I gratefully found your website 5 years ago or so when my husband was diagnosed.
Being of the stubborn type and wanting to try alternative options after his colonoscopy we went paleo for a time and there was no blood for a couple years. He never took the meds and appeared very healthy with no symptoms until a burdensome work/stress schedule came along and a flare occurred again, last June. He got sinusitis, shoulder bursitis and later found CMV in his Colon which I suspect attacked when his immunity was low but who knows and gratefully kept him from taking a steroid….. He had really high Calprotectin 741.
I was not a fan of his current GI referral and got him switched to a GI doc who practices “integrative” medicine so he actually believes in medicine and supplements.
He was finally able to convince him to take the Mes enemas and things seemed to calm down a bit and after his colonoscopy his bleeding stopped. After he started taking the meds (Mes) 4 a day, enemas most evening and his DR gave him several supplements to take.
- Fish oil (Colon targeted)
- Curcurmin (tumeric)
- Colostrum
- Megalg
- and butyrate
Over time his levels came down to a healthy level and all was well at his colonoscopy 6 months later. I have used the iHaveUC site many times for encouragement and an informational resource. Currently in a flare BUT seems to be getting better, spotted blood in early November after stress and working too much, he’s a fireman so sleep is obviously a big battle in trying to get better. So his flare progressed as they usually do, blood spotted, urgency comes on and then feeling like you’re just deteriorating, intense pains throughout.
In the past the enemas meds helped but he has not been able to take them working way too much to use it and the colonoscopy is a way out which seems to have given his colon a chance to reboot so his ulcers get a chance to heal to stop the bleeding. I’m going to ask his DR if there is something he can take that mimics this cleanout/cleanse. 1-2 weeks ago I started him on intestinal fortitude AI-5 and GLR-6, I had them from my research with the last flare and his urgency seemed to decrease but still visited the restroom a handful a day but then I pulled out all the supplements I had towards UC Morning AI-5, fish oil, Mid day meds (4), Digest enzyme, and butyrate. Evening GLR-6, Pro 50 probiotic, and colostrum. I just added the visbiome yesterday (VSL#3) to see if that can get us over the hump of blood and I’m still waiting for the Megalg in the mail, which will be added to the regimen.. Then next step would be a colon cleanse if GI has a suggestion and then 3rd step would be SCD diet. We’ll see this is all trial and error as you know.
I really wanted to write this hoping it helps someone, thank you for making this community.
Dee Dee
Keep up the good work!
The only other thing would be for him to reduce the stress and never skip what works for him. If it takes quitting his job and taking employment that is much less stressful to get this completely under control it would be worth it. I did not reduce my stress ( husband severely ill), , but I did not and ended up losing my colon after severe flare ups that would no longer stop with any kind of medication or diet change. When my mom was an RN she quit her job at the hospital because she was having rectal bleeding from similar problems as mine. All of her flares stopped and she was able to retain her colon and find a new career. My great aunt at 99 told “if you don’t have your health you got nothing”. A job is just a job, his health is everything.
Wow! He’s so lucky to have you. The SCD diet VSL DS and butyrate enemas were a lifesaver for me and I’ve been flare free for 5 years. But they with always be my go to if a flare comes and visits. I follow a 75% paleo diet and 100% grain free. Also agree with the comment above- get rid of any stress whether it’s a job or a relationship. The body never lies. Good luck to all and happy new year!
Hi Allison, I thought you are not supposed to mix the 2 SCD and vsl #3? Sadly he was emitted to the hospital for a heart issue and they gave him ibprofen and blood thinners and then everything has gotten worse. We’ve been on the SCD for a week and I can’t tell if it’s helping or not and I am nervous to try anything while he’s pretty sick. He’s having to “go” but all that comes out is a bit of liquid and of course blood. I’m nervous, he’s also been on prednisone for a week and I assume it’s not working. Maybe less blood. Let me know if you have feedback.
Hello Allison, where do you get your butyrate enemas from? Did you take them for a certain amount of time then stop? I’ve had a dr say it’s helpful but wouldn’t prescribe it. I found an integrative dr to order it but visits are expensive. Tried only 2 butyrate enemas, I have a few left but they are expired by 7 months now. What are your thoughts on butyrate enemas?
Hi Dee Dee,
Happy new year to you and your family. I wondered how he is doing since it has been a few days since the story was posted and if there has been any positive improvements in this new year.
Thank you again for posting, and wishing all of your family the best in 2022.
Adam
Actually he ended up in the ER not for his UC but something else and they gave him blood thinners and the dreaded Ibprofen (I was so upset) so once he was out he got quite sick and we asked to get additional meds to help with the devastating setback and ended up going on prednisone. I started the SCD to try to at least kill bad bacteria and slow things down. Which helped but the “fermented farmers cheese and homemade goat yogurt with cow starter 24 hr fermented made him super sick) I felt so bad doing trial and error on him but this is kind of how this disease works, isn’t it? Anyway he’d have a good day and then a bad day and I couldn’t figure it out, he then went in again but for GI because he was up ALL night for a few nights in a row with urgency, light blood and liquid and they thought maybe the meds he was taking for the original reason he went into the hospital in the first place causes diarrhea so they cut that back 3 days ago and gave him IV therapy. Had a melatonin induced 6 hr sleep at hospital, a 4 hour the next night and then a terrible night. The medicine causing diarrhea takes a long time to leave so I was hoping it was that. Then went to paleo which was successful for us before. Then yesterday I gave him our original regimen Trybutrin, gut focus fish oil and the intestinal fortitude set AI-5 and GLR-6 and last night he slept the longest he had and without melatonin and today he said was the best day he has had in a few so I’m hopeful with the paleo/pred and regimen we’ll continue to heal. Today was the first day with no blood, still leaky but that was encouraging. Added glutamine today. It was a hard setback for sure but I hope soon I will have a positive update. It was a very emotional last couple weeks. Thank you for checking in!
Sorry I realized I restated a bit of that already, it’s been a crazy time!
Oh Dee Dee, sounds like a tuff start to the new year/end of 2021. Its been a week since you messaged and hopefuly the sleeping is getting better and better without wake ups which often means good things going on inside(at least that’s always been my experience.. and many others too.)
Good luck to both of you, and a huge pat on the back to you for being so supportive. Wishing you both the best,
Adam
You should try indigo naturalis. I have had UC for about 30 years and this supplement has made the most difference in healing my condition. Take care! Jeff
Wow. He is a trooper and sounds like he can make change where necessary. I agree that he might need to reconsider his employment to reduce stress. His job is not just typical stress but reactive traumatic stress over and over. That would spike flares in me and your adrenal glands will go into overdrive and it will not be able to get them vack under control from the chronic stress. When I am sleeping well, my gut is sooooo much better. Sleep is critical too. No processed foods period. Eliminate sugar, and maybe try GAOS diet. For me, cooked protein (turkey, fish, chix) and cooked green veggies can calm a flare and starve the inflammation. Lots of water too, daily. Yoga, meditation, sit and breathe. Be still daily.
correction: Try the GAPS diet