20% of people with UC actually have Crohn's-colitis

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Sara14
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Date Joined Mar 2007
Total Posts : 4188
   Posted 6/14/2018 1:10 AM (GMT -6)   
Thanks for the info. Im same as you for risk factors. Im in so much pain I only slept 3 hours after taking a pain pill.
34 years old; diagnosed March 2007.
Latest scope: 9-29-16: mild-to-moderate chronic and active proctosigmoiditis (infectious cause). Battled reoccuring campylobacter & c diff. Oct-Dec 2016. Healthy since Dec. 25, 2016 until I started smoking May 2018.
Current meds: Delzicol, 6, 2xday; Rowasa nightly; singular and Allegra for allergies; Xanax. Have tried Bentyl, Donnatal, and Levsin; dont help.

Bull101
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Date Joined Feb 2015
Total Posts : 539
   Posted 6/14/2018 6:45 AM (GMT -6)   
70 people is a pretty small sample size. Also the 13% is interesting for that sample size. 13% of 70 is 9.1. How do you get 0.1 people? I guess they rounded?

Is there any other literature?

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 12516
   Posted 6/14/2018 7:08 AM (GMT -6)   
Sara14 said...
What's the cost of Remi after insurance?
The key thing, whether you choose humira or remicade, is to sign up for the drug manufacturer's copay/deductable assistance program. They cover most of the copays and deductibles you'd otherwise be responsible for, often limiting your out-of-pocket to as little as $5.00. There's one caveat, those rebates only apply to the medication cost itself and not to any cost of administering the medication (mostly a remicade thing, as humira is self-administered) but I'll get to that in a minute. Here's links on the programs (I've used RemiStart for multiple years, works great and has saved me a countless amount):

Humira: www.myhumira.com/InsuranceHelp/FAQ.aspx

Remicade: www.remistart.com/

What do the medications cost? They're expensive brand names, considered injectable-medications under insurance policies that are ordered from one of only several mail-order, specialty Pharmacies (Expressscripts, CVS Caremark, etc.), and have a lot more complex billing than your usual copays/deductables from your local pharmacy for pill-based prescriptions. It's common to have a $150.00 to $250.00 copay for each month's dose, but if you use an assistance program then that can be $5.00. You might have a deductible that applies at the start of each policy year that applies (a few hundred to a thousand or so dollars), and the assistance program pays for that deductible as well down to $5.00 (meaning if you later need a colonoscopy then that yearly deductible is now gone thanks remistart lol).

If you are interested in estimated costs of Remicade, here is what I got in my explanation of benefits (EOB) a while back (does not include what my insurance covered):

___CPT Code_____Description________Cost
1.) n/a__________Saline Injection_____$ 24.00
2.) n/a__________IV Pump/filter fee___$151.00
3.) 96413________Infusion 1st hour___$258.00 (nurses time to monitor me)
4.) 96415________Infusion 2nd hour___$ 93.00 (nurses time to monitor me)
5.) J1745________Injection, Infliximab‎__($2,500 per vial of 100ml) X 4 vials
---------Grand Total-----------------------$10,526

RemiStart assistance would only cover copays/deductibles for item #5 in the above, which is by far the largest portion of the bill ($2,500 x 4 units = $10,000). If you accrued out-of-pocket costs for items 1 thru 4 then they are yours to pay. In the case of remicade at maintenance dosing, this bill would be recurring every 8 weeks (most common frequency). The initial loading doses are more closely spaced together at weeks 0, 2, and 6 (and then every 8-weeks thereafter in maintenance mode).

Note: remicade is weight-based dosing. I weight 155 lbs or 70 KG. For each KG of body weight I would be given 5mg/ml. Each vial contains 100 mg/ml of medication. So it would be (70X5)/100=3.5 vials amount would need. They always round up, so I am billed for the full fourth vial.

Humira, everyone receives the same dosage initially regardless of body weight. Patient response dictates whether you need more/less Humira. Humira is self-administered via the humira pen (after a nurse shows you how), so there's no reoccurring fees for a nurse at every injection. Humira tends to be a little bit cheaper as a consequence thereof, and often insurance insists on it over remicade. Remicade is anecdotally a little better in results (reiterated by many, present party included), but never proven beyond a reasonable doubt in scientific literature.

I never claim any med is side effect free. There's risk in everything, but generally the benefits far outweigh those risks. I know you said you've researched side effects some and here's my favorite read/watch on them, which actually gives the odds of side effects (something the medication insert does not). Helped me greatly when initially considering going on these meds. Statistics on risks/benefits from the Crohn's and Colitis Foundation of America:
Webcast: programs.rmei.com/CCFA139VL/presentation/player.html
Transcript: http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

Post Edited (iPoop) : 6/14/2018 7:47:59 AM (GMT-6)


iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 12516
   Posted 6/14/2018 7:23 AM (GMT -6)   
DBwithUC said...
there is literature to support 20% +/- - the literature is small.
Thanks DB!

DBwithUC
Veteran Member


Date Joined Feb 2011
Total Posts : 4104
   Posted 6/14/2018 8:18 AM (GMT -6)   
Bull101 said...
70 people is a pretty small sample size. Also the 13% is interesting for that sample size. 13% of 70 is 9.1. How do you get 0.1 people? I guess they rounded?

Is there any other literature?



there are studies who cite those studies that may add a bit. But the general proposal that 1/5 or 1/6 of people with severe cases do get a diagnosis change. Often after surgery, but sometimes before.

The work to find predictors of having a change is good work that may help lower Chrons after surgery.

I will keep eyes open for new studies on change of diagnosis

Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4188
   Posted 6/14/2018 9:09 AM (GMT -6)   
iPoop said...
Sara14 said...
What's the cost of Remi after insurance?
The key thing, whether you choose humira or remicade, is to sign up for the drug manufacturer's copay/deductable assistance program. They cover most of the copays and deductibles you'd otherwise be responsible for, often limiting your out-of-pocket to as little as $5.00. There's one caveat, those rebates only apply to the medication cost itself and not to any cost of administering the medication (mostly a remicade thing, as humira is self-administered) but I'll get to that in a minute. Here's links on the programs (I've used RemiStart for multiple years, works great and has saved me a countless amount):

Humira: www.myhumira.com/InsuranceHelp/FAQ.aspx

Remicade: www.remistart.com/

What do the medications cost? They're expensive brand names, considered injectable-medications under insurance policies that are ordered from one of only several mail-order, specialty Pharmacies (Expressscripts, CVS Caremark, etc.), and have a lot more complex billing than your usual copays/deductables from your local pharmacy for pill-based prescriptions. It's common to have a $150.00 to $250.00 copay for each month's dose, but if you use an assistance program then that can be $5.00. You might have a deductible that applies at the start of each policy year that applies (a few hundred to a thousand or so dollars), and the assistance program pays for that deductible as well down to $5.00 (meaning if you later need a colonoscopy then that yearly deductible is now gone thanks remistart lol).

If you are interested in estimated costs of Remicade, here is what I got in my explanation of benefits (EOB) a while back (does not include what my insurance covered):

___CPT Code_____Description________Cost
1.) n/a__________Saline Injection_____$ 24.00
2.) n/a__________IV Pump/filter fee___$151.00
3.) 96413________Infusion 1st hour___$258.00 (nurses time to monitor me)
4.) 96415________Infusion 2nd hour___$ 93.00 (nurses time to monitor me)
5.) J1745________Injection, Infliximab‎__($2,500 per vial of 100ml) X 4 vials
---------Grand Total-----------------------$10,526

RemiStart assistance would only cover copays/deductibles for item #5 in the above, which is by far the largest portion of the bill ($2,500 x 4 units = $10,000). If you accrued out-of-pocket costs for items 1 thru 4 then they are yours to pay. In the case of remicade at maintenance dosing, this bill would be recurring every 8 weeks (most common frequency). The initial loading doses are more closely spaced together at weeks 0, 2, and 6 (and then every 8-weeks thereafter in maintenance mode).

Note: remicade is weight-based dosing. I weight 155 lbs or 70 KG. For each KG of body weight I would be given 5mg/ml. Each vial contains 100 mg/ml of medication. So it would be (70X5)/100=3.5 vials amount would need. They always round up, so I am billed for the full fourth vial.

Humira, everyone receives the same dosage initially regardless of body weight. Patient response dictates whether you need more/less Humira. Humira is self-administered via the humira pen (after a nurse shows you how), so there's no reoccurring fees for a nurse at every injection. Humira tends to be a little bit cheaper as a consequence thereof, and often insurance insists on it over remicade. Remicade is anecdotally a little better in results (reiterated by many, present party included), but never proven beyond a reasonable doubt in scientific literature.

I never claim any med is side effect free. There's risk in everything, but generally the benefits far outweigh those risks. I know you said you've researched side effects some and here's my favorite read/watch on them, which actually gives the odds of side effects (something the medication insert does not). Helped me greatly when initially considering going on these meds. Statistics on risks/benefits from the Crohn's and Colitis Foundation of America:
Webcast: programs.rmei.com/CCFA139VL/presentation/player.html
Transcript: http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf


Wow -- thank you so much! This is amazingly helpful information. I really appreciate it. I am going in to do my chest x-ray today, and my GI's nurse said she is going to start pre-auth for both Remicade and Humira to see if my insurance will cover one of them.

I woke up feeling a little better. I quit smoking yesterday. It must be from that. If I get better quickly, I don't know if I should still do Remicade/Humira or not.

Thanks again for all the info. And thanks, DB, as well for the info. you shared.
34 years old; diagnosed March 2007.
Latest scope: 9-29-16: mild-to-moderate chronic and active proctosigmoiditis (infectious cause). Battled reoccuring campylobacter & c diff. Oct-Dec 2016. Healthy since Dec. 25, 2016 until I started smoking May 2018.
Current meds: Delzicol, 6, 2xday; Rowasa nightly; singular and Allegra for allergies; Xanax. Have tried Bentyl, Donnatal, and Levsin; dont help.

subduedjoy
Regular Member


Date Joined Dec 2012
Total Posts : 120
   Posted 6/14/2018 2:20 PM (GMT -6)   
Yes. Crohn's and ulcerative colitis manifest in the colon differently. Ulcerative colitis is superficial and continuous. Crohn's is deep and patchy. Indeterminate colitis (IC) is when doctors can't tell.

I have what looks like ulcerative colitis. But I also get extra-intestinal inflammation, so I wouldn't be surprised if I developed inflammation elsewhere in my digestive tract if I no longer had a colon.
Paleo and SCD diets: Lots of vegetables, fruits, fish, coconut yogurt smoothies, and meaty bone broth soups. Anti-inflammatory supplements, probiotics, digestive enzymes. Meditation, breath regulation, and exercise.

Systemic chronic microscopic inflammation, including the kidneys.

ACE Fitness Nutrition Specialist

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 12516
   Posted 6/14/2018 2:39 PM (GMT -6)   
"I woke up feeling a little better. I quit smoking yesterday. It must be from that. If I get better quickly, I don't know if I should still do Remicade/Humira or not. "

I'd recommend getting the tests done, just in case you need to get it. We have good days and bad days, you can always give it a week or two and see what your average baseline is, and then decide. As nobody wants to take something they do not need. If you do need it then you will know for certain! Cheers!

Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4188
   Posted 6/14/2018 3:55 PM (GMT -6)   
Yep, I got them done this morning and am going to do just that. Thanks!
34 years old; diagnosed March 2007.
Latest scope: 9-29-16: mild-to-moderate chronic and active proctosigmoiditis (infectious cause). Battled reoccuring campylobacter & c diff. Oct-Dec 2016. Healthy since Dec. 25, 2016 until I started smoking May 2018. Started 50 mg pred 6-9-18 & re-quit smoking 6-13-18. Maintenance meds: Delzicol, 6, 2xday; Rowasa nightly; Singular & Allegra for allergies; Xanax.

Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4188
   Posted 6/14/2018 9:05 PM (GMT -6)   
subduedjoy said...
Yes. Crohn's and ulcerative colitis manifest in the colon differently. Ulcerative colitis is superficial and continuous. Crohn's is deep and patchy. Indeterminate colitis (IC) is when doctors can't tell.

I have what looks like ulcerative colitis. But I also get extra-intestinal inflammation, so I wouldn't be surprised if I developed inflammation elsewhere in my digestive tract if I no longer had a colon.


Well, some cases must look similar enough if 20% end up being Crohn's. The only reason he made the comment to me is I told him I started flaring when I started smoking again after 9 years quit. I also got UC as a smoker, and when I originally quit in 2009, I never flared. I had fewer BMs and slightly less urgency after I quit. So who knows. However, I am greatly improved now just two days after quitting again. Only other change was I went from 40 to 50 mg pred. I needed 6 or 7 pain pills yesterday and today only took two. Just had a formed BM with no discernible blood and yesterday I was passing pure blood and mucous.
34 years old; diagnosed March 2007.
Latest scope: 9-29-16: mild-to-moderate chronic and active proctosigmoiditis (infectious cause). Battled reoccuring campylobacter & c diff. Oct-Dec 2016. Healthy since Dec. 25, 2016 until I started smoking May 2018. Started 50 mg pred 6-9-18 & re-quit smoking 6-13-18. Maintenance meds: Delzicol, 6, 2xday; Rowasa nightly; Singular & Allegra for allergies; Xanax.

Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4188
   Posted 6/15/2018 6:44 AM (GMT -6)   
I feel like I can't do the Rowasa when I'm this sick (even though Im a ton better than I was earlier this week). I tried one last night and it hurt, I couldn't hold it in, and then I saw bleeding on the toilet paper and my gut was upset afterwards.
34 years old; diagnosed March 2007.
Latest scope: 9-29-16: mild-to-moderate chronic and active proctosigmoiditis (infectious cause). Battled reoccuring campylobacter & c diff. Oct-Dec 2016. Healthy since Dec. 25, 2016 until I started smoking May 2018. Started 50 mg pred 6-9-18 & re-quit smoking 6-13-18. Maintenance meds: Delzicol, 6, 2xday; Rowasa nightly; Singular & Allegra for allergies; Xanax.

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 12516
   Posted 6/15/2018 6:55 AM (GMT -6)   
Yeah crohn's is often considered a smoker's disease (higher incidence of smokers have crohn's then have UC). If that's all they got on you and that diagnosis then I wouldn't worry as they'd need a lot more evidence to change your diagnosis.

Rowasa can be very difficult to retain when you're very badly inflamed. You can always go the steroid foam/suppository/enema route to tame things down for a few weeks. Foams are easier to retain.
Moderator Ulcerative Colitis
John
, 40, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

My reviews on Yelp and Trip Adviser will be terrible: @$10,000 a night with uncomfortable beds and awful food, but at least the drugs are good at this hospital.

Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4188
   Posted 6/15/2018 7:29 AM (GMT -6)   
Ok, thanks.

I've never tried the foams. The hydrocort enemas helped me the very first time I used them, but then the next time they made me worse. The first time I used them was the first time I went into a real remission with zero symptoms. I think maybe the pred will continue to help, just need to be patient. Maybe I'll ask about the cortifoam. Thank you.
34 years old; diagnosed March 2007.
Latest scope: 9-29-16: mild-to-moderate chronic and active proctosigmoiditis (infectious cause). Battled reoccuring campylobacter & c diff. Oct-Dec 2016. Healthy since Dec. 25, 2016 until I started smoking May 2018. Started 50 mg pred 6-9-18 & re-quit smoking 6-13-18. Maintenance meds: Delzicol, 6, 2xday; Rowasa nightly; Singular & Allegra for allergies; Xanax.

subduedjoy
Regular Member


Date Joined Dec 2012
Total Posts : 120
   Posted 6/15/2018 10:03 AM (GMT -6)   
The causes of IBD are gut dysbiosis, an impaired immune system, and genetics. Getting the colon taken out might fix gut dysbiosis, but it's not going to fix an impaired immune system (not unless the impaired immune system is due to gut dysbiosis). The inflammation is likely to go elsewhere, which could explain why some people who have what looks like ulcerative colitis can develop Crohn's after getting their colons taken out and others might still go on to develop other autoimmune diseases. I haven't seen any data on this (the likelihood of getting another autoimmune disease). I would think that getting the colon taken out would increase the likelihood. But then I would also think that having severe colon flareups would increase the likelihood too.
Paleo and SCD diets: Lots of vegetables, fruits, fish, coconut yogurt smoothies, and meaty bone broth soups. Anti-inflammatory supplements, probiotics, digestive enzymes. Meditation, breath regulation, and exercise.

Systemic chronic microscopic inflammation, including the kidneys.

ACE Fitness Nutrition Specialist

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 12516
   Posted 6/15/2018 10:20 AM (GMT -6)   
I'd be careful to say any of it is definitively this or that, as we just do not know enough yet. We don't know the cause of UC although there are some interesting hypothesis's which explain some but not all cases with their limited variables and sample sizes. Often it is "which came first the chicken or the egg" kinda thing: sure our bacterium makeup is out of wack but is that a cause or symptom? Sure we have a gut dysbiosis issues but is that a cause or symptom? Sure we have genetic mutations that might make us more susceptible, yet others with the same, exact mutations do not have it (my dear wife had more UC/Crohn's mutations than I do, yet she has not IBD or other autoimmune after we both ran some genetic tests lol), and why do we develop UC later in life?

about 20% if us get extra-intestinal manifestations as a consequence of having an UC (not specific to post-operative), and additional manifestations. Usually the 2nd and 3rd autoimmune conditions develop years after acquiring UC. There's no knowing if a surgery might alleviate all autoimmune conditions, or whether more might develop later (I've heard stories of both cases). Overall once the autoimmune attack on our intestine stops, at surgery, then there is less circulatory collateral-damage from that attack (you have WBCs and other immune particles all throughout your body during a UC flare and they can attack elsewhere as a result). Often ( but not always) joint pains are correlated with UC flares, worse with flares and gone with remission.

Interesting speculation, at least. I'd guess that we have a genetic susceptibility/weakness and that epigenic changes occur due to something (an environmental/diet/antibiotics/etc) that enables this demon we call UC. Our genetics are hard coded from birth, but epigenic changes happen throughout out lives which can turn on and off otherwise inactive genetic code. Might be helpful if our bodies can turn on code that might make us adapt better for our environment (better survive the heat or cold do to where we live), not so good when attacking self/host. Merely educated guesses, and I could be wholly wrong lol.

Post Edited (iPoop) : 6/15/2018 10:25:38 AM (GMT-6)


MarkWithIBD
Regular Member


Date Joined Jun 2018
Total Posts : 26
   Posted 6/15/2018 10:46 AM (GMT -6)   
Some of what has been said in this topic confuses me. People are saying that flares with more severe pain can mean Crohn's and yet fulminate (sp.) UC is severely painful. You can also get stenosis and strictures with either. If you can have Crohn's only affecting the colon vs. UC then how are you supposed to know? And do the treatment options really change? With CD it's prednisone, biologics, and immune suppressants. With UC it's prednisone, biologics, immune suppressants and the 5-ASAs. The only real difference is the surgical options.

During my first colonoscopy ever, the GI's report said that he saw patches of inflammation, along with proctosigmoiditis. So in his report he put patchy Crohn's-Colitis. Then later when the biopsies came back, the diagnosis was changed to UC. In my flares, the pain is very severe, requiring morphine. I also get patches of pain all over my colon, but I don't have pancolitis. So I probably have Indeterminate Colitis.

When I was last in the hospital, the on call GI doctor said to me that I should get a colectomy. He said that if I have Crohn's but the inflammation has not started up in my small intestine, then removing the inflamed colon means there is almost no chance of it recurring in the small bowel. Right now I am fighting tooth and nail to stop this flare even though all I have left is prednisone. My doctors will not consider Humira for some reason? I don't want a colectomy if I can't get a j-pouch. I don't want a permanent ileostomy.

Also I agree with an above poster who said that removing the colon does not really heal the body. If you have an immune dysfunction then you're just hiding it. I'm not against surgery I am just against the claim that it's a "cure". We're not allowed to call anything a cure but surgery is? But surgery doesn't solve the immune problem and a lot of people with IBD get other auto-immune disease like RA or MS, so they aren't really cured.

I just want this to end. My quality of life stinks and I am tired of researching IBD and different things to try. I just don't want to think about it anymore, but if I have Crohn's then it might never end.

If I do have Crohn's then I wish they would just resection my bowel to remove the rotten parts in my rectum and sigmoid. Those are the only places really giving me grief. They won't resection if you have UC but they will with Crohn's, I think.

Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4188
   Posted 6/15/2018 11:02 AM (GMT -6)   
MarkWithIBD said...
Some of what has been said in this topic confuses me. People are saying that flares with more severe pain can mean Crohn's and yet fulminate (sp.) UC is severely painful. You can also get stenosis and strictures with either. If you can have Crohn's only affecting the colon vs. UC then how are you supposed to know? And do the treatment options really change? With CD it's prednisone, biologics, and immune suppressants. With UC it's prednisone, biologics, immune suppressants and the 5-ASAs. The only real difference is the surgical options.

During my first colonoscopy ever, the GI's report said that he saw patches of inflammation, along with proctosigmoiditis. So in his report he put patchy Crohn's-Colitis. Then later when the biopsies came back, the diagnosis was changed to UC. In my flares, the pain is very severe, requiring morphine. I also get patches of pain all over my colon, but I don't have pancolitis. So I probably have Indeterminate Colitis.

When I was last in the hospital, the on call GI doctor said to me that I should get a colectomy. He said that if I have Crohn's but the inflammation has not started up in my small intestine, then removing the inflamed colon means there is almost no chance of it recurring in the small bowel. Right now I am fighting tooth and nail to stop this flare even though all I have left is prednisone. My doctors will not consider Humira for some reason? I don't want a colectomy if I can't get a j-pouch. I don't want a permanent ileostomy.

Also I agree with an above poster who said that removing the colon does not really heal the body. If you have an immune dysfunction then you're just hiding it. I'm not against surgery I am just against the claim that it's a "cure". We're not allowed to call anything a cure but surgery is? But surgery doesn't solve the immune problem and a lot of people with IBD get other auto-immune disease like RA or MS, so they aren't really cured.

I just want this to end. My quality of life stinks and I am tired of researching IBD and different things to try. I just don't want to think about it anymore, but if I have Crohn's then it might never end.

If I do have Crohn's then I wish they would just resection my bowel to remove the rotten parts in my rectum and sigmoid. Those are the only places really giving me grief. They won't resection if you have UC but they will with Crohn's, I think.


Who gives you morphine? Can I have the name of that doctor? Ha. But seriously, I had to go to the ER to have my severe pain treated this week because my GI won't prescribe pain meds. I have had this since 2007, been through many doctors and none would ever give me pain meds, except for when I was hospitalized twice. It really makes me mad.

I don't know the answers to all of your questions, but in response to your first question, my doctor said it doesn't matter as far as treatment goes. The only time it would really matter is if you have to get surgery. The only reason he even mentioned it is I asked him if me smoking could have caused this flare.

I totally hear your pain. I am sorry you might have Crohn's. Why won't your doctors consider Humira? Have you tried any biologics? Can you get another opinion? If you smoke, definitely try quitting. Seems to be helping me. Although I can't help but feel envious right now of those UCer's who "get" to smoke.
34 years old; diagnosed March 2007.
Latest scope: 9-29-16: mild-to-moderate chronic and active proctosigmoiditis (infectious cause). Battled reoccuring campylobacter & c diff. Oct-Dec 2016. Healthy since Dec. 25, 2016 until I started smoking May 2018. Started 50 mg pred 6-9-18 & re-quit smoking 6-13-18. Maintenance meds: Delzicol, 6, 2xday; Rowasa nightly; Singular & Allegra for allergies; Xanax.

MarkWithIBD
Regular Member


Date Joined Jun 2018
Total Posts : 26
   Posted 6/15/2018 11:10 AM (GMT -6)   
Sara14 said...
Who gives you morphine? Can I have the name of that doctor? Ha. But seriously, I had to go to the ER to have my severe pain treated this week because my GI won't prescribe pain meds. I have had this since 2007, been through many doctors and none would ever give me pain meds, except for when I was hospitalized twice. It really makes me mad.

I don't know the answers to all of your questions, but in response to your first question, my doctor said it doesn't matter as far as treatment goes. The only time it would really matter is if you have to get surgery. The only reason he even mentioned it is I asked him if me smoking could have caused this flare.

I totally hear your pain. I am sorry you might have Crohn's. Why won't your doctors consider Humira? Have you tried any biologics? Can you get another opinion? If you smoke, definitely try quitting. Seems to be helping me. Although I can't help but feel envious right now of those UCer's who "get" to smoke.


My GP gave me both morphine and hydromorphone, but low doses. During really bad flares it's not good to take too much opiate because it slows down the bowel I'm told. I usually get ultra bad pain when I flare but the weird thing is that the pain doesn't start until I start taking prednisone. Until then my bowel just feels hot. When I start pred the inflammation shrinks and then everything just feels more raw. I don't know what this means. My GI doctor is useless when it comes to these questions.

I really have no idea why humira is not being considered. My GI just thinks I'm a lost cause I guess. I already did Remicade and Entyvio so maybe he figures there's no point. I don't smoke at all it makes me worse but I used to smoke pot when I was a lot younger. I don't know if there's any relation.

One thing I saw recently was something called the Crohn's MAP study and they believe IBD is caused by an infection by a bacteria which is something I believe in because antibiotics tend to make me feel better. I might look more into that.

Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4188
   Posted 6/15/2018 11:17 AM (GMT -6)   
I think I will ask my GP next time. She seems more open to giving me meds that I request. I know it's not good to take it, but when I'm in so much pain, I'm scared I will pass out and die, I feel like they should be willing to give me something. I am sick of being treated like I'm a drug addict or something. Plus, I was still having diarrhea even taking 7 pain pills the other day, so it didn't stop me up. I know there are potential dangers though, like toxic megacolon. That is weird your pain doesn't start until you start taking pred. I think I may kind of know what you mean because now that my gut is healing I have a different type of pain. I feel like I can feel the harder stools irritating things in my colon versus before it was unbearable crampy pain over my entire abdomen. Yeah, GIs can be useless when it comes to a lot... ;)

I tend to believe in the bacterial cause, too. Antibiotics have also tended to make me feel better in the past.

Well, I am sorry your GI isn't being helpful. I would think about seeing someone else. I doubt there is any relation from smoking pot when younger.
34 years old; diagnosed March 2007.
Latest scope: 9-29-16: mild-to-moderate chronic and active proctosigmoiditis (infectious cause). Battled reoccuring campylobacter & c diff. Oct-Dec 2016. Healthy since Dec. 25, 2016 until I started smoking May 2018. Started 50 mg pred 6-9-18 & re-quit smoking 6-13-18. Maintenance meds: Delzicol, 6, 2xday; Rowasa nightly; Singular & Allegra for allergies; Xanax.

MarkWithIBD
Regular Member


Date Joined Jun 2018
Total Posts : 26
   Posted 6/15/2018 3:05 PM (GMT -6)   
If you tell your doctor you just want to take 5mg morphine as needed and not around they clock, they might give you some. The problem is the opiate epidemic in the U.S. right now, it has made doctors way less willing to give opiate pain meds. If you have an understanding doctor thought it should be ok!

subduedjoy
Regular Member


Date Joined Dec 2012
Total Posts : 120
   Posted 6/15/2018 10:54 PM (GMT -6)   
In regard to the role of the gut microbiome in IBD, here is a very informative video:

https://www.youtube.com/watch?v=xTtVxwt9Z5g
Paleo and SCD diets: Lots of vegetables, fruits, fish, coconut yogurt smoothies, and meaty bone broth soups. Anti-inflammatory supplements, probiotics, digestive enzymes. Meditation, breath regulation, and exercise.

Systemic chronic microscopic inflammation, including the colon and kidneys. Previous severe flareups.


ACE Fitness Nutrition Specialist

Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4188
   Posted 6/16/2018 6:34 AM (GMT -6)   
I was able to retain half a Rowasa last night. And I slept through the night with no issues. Didnt notice any blood yesterday or this morning.
34 years old; diagnosed March 2007.
Latest scope: 9-29-16: mild-to-moderate chronic and active proctosigmoiditis (infectious cause). Battled reoccuring campylobacter & c diff. Oct-Dec 2016. Healthy since Dec. 25, 2016 until I started smoking May 2018. Started 50 mg pred 6-9-18 & re-quit smoking 6-13-18. Maintenance meds: Delzicol, 6, 2xday; Rowasa nightly; Singular & Allegra for allergies; Xanax.
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