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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.

Reply posted for Jinxed.

Folklore by Taylor Swift 8 oz to cups is a beautifully crafted album.

Reply posted for Jinxed.

Hi – this reply is really for everyone here suffering for years with colitis. I had slowly progressing UC for 10 years (age 40 to 50), until it got so bad that I opted for a total colectomy and j-pouch surgery. I have no way of knowing if my experience is typical, but the surgery literally gave me back my life. I poop about 3 times during the day and about that at night, which isn't that big of a burden, and my pouch gives me sufficient warning before things get urgent (at least an hour). This was 12 years ago, and I have traveled and camped and performed on stage and had nearly a "normal" life. There are some issues (occasional minor leackage at night, need for lots of fiber, etc), but nothing compared to the misery of a full-on flare.

Love to everyone and I hope my story offers some hope or suggests an option that you might find useful!

Reply posted for Jinxed.

Same as me except I've had it for 15 years I'm sorry that you are going through so much sending you lots of love 

Reply posted for laugenstein.

I just want to know that I hear you and empathize 100% with every word you wrote.  I am 50 years old and UC has ruled my life for the last 25 years.  I get no relief from any prescription/biologic/diet.  I don't even think about the amount of money that I've spent trying to get some relief.  My conventional GI docs are a total joke.  I am desperate and planning to join Crohns Colitis LIfestyle  for $4000.
I 100% believe that there is a bonafide treatable cause for my UC (and probably a lot of other peopole too).  I mean I've got rank smelling bloody diarrhea - obviously I've got some recurring GI bug or something.  Does my GI Doc seriously think they're going to rid me of this bug by suppressing my immune system and running the same stupid CDiff test over and over? 
I wish I could tell you something like "Hang in there" or "Keep the Faith" - The truth is, I am struggling to find faith.  
I don't know if you've ever tried breathing techniques, but 4-7-8 breathing helps me when I start panicking.
My heart goes out to you.  

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

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

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.

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.

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?

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.

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.