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dustspeck
Veteran Member


Date Joined Sep 2007
Total Posts : 565
   Posted 9/13/2007 6:16 AM (GMT -7)   
first off, hi & hello to everyone! i'm a 32 year old female and i was diagnosed with crohn's (terminal ileum) 8/8/07 with stricturing. so obviously this is all very new to me. i have been taking 8 pentasa daily which i think has been helping with the d but not so much with the pain i still get. i was put on entocort 3 days ago starting at 3mg, today i am taking 6mg and by saturday i will be up to 9mg for 7 weeks. my dr. left it up to me if i wanted to continue with the pentasa. well, at $25 for a 12 day supply who would want to?! i figured the entocort would be fine on it's own so i stopped taking the pentasa on monday night. well, on monday night i think i may have done something really bad. i ate popcorn. just plain popcorn i popped myself w/ some parmesan cheese. by tuesday morning i was doubled over in pain, normal bm's 2 x's that day. i figured it had to be the popcorn. wednesday, i was worse than tuesday so i decided to start taking the pentasa again. yesterday was a 6 bm day :( mostly d, very crampy & very bloated feeling. it hurt to eat, like it was just sitting in my stomach and intestines, not able to go anywhere. overall i felt like i got hit by a mack truck. i am still feeling a good amount of pain and wondering if i will be able to eat today. so, my questions are. could popcorn really have been the culprit the wreck this much havoc? was me taking myself off the pentasa dumb on my part? could it be my stricture acting up? my dr called yesterday to check in with me and he said he in concerned about the narrowing of my ileum and that if the entocort doesn't help my pain that i will need to speak with a surgeon.

any and all of your help, advice, comments will be truly appreciated!! thanks in advance :)

bektold
Regular Member


Date Joined Jul 2007
Total Posts : 456
   Posted 9/13/2007 6:41 AM (GMT -7)   

Popcorn.  Oh, ouch!  Anything with a husk or a shell can do a number on us.  Popcorn, regular corn, beans, peas, etc.  Everyone has different tolerances (for example, I can have tomatoes but the acid causes problems for others), but a month after diagonsis you probably aren't controlled/healed enough to be trying some of the riskier foods.  I would drop back to a soft or liquid diet and give your guts time to recover.

Does your doctor have you on anything else besides Entocort and Pentasa?  Entocort isn't as harsh as Prednisone, but it's still a steroid meant for limited use to bring things quickly under control.  It's not something anyone should take indefinitely.  Pentasa can be helpful, but it's pretty mild.  I'd talk to the doctor about other treatment options.

Hope you feel better soon!


athensgirl
Regular Member


Date Joined Apr 2007
Total Posts : 254
   Posted 9/13/2007 6:54 AM (GMT -7)   

Welcome to the board!!!  I also have a stricture in my ileum, and believe me, popcorn is a big NO NO!!! It can cause severe problems, even an obstruction.  Try softer foods for a while, at least until you see if you respond well to the treatment.

Christina

 


MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 9/13/2007 6:55 AM (GMT -7)   

Any roughage in stricturing disease is risky. That doesn't mean you have to live on soup, but it helps to think of strictures as narrowings in a drain . . . you don't want to put whole potato peelings down there, and if you do, expect a backup.

Sometimes stricturing is related to actual scarring and narrowing of the intestinal tract, and other times it is from swelling and inflammation. I would guess yours is the latter since you just started treatment, but only time and follow up tests will tell for sure. The only real way for Crohn's patients to tell what foods work for them and which ones are trouble is to eat them and see. You now know something about popcorn.

It may be that your doctor will step you up to some stronger medications in the future, but it makes sense right afger diagnosis to try the meds you have been on and see how you respond. Keep in mind that there are a lot of medications out there for Crohn's, with more being developed all the time, and most people can live a pretty tolerable life with this disease. You will see some horror stories on here, but that really reflects the fact that people with the worst problems tend to come to message boards like this one. Hang in there!


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/13/2007 6:58 AM (GMT -7)   

First off let me welcome you to Healingwell.  There are alot of great and supportive folks here.  Sorry you have to join our club though.  First off, many of us, even those without strictures find popcorn very hard on our systems.  So I would definetly stay away from that, especially since you have a stricture.  As for the Pentasa, I think you shouldn't have quit it.  Sounds like it was helping with the D, so that means it was working.  I take the sister med Asacol and once I stopped taking it thinking it wasn't working, I ended up getting pretty sick, went back on it and got better.  The Entocort is going to take a few weeks to work, don't give up on it yet.  I would much rather take it than the Prednisone, it has less side effects than the Pred.  And lastly, since you have a stricture it might be a good idea to go on a low residue diet.  I live on this diet.  I eat no red meat (very hard for us to digest), I only eat fish, turkey and chicken.  Try to stay away from fast foods and processed foods or foods with preservatives.  With fruits you should stay aways from the peels and seeds.  And all veggies should be cooked until their soft and mushy.  You can google the diet and get some great ideas.  I sure hope you get feeling better soon and look forward to hearing more from you soon.

God Bless,

Gail *Nanners* 


Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


JaSanne
Veteran Member


Date Joined Oct 2006
Total Posts : 2033
   Posted 9/13/2007 7:35 AM (GMT -7)   
Hi and welcome! I won't reiterate the stricture/popcorn info. since it's been well covered. It takes a bit of time to figure out what's okay and what's to be avoided, at least for the meantime. Many of us are old pros and have already learned the hard way, so don't feel embarassed if you eat something that's offending to your system. When I was first diagnosed, I had no access to the internet, so I ordered CCFA's literature, including their People, Not Patients book which had various diets for various stages of the disease, which was a big help for me since I didn't have a great GI to help.

I hope the Entocort will work well for you. I know how hard it can be to pay for the medications even with insurance, so I understand your need to drop the Pentasa. My husband and daughter also have medical problems, so copays can really rack up. -Joy
48 yr. old. Ileocolitis.  CD since early teens, misdx'd until age 36.  Hemicolectomy-left side in 2001.  Disease returned in 2003. Arthritis, episcleritis, chronic pain due to surgeries (nerve damage, adhesions) and disease.  Recently dx'd scoliosis.  History of endometriosis.


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 9/13/2007 7:54 AM (GMT -7)   
Welcome to HealingWell, DS! So sorry you must be here. I don't think either of those together may be enough. (Meds that is). This is nothing to fool with, do what your doc tells you on this one. A stricture can easily lead to surgery..
Are you getting any kind of pain relief ( I didn't see any painkillers or anti-cramping medication listed.) . Gastros are notorious for ignoring or not knowing how to handle pain.

Anyway, welcome again & I hope you feel better soon.

Sincerely,
Matthew

dustspeck
Veteran Member


Date Joined Sep 2007
Total Posts : 565
   Posted 9/13/2007 10:15 AM (GMT -7)   
bektold said...
Popcorn. Oh, ouch! Anything with a husk or a shell can do a number on us. Popcorn, regular corn, beans, peas, etc. Everyone has different tolerances (for example, I can have tomatoes but the acid causes problems for others), but a month after diagonsis you probably aren't controlled/healed enough to be trying some of the riskier foods. I would drop back to a soft or liquid diet and give your guts time to recover.

Does your doctor have you on anything else besides Entocort and Pentasa? Entocort isn't as harsh as Prednisone, but it's still a steroid meant for limited use to bring things quickly under control. It's not something anyone should take indefinitely. Pentasa can be helpful, but it's pretty mild. I'd talk to the doctor about other treatment options.

Hope you feel better soon!


thank you! and nope, those are the only 2 meds i am on right now. i am going to try going back to my low residue diet and tonight i am going to try and plan out some good meals :)

dustspeck
Veteran Member


Date Joined Sep 2007
Total Posts : 565
   Posted 9/13/2007 10:16 AM (GMT -7)   
athensgirl said...
Welcome to the board!!! I also have a stricture in my ileum, and believe me, popcorn is a big NO NO!!! It can cause severe problems, even an obstruction. Try softer foods for a while, at least until you see if you respond well to the treatment.

Christina


thanks christina! that so stinks about popcorn cause i really enjoy it :(

dustspeck
Veteran Member


Date Joined Sep 2007
Total Posts : 565
   Posted 9/13/2007 10:19 AM (GMT -7)   
MikeB said...
Any roughage in stricturing disease is risky. That doesn't mean you have to live on soup, but it helps to think of strictures as narrowings in a drain . . . you don't want to put whole potato peelings down there, and if you do, expect a backup.

Sometimes stricturing is related to actual scarring and narrowing of the intestinal tract, and other times it is from swelling and inflammation. I would guess yours is the latter since you just started treatment, but only time and follow up tests will tell for sure. The only real way for Crohn's patients to tell what foods work for them and which ones are trouble is to eat them and see. You now know something about popcorn.

It may be that your doctor will step you up to some stronger medications in the future, but it makes sense right afger diagnosis to try the meds you have been on and see how you respond. Keep in mind that there are a lot of medications out there for Crohn's, with more being developed all the time, and most people can live a pretty tolerable life with this disease. You will see some horror stories on here, but that really reflects the fact that people with the worst problems tend to come to message boards like this one. Hang in there!


yes, my gi told me there was quite a bit of scarring after my colonoscopy. i never thought that eating something like popcorn could actually clog the narrowing right up! (scary)

thanks so much for the great advice!

dustspeck
Veteran Member


Date Joined Sep 2007
Total Posts : 565
   Posted 9/13/2007 10:27 AM (GMT -7)   
Nanners said...
First off let me welcome you to Healingwell. There are alot of great and supportive folks here. Sorry you have to join our club though. First off, many of us, even those without strictures find popcorn very hard on our systems. So I would definetly stay away from that, especially since you have a stricture. As for the Pentasa, I think you shouldn't have quit it. Sounds like it was helping with the D, so that means it was working. I take the sister med Asacol and once I stopped taking it thinking it wasn't working, I ended up getting pretty sick, went back on it and got better. The Entocort is going to take a few weeks to work, don't give up on it yet. I would much rather take it than the Prednisone, it has less side effects than the Pred. And lastly, since you have a stricture it might be a good idea to go on a low residue diet. I live on this diet. I eat no red meat (very hard for us to digest), I only eat fish, turkey and chicken. Try to stay away from fast foods and processed foods or foods with preservatives. With fruits you should stay aways from the peels and seeds. And all veggies should be cooked until their soft and mushy. You can google the diet and get some great ideas. I sure hope you get feeling better soon and look forward to hearing more from you soon.

God Bless,

Gail *Nanners*


hi nanners and thanks for the welcome and the advice! my gi actually did have me try a low residue diet and i did pretty well on it for a couple weeks. but i have a major problem, i am a foodie too! what worse disease could a foodie get?! i told my people i would rather have lost a leg than have to live on a diet the rest of my life. c'est la vie! i have taken my 2nd dose of pentasa and my 6mg of entocort today and i am feeling a bit better, even after lunch! so hopefully it's working :)

dustspeck
Veteran Member


Date Joined Sep 2007
Total Posts : 565
   Posted 9/13/2007 10:32 AM (GMT -7)   
JaSanne said...
Hi and welcome! I won't reiterate the stricture/popcorn info. since it's been well covered. It takes a bit of time to figure out what's okay and what's to be avoided, at least for the meantime. Many of us are old pros and have already learned the hard way, so don't feel embarassed if you eat something that's offending to your system. When I was first diagnosed, I had no access to the internet, so I ordered CCFA's literature, including their People, Not Patients book which had various diets for various stages of the disease, which was a big help for me since I didn't have a great GI to help.

I hope the Entocort will work well for you. I know how hard it can be to pay for the medications even with insurance, so I understand your need to drop the Pentasa. My husband and daughter also have medical problems, so copays can really rack up. -Joy

thanks for the welcome and suppport joy! i saw popcorn on the low residue diet i am on and said to introduce some foods back and i had been feeling pretty good so i figured i would give it a whirl. i guess it's all trial and error! still stinks though :/ i am feeling pretty positive about the entocort. hopefully it will come through for me :)

dustspeck
Veteran Member


Date Joined Sep 2007
Total Posts : 565
   Posted 9/13/2007 10:39 AM (GMT -7)   
Matthew said...
Welcome to HealingWell, DS! So sorry you must be here. I don't think either of those together may be enough. (Meds that is). This is nothing to fool with, do what your doc tells you on this one. A stricture can easily lead to surgery..
Are you getting any kind of pain relief ( I didn't see any painkillers or anti-cramping medication listed.) . Gastros are notorious for ignoring or not knowing how to handle pain.

Anyway, welcome again & I hope you feel better soon.

Sincerely,
Matthew


thanks for the welcome matthew! it's just nice to know there are people out there with the same problem and i am thankful i am not as bad off as some people. scary stuff for sure.

i am not on any pain meds. when i first was diagnosed i was put on ativan for my moments of freaking out and i am also on trazodone for sleep. i already had trouble sleeping but before i was diagnosed and while going for all my crazy testing i was in some severe pain and it would wake me up a lot. once when i was having an attack, my friend gave me a vicodin and it didn't seem to help me much. i guess that is something i could ask my gi about though for times like these.

malakai
Regular Member


Date Joined Aug 2007
Total Posts : 277
   Posted 9/13/2007 10:57 AM (GMT -7)   
Glad that you are feeling a lil bit better now dustspeck. Hopefully little by little you'll get to the point before you ate the popcorn at least. I agree with them to ease up on the type of foodage for a little while to give you tum tum time to rebalance.

Yeah I'm a newbie (diagnosed also in August) foodie too and I know what you mean about rather getting a leg cut off than this. Our society is so food driven it's sometimes torture. I'm really not looking forward to thanksgiving or christmas. This past Sat I went to a BBQ and normally I am very careful what I eat. My last happie normal meal was july 20th. Well I ate like I had never seen food before and have been paying for it all week. I had normal polska kielbasa sausages. 2 of them at one time (normally I would eat a non nitrate containing chicken sausage/chicken hotdog and wait for 1/2 hour to an hour before eating something else), then had 2 grilled chicken breasts. (should have only had one) had 3-4 c of sparkling apple cider and TWO cupcakes with cream cheese frosting and crackers and brie. and yes, I LOVE popcorn too and have been eyeing them this past couple of months but haven't followed through with it cause I'm scared. It's hard esp when you ate it before.

Like they all said, it's trial and error and now we know. It's just such a painful price. yawwwoza

Take care
Newbie - 35 yrs old Diagnosed: 08/03/07
Meds Asacol 3x day


dustspeck
Veteran Member


Date Joined Sep 2007
Total Posts : 565
   Posted 9/13/2007 11:25 AM (GMT -7)   
malakai said...
Glad that you are feeling a lil bit better now dustspeck. Hopefully little by little you'll get to the point before you ate the popcorn at least. I agree with them to ease up on the type of foodage for a little while to give you tum tum time to rebalance.

Yeah I'm a newbie (diagnosed also in August) foodie too and I know what you mean about rather getting a leg cut off than this. Our society is so food driven it's sometimes torture. I'm really not looking forward to thanksgiving or christmas. This past Sat I went to a BBQ and normally I am very careful what I eat. My last happie normal meal was july 20th. Well I ate like I had never seen food before and have been paying for it all week. I had normal polska kielbasa sausages. 2 of them at one time (normally I would eat a non nitrate containing chicken sausage/chicken hotdog and wait for 1/2 hour to an hour before eating something else), then had 2 grilled chicken breasts. (should have only had one) had 3-4 c of sparkling apple cider and TWO cupcakes with cream cheese frosting and crackers and brie. and yes, I LOVE popcorn too and have been eyeing them this past couple of months but haven't followed through with it cause I'm scared. It's hard esp when you ate it before.

Like they all said, it's trial and error and now we know. It's just such a painful price. yawwwoza

Take care

it's painful that i love food so much and it doesn't love me back. :::shakes fist at food::: maybe once my meds kick in full gear i will try to introduce some new foods back into my diet. for now i am going to try and stick to my low residue diet (blarg) and try and make some interest meals at least.

nice to hear someone else has the same passion i do for food and understands my pain!!

queeniefosho
New Member


Date Joined Aug 2007
Total Posts : 19
   Posted 9/13/2007 11:27 AM (GMT -7)   
Welcome! I'm pretty much a newbie here too, but I've found this to be a great board with a lot of fabulous and helpful people! By the way, popcorn always does a number on me too.

dustspeck
Veteran Member


Date Joined Sep 2007
Total Posts : 565
   Posted 9/13/2007 11:49 AM (GMT -7)   
queeniefosho said...
Welcome! I'm pretty much a newbie here too, but I've found this to be a great board with a lot of fabulous and helpful people! By the way, popcorn always does a number on me too.


thanks for the welcome! i am very happy i found this place. i tried some livejournal boards but they are pretty quiet. this place seems to be booming!

belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 9/13/2007 12:06 PM (GMT -7)   
Hi Dustspeck:

I see it's only been a month since diagnosis and beginning medication. First of all pentasa is an anti-inflammatory and it takes awhile to build the therapeutic levels of medication up in your body, usually as long as six-weeks to two months. Despite its cost, I wouldn't stop Pentasa now, especially while you are still ramping up your dose of entocort. Each person responds to medications differently so you will have to become a bit of an investigator in order to work effectively with your health care team. Keep track of how your symptoms correlate to your drugs and changes in their doses. You have seen a marked increase in symptoms since you stopped Pentasa. It may or may not be because you stopped the drug, but you have already discovered one important thing -- for you at this point in your disease, high fibre roughage like popcorn is a no-no.

While entocort is a non-systemic form of steroid, it is still a steroid. First of all it doesn't treat the disease it only treats its symptoms. Secondly, it can lead to unwanted complications in the long term. People using steroids for long periods are at increased risk of developing diabetes and osteoporosis and they can become steroid-dependent, meaning that their own bodies stop producing the natural hormones that are in steroids.

The good thing about steroids is that they usually work quickly to reduce symptoms. Doctors usually give them in combination with other drugs at the beginning of treatment until those other medications have a chance to kick in. They don't, however treat the underlying disease.For that reason, and because of the potential for adverse effects, usually once the other drugs have had a chance to work and remission has been acheived, most physicians will then slowly wean their patient off the steroid.

That's where the anti-inflammatories, like Pentasa, and the immuno-modulators (Remicade) and immuno-suppressants (azathioprine) come in. Pentasa is a good entry level drug and it induces remission in many people. If it does not work, there are stronger medications your physician can then step up to.

Good luck as you begin your journey of discovery with crohn's disease. It isn't a journey any of us would have chosen, but many of us have learned to integrate the disease into our lives and have found ways to view the experience positively. I know it has taught me many valuable lessons in the last 30 years.

Cheers
Belleenstein:

30+ years living with Crohn's.


dustspeck
Veteran Member


Date Joined Sep 2007
Total Posts : 565
   Posted 9/13/2007 12:50 PM (GMT -7)   
belleenstein said...
Hi Dustspeck:

I see it's only been a month since diagnosis and beginning medication. First of all pentasa is an anti-inflammatory and it takes awhile to build the therapeutic levels of medication up in your body, usually as long as six-weeks to two months. Despite its cost, I wouldn't stop Pentasa now, especially while you are still ramping up your dose of entocort. Each person responds to medications differently so you will have to become a bit of an investigator in order to work effectively with your health care team. Keep track of how your symptoms correlate to your drugs and changes in their doses. You have seen a marked increase in symptoms since you stopped Pentasa. It may or may not be because you stopped the drug, but you have already discovered one important thing -- for you at this point in your disease, high fibre roughage like popcorn is a no-no.

While entocort is a non-systemic form of steroid, it is still a steroid. First of all it doesn't treat the disease it only treats its symptoms. Secondly, it can lead to unwanted complications in the long term. People using steroids for long periods are at increased risk of developing diabetes and osteoporosis and they can become steroid-dependent, meaning that their own bodies stop producing the natural hormones that are in steroids.

The good thing about steroids is that they usually work quickly to reduce symptoms. Doctors usually give them in combination with other drugs at the beginning of treatment until those other medications have a chance to kick in. They don't, however treat the underlying disease.For that reason, and because of the potential for adverse effects, usually once the other drugs have had a chance to work and remission has been acheived, most physicians will then slowly wean their patient off the steroid.

That's where the anti-inflammatories, like Pentasa, and the immuno-modulators (Remicade) and immuno-suppressants (azathioprine) come in. Pentasa is a good entry level drug and it induces remission in many people. If it does not work, there are stronger medications your physician can then step up to.

Good luck as you begin your journey of discovery with crohn's disease. It isn't a journey any of us would have chosen, but many of us have learned to integrate the disease into our lives and have found ways to view the experience positively. I know it has taught me many valuable lessons in the last 30 years.

Cheers


-wow-

thank you so much for all the awesome and very useful information. it's been quite a journey already and i am still in kind of a daze that i am going to have to deal with this for the rest of my life and what's going to happen next and just wondering how much worse or better this disease is going to get. it's really nice to find a community of people to talk to. otherwise, i would be driving my gi NUTS!
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