Hi all, Just wondering how many of the j pouchers here take meds for continuing UC or Crohns symptoms or conditions caused by their j pouch....
Hello all, I wanted to reach out because I'm still thinking about Joseph aka Chiron who recently lost his battle with UC. May God rest his soul. My story was similar to Joseph's, but I had the...
I'm so sorry. He was a brave young man. He is in our thoughts and prayers. Please know that he is in a better place now....
Chiron, I concur with the suggestion of just having the most straight forward surgery. Get that diseased colon the hell out of you. Worry about what set up you want after you're healed up. Just know...
Hopefully modern medicine will definitively find the cause(s) and not just treat symptoms. And more importantly, knowing the cause(s) society can exercise prevention....
Thanks for the advise Mak. I've had occasional nights like what you described, but goes away in a few hours. That's scary stuff. :shocked:...
Hot baths were helpful for me. It was literally the only time the pain (UC and hemies) actually went away. I can remember thanking God for that 10 or 15 minutes without pain....
Hi Sam, I really feel for you. I was 41 before having my first flare. I'm sure it's tougher for a young person like yourself. I recommend uber-researching the disease and trying things that folks on...
I'll bet the gas pain was in the shoulder, and the output was a puke green. I remember that now. Good times. /sarc/...
Hi Marcell, Yes, still doing well. Thanks for asking. I have some issues if you want to call them that, but I'm back to playing tennis, gardening, working and doing it all pain free....
I don't know if they have an op for that. I can ask that question this weekend at an IBD event at one the local hospitals. They'll have surgeons and gastros presenting at the breakout sessions. I'll...
Both. Took the punch to the gut about ten years ago, then off and on for the next 8 years but never that bad. Then the superman uppercut to the nuts 3 years ago pretty much forcing surgery....
I agree that a poll on this forum will not discover whether or not stress causes UC because we can only gather a small sampling of anecdotal evidence. But the poll was pretty straight forward. Just...
Not at all. Perhaps a bit more gas but nothing terrible. Try it and see how it goes....
Hi Halo, Have you tried raw fruits and veggies lately? Sometimes foods that you haven't done well with in the past suddenly become tolerable. As I type, I'm eating an Omega 3 trail mix. Walnuts,...
Hi Miranda, Things will get better. Congrats on staying off the oyxies. I think getting over those wretched drugs will help your healing process....
Hi Mak, I was a stomach sleeper before surgery so I was worried first being able to sleep in another position and also inadvertently rolling over onto my stomach. Neither was a problem. I think I...
Interesting stuff. I agree the study doesn't directly correlate, but I think it presents a reason for more study into stress response and autoimmune disease....
Glad you're doing well Christine. Still a bit concerned about the possible hernia, but the more I research it the more I think it's just a weakening in the muscle wall as opposed to a hernia. Still...
I don't have any experience with your situation, but if he wears a two piece system I would imagine you could discreetly replace the "full" bag with an empty bag and either empty the full bag and...
Good that you're getting it checked out. Several of us including myself have leakage of some sort. Let us know what your doctor says....
Lots of good discussion here. For the first 8 years of UC I was hesitant to take any RX and lacked the discipline to stay on a restricted diet long term, mainly because the symptoms weren't bad...
Depression is definitely a component of UC. My final flare (almost 3 years long) was like being in a prison camp and enduring 24/7 torture every day. Never contemplated offing myself, but didn't fear...
I think whatever you take be it supplements, spices, or even RX meds will probably require playing with the dosage. The symptoms and severities of UC vary so widely as do people's weight, diet, genes...
Exactly Christine. I had one professional tell me that the discharge would be "absorbed" by the body. Umm no, not buying that. My plan is to leave well enough alone unless the surgeon or gastro tells...
I suggest decreasing the dose or number of doses. That's a tremendous amount of iron even for someone that's anemic. Doctors go by protocol not the individual. Not their fault, but sometimes you need...
Halo, I'm sorry to hear your going through this. The situation may resolve itself given some time. It's only been three months since your surgery. Perhaps your body just needs some additional time to...
Not exactly sure but I'm guessing maybe 5 months....
Not formally diagnosed but was researching hernias on the interwebs. Could very well be just a weak muscle protruding and not a tear I suppose. Going to make an appt. to see my surgeon....
Sorry to hear Maddie. I concur with Mak. See a professional before trying any drugs. There may be other ways to deal with your feelings in that setting....
I'm the same as Mak, I feel it when I'm not concentrating on something else. For the first few weeks after surgery I could actually feel the stoma move when output was coming out. Not now though....
Kinda knew that I had the hernia, but I guess I've been in denial. Thought that maybe it was just that I had gained so much weight (about 70lbs since surgery) and thought it might just be fat around...
Yup. I've got one. Boo-hiss. :shakehead: Just ordered a parastomal hernia belt. I have some things I'd like to ask, but need to attend to some things. Any and all suggestions, support would be...
Not eating after 2pm helped limit the number of movements at night for me. Not ideal, but at least you sleep a little better. That sounds like a lot of prednisone. That stuff is great short term but...
Glad to hear that you are feeling better Storm Rider. I hope you're cured. But, UC can go into remission for long periods of time and then suddenly flare again. I had 8 years of varying degrees of...
I use the Coloplast Senura Mio one piece. I like the drainage system of the Coloplast. Seems easier to clean after emptying. I use the opaque bags cause I want to give Monty his privacy and I really...
Sorry to hear about this. Hope things go smoother from now on. Like Clo, I don't have the Jpouch so my advise may not be useful, but if you don't already you may want to start a food journal....
Conner, I'm sorry to hear what you're going through. My story is similar. Keep trying different therapies. Something may work. You've got a lot of life ahead of you. It may not play out the way you...
Hi Happier!, Reading your post just reminded me of how miserable life can be with UC. I suffered for almost three years with the flare from hell, and tried every therapy I could find. But, I don't...
Hope all goes well for you. Entyvio was my hail Mary too or as my gastro said a "rescue therapy". It failed. I decided on a perm ileo and for me it was the right move. I find the appliance to be very...
Sorry you are experiencing such difficulties. I had horrendous pain in my shoulder after surgery. The doctors told me it was from the air they insert into your body during surgery. It went away a...
My ostomy nurse said to cup my hands over the wafer for five minutes when putting on the new appliance because the adhesive is heat activated. I take it a step further and rub my hands together and...
Hi Minimoo, I've never used immodium so I can't help you with that, but I wanted to ask how long you've had your stoma. I found that the first couple months after surgery the output was more watery,...
So IF your surgeon did not reattach your small intestine to your colon (the reversal surgery), and you still have an ostomy, then the discharge from your rectum can not from food. Could be a negative...
Great! Keep us posted on his progress....
Hope all goes well for you and your husband. I predict he'll be back on the courts this Spring!...
Have not experienced anything like that, but I would get the ostomy nurse to come sooner than next week if I were you. Hope it all goes well....
I would suggest just above his waistline and maybe 3 inches right or left of his belly button. That's where mine is and it's working out nicely. An ostomy nurse made sure that the spot was also not...
Wow, this conversation really took some interesting turns! I had lapro surgery too, but I had a small incision just below my bb and I assume that's where they took my colon out from. Woogy, you can...
There does seem to be many more J pouchers than perms. Being a perm myself I still find it interesting and useful to read entries from the entire ostomy spectrum. Gives us all a sense of camaradarie...