My Daughter, (recap/update)

It's not uncommon for this to happen with crohns or UC, both are unpredictable diseases!

Very happy to read that Stelara is working for her. Before I would look at diet changes I would encourage her to increase her fiber intake to bulk up the stools. Perhaps consider something like Metamucil, or even talking to a pharmacist about some choices. If she has been maintaining a healthy diet, I would not rock that boat, especially when adding fiber which is harmless.

I hope she has a long remission with Stelara.

73Monte,

I'm sorry she (and you) are having to work thru this.

I've had this happen. I was constipated all the time before (from childhood up) my Crohn's diagnosis. Back then it was just constipation. I got food poisoning and went to bloody watery D. Been on the Remicade journey 8 years now and even with a colostomy I go back and forth. List of things that cause it:

1.) Too much stress can cause horrible diarrhea. I have a hard time with this. I don't know I'm really concerned or stressed until after the event is over. Once triggered it can take me 4 to 6 weeks to get this under control.

2.) Change in weather... Seasonal changes. 2 and 3 work hand in hand... But if it's summer and the temp drops a lot during a storm I'll get D.... If winter and it heats up I'll get C. I'm unsure if it's the temperature or the pressure... This is the same for me on heat or cold intolerance.

3.) Change of pollen. Spring and fall. Spring is much worse for diarrhea. Fall brings constipation and obstructions.

4.) Suddenly unable to eat certain food items.... They will throw me into C or D depending on the specific food item. Example: Tomatoes will sometimes give me horrible D. If so.....I offset with rice or pretzels. Read her old food journals. I usually know this is coming. My gut feels different, taste is slightly off and my joints ache in a different way. If any of that is happening I go back to my standby list and add on SCD yogurt and bone broth soup for a week or so.

5.) Estrogen levels. I stopped having my period once I developed Crohn's. Too high estrogen caused D. Too low caused C. This also impacted having recurrent UTIs. I didn't even think about this until last year when I went to a urogynecologist. There are studies indicating that estrogen/menopause impacts UC/Crohn's flares with the belief that specific levels can impact a woman's chances of flares.

6.) The days right before I take Remicade I have D. Right after I have C. To offset I eat foods that impact me.... I adjust my diet.

I'd suggest you recheck food and symptom journals. See if anything looks familiar. I have to do this once a year..... Crohn's is such a chameleon. It changes in size, scope, and triggers so easily.

I hope she feels better soon. Let me know if you have questions.

Clo


For me it's sorta a moving target. I reevaluate daily and adjust.... I'm looking for it so I start adjusting right away -- but even then I don't catch it in time as frequently as I'd like to.

And finally.... On the fiber.... For me sometimes it helps and sometimes it makes it worse. If I try it I do a teaspoon one day, then increase the next day if I can. I have to be very careful on the powdered fiber. It seems to impact me quickly. Personally I prefer bananas and apples instead. No skins. When desperate I'll eat marshmallows... If out and about I'll buy one of those marshmallow moon pies. Everyone just thinks I'm having a treat. And.... I have to avoid juice like the plague with D. No juice no citrus like oranges, lemons or limes.

Post Edited (clo2014) : 3/26/2023 3:09:14 AM (GMT-8)

tom, my dr calls crohns a seasonal disease, he has more patients in the hospital during the spring & fall. This has been my own situation.

Most of us with crohns eat very few raw veggies, if anything I end up over cooking my veggies to get them soft, lol. She's young & will learn more and more as time goes by.

Tom,

I hope your daughter is doing better.

I forgot to add.....My GI said that I had IBS in addition to the UC/Crohn's about 3 years ago.

My colorectal surgeon was not convinced and he started doing scopes too. He found small pockets of irritation and pus in my colon. He found ulcers, pus and Crohn's in my Hartman's pouch. He spoke to my GI and the GI did another scope and then changed the diagnosis. So please be careful. Sometimes that IBS diagnosis is given because they missed something during a scope, or your body is having a slow moving flare that hadn't gotten bad enough to impact your labs or colon lining.

It's hard to tell. Please let us know how she's doing.

Clo

I'm sorry that this med wasn't as successful. My GI has spoken to me of the process he takes before putting someone back on Remicade. He said he tests their antibodies, tries to drive them down with methotrexate (or one if the others) and when the antibodies are low enough he starts up Remicade....

If they have zero to very low antibodies he still starts them on methotrexate FF or awhile then starts Remicade very soon after.

Premeds in both cases and once Remicade level is above 10 and stable he does allow the patient to slowly phase out methotrexate and premeds if they can.

So far... Knock on wood... It's worked on me.... But after 3 or 4 times now.... I am struggling with the medication working as well as it previously did.

The waiting is the hardest. I can barely stand to wait when it's me.... If it were my child I'd be a mess. I admire your ability to remain calm. Your daughter is lucky to have you looking out for her.

Please let us know how it goes. You all are in my thoughts and prayers.

Clo

Clo

73monte,

I hope you all are able to get that moved up.

Is she having any symptoms of a flare?

Clo