daily, back ache, brick feeling on your bladder, etc.. But, once the uterus rises out of the pelvis, things calm down a bit within the pelvis. So basically, this sounds like normal stuff to me. Jan [ more ]
As an update - My surgeon congratulated me! He said he obviously thought waiting was a better idea but that through the 9 months the jpouch could still heal. I still have questions though - 1 Yesterday and today I've had MAJOR pressure from inside on my pouch. It comes when I'm standing or sitting. Going to the bathroom or passing gas alleviates the pressure a little but it comes back. Is this gas pains? I feel like a brick is just above my rectum and that I can't get rid of the pressure! [ more ]
Whatever scar tissue that would form on your tubes nd ovaries woud have formed within a few weeks of your j-pouch surgery, so t was there by he time of your take-down. The take-down would have little to no effect, because of the lcation f the surgery. You were just lucky to not be a big adhesion former. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
MK, If all of these problems started after you started taking new medications I think it's safe assuming they are the cause! Maybe it is just one of them causing them. Your systems are horrible. It took me 10 years of my feet slowly going bad before I finally found out I now have neuropathy. No one could tell me what was wrong with them during that time and I saw plenty of doctors and had many tests, including an MRI. It got thrown in my firomyalgia bucket and the rheumy said the problem was... [ more ]
MK- No insult was intended. It sounded like your interaction with your doctor was deteriorating badly. We'll get better results from these interactions with docs when we can stay calm. Although it isn't fair, this is true regardless of how justified the upset is. I'm not blaming you here - not even a little - just trying to suggest a strategy when it's at all accessible to you. Others have pointed out here that our docs have the same goals as we do. [ more ]
Sharon, You always have great insight and intuition, and you are so much appreciated. I do think that this disease presents locally early on and over time can become systemic involving all organ symptoms. Humira and Imuran act globally but seem most effective locally. I don't know what therapies are available for these non-GI symptoms but as you know so well; they can be serious and disabling. Thanks again, MK [ more ]
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J-Pouch ForumsHelp! Need advice now!
Angela. As awful as this sounds i am glad you have cdiff!!! Hopefully it will be fixed with one round of some evil antibiotic. Make sure you get another cdiff test for the all clear signal. And if you still have problems those itis things can coexist with cdiff. And yea for you for stepping up and taking charge of your health. best wishes [ more ]
Well the winner is....C. Diff. So far that's all anyway, just got test results back but haven't been in to see the surgeon. I was concerned about this and wanted to make sure I didn't have any of the suggested issues - pouchitis, cuffitis, or c. diff - and he said I was fine and just taking time to adapt. I've been suffering huge for a week and it was my GP that looked further at my troubles. Thank you all for responding, really helpful. I think I've learned how much I need to be the... [ more ]
You could have pouchitis, cuffitis, or cdiff infection. Or all of those. You need to see your doctor. If your surgeon is not available go see your gi. That be patient motto is useless if you have any of those things. My post takedown days were exactly as you are describing. For one month i listened to other jpouchers and my surgeon's nurse and then my surgeon saying ...it will get better. I finally got back to a gi who scoped me and told me i had severe pouchitis and severe cuffitis and that... [ more ]
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J-Pouch ForumsHelp! Need advice now!
It could be yeast. Try elimanating sugar and/or wheat for two weeks and see if you improve. [ more ]
My doctor called in Lidocaine 5% ointment. That is amazing. Burns a little when you put it on but in a few minutes: RELIEF. Maybe this would help give you some instant relief through this. I had one weekend I was really sick and my poor butt. It burned so bad so I asked Target Pharmacy and that is what she recommended. So glad she did. I have only used it a few times but grateful to have on hand. But your doctor does have to send in a prescription for it. Good Luck. [ more ]
As quickly/suddenly as this came on it went away. I am having some frequency as the braxton hicks contractions become stronger but am finding that the discomfort is pretty non-existent, knock on wood. I have begun having my wafers again to keep things more formed and find this is helping tremendously. I am one week out from delivery and getting excited/anxious. Just nervous about my "bowels" waking up after the spinal wears off. I have a pretty understanding OB and he is on board with... [ more ]
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William J. Johnson
bjohnson@j-pouch.org
Bill Johnson founded the J-Pouch Group in 1997.
After a life long battle with Ulcerative colitis, Bill finally had his colon removed and was given an ostomy in 1993. A failed attempt for a j-pouch and then many surgeries to get back his health gave Bill the motivation to create a web site dedicated to giving support to patients who have had or are considering j-pouch surgery.
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