Wondering if I'll ever be able to .....

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Veteran Member

Date Joined Dec 2010
Total Posts : 3332
   Posted 3/31/2011 7:56 AM (GMT -6)   

Today I'm five weeks out of surgery. Healing slowly due to complications, but getting better.... Of course, no one can answer definitively for me, but these are some of the things I'm wondering if I'll be able to do when I'm better, and perhaps some of you who are further along have thoughts you'd like to share:

1) Eat mushrooms. Last night I had a potato and cheese quesadilla, yummy, even with no salsa etc, but I used to get it with portabella mushrooms, which was even more yummy. Not huge in the scheme of things, but I see how mushrooms are hard to chew, absorb liquid, and would make good stoma plugs. My companions wondered if I could ever eat them again, and I didn't know.

2) Sleep through the night. I am getting up around twice to pee and empty the bag. It's way better than it used to be since this takes five minutes and I usually go right back to sleep, whereas it used to take forever and then I'd go back to bed for two minutes and realize I wasn't done, repeat, etc. But I wake up other people in the house, and that's not good..... I probably could do better with tweaking what I eat and drink at night, and I hope I won't need as much sleep later.... but it's still hard for me to see that I'll make it all the way through..... would those gel things help?

3) Get a massage lying face down. Just not sure whether this is a good idea w/pressure on the stoma.

4) Get my period again...... I'm 48 was perimenopausal before surgery, but I'm about three weeks late now and have never been that late before. I'd be happy if the answer was no. Just wondering if anyone who had the surgery around the same age accelerated "the change" or if this is just wishful thinking on my part.


Veteran Member

Date Joined Feb 2010
Total Posts : 720
   Posted 3/31/2011 8:36 AM (GMT -6)   
I have eaten mushrooms since surgery, but just cooked in a crock pot or spaghetti sauce. Also haven't had much trouble with the canned ones. Haven't tried fresh ones yet. I was so worried about all the things I might not be able to eat and the only problem I have had yet was with some Xylitol in a sugar free dessert... gave me instant diarrhea. Black beans, lentils, cooked broccoli, chocolate, popcorn, soda, sugar, chewing gum, pizza, sausage, steak, a few squares of canned pineapple, pickles, tomatoes, green peppers, have all been fine as long as I chew well. I am still avoiding things like corn, raw carrots, raw broccoli and firm Chinese veggies as those were the ones my surgeon said to really avoid. I have been scared of salad, but had my first one (mainly spring mix type lettuce) and had no issues. I just try things slowly and see what happens. My bag seems to fill with a little gas no matter what, but I haven't seen any major difference when I eat gassy foods like beans.

I do always have to get up to empty in the middle of the night once. Doesn't seem to matter whether I eat at 4 p.m. or 9 p.m. It is always the same (which I am glad for because it is impossible to eat by 6 p.m. with my work schedule). I just try not to worry about it. Now that I am more efficient with emptying it goes fast and I just head back to bed. I am not looking forward to emptying in the middle of the night on backpack trips though when I have to wander out into the darkness to dig a cathole a ways from camp:) I am hoping in these cases maybe I can just get up and let the gas out of the bag and save the output until the morning, since the gas seems to be what makes my pouch balloon up the most at night causing me to want to empty it so it doesn't pop:)

I don't think laying on your belly for a massage would be a big deal as long as you empty your pouch first. That is what I plan to do when I start going in for massages again. Definitely won't hurt your stoma once you are healed.

I am 38 and am still having periods, but it did take about 3 months for my cycle to get back to normal after surgery.

I know the healing part can seem so slow with complications when you are in the middle of it... took me four months and I am just now feeling good. But once you are healed and feeling better and you look back, it really does seem like a blink of an eye.
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 infusion of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

Veteran Member

Date Joined Oct 2009
Total Posts : 1054
   Posted 3/31/2011 8:38 AM (GMT -6)   
I don't know about the other answers, but yes, you can lay down on your stomach for a massage!
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

Regular Member

Date Joined Aug 2008
Total Posts : 33
   Posted 3/31/2011 9:14 AM (GMT -6)   
I've had my Ileostomy for 22 years...eat most everything, but sometimes pay the price afterwards. The only things I really avoid are fresh hard veggies...carrots, corn on the cob, chinese veggies...etc. I love mushrooms and so far they haven't been an issue...moderation is the key.
I get up twice a night...2 am and again around 4:30....been that way forever...takes just moments and then back to sleep...you'll get used to it.
massages...love em....never had any problems....chiropractor too...made me wonder a few times as they tend to exert and twist, but no problems....
last question...sorry...out of my field :)
like most things we have to go through...the ileo is just a matter of setting your mind that it's not a punishment, or something to be ashamed of...took me a long time to get there, but that long ago, there wasn't a whole lot of support.
oh...one thing to really be cautious with is hot tubs...any longer than 40 min and the adhesive backing on the wafer...well, you get the idea.
hope this helped
Crohns since age 6...46 now.
No meds ever worked, 37 surgeries since age 11, intestines have ruptured 3 times. no large, very very little small left. Illeo since 89

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 3/31/2011 10:03 AM (GMT -6)   
1. mushrooms, i eat them on pizza sometimes, not a big fan so i don't really know
2. sleep through the night, i have never in my entire life slept through the night unless im drugged, i have to pee, or my kid has something super exciting he must tell me at 2am, or such and such, so i don't know.
3. massage, i dont see why not, i sleep on my stomach and lay on my stomach for other things, like by the pool or whatever.  like they said, just empty first, maybe take some immodium so you won't have anyoutput
4. period, mine was such a mess i had it all the time, like nonstop, literally!  i ended up with a mirena just to stop it. 
And on the hottub, i have stayed in ours for hours on end and had no problems, it probably has to do with how good of a seal you  have in the first place or how hot the water is.  Now i will say, we got in a friends and it had way too much chlorine, so much that it actually ate at the plastic!  but in mine at home, ikeep the chemicals correct and the temp 99-101 and havent had a melting problem, so far anyway

Regular Member

Date Joined Nov 2010
Total Posts : 111
   Posted 3/31/2011 10:26 AM (GMT -6)   
1. I'm ten weeks post surgery and I eat mushrooms all the time, haven't had a problem yet!

2. Are you emptying the bag because of gas? I got up to do that for a long time too, but now I "burp" the pouch by pulling it off the ring in one tiny spot to let the gas out. Only possible with a 2 piece of course. But you can also buy Osto EZ Vents that allow you to let gas out of any pouch.

4. I'm 18 and haven't had my period since surgery. Mine has always stopped whenever anything big changed in my body (UC flare, kidney stone, now surgery) so it's not surprising for me.
Diagnosed with UC in 2007
Flare in 2007 causing anemia requiring blood transfusions, eventually controlled by asacol and 6-MP.
Flared again in 2009 as 6-MP lost effectiveness, went on TPN and received more blood. Started Remicade, which induced remission.
Flared 2010; Remicade no longer effective.
Had 1st surgery of 3 step j-pouch at CC on 1/19/11. 2nd slated for April, and j-pouch in July!

Veteran Member

Date Joined Feb 2011
Total Posts : 1059
   Posted 3/31/2011 11:08 AM (GMT -6)   
I don't eat mushrooms anymore after having a blockage caused by a lagge chewy field mushroom a few years ago but every one is different and plenty of other people eat them with no problems. Ironically that is the only thing to cause me a problem, raw veggies are all fine.

I can sleep through the night and used to before the flare I just had and am still having to get up once to empty bag as high output and like another person said it doesn't seem to matter what time I eat or what I eat.

I have had massages but I cannot lie flat on my stomach, so I get the massuese to give me a small pile of towels and make a sort of bridge with a gao in the middle for the stoma to fit into and that works fine and the masseuse was fine with it.

My periods only stopped when I am very light weightwise, aprt from that they stay fairly regular. Can get bit unsettled after surgery but soon settle back down.

We have a hot tub and has never caused a problem with the bag or wafer. I've spent much longer than 40 mins in our hot tub and on sunny days can be in and out of it all day. Think it depends what chemicals you have in there and what strength.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

Veteran Member

Date Joined Apr 2009
Total Posts : 587
   Posted 3/31/2011 11:55 AM (GMT -6)   
I am getting my second massage today since surgery. The first time they had me put my appliance in the pillow they use for pregnant ladies. It worked well.

I love mushrooms and have been enjoying them cooked.
Diagnosed 2006. 1st step of 2 step j-pouch 1/3/11. 2nd step will be in April! So done with this disease.

Another UC wife
Veteran Member

Date Joined Jun 2007
Total Posts : 2111
   Posted 3/31/2011 2:04 PM (GMT -6)   
Hubby doesn't like mushrooms but does like escargots but has decided not to be bothered with them any more. A friend had a blockage with a mushroom so that kind of convinced hubby to skip the escargots.

He gets up twice a night to pee so checks and empties the pouch then. He has no trouble falling back to sleep fortunately. A close friend has a husband with prostate issues and is up routinely 5-6 times a night! Fortunately he falls right back to sleep too.

I like the idea of the pillow used for pregnant women when getting a massage...that would be a help. Of course an empty pouch before the massage would be a definite thing to do.

Last week was the very first time he had a problem....I got shrimp chow mein - no celery - told them to cook it on the softer and less stir fry side. As he ate it, although it was good it was a bit mushy, plus the fried rice and he also ate potato chips that night. Well..........first time everything "pancaked" and I think got a bit backed up as he has too much stuff that thickened everything quickly. That was a fun night! Kind of a blow out situation....so thankful we were home. Needless to say we won't do that again.

He is not a big eater overall but it seems from dinner time on is when more is consumed and definitely need to spread things out a bit better especially depending on the types of food involved.

Still learning like everyone else....I absolutely love mushrooms so I would need to find a way "in moderation" to keep being able to enjoy them. Obviously with those...one really needs to chew, chew, chew.
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

Veteran Member

Date Joined Dec 2010
Total Posts : 3332
   Posted 3/31/2011 4:00 PM (GMT -6)   
Thanks for all your responses, really appreciate it.

1) I guess I'll just have to see with the mushrooms..... I like them a lot, and they were something I could eat when I was very limited, but I am enjoying things like cheese and wheat that I couldn't eat for a long time. I'm going to wait a while before I try risky foods again.

2) Sigh on sleeping through the night. It's also been a few years since I've slept through the night, and it really doesn't bother me that much to get up, since it's so quick and I go right back to sleep.... but the bedrooms and bathroom are all close together, and I often wake up my partner and sometimes her daughter, and we were hoping the surgery might stop that, as they don't always go right back to sleep... it's not just gas, but I'd like to try the ez vents anyways. I probably slept the longest in a while last night -- didn't wake up until almost 2 for the first time, and the bag was really full.

3) Excellent re the massage.... I can handle a pregnancy pillow..... I think it's probably premature now, as my butt wound is such a mess still, and I think a lower back massage would tug at it.... but something to look forward to (aside: I figured out how to get massage covered by flex spending -- doctor needs to say the name of your condition, say that it's chronic, worsened by stress (um, what isn't), that it's "medically necessary" to control your stress, and that s/he recommends massage ... the exact phrase "medically necessary" is important)

4) Helpful to know that a lot of women have periods disrupted by the surgery. Elddie, ten weeks after surgery at 18 sounds extreme to me, not that I know, have you mentioned this to a doctor? I used to occasionally be late with a bad flare, and periods certainly made my flares worse, but this feels different....

Regular Member

Date Joined Nov 2010
Total Posts : 111
   Posted 3/31/2011 6:56 PM (GMT -6)   
Hey thanks for your concern blueglass, but I'm not worried at all yet. When I would have UC flares my period would stop for the entirety of the flare and wouldn't return until maybe three months afterwards. My ovaries just don't like it when medical stuff goes on in my body, I guess. I suppose I'll talk to a doctor if it stays absent for much longer. :)
Diagnosed with UC in 2007
Flare in 2007 causing anemia requiring blood transfusions, eventually controlled by asacol and 6-MP.
Flared again in 2009 as 6-MP lost effectiveness, went on TPN and received more blood. Started Remicade, which induced remission.
Flared 2010; Remicade no longer effective.
Had 1st surgery of 3 step j-pouch at CC on 1/19/11. 2nd slated for April, and j-pouch in July!

Equestrian Mom
Veteran Member

Date Joined Mar 2008
Total Posts : 3115
   Posted 4/1/2011 5:49 AM (GMT -6)   
1. Yes. Just chew well, and like it was mentioned, don't over eat them. I eat them just about everyday (cooked) and the only issue I have is that it thickens my output if over eat them.

2. Yes. But it may need some help. I sleep about 7-8 hours a night and eat a diet pretty high in fiber. Fiber supplements help if you cannot eat the actual foods. By bulking up you output it slows down a little. Imodium would also help with slowing it down. Maybe you could try one pill with dinner and see if that slows things down enough so you only have to get up once?

3. Yes. If it's uncomfortable, use a towel or their special pillow.

4. Could be. Surgery itself is hard on our systems and I think I've experienced more symptoms since my proctocolectomy. But for me, that coincided with my 40th birthday.

Remember, it takes a body a full year to fully recover from surgery. Things might be a little off for a while.
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

Veteran Member

Date Joined Oct 2008
Total Posts : 938
   Posted 4/1/2011 3:03 PM (GMT -6)   
I'm too new to answer your questions, but wanted you to know that if you go to the manufacturer web site for the ez vent, they have an email address where you can request a sample. They are sending me one. :)

Veteran Member

Date Joined Dec 2010
Total Posts : 3332
   Posted 4/1/2011 4:07 PM (GMT -6)   
Edgepark is sending me a sample, so that works too. Hope you're doing well, run4...
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