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Wish I could just give up

Tue, April 19, 2022 12:20 PM

I have had UC for over 40 years. Been thru a lot, resection, absesses, no biologic's work. Lialda helps a lot but lately bleeding. Prednisone at a low 5-10 MG will keep me feeling great, but my Dr will no longer rx except for a 2 week dose and taper. Im 62 and sometimes wish I could just give up, but its really not an option. I feel like a fighter that has been in a continuous million round fight. The fight never ends and nothing improves. Discouraging is to mild of an explanation. If I had no family, I would have probably offed myself by now. It downright hurts to live. Im at a loss. Other than family, I have no life. Making the best of it is getting harder as this continues. I dont tell family how bad I am doing because then they worry and dont want them feeling the effects of my UC. Just wanted to vent. Hope others here are doing well and prayers to you all.

FPO Jinxed
Joined Feb 28, 2021

Thu, December 07, 2023 12:53 PM

Reply posted for Colitis2022.

Hi all, First of all I'd like to say thank you for all the replies and suggestions. I hthen in mission since february of this year. I experimented around with cbd oil.and found a brand that is working amazing for me. I believe it is the CBD oil. Since it's the only thing I really changed. About four weeks after starting this brand of cbd oil, all of my bleeding stopped. I actually felt good enough to fly from Cali to Florida and visit my son. He works at NASA and I was able to participate in NASA's Family Day Open House day with all of the normal people and didn't even have to run to the toilet at all. I have not had any obsessive issues all year. And my fistula is pretty much healed up doesn't drain at all. I am able to eat 4000-5000 calories a day now but still struggling to gain weight due to what my Dr feels is malabsorption still going on. There is still a war going on in my colon but at least I am able to live a somewhat normal life. I can't really explain why I am feeling so good other than the CBD oil. I guess the moral of my story is never give up. Thanks to everybody for sticking with me during such difficult times. Prayers and best wishes to you all through this holiday season

FPO Jinxed
Joined Feb 28, 2021

Thu, December 07, 2023 4:22 AM

Reply posted for soyjoyous.

I'm so sorry to hear about the difficulties you've been having with UC. For such a long period of time, I can't even begin to fathom how challenging it must be to live with this illness. I am really amazed by your <a href="">tunnel rush</a> courage and tenacity, especially considering the fact that it seems like you have gone through a lot. 


FPO soyjoyous
Joined Dec 7, 2023

Sat, September 30, 2023 12:07 AM

Reply posted for Jinxed.

Forgot to mention; if you have UC you have a high likelihood of being anxious and depressed. There's conclusive evidence that the gut and brain are connected. If your gut biome is messed up it affects your brain

FPO ljohnst1
Joined Sep 29, 2023

Sat, September 30, 2023 12:03 AM

Reply posted for Jinxed.

Not sure if this will help...I have mild UC and I was bleeding for over a year with 8 bms/ day. The MD put me on max dose of Lialda which did nothing. Frustrated, I did some research and found the book Psychobiotic revolution by Scott Anderson 2017. What an eye opening. After confirming his recommendations with the NIH, I started taking Sodium butyrate with a particular probiotic and I stopped bleeding in one day and 2 bms/day. Why in the hell isn't GI talking about this. Pisses me off. Good luck my friend and hope this helps.

FPO ljohnst1
Joined Sep 29, 2023

Sat, September 23, 2023 8:12 AM

Reply posted for Poppy.

I'm so sorry to hear about your struggles with UC. I can't imagine how difficult it must be to live with this condition for so long. It sounds like you've been through a lot, and I'm so impressed by your strength and resilience.

I've heard good things about ostora tv, a streaming service that offers a variety of shows and movies about UC and other chronic illnesses. It might be a good way to connect with others who are facing similar challenges.

FPO Poppy
Joined Sep 23, 2023

Wed, August 23, 2023 1:08 PM

Reply posted for Jinxed.

I'm alone witk severe UC also. My Dr. ordered pllative care @ home to give me an added layer of support. You might want to ask your Dr. for a referral. I'm just meeting with them for the first time this week. Can't hurt! Maria.

FPO ReReJean79class
Joined Aug 22, 2023

Tue, July 25, 2023 1:10 PM

Reply posted for Jinxed.

I hear you. And I am so sorry you are going thru this. My son was diagnosed this year and is suffering so much. Your words resonated because he literally just said the same to me. He is unmarried, 36 years old, and lives nowhere near family. I feel helpless to support him. 
Please...tell your family how you are feeling. I've learned this is a disease that cant be fought alone. So much support is needed. 
Let me know how you are doing, ok?

FPO Nicks mom
Joined Jul 25, 2023

Thu, February 23, 2023 9:18 PM

Reply posted for Colitis2022.

Hey, thanks for the reply. Sorry for the delay. How is your gut treating you? Hope all is well. I had a few months there, from end of Nov thru start of February that I was flair free, no bleeding, eating well, life was good. But, now, bleeding started back up. My GI insisted I get a colonoscopy. I told him it would through me into a flair, and it did. It also aggravated my fistula and now I have a small abscess with fistula, constantly draining and painful. Consulting with a CRS about just removing my colon and rectum and going the bag way. Except, a guy with UC in my CCFA group just had that done and now less than a year later, dx'd with CD. So after having his colon removed, he now is back on biologics for his small intestine inflammation. What a sucky disease this is. And yes, after this long uc, my diet is very limited and I know most of my trigger foods. I gave up dairy over 4 years ago.

FPO Jinxed
Joined Feb 28, 2021

Sat, September 10, 2022 3:19 PM

Reply posted for Jinxed.

I understand, I have had UC for 35 years. I'm 60. I am currently taking prednisone and Lilalda. Tapering prednisone. It's hard, and depressing but I'm feeling great on the prednisone. I don't like telling family either because I get tired about talking about my stupid colitis. Hang in there. `for me diet is a huge deal. I can no longer tolerate any red type hot sauce Mexican red sauces, Italian red sauces. Zero milk. Basically meat and potatoes. Good luck, your not alone.

FPO Colitis2022
Joined Aug 4, 2022

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