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J-Pouch ForumsHelp! Need advice now!
J-pouch, cuffitis, fistula and coping
C Countrylady
TE Marie Can your specialist write you a medical excuse from your job? If not can they tell your GP about your problems? I'm sorry you are going through all of this. To have vaginal problems along with a sick j-pouch has got to double the need to be off of work. I eventually had to have my j-pouch removed but didn't have the vaginal complication. I too had a difficult time with the ileostomy in-between my j-pouch surgeries. My j-pouch problems got so bad I thought even going back to the bag would be... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Fistula Trac and Chronic Pain
J moonsJ moons
J moons Hi Dianne, Thank you for your response. I am really glad to hear that the plug is working well for your son. I hope it continues. I definitely understand the part where you say, "Now I wish I could get him to take better care of himself" because I am sure my mom thinks the same thing about me. My doctor just responded to a few questions I had and he said that the fistula I have is not a true fistula; rather, it is a "blind-ending tract (a sinus)". He is going to speak with my surgeon about... [ more ]
Jeffsmom Hi John, so sorry about your chronic pain. I’m jumping in here with my two cents. My son sees a number of doctors at Weill Cornell in NYC. He had a bad internal fistulia that no one could figure out what to do with. It was all internal, from his j-pouch to an abscess in his pelvic area. He was on more drugs than an addict. His main surgeon at Weill Cornell, Dr. Shukla brought in Interventional Radiology, Dr. Lee. Dr. Lee did an experimental surgery on my son. Jeff was only the 13th patient... [ more ]
Scott F Fistula surgery is tricky business, often doing more harm than good. I'd undertake it only in very skilled hands, and even then only with a surgeon who seemed to be appropriately conservative. Remzi would be a good choice, I think. Sometimes the smartest thing to do with a fistula is to learn to live with it, and I know just what a terrible thing that is to say. I'm not quite sure what the doctor is trying to do with the Cipro and Flagyl. These are great drugs for pouchitis, and it's not... [ more ]
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J-Pouch ForumsHelp! Need advice now!
blood with stools - is it protein allergy
JL johni lu
Jan Dollar Allergy to essentially all animal proteins is pretty rare. Pouchitis is very common. What also seems more likely is something more in line with pancreatic insuffiency, pancreatitis, or something similar, which is interferring with your digestion. Perhaps you have gallbladder issues, which is very common. I would have the endoscopy to rule out pouchitis or other inflammatory issues in your pouch, then seriously look at pancreas/gallbladder issues. Also, celiac disease could be a factor. [ more ]
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J-Pouch ForumsHelp! Need advice now!
2 days post stoma reversal, living in bathroom!
NP New pouchie
New pouchie Also did your doctors comment that it is unusual to get pouchitis so early? Did they do any investigations? [ more ]
New pouchie Thanks for such a detailed reply Winterberry, I’m glad you now seem to have it under control. That is what I’m worried about - recurrent/chronic pouchitis. The 2 week course of cipro + metro finishes in a few days so we’ll see what happens. Been instructed to start VSL#3 once the course has finished. [ more ]
Winterberry Hi, New Pouchie. I hope this will be helpful. My first bout of pouchitis was two weeks after reversal. When I left hospital it was all going well, no burn, no problems other than the expected heavy soreness in the abdominal area and in the incision. Then almost overnight at the two week mark it became difficult: urgent frequency, leakage, Burn, and the feeling of pooping razor blades or pieces of glass. I could not make it to my surgeon's office but from my description they knew it was... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Biospy
P Peggyp
Scott F This is a little strange. Ulcers tend to be visible at the time of the scoping. It’s possible to have inflammation that can only be seen under the microscope, and dysplasia normally behaves that way, but an ulcer is an open sore. Perhaps they were very tiny ulcers? [ more ]
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J-Pouch ForumsHelp! Need advice now!
MRI results
S sally85
Jan Dollar Yes, scarring can recur that quickly. Three times a week is like every 2-3 days, NOT 6 days! Generally, you dilate frequently after surgical dilation, and gradually increase the interval between self dilation. If it starts to get difficult, then you need to go back to more frequent self dilations. Wait too long and you are back to needing dilation under anesthesia. Even if you are able to evacuate your pouch, you should still try to dilate once a day. Maybe get a smaller dilator from your... [ more ]
TE Marie Hi Sally, I had a dilation of my stricture done in surgery and it came back fast. I had a bidet and had to give myself enemas to empty 4 - 6 times a day. Have you tried anything like that to help empty. I had an enema bag that I used when I HAD to be away from home, like when I went to Mayo's for several days. Long way of saying the stricture can come back fast. The imaging clearly showed my narrow opening. My surgeon and GI at Mayo's said my cuffitis, which is UC, was causing the strictures... [ more ]
sally85 Also I forgot to mention, before I had the dialation done I could not empty at all, I had to strain like crazy! And I had extreme gas that used to hurt like mad and basically I was home bound because I was forever feeling I needed the loo, but couldn't empty, so much so that the extreme gas was coming from my vagina as well as lots of discharge and mucus. Since the dialation however I can go to the toilet ALOT easier and I have had no gas from the vagina, and no discharge at all either, I... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouch Removal Recovery Time??
J J.T.
TE Marie I had a problem sitting on hard surfaces for longer than 2 months but took a cushion with me everywhere I thought I'd need it. That is because of the removal of the rectal stump and not the j-pouch. I think they remove the rectal stump with the BCIR but Bill would know about that. If you can push your trip back a month I think it would give you more time to get use to everything. By everything I mean the perm ileo and rectal stump removal. [ more ]
BillV Joe, I can’t give you an answer about chronic pouchitis with the BCIR, but either Susan Kay or Gail with the BCIR program in Florida, (800) 336-0789, could better answer your question. I never had pouchitis with my J pouch, but did have it for several months post op while my BCIR pouch was expanding to its full size. I have not had a recurrence of it in the 3.5 years since. My J pouch had to be removed due to recurrent high grade dysplasia and a malignant polyp in the rectal cuff. Please... [ more ]
J.T. Bill - if I have chronic pouchitis now.....wouldn't I expect to have chronic pouchitis with a BCIR? Can I ask why you had to have your pouch removed? Thanks Joe [ more ]
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J-Pouch ForumsHelp! Need advice now!
Cuffitis not responding to salofalk and prednisolone supposortries...
Andrea73Andrea73
Scott F I’d suggest a C. Diff test *before* starting antibiotics. I hope you feel better soon, Andrea. [ more ]
Andrea73 At the end of my tether today... Been in the loo every hour since yesterday afternoon and all night.. Seeing my consultant tomorrow if I can hold out that long... Thinking it's maybe escalated to pouchitis as well as cuffitis. Output pure water, no matter what I take! Think I'm prob get antibiotics tomorrow but need bed today! Only went back to work full time yesterday as been part time since surgery! Gutted literally! [ more ]
Andrea73 ❤️
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J-Pouch ForumsHelp! Need advice now!
Just diagnosed with crohn's
LeannernLeannern
Bill A Like others I was told I had Crohns after 5 years of UC diagnosis. I had a infusion 2 weeks ago. It had a effect for a few days then nothing. I have yet to take the second infusion due to a unrelated cold. I am asking if this is a process and its too be expected or should I consider other medications when it does not work. [ more ]
Leannern I will, thank you! [ more ]
jeane Let us know how you make out. Best of luck. The lack of sleep is very tough. Stay strong. It’s a battle for those of us with IBD. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Avoiding stress
M MCH
Kalyn I know exactly what you mean! I, too, get stomach pain when I am upset ever since takedown surgery. I feel like this answer is almost too simple, but it's really been the only thing that helped me manage stress. Meditation. And I say that as a bit of a skeptic. But honestly, the difference in my stress levels between when I am meditating regularly and when I'm not is huge. And it helps facilitate/augment things like focusing only on what's in front of me etc. I just feel like I deal with... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Rash redness and general fire!
R Recovr83
JB788 Ilex paste has been a god send for me. Calms the itching and puts a barrier on sore burning skin...I can’t live without this [ more ]
Bubba1028 I use a barrier cream from coloplast- specifically made for adults who have incontinece to prevent rash. I put it on every time I go to the bathroom. Thats key. Good luck! [ more ]
Recovr83 Thanks all for your reply’s I see the calmoseptine seems to be the best one but I can’t get it in Europe so I got canesten instead, the bidet seems like a great idea too an easy to install gonna order off amazon, Hopefully these couple of changes will get me on the road to normality quicker 😁 [ more ]
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J-Pouch ForumsHelp! Need advice now!
1 month past take down - possible pouchitis?
N Nicolajs
Scott F Part of the adjustment is figuring out which sensations need to be attended to, and which can be ignored. Maybe that pressure can be ignored, at least for a while. Ignoring the pressure a bit is sometimes called “stretching the pouch.” When you go to the bathroom and not much comes out it’s important to distinguish between a nearly empty pouch that feels full, vs. a full pouch that can’t be emptied. If you end up seeing your doctor about this you’ll get better care if you can successfully... [ more ]
Nicolajs Thanks for the inputs bubba and j moons. It’s definantly gas sometimes, especially at night. When i go at night though, I don’t think that the amount of gas comming out is vert much. Maybe thats just because the pouch can’t hold that much gas? Also I have not done too much exercise, like walking and so on. (Was told not to run and such for at least two months). The reason i’m not walking so much is I feel pressure when standing up, and the only way to get rid of that is to go to the... [ more ]
Bubba1028 I agree about the wipes and taking the medication with you. I have a little purse thing I bring to the bathroom during work. I also have a small tube of cream that i keep in that bag for travel too. When I was in the hospital last time my butt got really sore and they gave me a Ruben of Coloplast barrier cream/ointment and it’s the best. I just ordered a bigger container of it. I also use really soft toilet paper at home bc I have a bidet I purchased for $30 on Amazon. It sounds made a word... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Stricture dialation and fistulas
S sally85
Scott F The purpose of a draining seton is to keep the channel open and draining. As big a nuisance as that is, it’s worse if it closes off and develops into an abscess. That may not happen to you, and if you run into trouble another seton could be put in. Good luck. [ more ]
sally85 Thanks so much for responding, sorry I've been delayed, I had my dialation and biopsies taken, when I came out of theatre he said he had put a seton in, and said if I didn't like it I could cut it and remove it, well I tried for about 3 days and it felt so uncomfortable really bad, especillay when I had to use the dialator the seton was pulling and it was just to much. My question is will anything very bad happen by removing that seton? The surgeon did say himself I could remove it, the... [ more ]
Scott F We have heard from plenty of folks who do well with dilations. Some have to keep dilating periodically, and some reach a stable point and are able to stop. Just stick with it and hope for the best. Your fistulas make this a bigger challenge, of course, but the highest priority is to be able to poop. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Allergic reaction to Remicade
M Momma
Jan Dollar Maybe, maybe not. They can test for anti-Remicade antibodies, so you don’t have to wonder. Antibodies generally make Remicade less effective, but can also cause a reaction. The infusion reaction could could be just allergic. It is more common when you’ve been on Remicade, stopped it, then resumed later. I presume he was premedicated? I always get Tylenol, an antihistamine and IV SoluCortef. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pain then vomiting - blockage?
J JAYMEE
Jan Dollar Usually, a specific food is not the cause of an obstruction. It is more about your intestine moving in a “wrong” way, so that there is a kink or similar. This is caused by adhesions that formed within a few weeks of your surgery. So try not to beat yourself up about what you did or did not eat. Unless you are swallowing without chewing, you are doing fine. The only thing you can do is to be sure to drink plenty of fluids, stay active, and chew your food. Jan [ more ]
JAYMEE Quick update - no sleep last night as was in constant pain, but no vomiting and the pain has subsided a bit now. If it carries on tomorrow I think I'll ask my consultant for some advice. Thankfully I work from home and have an understanding employer. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Nausea after Remicade anyone?
M Momma
Jan Dollar My vote is for the Flagyl. It is rather notorious in regard to GI symptoms. Those that react to it tend to have serious issues. Cipro is generally better tolerated. Jan [ more ]
CTBarrister I never had nausea in two years of Remicade. Other medications like Methotrexate and Benadryl get taken with Remicade and could be the cause, but Cipro and Flagyl could cause it if he just started taking them. You should review the entire medications list with his doctor and seek advice. It may have been the Flagyl and maybe not. Glad to hear it seems to be getting better. [ more ]
Momma He’s feeling a bit better. Still intermittently nauseous but hasn’t vomited. I’m hoping it’s the flagyl [ more ]
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J-Pouch ForumsHelp! Need advice now!
manual dilation/stretching
N new_J
Scott F That’s great, Dan. If it’s being treated as pouchitis then normally a 10-14 day course would be completed. It’s much more likely to come back if inadequately treated. [ more ]
new_J So .much for the benefits of electronic communication with Medical Providers. My surgeon called me back this morning. I think the problem is he's just not a computer person, hence the short answers and in this case no answer. He was very accommodating and understanding and agreed that we should stop the manual stretching. I'm relieved because I've always liked this guy and I believe he is at the top of his game in case I ever need him again. With the help of Flagyl and Cipro combined I'm... [ more ]
Scott F A stricture is simply a narrowing around the circumference of the affected area, almost like a rubber band were wrapped around it. It can be caused by thickened, fibrous scar tissue or other things. If it isn’t causing your symptoms, though, a more thoughtful conversation about treatment is critical. It’s hard to tell if it’s been dilated enough, for example, if your condition doesn’t change after treatment, and you certainly deserve a different explanation for why treatment might be... [ more ]
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J-Pouch ForumsHelp! Need advice now!
How long should it take to pass the camera pill with a jpouch?
M Momma
Momma Just an update we had an xray today and found no pillcam so it must have passed without him knowing. [ more ]
RinaJP Mine got stuck in the pouch and had to really push to get it out through the anal canal. It kind of hurt because my anal canal is very narrow, but it was a relief once I got it out. Hope your son’s camera pill will come out easier. If he’s having output, he should be fine. [ more ]
Momma Thanks jan. None of the drs are concerned that the pill didn’t pass yet over 24 hrs. They offered to do an xray to see where it is but that would delay us going home from hospital today. They said as you have that long as he has no pain and passing stool not to worry. Going for follow up visit January 2 if we don’t see it pass we will have xray then. Still makes me nervous but I tend to over worry about everything [ more ]
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J-Pouch ForumsHelp! Need advice now!
Why can't I lose the weight
EdithEdith
CTB23 Just curious, I am finding it difficult to gain back the weight I lost since my takedown 14 mos. ago. Did you notice weight gain after a certain point? My surgeon says it takes about 2 years to gain it back. I have been at a standstill. I am also female, aged 63 and about 10 lbs. underweight. [ more ]
Edith ❤️
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J-Pouch ForumsHelp! Need advice now!
Just found out I have Croyns disease
BA Bill A
Saff Hi Bill, I am in the same boat, but have had pouch disconnected the last 7 years. Even disconnected its trouble, I am working up the courage for removal. [ more ]
Bill A Thank you for your reply. What insurance companies cover the drug? Have you found any who will? [ more ]
Scott F There are some programs that might be helpful enough to enable you to afford Entyvio, Have a look at https://www.entyvio.com/financial-support Hopefully you have health insurance, but there is support available in either case. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Scared to eat food after obstruction :(
B Bee26840
Barb.eve Thanks, all of you for the suggestions regarding blockages. I had my reversal almost 4 weeks ago and had a (partial) blockage 3 days ago. No idea this could be so painful! I know it was the raw carrot that I was happily chewing away on that was responsible...no more raw carrots for a while. It is very helpful to read your responses, again, thank you! [ more ]
Jeffsmom Sharon, nice to see you are back in the States! Wish I was in Miami about now, anyplace but here! Jeff is making me nuts. Has not learned a thing from his total blockage last month. Eating anything and everything and gaining weight. I'm backing off completely. Mic he gets. Another blockage, he is on his own. I can't sit and watch him. I'm waiting for him to blow his J-pouch. Good news! We are going to Quebec end of August. Any suggestions on what to do or where to stay? And more than likely... [ more ]
LuckyLady Sounds relaxing. We were in Miami for a conference several years ago and visited the Keys (loved it there!) and the Everglades afterwards. I sent a couple of personal messages earlier - did you get them? I've been feeling great since that horrible episode in March - the new tube has been working very well for me - 4 months now. I got my life back! Pam [ more ]
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J-Pouch ForumsHelp! Need advice now!
?pouch removal
winter wishwinter wish
BillV I opted for a BCIR and my j pouch was removed in the same operation. I was up and around just after returning home and could have gone back to work at 5 or 6 weeks (but am retired). Perhaps you could start out part time for a couple of weeks and follow your surgeon’s recommendations about lifting and bending. [ more ]
Mysticobra I took 8 weeks but really could have gone back in 6 weeks. I was amazed how fast I healed. Richard. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Self Dilation for a teenager.
M Momma
jeane May, How often do you experience this issue and how far are you able to pass finger in? [ more ]
KatyT Not sure if this helps, but I always dilate with a gloved finger (I buy boxes of medical gloves at the pharmacy). This way I can have a better idea of what I'm doing and avoid causing damage. As soon as I feel pain, I stop. And there's a lot less risk of poking or perforating anything because your finger is more malleable. That has been my experience so far, at least. [ more ]
jeane That may be a tough call for your son depending on his age. i think depending on the stricture some people have success self dilating but if the stricture is very fribotic or a result of cuffitis it may not work. I’m in the same position and I’m going in for pouch advancement surgery I have had multiple dilations under anesthesia and my stricture will not stay open and each time they dilate they just create more scar tissue in my case. Some surgeons are really against self dilation and... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Oral Pentasa
K KatyT
jeane Pentasa is often prescribed for colitis. Whether it’s safe for a jjpouch or not I’m not sure but GI’s often throw anything they can at pouchitis.. Are your issues in the pouch or anal area? I’m completely baffled at how I can be sick as a dog struggling to empty my pouch with horrifying anal pain and fissures and after two to three days on Cipro i feel like a brand new person. I keep being told i need surgery as i have a stricture at the outlet connection causing all my misery but it amazes... [ more ]
KatyT Thanks Scott. As for diagnosis, I think his was acute proctitis. Symptoms are tenesmus and pain. Sometimes ER docs will give me antibiotics, sometimes I just use belladonna suppositories (my GI prescribed these). The problem is that I just moved across the country so I don't have a family doctor or a gastroenterologist. I was a little concerned about this prescription, since I've never been prescribed it in the ER before and like you said, most ER docs don't even really know what a j-pouch... [ more ]
Scott F “Flare-up” isn’t specific enough to base a treatment choice on. Do you know what the ER diagnosis was? Do you have a gastroenterologist? There are some reasons a person with a J-pouch might reasonably be using Pentasa, but that’s a choice that would rarely be good if made in the ER. ERs barely know what J-pouches are most of the time, much less what can go wrong with them. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Yellow liquid output ileostomy
Jmitch39Jmitch39
CTB23 I used Lomotil 2 pills 4 times a day when I had my ileostomy. With my j-pouch, I rarely use it. It never occurred to me that I would be dependent on it. I agree it's better than becoming dehydrated. Keep an eye on your output. If it is concerning, check with your surgeon. I know I measured it for a while in the beginning, but I don't remember what was considered a normal daily amount or anything about the color. [ more ]
Scott F Hi, Jess. I’m not sure what you believe about “becoming dependent on Lomotil,” but for now I’d suggest that you use it. Lomotil is much better than dehydration. [ more ]
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J-Pouch ForumsHelp! Need advice now!
saw surgeon-suggesting 3 month ostomy w pouch advancement. Questions
J jeane
jeane Thank you for the replies. I’m very sorry you are experiencing problems with your pouch Jamie. I think over time the pouch can get burnt out. Dr. Remzi indicated mine was burnt out over two years ago. I’m surprised my surgeon is offering to save it and at the same time I’m wirried that maybe I should go w Remzi and get a pouch redo as if the advancement fails w current pouch am i out of luck fior a redo? Thank you Billy for offering an alternative to the jpouch. Hopefully in NY Remzi may... [ more ]
BillV I can also relate to the problems you are experiencing with your j pouch. The presence of recurrent high grade dysplasia in the rectal cuff made removal of my pouch necessary, and I very strongly did not want to get an ileostomy with its associated issues. Fortunately, I found that the k pouch and closely related BCIR are procedures that do not require having an external bag. You can get lots of information on the internet about these procedures as well as locate surgeons who perform them. I... [ more ]
Jamie S I can say that "I feel your pain" with regard to considering a permanent ileostomy; that is where I am now. I've had my pouch since 1999 ( by Dr. Fazio at Cleveland Clinic) and it doesn't seem to work for me anymore causing a loss of quality of life. 15-20 BMs per day, up several times a night, almost constant cramping alleviated only 1200 -1400 mg of ibuprofen daily, and now moderate incontinence. . Also lots of butt burn. I can't walk long distances or hike anymore unless I know there is a... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Upcoming pouch advancement surgery
CoopstaCoopsta
J moons I don’t know if you’ve tried this or if you’re past this option but my severe cuffitis was successfully treated with Stelara (every 6 weeks instead of 8). My J Pouch clinician also prescribed Tacrolimus suppositories which i think seemed to help with my symptoms. The tacrolimus supps have to be compounded, btw. Also worth noting that my cuff is only 1-2 cm, the smallest they could make it. [ more ]
Scott F A surgeon’s confidence is not a reliable indicator of his competence. Pouch advancement surgery is technically difficult to perform, and it’s an uncommon surgery, so very few surgeons have had much practice at it. At a minimum you might ask Dr. Haas how many of these he performs in a year, and whether he tracks his results. Does he suggest a mucosectomy along with the pouch advancement? I traveled a long way from home to get my J-pouch surgery. It was inconvenient for a few weeks, but I’m... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Swollen Knee, painful
drone3drone3
Annikki After my knee I started to get flares in my elbows, wrist, ankles, toes and fingers. Much better now. I get flares but the pain is manageable and it's not all days long. [ more ]
Annikki Enteropathic. It was pretty bad. My knee swelled to the point I couldn't walk. I used a cane for quite a while. Pain 24/7. No impact on my pouch. It's often used to also treat UC. I had to slowly increase the dose as there is side effects. For me it nausea, headache. Both have subsided pretty quickly. It would last a couple days and go away, then I would increase the meds every 4-6 days until I hit therapeutic dose. It's important to take them at the same time everyday spaced 12 hours apart. [ more ]
drone3 Thanks Annikki, I'm meeting with the rheumy this Wed. will probably start on the Sulfasalazine. I have a few more questions; 1. What type of arthritis do you have and how bad is it? 2. Did the Sulfasalazine affect your pouch BM in any way? 3. Did you get any noticeable side effects from taking Sulfasalazine? thanks so much -d [ more ]
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J-Pouch ForumsHelp! Need advice now!
Perianal Abscess or Bartholin Cyst?
betsaroniebetsaronie
Sophia Sauzier My daughter have a jpouch and since a few days que has an abcess near Her vaginal Her doctor gave Her antibiotic that she start today. Now it hurt also near her anus. Do u think that it can be a perianal abcess. Do u think that with the antibiotic or Will be ok? [ more ]
rachelraven Hope it DISAPPEARS! My fingers and toes are crossed for you. [ more ]
betsaronie Surgeon seems confused by it too. Internally she could feel it only through the vaginal opening, not the anus. Anus looks all healed from the fistula surgery with the analscope. She is keeping me on antibiotics for 2 more weeks (its shrunk significantly since i started them on Friday) so she's hopeful it will go away, if not then she'll send me for an MRI to see exactly where it is since it's not fistulous anywhere externally. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Axial spondylitis
John95John95
Jan Dollar Yes, IBD related arthritis is enteropathic arthritis. It is not the same as AS, but is considered one of the related spondyloarthropathies. Enteropathic arthritis can be peripheral or axial or both. It tends to run a milder course than AS. Treatment is supposed to help slow progression. One of the main manifestations is enthesitis, inflammation where tendons and ligaments insert in the bone. The heel is a common area. What you have not mentioned was sacroiliac pain/stiffness, which is pretty... [ more ]
John95 Thanks, Jan. I've also come across that data. Is IBD-associated AS synonymous with enteropathic spondylarthritis? Does IBD-associated AS run a different course than primary idiopathic AS? It's hard to find a definitive answer on this. Why were you diagnosed with enteropathic arthritis and not IBD-associated AS? [ more ]
Jan Dollar According to my rheumatologist, those with enteropathic arthritis have a much higher rate of negative for HLA-B27. As a matter of fact, only 30-70% of those with IBD and AS are positive. So, it is quite a bit different than the general population. https://emedicine.medscape.com/article/334746-workup I also am negative for all inflammatory arthritis markers, yet I was diagnosed with enteropathic arthritis based on history and clinical presentation. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Continual Blockages
smrdaz4lifesmrdaz4life
smrdaz4life Thank you so much for your advice. I finally got in with my GI, I am very disappointed in his advice. He told me he wants me on high doses of Pred. Been there done that. They are horrible. I am currently on Medrol 2 1/2 mgs. a day and trying desperately to get off. Well he told me he feels the blockages are coming from inflammation. That is why the pred. He also mentioned that IF it is an infection I would get deathly ill right away and end up in the hospital and then they have to figure out... [ more ]
KiwiPoucher I am sorry to hear you are having problems, but I was relieved to see someone else who seems to be stuck in a similar position as me. I have a j-pouch and I have had problems with obstructions caused by adhesions. I had lap surgery to remove adhesions in 2014 and unfortunately they burnt a microscopic hole in my small bowel and didn't notice, so a week later my sb ruptured at home which then resulted in an emergency laparotomy......2 months later the obstructions started again. Since then... [ more ]
skn69 So sorry for all of the blockages. I do understand the frustration and confusion with what is going on. I never had blockages, adhesions or occlusions...never even had a post-op ileus until 2007 or 08...then they started to hit me with a vengeance. Around 2014 I had my gallbladder taken out and they managed to unblock a loop or bowel that was twisted and stuck. I thought that that was the end of it but I still get occasional semi-blockages and 24h occlusions. My surgeon said that even going... [ more ]
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J-Pouch ForumsHelp! Need advice now!
My unidentified problem
E Enterin
Enterin II have watery diarrhea, bigger urge, and 2 times asleep for the toilet. No pain, noisy, no temperature. Will get the result of the search tomorrow (for c diff) I do not yet have it. Finds on parasites, viruses, and helico bacteria. is negative. [ more ]
Jan Dollar Metronidazole should show improvement within a few days if it is going to work. If you think or know you may have C. difficile, it is safer than Cipro. It can be effective against some strains of C. diff, but not all strains. Jan [ more ]
Enterin I was working on a test stool, only leukocytes in the stool were found. Since I still have diarrhea I got metronidazole (flagyl) What are your experiences with him? Does it work fast? He is also a cure for c. diff. and I'm looking for a find on Friday [ more ]
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J-Pouch ForumsHelp! Need advice now!
Cuffitis and doctor?
S Scott21
TE Marie I had mine removed at the Mayo Clinic with no post surgical problems other than the usual incisions healing, abdomen and back door, and getting use to a permanent ileostomy. I was told the surgery was more difficult for doctors than the j-pouch surgeries. [ more ]
winter wish Risks of pouch removal: bleeding ,necessitating re-operation, damage to adjacent structure such as bladder, ureter and other loops of bowel. [ more ]
Its Not About Me I think doctors who don't have enough J-Pouch patient experience tend to say remove the pouch. Most GI docs don't keep updated on the care options for us J-Pouchers. I can't tell you how many doctors I have been to, including GI doctors, that have never even heard of a J-Pouch. I'm 28 yrs with a J-Pouch and the last 16 yrs with added fistulas. Only with the added fistulas did my GI doctor suggest removal. I always have inflammation in my pouch, some days tolerable, some not (then I take 2... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Frequency of self-dilation
L 10larry10
10larry10 Thanks! My doctor was talking about how many times, vs the method. It sounds from what you, and the other person who responded say, that I need to do it way more often than once a month, to avoid trauma, but maybe one a week rather than twice a week might be fine. I'm gonna do t twice a week for a couple of weeks, and then go to once a week and see how that goes. I won't do it less often than that, for sure. Thanks, again! [ more ]
jeane Larry, By indicating going in th wrong direction ate you only referring to how often you dilate versus the method you are using to dilate? My colorectal surgeon suggested daily dilation but I think that’s ways too often. I think the point is if you dilate more frequently than once a month you are keeping the opening functioning which is less trauma to the connection than trying to reopen the stricture once a month. My surgeon is suggesting scar tissue removal as he indicated once you... [ more ]
10larry10 I like it! Maybe just once a week would be just as good, less obtrusive in my life and work just as well to accomplish what my doctor wants! Love it! THX! [ more ]
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J-Pouch ForumsHelp! Need advice now!
(2)Month(s) post-surgery pains - your kind advice/experiences
P PetFan
aragorn It took my son about a year and a half of on and off gut pains for his body to fully adapt and smooth things out. [ more ]
PetFan Hello everyone, hope you have had not too scary of a Halloween. It has been a long time since I have last posted here. Things are better on our side and my wife has returned to work. This is good. Pains are not so big anymore and my wife is taking therapy biweekly which is also supporting the recovery. I am quite positive things will continue to imporve, but also understand there may be complications along the way like pouchitis. Reason to post this is to say that, yes, it is better, and it... [ more ]
PetFan Hey you all, here a short update.. Susan, hang in there! Sounds like you are having tough times right now! Say my best to Ismo! He would not be very jealous of the finnish summer this year, its cold and rainy, however, some nice days too. Im happy to get in touch one-on-one! Last week we went to post-surgery inspection. It was very fast, took only like 30 minutes max. Everything seems to be healing pretty well. Except for the pain. This time the doctors said that the pain is not something... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Decreased pouch gas
T Twilight
kkat I know this sounds off the wall, but it might be worth getting tested for c-diff if you determine that it isn't an obstruction. Hope you get some relief soon. [ more ]
Jan Dollar Sounds like a partial obstruction to me. A full obstruction would have caused much more pain. Go light on solids for few days and increase liquids. If it is pouchitis, your symptoms should be increasing diarrhea, with cramping and gas. Jan [ more ]
Tkanlfcm Pouchitis?? [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
obstruction
duck11duck11
Jan Dollar You probably need to be seen, as this has been going on too long, and you now have intermittent severe pain. FYI, the ileostomy site is the most common site for obstruction post op. Jan [ more ]
lablover heating pad..drinking lots of liquid and go to the doctor if it keeps up. Obstructions are nasty. [ more ]
duck11 Are there any other helpful thoughts on this? The last 2 days, in addition to the bloating/nausea, I have had horrible, stabbing pain at the site of my ileostomy scar. It comes in waves and I can barely tolerate it. I haven't gone to the hospital because it passes in a couple of hours and I am still passing a little bit of food. Still only eating fluids, and losing weight...anyone? Is this still bowel obstruction territory? I saw my family dr. who aid to try fluids for one more week before... [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
Taking Forever To Get Over a Cold- Remicade?
CTBarristerCTBarrister
Jan Dollar I hope you have had your flu vaccine. If you think a cold was bad, you don’t want the flu. Jan [ more ]
CTBarrister Jan, I definitely agree with all of what you said. I am fine now, but this cold lingered for 2 weeks. It’s true I didn’t get proper rest at several points during the two weeks due to vacation/other commitments I had to keep. It’s also true that I am 54 and perhaps more vulnerable to new viruses. Over the course of the two weeks the symptoms seemed to wax and wane, I would start feeling better and then be lousy again. I think Remicade probably tacked on 3-4 days of linger. I am better now. [ more ]
Jan Dollar Maybe Remicade added a few days, maybe not. Other factors: Each cold is a new virus (as you are immune to past viruses), so this one could have been especially virulent. You admit that you didn’t rest as you should have. Each year you are another year older. Age has its merits, but also drawbacks. Jan [ more ]
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
Effect of food poisoning on pouch
I Ivan
Ivan Thanks Claire, your comments are much appreciated. [ more ]
claire Agree with Scott, would try let it run its course. I got campylobacter last year and it really lasted a while... but gastro said not much point / evidence for antibiotics. I wanted to avoid them anyway. It cleared up by itself with a gentle diet and lots of hydration. [ more ]
Scott F In most cases of food poisoning, without evidence of persistent infection, antibiotics are worthless. Most causes clear up on their own, and the others should usually be treated with a specific rather than a random antibiotic. This is different from "traveler's diarrhea," which may well be worth treating. Xifaxan (if you can afford it) can be used to treat traveler's diarrhea. [ more ]
See all 8 replies...

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Bill Johnson founded the J-Pouch Group in 1997.

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

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