Hello my fellow j-pouchers, I just had my reversal surgery on Oct 7, so I'm about a month out from surgery. Things were going great at night for the first 3 1/2 weeks or so, however, for the last...
The first 2 months after my loop ileo, I couldn't gain weight - I ate so much, but didn't gain a pound. After 2 months, that sure changed! Now, I have to watch what I eat a little more so I do not...
Thanks for all of the great information. I was referring to blockages by food - and I'm still unsure if it's that, or gas pains. I've had these pains a few times since this post, and I can usually...
I think part of the reason mine crinkles so much is because my stoma is pretty high up on my stomach. I also have a short torso, so it's basically in the middle of my stomach, not low down. I do find...
Not a blockage..phew! But still so painful. Has anyone else had this sort of thing happen before? I do get quite a few stomach aches, but not sure why......
I use a Hollister 1 piece convex bag as well - love the bag, with the exception of the crinkling! I'll accidentally touch it over my clothes in a meeting and it sounds like I have plastic wrap under...
I wear a belt all the time with mine and I love it. I also haven't had a leak and a almost 3 months out as well (knock on wood!) The belt makes my bag feel secure, especially when it starts to fill...
Hello -how does the pain from a blockage typically feel? I started getting shooting sharp pains in my stomach, mostly on the opposite side of my stoma, then my lower abdomen and now all over. It is...
Thanks for all of the replies! I use a one piece system, so I can't switch the bag at night. I tried a two piece system and didn't like it as much as I found the profile to be a lot bulkier under my...
Hi everyone! Wanted to get some feedback on sleeping...the one thing I was really excited about post-surgery was getting a full night's sleep! Unfortunately, this has not happened yet...and it's been...
Thanks for the info, Liz! I'm likely not having my reversal until the fall, so plenty of time to heal! (phew!) Can a stricture be anywhere? Or is it usually further or lower down? I'm sorry, I hadn't...
Katie - wow. I'm so sorry to hear! That sounds awful. Luckily I wasn't flaring during the barium enema (no colon now!) but have only had scopes while in flares. They sedated me for all except for 1...
Just posting a follow up to this post... I had a scope this morning by my surgeon to check out the jpouch. I told him about the painful xray experience as well as the blood that came out when they...
Hi Marianne - thank you so much for the reply! I asked the radiologist if the tube could have irritated things, and she was pretty certain that it didn't since they used a "baby" soft tube...but what...
Hi all, I just had a barium enema x-ray today to check out the j-pouch and ensure no leaks (done rectally). This is the first time I've had this test, and have a few questions about what happened......
They ended up giving me a 2 pc Hollister pouch to try - the new image lock'n roll drainable pouch with a convex wafer. Fingers crossed it works! The 12in pouches are huge and take up my whole...
UCwhat - Thank you SO much for this great info!! My appointment is in 2 hours, so I will bring the info with me. My issue is very similar to yours - I get the majority of the leakage when I'm lying...
Well...I'm going to have to go back to the stoma nurse tomorrow and tell her she's right.. My output completely ate away at the paste/seal in the appliance I put on (the coloplast with the "gentle"...
Thanks for the info, Liz! I feel that it loosened a bit during the day today. I have my appt with the stoma nurse tomorrow, however may push it another day to see if I can get 3 days from this...
Hi there. I had my surgery April 22, and I am experiencing the same thing. I usually go to the bathroom to pass very watery stool at least 3-5 times a day. I've also had some small food bits pass,...
Thank you for your response! My stoma is very close to the skin. I tried this bag before and had leakage issues with just the seal, so was hoping to try it once more with some added paste to see if...
Hello! I really appreciate everyone's help and responses as I'm learning about this new ileostomy of mine!! I tried to google this topic, but didn't find too much... Is it possible to "suffocate"...
I also haven't noticed anything yet. I have a mirena IUD though, and basically stopped getting my periods with it. I started to get my periods when I went through a UC flare. Interestingly enough, I...
Thanks for your responses. I tried on pants last night, and while everything fits well in the legs/butt...I look like I have a pregnant belly with a bag. Everything looks strange on me because of it...
Hello again! Has anyone with an ileostomy tried the flushable bag liners (for example, colo-majic)? I'm wondering if they work well or not. I couldn't find any recent posts about this... The website...
Hi all, I have a question about post-op swelling. I had step 1 of the 2 step j-pouch surgery. I'm almost 5 weeks post-op (Tues will be 5 weeks) and still have so much swelling in my belly. It's quite...
Eva - I am having the EXACT same issue and it's driving me crazy (I'm 4.5 weeks post op). I went back to the stoma nurse twice and she kept giving me different appliances with larger "bumps" (latest...
Thanks for the replies! I ended up calling the nurse today and went in to see her. She changed my appliance to a pre-cut convatec convex one with a "bump" to help push it out even more. Instead of...
Hello all, I am 4 weeks post surgery (total colectomy with diverting loop ileostomy), and within this last week have had major bag issues. I was using a very basic bag (clip, large bag, with tape on...
Hi there, I would really like to watch this video - especially after reading all of the great comments!! Does anyone have a Canada friendly link for the video? Unfortunately the link to Tosh.O's site...
Hello again - thank you all for your feedback in the previous posts. I have one more question - the water leakage has now turned into a light brown mucous. It happens every night - quite a lot in...
Hi guys, I wrote a separate post, but wanted to ask again on this one - I'm having a similar issue, except it's not as much "mucous-y" as "watery". I'm wearing a pad on the bed, as well as in my...
This is great, thanks so much!!...
Hi there, I'm brand spanking new to the ostomy world. Last week I had to go into the ER, and ended up having my colon taken out. I was very fortunate that the surgeon who performed my surgery was...
I've tried Cortiform, but haven't had too much luck with that. I've also tried 5-ASA enemas, and find it difficult to retain them. I have the best luck with 5-ASA suppositories, however only when I...
Thank you so much for your responses. I must say - since eliminating gluten, I've noticed a huge difference (eliminated it 2.5 months ago), however not enough of a difference since I'm still trying...
I have - Salofalk is 5-ASA (taken oral and rectal). I didn't realize that they are known for being inaccurate prior to taking the tests. Wish I had time to research it prior to committing. Lesson...
Thank you, I appreciate it!...
Hi all, I recently visited a naturopath to see if there is anything they could do as I've exhausted my drug therapy options (Simponi doesn't seem to be working) and surgery is the only thing left. He...
Thanks so much for the advice! I really appreciate it....
I haven't been tested, but haven't had much blood loss, so don't think that's it. However, may be a good idea to test it out. With respect to exercise...I find it difficult to exercise when I'm even...
Hi all, I'm looking for some advice with respect to chronic fatigue. I'm not in a full on flare, however having some symptoms. One of those being waking in the middle of the night to go to...
Hi there! I started Simponi after failing on remicade and humira... I agree - the needle is SO much better than humira!!! I give it to myself in the stomach, and I don't find it too bad. I started it...
I just tried Humira, but only lasted 6 weeks... Unfortunately I didn't see any improvement whatsoever and was getting too sick that I just had to stop it and go on a full dose of prednisone. I was...
Update - Starting Simponi at the end of the week! Fingers crossed that this is the "one"!! I feel very fortunate and lucky - it was declined, but the drug company is going to subsidize it for me...
Good luck all!! Looking forward to hearing how it goes! Fingers crossed that Simponi works :)...
I have been relying on fruit smoothies as I find they don't irritate me as much...sounds like I should be rethinking this!! Sometimes I go for berry smoothies, other times mango/banana/peach. During...
I am in the same boat as you, Indycat! It was just approved in Canada for UC at the end of September, so not many people here have been on it. Fingers crossed that it works (and gets...
Thanks everyone for your help and insight! I think it'll just be a waiting game for the prednisone to fully kick in. Thanks again!...
Thank you for the help! I will look into Bentyl and see if that's something that will help. As for diet, I'm eating fairly bland, however since I've been feeling a little better than I have been over...