Community Forum

Hi everyone, 

I was diagnosed with UC in early July of 2018 and have since been fighting what feels like an uphill battle. If anything, things seem to be at their worst right now. I just spent 4 days in the hospital after going to the ER with a 104.4 degree fever. I was admitted with a case of the flu (even after having the flu shot), but it was soon found that I also had sepsis and pneumonia. It was a harrowing 4 days, to say the least, mostly because it was totally separate from my UC (though certainly a result of my weakened immune system from all of the drugs I've been on). 

I'm at a loss. I've been on and off prednisone pretty much the whole time since diagnosis, started Remicade in October (And continuing to up the dose-- now getting a max dose every 4 weeks), and also take apriso, uceris foam, and 6 pm (though currently not taking that due to the other illnesses I'm now having to fight with antibiotics). 

I'm a teacher, and have been struggling to continue working through this. I had to take a leave of absence for 2 weeks in December, and now will be out for at least a week or 2 total due to this issue. It feels like the worst possible job for me to have for so many reasons-- inability to run to the bathroom, total cess pool of germs (kindergarteners!), and while I have an understanding boss, I feel so incredibly guilty for not being there each day for my kids. My husband and family think that it might be best for me to stop working until we figure this whole thing out, i.e. take the rest of the year off. After being hospitalized I am feeling the same way, but am so worried for what it might mean long-term for my career, my health, my day-to-day life. 

When is it time to give up on remicade? Seek second and third opinions? I like and trust my doctor, but at the same time, clearly this is not working. 

Thanks for reading, and my apologies for the lengthy post. This is my first time reaching out rather than passively reading, and I'm hopeful that it will give me some strength to make a plan and keep working towards recovery. 

Reply posted for LC11.

Dont stop working or your body will be weak.Im retired and 65years old.In these years that i have had UC ,i couldnt take any medicine cause i got worst except Corticostroids once i have flare up.Now i have colovesical fustula and cirrohsis.The big problem is fistula that i dont want to do cyctography test and then 2operation for my colon and bladder hole cause i have heard again i will get it.I dont know what should i do.

Reply posted for kmketchersid.

Did you have surgery for your fistula? After having UC for about 15years now i have an abcess due to colovesical fistula.2months ago i did surgery for my abcess and now again it is growing .I just use warm bath and the pus are releasing from the small scar of my last time surgery . I also see small amount of feces in my urine.I have UTI too which i take Ciprofloxacine and Metronidazole.Is something bad happened if i dont go to the surgery for my fistula ?

Reply posted for MoiMeme.

After having UC for about 15years now i have an abcess due to colovesical fistula.2months ago i did surgery for my abcess and now again it is growing .I just use warm bath and the pus are releasing from the small scar of my last time surgery . I also see small amount of feces in my urine.I have UTI too which i take Ciprofloxacine and Metronidazole.Is something bad happened if i dont go to the surgery for my fistula ?

Reply posted for kmketchersid.

I just saw your post and am curious about how your doctor is treating the fistula? I just had an appointment and learned that I have 2 strictures and a fistula and a nodule (hopefully benign) somewhere in between. I’ve had crohns for 15  years, so this isn’t a
total shock but I’m having a hard time deciding on a treatment route. Biologics are pushed so heavily and I’m curious to learn if there are other options out there. 

Reply posted for LC11.

I'm sorry you are having such a rough time. I also teach, and getting from my trailer, past the locked school door and down a 75-yard hallway to a 2-stall, often occupied restroom was quite stressful. I also fasted until I could get home, which left me weak, tired and brain-fogged. When things worsened to constant bathroom trips with constant pain, I had to take time off. I was mid-way through 2 months of Uceris, but things rapidly worsened. What had started as a week off to get stronger became 4 months (to the end of the year) to wage the hardest battle I've ever fought. If you are financially able, I do recommend that you cut yourself a break and take a medical leave. First, you need the time to make doctor's appointments, then to find an effective treatment plan, then to regain your strength and stamina. Entyvio is working for me at this point, so symptoms are reduced by 98 percent. Regaining weight and vigor is a continuing process. Other things that are working for me include taking the best probiotic I could find, keeping track of my water intake, modifying my diet, and putting rest before chores. Bless my husband! There is so much information available on the internet that I credit with helping me take smarter action than simply relying on a drug. Lots of reading also helped me ask smarter questions of my GI doc and the infusion nurses. Do a lot of research; you won't regret it. Good luck!

Reply posted for LC11.

I totally sympathize with you as a fellow teacher!  I have an arrangement with the teacher next door that when I poke my head through the door and give her a panicked look, she'll watch my class.  I try not to eat until planning some days, when the diarrhea is really bad.  I haven't told my administration about my diagnosis yet.  I don't want it to be a factor in their assessment of my teaching.  Maybe I should.  I haven't started treatment yet, and am a ittle nervous about what it will entail.  I don't like the way I live now, and am glad to have an answer to the "What's wrong with me?" question, but hope the life changes I'll have to make are worth it long term.  I'm really hoping for relief from joint pain and fatigue as well.  

Reply posted for charbs.

Hi,
I just submitted my Beloved's story about his struggle with UC, you should be able to read it soon. He is almost 70 now and in good health. He was prescribed 6MP 15 years ago and it almost killed him. He survived that and consulted with a specialist in Boston, Dr. Mark Peppercorn, who prescribed a Probiotic called VSL3. That worked better than any of the other drugs described on this website!
Good luck from SaraBelle.

Reply posted for LC11.

I was on remicade for two years and it did nothing for me.  I had to fight my doctor to try something else. Now I’m on entyvio and don’t see any improvement there either.