I wonder if you could ask if you could take two suppositories a day? Mine are 1 mg pred twice a day. That may help your symptoms more. As I said, when I tried taking one every other day, my symptoms...
Sounds very similar to me. I had my colon removed almost two years ago & then just over a year ago I started flaring in my rectum (my surgeon left this because of my age & gender & because I had...
I'm not an academic, but I'm in academia - I just finished my PhD a couple of months ago and am now continuing as a post-doctoral researcher in the lab. I got sick right in the middle of my PhD and...
I agree with keeping things simple - the less products you use the quicker & easier a change is! I change my bag every time I shower (so every day or two) - I don't think most people on here do this...
I still have my rectum and am flaring in this (I'm on pred suppositories which are partially helping). When this starting flaring, I got my joint pain back also. I have heard of people still getting...
I used to get aches in my abdomen after eating too. I found that it was when I ate a substantial amount - which was less than the portions I eat now, but maybe too much in one sitting post-op. For...
Hi GC, no I don't mind being asked any questions, ask away! When I had my colectomy, my surgeon left my full rectum. There were a few reasons for this; one was that my surgery happened very suddenly...
Hi Christine! :) I haven't thought about using antibiotics for my flare, it was never brought up by my GI either. When I started on the pred suppositories I was in a bad way, so I think it was the...
I have posted about having rectal bleeding. I have my full rectum remaining, and almost a year after surgery, I started flaring in my rectum. I was initially put on asacolon suppositories, they...
Hi Telha! With regard to choice of bags, I'm still using the brand that was given to me when I was in hospital - think I was luckily that they suited me so well from the outset! I did try a couple of...
I had one blockage, about 6 months after I got my stoma. Sounds a bit like what you had, I had no output & could feel my stoma straining to push out stuff. Like yours, mine cleared during the night...
Hi Help! I was diagnosed with UC also, and went through all of the meds very quickly. Literally nothing worked, besides oral pred, which after one course of for 8 weeks, I really never wanted to take...
My mouth to bag transit time varies with what I eat - sometimes it's starting to come out in two hours, sometimes it's 5/6. I'd say on average though with most things it's about 4 hours. Straight...
I didn't have a step 2 surgery, but after my colectomy (your step 1), I had a lot of stomach pain that worsened with eating, as you described. I don't know if your surgery was laparoscopic but mine...
When you apply your seal, are you making sure that it is completely flat against your skin? You need to make sure it is stuck down flat. If it isn't then it can curl up, and as your stoma moves,...
I was put on Imuran for maintenance as I was coming off pred - I instantly got a rash, so was changed to 6MP after just a few days. Unfortunately I developed pancreatitis very quickly from 6MP,...
Yeah I agree, I've done so much over the last year since getting my stoma, I don't actually think it would stop me from doing anything. Which is another reason I want the rectum gone, since it...
Glad everything is back to normal with you! Yes I specifically chose the end surgery. A J-Pouch never appealed to me. I know many people have great successes with them, but I didn't want to take the...
Hi Teddy, I had abdominal pain for probably up to 5/6 months post-op. I noticed it if I ate a "normal" sized meal (as in a normal portion size, but it was too big for me after months of not eating...
Nope, soap or shampoo won't affect your stoma! I was worried initially but my nurse reassured me that it wouldn't be strong enough to do anything. The nurse just said to make sure the water wasn't...
Hi Niks, I can see your picture also, it looks quite painful! Have you showed it to a stoma nurse? I think that would be best. I had very bad skin around my stoma for the first couple of weeks when I...
Vancouver-Girl, my asking if you used disinfectant wasn't questioning your using it - I was asking to see if it was something you always did, or if you're doing it purely because of having an ostomy...
Hi Vancouver-Girl - I'm sorry you're having such problems with coming to terms with your ostomy. And as ByeBye said - vent away, that's what this forum is here for! I found it so much harder mentally...
Thanks for all of your responses! NCOT - I don't want a J-pouch. It never really appealed to me; I know people have great success with them, but I feel like I'd be the person stuck with chronic...
I had my colon removed just over a year ago, having no problems with my stoma at the moment, it's working great. The surgeon left my rectum though. He didn't want to do pelvic surgery on me at the...
To answer your questions (and no, I don't mind at all - ask me anything!): - the amount I empty a day depends on what I eat. Like if I eat a lot of fruit or veg, I seem to have more output. I'd say I...
I don't think I'm long waisted, I would say I'm pretty much in proportion for my size. But my ostomy is quite low on my abdomen - the top of my bag is below my bellybutton, and I use midi-sized bags...
Hi VancouverGirl - I've skimmed the posts and can't offer much advice about a belt because I don't use one, but I wanted to tell you what I do so my bag isn't visible. I'm a similar size to you (5'5"...
I seem to be the lone person with NCOT who prefers the 1-piece! To be honest, I've never properly tried the 2-piece, but I agree with NCOT that the advantages listed don't seem like they would be an...
I was told to avoid mushrooms, whole nuts & sweetcorn. I don't like mushrooms so wouldn't eat them anyway, but I have eaten nuts & sweetcorn in moderation without any problems - just take it very...
Was your surgery laproscopic? If so, you would still be filled with gas a week after! I found the best thing for getting rid of that gas was walking as much as you can. Hot drinks, like tea can help...
Yes I change my appliance every day or two, I think I'm one of the only people here who do it this often though! Just what I got used to & what suits me! When I empty, I sit on the toilet but sit a...
Glad to help Vancouver-Girl! I'm definitely the minority with regard to how often I change my bag. Most people leave their's on for multiple days, up to a week. My personal preference is changing it...
I also can't answer on a lot of what you're asking, I'm not familiar with your medical problems, so can't really comment on surgery options. But I'll give what input I can! My stoma was placed prior...
This actually just happened me a month or so ago too. I'd been using Eakin seals for over 10 months and suddenly got a rash from them. I knew it was a leak or from output because it was far enough...
I didn't have to do any bowel prep before my surgery. I have often wondered this because it seems everywhere I've looked people had to do one but I didn't. I asked my surgeon the day before and he...
Oh gosh, I never though about anything like freezing them. I actually had an appointment in 5 weeks for my GI as a year post-op check up; at my last check up he said he was going to organise a scope...
I don't have plans for future connection - a J-pouch never really appealed to me. I know people have great success with it, but I feel like I have a good stoma and no real problems with it, so don't...
I had my colon removed December of last year but surgeon left my whole rectum. His advice (and my GI's) was to leave it as he didn't want to do any pelvic surgery on me - I had surgery when I was 19...
NSSG, I'm sorry you're going through this, sounds pretty bad. I don't have any advice I'm afraid for dealing with the loop, as I've no experience with it. But with regard to removing your wafer, do...
I actually have a nurse from Coloplast calling to me tomorrow to give me some samples of these bags! I'm very appy with my current set-up, but doesn't hurt to try some other products too!...
I know that feeling - I changed to a different seal last week, and I was still worried about it for the first couple of days, just because it was a slightly different system than what I was used to....
Does it feel itchy or irritated at all? It hasn't happened much, but any time I've had output on my skin, it's felt funny. I was always told that if you're worried about something, change it. But I'm...
Marinmom - I think that's most likely the case, not a virus! To be honest, it took me probably about 6 months before I felt 100% with everything, eating what I wanted, not feeling tired, predictable...
Marinmom, I took a trip to Disneyland Paris for a week when I was 3 months out, and I found that around that time my digestive system still wasn't 100%. It doesn't sound exactly like what you're...
At night, I don't change to a higher output bag (I use a one-piece anyway). I do tend to get up to empty at nighttime though but only once. I don't know exactly what wakes me to empty, I don't know...
I'm sorry to hear about all the trouble you're having Christine. I've read some of your posts before & it does sound awful. I sort of fall into the category you're talking about, except I have my...
I use Dansac Novalife Midi bags - they're only 6-7 inches I think, but perfect for me. I'm not short 5' 5" but my stoma is quite low, but these bags are perfect size; if I just angle slightly to the...
I've flown 3 times so far with my stomas, the longest flight was only 2.5 hours though, but I had zero issues with being on the plane. I thought that it might fill with air or something with cabin...
I clean mine pretty much the same way as Eva. I flatten everything out of the bag & squeeze it out the end. Roll up about 4-5 squares of toilet paper, stick it into the drain part of the bag and...