HealingWell
Search Close Search
☰

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

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 6/13/2018 7:29 PM (GMT 0)
My GI just told me that about 20% of people diagnosed with UC actually have Crohn's that only affects the colon. He said this is really only important when it comes to surgery. He said people with Crohn's-colitis would not be good candidates for a j-pouch. He thinks I may have Crohn's-colitis since smoking has seemed to put me in a bad flare, I got UC as a smoker, and since I tend to have a ton of pain when flaring. He also wants me to start on Remicade or Humira, which I really don't want to do unless I have no other choice.
Posted 6/13/2018 7:43 PM (GMT 0)
I wonder if he has any source for that tidbit.

What do you have against humira/remicade? Remi was a game-changer for me.
Posted 6/13/2018 8:02 PM (GMT 0)
I wondered the same thing and tried to Google it. All I found was that 20% of people with Crohn's have Crohn's-colitis.

I just wanted to wait as long as possible to go on any harder drugs. I never want to have to run out of med options. I'm quitting smoking and they gave me 50 mg pred for a week, then tapering. I hope that puts me in remission.
Posted 6/13/2018 8:25 PM (GMT 0)
It wouldn't surprise me if I also have Crohn's colitis. I had severe abdominal pain when flaring. Smoking may help UCers but unfortunately it makes CDers worse. However there is hope if you live in a state that allows medical marijuana. The results are very promising if you want to try it.

MM is a Schedule 1 drug in the U.S. so it may not be fair to ask for long term studies proving its safety. But Israel is the world leader in science on the medical uses of marijuana and they are conducting research proving MM efficacy in UC and Crohn's as well as a host of other diseases included epilepsy and ALS, etc.

So far very few or no side effects found.

blog.sfgate.com/smellthetruth/2016/03/12/worth-repeating-medical-marijuana-defeats-crohns-disease/
A small human trial in Israel in 2011 found that “Of the 30 patients 21 improved significantly after treatment with cannabis.

Authors concluded that “this is the first report of cannabis use in CROHN’s disease in humans.

In 2013, researchers reported “complete remission” of Crohn’s Disease Activity in 5 of 11 cannabis test subjects in a prospective 21-person placebo-controlled study. Eight weeks of THC-rich cannabis “produced significant clinical, steroid-free benefits to 10 of 11 patients with active Crohn’s disease, compared with placebo, without side effects.

From the Washington Post:
/www.washingtonpost.com/world/middle_east/israeli-medical-marijuana-creates-buzz-but-no-high-will-it-go-global/2015/01/31/558fe072-a19a-11e4-9f89-561284a573f8_story.html?tid=HP_world
Israeli doctors use it to treat ailments including Crohn’s disease, basal cell carcinoma, psoriasis, Parkinson’s, multiple sclerosis and PTSD in Israeli military veterans, and the pain of cancer patients and the elderly.

One contributor was Timna Naftali, a gastroenterologist at Meir Hospital, who said she was skeptical in 2011 when she prescribed cannabis to 30 patients with Crohn’s disease.
But “the results were dramatic,” she said. “They didn’t need steroids or surgery or hospitalization.”
Posted 6/13/2018 8:37 PM (GMT 0)

Sara14 said...
I just wanted to wait as long as possible to go on any harder drugs. I never want to have to run out of med options.

While it's always good to have a trump card up your sleeve, ask yourself this: what if that card you're saving is just a joker? In the end, today's quality of life now is where it is at. A given treatment either works or does not, regardless of when it's used. Pretty much all new UC medicine research is in biologics, with many new and novel ones in the works. Therefore, I don't worry about running out of options. Remi has worked well for me since 2012 and should it suddenly fail, then I still have Humira, Simponi, Entyvio, Xeljanz, and soon Stelara as options to choose from.

Certainly, consider both points of view and decide whatever you think is best smile
Posted 6/13/2018 8:59 PM (GMT 0)
Tough decision. I don't envy you. Can you have the doctor do a biopsy before committing to a biologic? If I were to learn I actually have Crohn's and my doctor recommended a biologic I would not hesitate. The latest research is showing a top-down approach (biologics first) to give better long-term results for Crohn's patients. I'd want to be sure my inflammation was actually bad enough to warrant it though.

Prednisone has a ton of terrible side effects as well but people seem to be more comfortable with it because it is prescribed so often. I know four people on humira or remicade and none have had a single side effect. Actually, that is not true, my cousin with Crohn's got 12 years of side-effect free remission from humira but then developed some lung issue that resolved when stopping the medication. There is so much research going into IBD I would not worry about running out of meds.

Post Edited (Uniform Charlie) : 6/13/2018 3:02:53 PM (GMT-6)

Posted 6/13/2018 9:09 PM (GMT 0)
Humira worked well for me, and I found it easy to administer. I understand your thought process but I also believe that more and more new drugs will appear over the next few years and you need treatment now by the sound of it.

I haven't had a cigarette now for almost a year but I'm still vulnerable. It is a hard habit to kick.
Posted 6/13/2018 11:28 PM (GMT 0)
Thanks everyone. Lots to think about. I thought my GI was going to scope me, but he didnt mention it today. He said he has a hard time getting insurance companies to cover Remicade, but a much easier time with Humira, but he seemed to slightly favor Remicade. I still need to get a chest xray for TB. My skin test was positive. I never had to use pred the first 6 years I had UC. I have had to take it maybe once or sometimes twice a year since 2013, so in my mind, that isnt a lot. My doctor agreed that once a year is probably ok. It has always put me into remission within just a few days until now. So that is also why I'm a little hesitant. I would probably be fine right now if I hadn't smoked. I was also taking Aleve every day for headaches for about two weeks, and I was extremely stressed out. So yeah, right now I'm on 50 mg of pred, hydrocodone and first day of no cigarettes. I may lose my mind before the week is over, ha... Really appreciate all the feedback.

Samantha: That sucks you got UC after you quit. It is good you quit though. I felt much healthier overall not smoking, never ever thought I'd start again. You smoke one and go right back to what you used to smoke or more.
Posted 6/13/2018 11:38 PM (GMT 0)
Wouldn't my biopsies in the past show Crohn's if that's what I have or no?
Posted 6/13/2018 11:55 PM (GMT 0)
I was originally diagnosed with UC but now they think it's Crohn's. I have terrible pain in the areas of inflammation. I have had blood tests and biopsies but none confirm either way. They do prescribe biologics right away when they think it's Crohns because supposedly they mesalamines don't work as well for Crohn's as they do UC. The weird thing is that Rowasa worked wonders on my lower left side but Balsalazide did nothing for my inflammation in the transverse area. I don't know but a scope would help see if you have patchy areas or skip areas that help diagnose Crohns. I was terrified of the biologics in the beginning. Now I pray that they work because there is no guarantee of that either.
Posted 6/14/2018 12:11 AM (GMT 0)
What about taking the Prometheus ibd diagnostic test to find out?
Posted 6/14/2018 12:28 AM (GMT 0)

Sara14 said...
Wouldn't my biopsies in the past show Crohn's if that's what I have or no?

No, not necessarily. If you or I, at anytime show a crohn's feature in a scope or biopsy then we're a crohn's patient henceforth. Telltale things like cobbelstoning, skip lesions (areas of healed tissue between inflamed tissue), aphthous ulcers, or deep tissue involvement to name a few obvious ones. UC is always continuous, shallow inflammation that's absent cobblestoning and absent aphthous ulcers.
Posted 6/14/2018 1:14 AM (GMT 0)
I have Chron's-Coitis as well. Severe. Or as very severe. I smoke, and I do believe it makes things worse but I mentioned this before. However sometimes it calms things. So for me it can go either way. But more often worse.

Remicade worked wonders and I achieved clinical remission quite fast - but I had to cut food items that I had tolerance issues to achieve clinical remission. For the first year I ate everything and had no improvement except for a decrease in mucus and blood. The second year I found success by going SCD - a few months into that and I was in clinical remission. My GI was shocked by the difference. However I built up antibodies to remicade and had to stop. The disease came on pretty hard and fast after that.

I took methotrexate while on remicade as well. It supposedly extends the time for the potential of building up antibodies. Methotrexate on its own after stopping remise had no effect. I swear I picked up very cold/flu known to human kind during that time as well. So that aspect sucked.

Now, years later I am back in clinical remission with only food tolerance issues. I take WOO (wild oregano oil) roughy 2x 5 drops daily or in gell caps along with Imuran. The two combined together had a profound effect on my disease for whatever reason. It took about 6 month of daily usage for both to really see some major changes.

Pred works wonders for me in a flare and I can eat anything I want. I love Pred... but of course one cannot say on it. ABX (Cipro and Flagyl) combined with pred always was for me as well. Same problem though fr all those three.

Anyway. Just throwing out some things that may/may not be worth looking into. Everyone is so different though from foods to response to meds. I think its more a rial and error thing where one hope to get lucky.
Posted 6/14/2018 1:45 AM (GMT 0)
No Chrons after 32 years with disease.If anyone thinks there aren't side effects with Remi or Humira your misinformed.Every med has side effects,lowering your immunity being on either is dangerous enough for me.
Posted 6/14/2018 2:00 AM (GMT 0)
Thanks for all the feedback and info. Yeah, I have always had continuous inflammation and none of the other typical Crohn's features. I guess I will see if stopping smoking and being on Prednisone helps in the next two or three days and if not, I guess I have no choice but to go on Remicade or Humira. I always wanted to try imuran first, but doctor said it takes 2 to 3 months to work.

Mark: Those antibiotics always seem to help me too. And sometimes I would smoke and feel temporarily better, too, but I really think I caused this by smoking just based off of when it started (the very first cigarette gave me some mile stomach pain), how it got better when I quit and took pred for 10 days in May, and then it came back after 3 weeks of smoking. I guess it will help me quit smoking at least. Maybe my colon is looking out for my lungs. Ha. I did smoke for 2 years after my initial diagnosis though. I was never in full remission but I got down to very minimal symptoms. They never gave me pred for that flare, just 5-ASA meds and a course of Flagyl. Im glad you are doing well.
Posted 6/14/2018 2:02 AM (GMT 0)
I recently went to a symposium held by the Crohn's and Colitis Foundation. One of the speakers is an IBD surgeon. She told us that if someone is diagnosed with ulcerative colitis, gets their colon taken out, and is then diagnosed with Crohn's; then they were misdiagnosed. I asked her how can this be when ulcerative colitis and Crohn's clearly manifest differently in the colon. Crohn's colitis looks different than ulcerative colitis. Therefore, patients who clearly had ulcerative colitis and then got Crohn's after their colons were taken out, developed Crohn's. They weren't misdiagnosed. She told me that it's because GI's shouldn't be diagnosing patients with ulcerative colitis since they have no idea whether or not patients who have what looks like ulcerative colitis have ulcerative colitis or Crohn's. They should be diagnosing them with "what looks like ulcerative colitis." It was then that I realized that my GI had used the same words with me. He had said, "It looks like ulcerative colitis." I asked her, "So, I have what looks like ulcerative colitis and not ulcerative colitis?" She replied, "Yes."
Posted 6/14/2018 2:05 AM (GMT 0)

3timechamp said...
No Chrons after 32 years with disease.If anyone thinks there aren't side effects with Remi or Humira your misinformed.Every med has side effects,lowering your immunity being on either is dangerous enough for me.

Every drug has possible side effects but not everyone gets side effects from every drug. I never got any from mesalamines the last 11 years. And I really have no option at this point. I cant even move without being in bad pain when not on hydrocodone and am pooping out blood and chunks of my colon tissue. And I only have 6 pain pills left.
Posted 6/14/2018 2:10 AM (GMT 0)

subduedjoy said...
I recently went to a symposium held by the Crohn's and Colitis Foundation. One of the speakers is an IBD surgeon. She told us that if someone is diagnosed with ulcerative colitis, gets their colon taken out, and is then diagnosed with Crohn's; then they were misdiagnosed. I asked her how can this be when ulcerative colitis and Crohn's clearly manifest differently in the colon. Crohn's colitis looks different than ulcerative colitis. Therefore, patients who clearly had ulcerative colitis and then got Crohn's after their colons were taken out, developed Crohn's. They weren't misdiagnosed. She told me that it's because GI's shouldn't be diagnosing patients with ulcerative colitis since they have no idea whether or not patients who have what looks like ulcerative colitis have ulcerative colitis or Crohn's. They should be diagnosing them with "what looks like ulcerative colitis." It was then that I realized that my GI had used the same words with me. He had said, "It looks like ulcerative colitis." I asked her, "So, I have what looks like ulcerative colitis and not ulcerative colitis?" She replied, "Yes."

I dont understand. Is she saying no one has the authority to ever diagnose UC? Either they were misdiagnosed or they developed it later...seems she is saying both? Im going to ask my doctor about this next time I see him.
Posted 6/14/2018 2:30 AM (GMT 0)
Drugs can have side effects that effect everyone. You might not notice the side effects until the condition reaches a threshold. For example, Prednisone breaks down bone tissue. But you might not notice it. If you have strong bones, are on a small dose, and take Prednisone for only a short period, then your body might be able to build up enough bone tissue that you don't even have any bone loss. But the longer you are on Prednisone and the higher dose you take, the more it breaks down your bones. Keep increasing the duration and the dosage, and the body can't compensate. You will eventually have bone loss and get osteoporosis.

Many of the medications used to treat ulcerative colitis hurt the body in some way. They might hurt the liver, kidneys, bones, lymphatic system, nervous system, ... But they do harm the body.

I'm not saying that we shouldn't take medications. Having ulcerative colitis flareups also hurts the body. But we should know how the medications harm our bodies so we can make informed decisions and take measures to offset some of the harm. For example, I'm doing high impact exercise and taking Grow Bone supplements to help offset the damage that Prednisone has done to my bones.

I'm really tired of doctors discounting the side effects of medications. I have IBD due to antibiotics. I have nephritis due to mesalamines. I have osteopenia due to steroids.

http://online.ccfa.org/goto/JoyEllen
Posted 6/14/2018 2:41 AM (GMT 0)
What's the cost of Remi after insurance? These pain pills arent even masking the pain anymore.
Posted 6/14/2018 2:49 AM (GMT 0)

subduedjoy said...
Drugs can have side effects that effect everyone. You might not notice the side effects until the condition reaches a threshold. For example, Prednisone breaks down bone tissue. But you might not notice it. If you have strong bones, are on a small dose, and take Prednisone for only a short period, then your body might be able to build up enough bone tissue that you don't even have any bone loss. But the longer you are on Prednisone and the higher dose you take, the more it breaks down your bones. Keep increasing the duration and the dosage, and the body can't compensate. You will eventually have bone loss and get osteoporosis.

Many of the medications used to treat ulcerative colitis hurt the body in some way. They might hurt the liver, kidneys, bones, lymphatic system, nervous system, ... But they do harm the body.

I'm not saying that we shouldn't take medications. Having ulcerative colitis flareups also hurts the body. But we should know how the medications harm our bodies so we can make informed decisions and take measures to offset some of the harm. For example, I'm doing high impact exercise and taking Grow Bone supplements to help offset the damage that Prednisone has done to my bones.

I'm really tired of doctors discounting the side effects of medications. I have IBD due to antibiotics. I have nephritis due to mesalamines. I have osteopenia due to steroids.

http://online.ccfa.org/goto/JoyEllen

Yeah, I am one of the few people who actually reads the entire medication information leaflet and researches everything I take online for hours before taking it, so I am well-informed. I am sorry you have had so many negative medication experiences. I still dont understand what that IBD specialist was trying to say to you.
Posted 6/14/2018 3:21 AM (GMT 0)

Sara14 said...
I still dont understand what that IBD specialist was trying to say to you.

I think that she was saying that she doesn't misdiagnose her patients because she doesn't tell them they have ulcerative colitis. She tells them they have what looks like ulcerative colitis. If her patients get Crohn's and complain afterward, then it's not her fault because she never told them that they had ulcerative colitis to begin with.

The only thing is that when my GI told me that "it looks like ulcerative colitis," I interpreted it to mean that I have ulcerative colitis.

BTW, my colon inflammation looks like ulcerative colitis. It doesn't look like Crohn's.

I no longer say I have ulcerative colits though--at least I try not to. I try to say I have IBD. I also say I have IBD and not ulcerative colitis because I get extra-intestinal inflammation.
Posted 6/14/2018 4:04 AM (GMT 0)
I see. Thanks for explaining. Interesting perspective she has. I guess, for the most part, it doesn't matter, unless I end up needing surgery someday.
Posted 6/14/2018 4:14 AM (GMT 0)

iPoop said...
I wonder if he has any source for that tidbit. .

there is literature to support 20% +/- - the literature is small. Since there are many common genes, someone could conceivably acquire Chrons after UC is cured - but most often I assume misdiagnosis.

In a pediatric study of 70 patients who had colon removed: CONCLUSIONS:
In the children studied, 13% had a diagnostic change to Crohn's disease, and 13% were diagnosed with Crohn's after ileal pouch-anal anastomosis (IPAA).


Another study compared 21 people with a change in daignosis to 50 UC and 50 CD that did not have a change. Those who had the change usually had non-bloody D at the start, weight loss, and more extensive coverage.

Background & Aims: Some patients diagnosed with UC undergo a change in diagnosis to CD. Identification of predictors of a diagnostic change could potentially impact the management of patients with colonic inflammation. Our aim was to characterize clinical and serologic predictors of a change in diagnosis from UC to CD. Methods: A nested, case-controlled study was performed to compare individuals with a change in diagnosis from UC to CD (cases) with age-matched UC and CD controls; primary analysis compared cases with UC controls. Subjects underwent chart review for clinical “red flags” identified by gastroenterologists with expertise in IBD. Serum collected at the time of database enrollment was tested for antibodies to oligomannan (anti–Saccharomyces cerevisiae), Pseudomonas fluorescens–related protein, Escherichia coli outer membrane porin C, CBir1 flagellin, and perinuclear antineutrophil cytoplasmic antibodies. Results: Twenty-one cases, 52 UC controls, and 56 CD controls were assessed. Three red flags, but no serologic markers, differed between cases and UC controls. At initial colonoscopy, cases were more likely to have extensive colonic involvement than UC controls (P = .008). Multivariate regression identified non-bloody diarrhea at initial presentation (P = .01) and weight loss >10% at presentation (P = .007) as independent predictors of diagnostic change. Serologic markers did not add to the contribution of these 2 clinical factors in predicting a change in diagnosis from UC to CD. Diagnostic change was evident in 6 of 6 (100%) patients with both predictors, compared with 8 of 50 (16%) with neither of these factors (P < .0001). Conclusions: Patients with a diagnosis of UC with initial non-bloody diarrhea or weight loss have an increased likelihood of subsequent change in diagnosis to CD and might thus warrant further diagnostic work-up.
Posted 6/14/2018 4:16 AM (GMT 0)
I had pancolitis (a minus) but did have blood (a plus) and have not lost much weight (a plus) - so maybe I am less likely misdiagnosed
✚ New Topic ✚ Reply
12