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UC flare-up - help please!

Posted by ChrisP, on Tue Oct 29, 2019 4:32 am

Good morning from France, where my doctor has just retired, the new doctor arrives next week (and doesn't speak French!!) and I'm having a massive colitis flare-up for the first time ever! I'm taking the medication (5-ASA) and have increased the dose to the maximum I've previously had, but things are only marginally better than a week ago. I'm passing lots of mucus, and have that 'kicked by a donkey' kind of pain. I've been eating my normal diet, trying to do my normal things. What else should I do to calm things down? Foods to avoid/to seek out? Exercise? Rest?Anything else?

I know quite a lot of you have been here often enough, so I'd appreciate your advice please! Thank you. Chris

Reply by Tickpol , on Tue Oct 29, 2019 7:48 am

As a Crohn's patient the web is my friend although everyone is different so don't be surprised if something you read doesn't work for you.  As it says below I've known folks who really watch their sugar intake during a flair.  In the US all packaged foods have a Recommended Daily Allowance label that shows the sugar content.  Sometimes it will differentiate between natural sugars and processed sugars but not always. I just skip veggies altogether but that's because they're sometimes hard to digest for me.  Hope this helps.

 

Dave

 

1. Applesauce: Given the significant irritation to your gastrointestinal system during a flare, soft, easily digestible applesauce can be a good choice. Be sure to stick to an unsweetened variety, however, because added sugar can cause more inflammation. You can also make your own sugar-free applesauce by cooking peeled and sliced apples with some water and then pureeing the mixture.

2. Ripe bananas and canned fruits: Although dietitians generally recommend that people avoid raw fruits during a flare, very ripe and soft bananas are often well tolerated. Bananas are also a good source of carbohydrates, which, along with protein and fats, provide energy. Soft fruits like canned pears or peaches may also be non-irritating, says Shannon Szeles, RDN, a clinical wellness dietitian-nutritionist at Beaumont Hospital in Royal Oak, Michigan.

3. Cooked vegetables: Soft, cooked veggies such as carrots and spinach can provide important nutrients like vitamins A and K. Just make sure the vegetables are cooked through — until they’re mashable with a fork, Szeles says — so that any potentially irritating fiber is broken down.

4. Yogurt: If you’re not lactose intolerant, you can get some protein from yogurt, which is also a source of probiotics — live bacteria that may help the digestive system. Be sure to buy yogurt with live and active cultures in it, Szeles says, which is specified on the label. Avoid yogurt that contains large fruit chunks, which could be hard to digest. "It’s fine,” Szeles adds, “if yogurt has fruit that’s soft, seedless, and blended in."

5. Salmon: People with ulcerative colitis who are lactose intolerant, or who simply want to get more protein in their diet, can add salmon to the foods they eat during a flare. In addition to being a great source of protein, salmon has healthy omega-3 fatty acids that may help reduce inflammation.

Neilanjan Nandi, MD, a gastroenterologist and an assistant professor at Drexel University College of Medicine in Philadelphia, recommends baking, broiling, or sautéing salmon and cautions that "frying fish causes it to lose a lot of its nutritional value."

6. Peanut butter: Peanut butter is another lactose-free source of protein and healthy fats. Choose creamy peanut butter instead of chunky to avoid difficult digestion of nut pieces and further irritation during an ulcerative colitis flare. Try eating peanut butter with bread, advises Dr. Nandi, or wrap it in a tortilla with some turkey.

7. White rice with turmeric: If you can't tolerate most foods during an ulcerative colitis flare, you may want to stick with bland choices such as cooked white rice. If you find that the rice lacks flavor on its own, try sprinkling it with turmeric — the yellow spice whose key ingredient, curcumin, has shown some benefit in the treatment of ulcerative colitis. Turmeric is widely used in India, where the incidence of inflammatory bowel disease is lower than in the United States or Europe, says Arun Swaminath, MD, director of the Inflammatory Bowel Disease Program at Lenox Hill Hospital in New York City.

In a small study published in August 2015 in the journal Clinical Gastroenterology and Hepatology, researchers found that a curcumin supplement taken with their medication was helpful in inducing remission in people with ulcerative colitis. More research is needed, however, to examine the effectiveness of curcumin.

8. Water, sports drinks, and fruit juice: The diarrhea that often occurs during an ulcerative colitis flare can cause you to lose a lot of fluids, so replenishing them is important. "When you’re dehydrated, every symptom you have is amplified," Nandi says. Sports drinks combined with water in a 1:1 ratio can help replace lost carbohydrates and electrolytes, he says. No-pulp fruit juice is also an option, Szeles says, but avoid prune juice because of its high fiber content.

Reply by ChrisP, on Tue Oct 29, 2019 7:54 am

Hi Dave,

This is immensely helpful! Thank you so much for taking the trouble to write all this. I shall study it in depth.

Chris

Reply by warrior, on Tue Oct 29, 2019 10:02 am

Morning. Sorry to hear of yur flare out of the blue like that. Think back at what could triggered it.  Im surprised you are on sulfa med. If my memory serves me right...in the usa they stopped making it..i too was on it many years ago. I would not recommend doubling up on the med as it may cause you to be sick.  Having a hard time remembering the tablet form but whatever i used came out in toilet.  Could mean you're likely to try the next generation of drugs. The sulfa simpky aint working anymore.  Diet..stress..lots of things to consider how and why this is happening.  I suggest google the next gen meds and arm yourself with question for this doctor. And if yur bleeding too much..dont mess around. Go to hospital and get treatment to calm the situation..prednisone by tablet...or steroid enema creams work amazingly fast.   Believe or not i lost my hearing from waiting too long for trwatment. Nasty stuff ibd. Keep us post. 

Reply by w30bob, on Tue Oct 29, 2019 10:44 am

Hi Chris,

  Sounds like you're getting lots of good advice.  I'll just throw a few other things out there for shits and grins. I'll try to be "sensitive" here, but I'm not good with candy-coating or bullshitting......so bear with me.  When folks have these IBD conditions for a long time, and the meds don't work, it usually means the condition has continued over time to worsen.  Hindsight is always 20-20, but when I talk to younger folks with serious IBD conditions I tell them straight out how the story goes and how it usually ends.  Doctors typically run thru the dedicated IBD meds from least to most in terms of strength (and bad side-effects). Sounds like you're still mid-stream in the IBD medication heirarchy, so that's good......it means there's still a bunch of meds they can try to get your UC under control.  A lucky few actually do get their UC under control, at least for a time.  But the medical community really doesn't understand what Crohn's and UC are all about.  The meds we have today work at suppressing our immune system, not at fixing why the immune system is freaking out in the first place.  The most logical cause for all these modern day immune system diseases is our poisoned food supply.  Back in the late 70's is when big Agra and Dairy started messing with our food and milk and they figured they could make just about anything out of corn or corn products.  It just got worse from there and now the majority of the population has some form of auto-immune disease or issue.  I'm drifting way off course here, sorry for that.  What I'm trying to say is your "flare" is most likely an indication that things have gotten worse inside instead of staying the same or gotten better.  You need to see your Gastroenterologist and have either a CT or MRI done by a radiologist who specializes in reading scans for IBD type indications.  As I said before, luckily for you there are still a number of medications still on the list for your Doc to prescribe.  But don't just take the stuff and be fat dumb and happy until the next flare.  Take the time to have them figure out exactly what your condition is, how it has worsened (by comparing your CT or MRI scans to previous scans) and discuss with your Gastro how this story really ends. If no one can find any previous scans then start right now to get copies of any scans you get.  I keep all my own medical records, including all scans, operative reports, etc, because I can't trust the medical community to do it, and it is ultimately my responsibility.  Nuff' said.

  None of this answers your question about what to do right now that you're in pain.  So here's that answer.  If you can't get to a Gastro anytime soon hopefully you have some Prednisone on hand.  It's truly a wonder drug with a devilish side if you take it too long. But for short term flares it will usually get you back in the game.  Side effects are common and plentiful, but it does do what you want it to do.  Dosage-wise you don't start taking Predisone in small amounts and build up.......you take enough to shock the shit out of your system, because your body will adjust to a low dose and essentially negate it.  When I was in serious pain (from bowel leakage and sepsis) I went as high as 60-80mg of Prednisone when I had to.  That's NOT something you want to do, so DON'T start there.  Most Docs will start you at 20-30mg and then bump you up a bit if need be. I'm not a doc, so take that into consideration when you're reading this, and everyone knows what one person's opinion is worth.  But get to a Doc and have it checked out.  If I have one regret in all my IBD plagued life it's that I usually waited too long to seek the help of the medical community, and it always made things worse.  So don't be me.  Pop some Pred and get on the phone to your Doc.  Get scanned (and soon) and don't take no for an answer.  I know........easier said than done, but always do-able with the right amount of force and noise.  Keep us informed my friend.

regards,

bob 

Reply by ChrisP, on Tue Oct 29, 2019 2:07 pm

Thank you Warrior, thank you Bob. Points taken and noted. I have a very clear idea of what triggered this episode, and will certainly avoid it in future! The question is how to stop it......!

Bob, you raise especially interesting longer-term issues. Why IS my immune system kicking off? I eat a bland and healthy diet - always have done, but I still got cancer aged 49!

I think the attack is slowing, slowly..... I'll follow the dietary advice, and start learning Spanish (Catalan?) to discuss the matter with my new doctor!

Chris

Reply by Tickpol , on Tue Oct 29, 2019 3:10 pm
ChrisP wrote:

Hi Dave,

This is immensely helpful! Thank you so much for taking the trouble to write all this. I shall study it in depth.

Chris


In truth it was a cut-and-paste job.  I think I googled "UC Flare Diet".

 

Hope you get relief soon,

 

Dave

Reply by ChrisP, on Wed Oct 30, 2019 3:47 pm

Dear all,

Thank you for responding to my plea when I was feeling a bit desperate. Alongside the medication I've been eating a fairly bland diet, drinking lots, and taking things carefully. Stretching and twisting have resulted in 'interesting' sensations, so I've tried to restrict these things a bit. I'm also going back to taking turmeric as a supplement.

Ten days after this episode began, I feel things are settling down. Pain is now only intermittent, I am still passing loose/mucous motions, but they are fewer and less urgent. I have passed no blood through the stoma, but lost some through output from my residual anus.

Reading an article on another site about coping with UC flares I can see I have had a relatively mild episode (thank God!): I read aghast the accounts of weeks of total misery and repeating cycles of flares. I hope and pray that my disease won't get into that kind of crisis anytime soon!

 

Anyhow, thanks again for your thoughts - and just for being there!   Chris

 

Reply by Tickpol , on Wed Oct 30, 2019 4:26 pm

Prayers you'll be spared further agony.

 

Dave

Reply by ron in mich, on Thu Oct 31, 2019 9:03 am

Hi Chris i was told by my latest surgeon that crohns attacks near new surgical sites or old sites that had it before so maybe what you have left of your anus is the culprit and you might talk to a gastro. doc. about removal.  good luck

Reply by warrior, on Thu Oct 31, 2019 9:33 am
ron in mich wrote:

Hi Chris i was told by my latest surgeon that crohns attacks near new surgical sites or old sites that had it before so maybe what you have left of your anus is the culprit and you might talk to a gastro. doc. about removal.  good luck

like most surgeons,  they wanna cut cut cut and i find it very true.   the advice you have given is sound but i feel its misguided.   there is no way   any doctor would cut out or remove  a rectum and or anus simply because of a flare up.  had they thought this years ago, i would not be on this site.   Chris has many options before surgery which most doctors would first try.. he needs to behis own advocate here.  today there are a wide range of meds more powerfeul,  more available,  now than what i had in the 80's... with great relief-- which is what Chirs needs now..   If any surgeon were to say to me cut this out now,  without having tried other options, i would definatley get several opinions.  I have crohns in my rectum  in the stump. its infected and likely may..... m a y need to be removed.  but am currently on this steriod cream that has reduced the  symptoms.  as long at that continues, there will be no need to remove it... however..  its on my mind.. to have it removed..  and it upsets me the doctor didnt remove it when he removed the damn intestine two yrs ago.. he left a stump hoping to reattached small intetesting... to the stump.. and that is not the case now.. true,...  inflammation will travel and attck any organ..   thus  i am  a baggie for life... surgery is and always will be a last resort.  my two cents. 

Reply by ChrisP, on Thu Oct 31, 2019 10:18 am

Thank you both for your complementary (English understatement: conflicting!) advice, which I will ponder. The good news is that even with a flare-up, I still have lots of options!

 

Reply by warrior, on Thu Oct 31, 2019 4:29 pm

Option one..learn spanish?? 😁 option two...get an interpreter...option three? See a different doctor.  Good luck. Keep us posted. 

Reply by ChrisP, on Thu Oct 31, 2019 5:26 pm

The only Spanish I know is 'I speak Spanish like a French cow'. I'm told this is a good opener.....

Reply by warrior, on Thu Oct 31, 2019 5:38 pm

Hilarious opener. Need to watch dora the explorer. 

Reply by lovely, on Sat Nov 02, 2019 2:03 am
ChrisP wrote:

Dear all,

Thank you for responding to my plea when I was feeling a bit desperate. Alongside the medication I've been eating a fairly bland diet, drinking lots, and taking things carefully. Stretching and twisting have resulted in 'interesting' sensations, so I've tried to restrict these things a bit. I'm also going back to taking turmeric as a supplement.

Ten days after this episode began, I feel things are settling down. Pain is now only intermittent, I am still passing loose/mucous motions, but they are fewer and less urgent. I have passed no blood through the stoma, but lost some through output from my residual anus.

Reading an article on another site about coping with UC flares I can see I have had a relatively mild episode (thank God!): I read aghast the accounts of weeks of total misery and repeating cycles of flares. I hope and pray that my disease won't get into that kind of crisis anytime soon!

 

Anyhow, thanks again for your thoughts - and just for being there!   Chris

 

Hi Chris, A lot of times when you tell someone about a problem they will say I know how you feel. Well I can't say that because I have the opposite problem. But I just wanted to say I hope you are feeling better and that they can find the problem  best wishes.

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