Does anyone suffer from Crohn's or colitis?

Posted by blu15 @blu15, Feb 18 8:32am

I got diagnosed with Chrons disease back in January I’m 56 years old got it unexpectedly from eating something that caused food poisoning and I never got better. Ended up in the ER in December and my body just shut down. I’m on the mend getting better everyday but I’m skeptical about the medication they put me on! Bad side effects!

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@lss111

Hello, I was treated for IBS 12 years without success. 2023, flair prohibiting even leaving my home, CT indicating inflammatory colon, Crohns, IBD or cancer supported by testing. Colonoscopy repeated, pathology- Microscopic Lymphocytic Colitis. Budesonide 20 weeks due to relapse (I did well on Budesonide 3 mg/ daily however providers will not prescribe due to adverse effects). Curently taking Cholestryramine, 3 x daily. I have had 3 second opinions on treatment. All say remain on Cholestryramine. I have followed everything, diet, stress reduction, pre and probiotics and I am not doing well. Liquid stool, intolerable pain, fatique. Seeing counselors. Family little support. My quality of life is dismal. I am reluctant to try biologicals due little research, poor efficacy and high adverse effects. I am open to input. I am grateful for this forum and hope to hear back.

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I add my welcome @lss111. I moved your post to this existing discussion so that you can read previous posts and connect easily with others living with Crohn's and colitis. See this link:

- Does anyone suffer from Crohn's or colitis? https://connect.mayoclinic.org/discussion/does-anyone-suffer-from-chrons-or-colitis/

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@1000riverrat

I looked it up and Naltrexone is used to treat opioid disorders. What is the connection to Crohn’s?

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I works by activating your immune system and also down regulates your microglia that are part of your nerves support system. They are resposible for telling your nerves that you need inflamation. (Even if you don't) There is loads about how it works on the Net. Just look it up. BTW: I was on 9 mgs of Budesimide (for a number of weeks) when I started the LDN. I was able to taper off of it. The usage for opioids is usually not the low dose level.

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@pb50

Oh sweetie I hear you. I was diagnosed in 2023 with a Yersinia infection and received antibiotic. That gave me C-Diff, so in September, 23, I received a new antibiotic. Still with diarrhea, my new Gastro doc scheduled a colonoscopy and I was diagnosed with the other flavor of Microscopic colitis - collagenous colitis. For me, the medication triggers seem to be non steroidal anti inflammatories (ibuprofoen) and proton pump inhibitor (nexium) - [identified by
stopping those and a Couple of other known triggers and then adding them back one at a time. ]

I was given Budesonide - a colon-specific steroid that doesn't have the generalized side effects of other steroids. It was a miracle delivered in 9 weeks

Life was great. For the first time in almost a year I was confident in leaving the house.

But I have relapsed almost 3 months ago - possibly due to nsaid eye drops for a month after cataract surgery - or as my Rheumatologist with a PharmD believes - due to nothing specific. Budesonid didn't work this time. So while i was waiting for an appointment with my Gastro, I researched in National Institute of Health (NIH) for treatment research in cases of MC relapse when budesonide fails to help.

They researched giving three 262mg Pepto Bismol capsules three times a day and a restrictive diet of very low fiber, fat, and sugar - think white bread, scrambled eggs, white rice, bananas, soft cooked, low fiber veggies like green beans, white or sweet potatoes, carrots - all no fat (tho I use some plant based butter in small amounts). Drained, no sugar added canned fruit (like peaches and pears) Or stewed apples, no sugar and no peel. I eat small amounts of soft cooked white chicken, baked salmon or mild white fish. I can also have a ground turkey patty and I get baked lean ham from the deli i can roll up to have with eggs or rice. I bought a rice cooker and make rice every other day.
This is my diet and it plus the pepto bismol has helped tremendously. I would eat gravel if it helped. I see my Gastro tomorrow - i will let you know what his thoughts are. But i strongly recommend considering a colon calming diet and Pepto Bismol.

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Dear friend, I am so grateful for caring people such as you reaching out and for your wise advice. I do have questions and hope you don't mind if I ask them tomorrow. I want to formulate my questions in hopefully a intelligent manner. I am interested in what your GE's opinion and thoughts are. I do understand if you don't want to share- privacy! I hope your appointment went well. Thinking of you!
.

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@colleenyoung

I add my welcome @lss111. I moved your post to this existing discussion so that you can read previous posts and connect easily with others living with Crohn's and colitis. See this link:

- Does anyone suffer from Crohn's or colitis? https://connect.mayoclinic.org/discussion/does-anyone-suffer-from-chrons-or-colitis/

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Thank you Ms. Young, I am grateful for this opportunity to learn and share with those like myself. Best!

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@lss111

Dear friend, I am so grateful for caring people such as you reaching out and for your wise advice. I do have questions and hope you don't mind if I ask them tomorrow. I want to formulate my questions in hopefully a intelligent manner. I am interested in what your GE's opinion and thoughts are. I do understand if you don't want to share- privacy! I hope your appointment went well. Thinking of you!
.

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Sure thing. We don’t use our real names or our Doc’s here - so I'm good on privacy.

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Met with Gastro today. We are going to start a new course of Budesonide at the same dosage and tapering intervals as a newly diagnosed patient.

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@suetex

I works by activating your immune system and also down regulates your microglia that are part of your nerves support system. They are resposible for telling your nerves that you need inflamation. (Even if you don't) There is loads about how it works on the Net. Just look it up. BTW: I was on 9 mgs of Budesimide (for a number of weeks) when I started the LDN. I was able to taper off of it. The usage for opioids is usually not the low dose level.

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I just ordered some online through AgelessRX, $75 for a three month supply. Can I ask if this is comparable to what you are paying?

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@1000riverrat

I just ordered some online through AgelessRX, $75 for a three month supply. Can I ask if this is comparable to what you are paying?

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I get 30 capsules of 2 mg ea for $55. If the prescrition is written for 4mg a day (2 capsules) then it is cheaper. I get 60 capsules for about $77. I don't know what strength your capsules are but it sounds like you are doing better than me. This seems to be what compounding pharms are charging in my area.

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I was diagnosed with crohns this past spring.

I was prescribed infusion with remicade( inflixemab)

Recommended by two GEs.

Only have had two low dose, and my third is August 9th.

But it has helped me tremendously!

I had lost 120# before infusion. But have gained 3O# back. Woo hoo!

Would not recommend the weight loss program!

But I can now eat. Keeping a log on what works and what doesn’t.

Oddly foods that work, sometimes fail. No idea why. But a journal is important. Portions and time of day!

Bread works in small portions.

Good luck. Keep the faith!!

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@pb50

Sure thing. We don’t use our real names or our Doc’s here - so I'm good on privacy.

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Hello friend, I am so sorry I haven't reached out with questions. Unfortunately, I have very serious and escalating family issues. It is almost impossible to manage stress with this situation even with the best self management. I am also in the position of family counselor clearly not helping lymphocytic colitis. I have relapsed and been ill for 2 days- unable to leave my home. Back to BRAT diet. Gastro feels a "wait and see" approach first. I am sorry and will reach out when better.

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