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What's next?

Tue, January 29, 2019 7:43 PM

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. 

Joined Jan 29, 2019

Thu, August 15, 2019 9:51 PM

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. 

FPO Valvos
Joined Aug 15, 2019

Sat, June 15, 2019 7:14 PM

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!

FPO MoiMeme
Joined Jun 15, 2019

Wed, June 12, 2019 7:00 AM

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.  

FPO agewithgrace55
Joined Jun 12, 2019

Tue, April 23, 2019 10:25 AM

Reply posted for charbs.

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.

FPO sarabelle
Joined Apr 23, 2019

Fri, April 05, 2019 8:32 AM

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.

FPO charbs
Joined Oct 31, 2016

Fri, March 29, 2019 5:21 PM

Reply posted for LC11.

Hey! This is a really late reply, so may not be relevant anymore. 

I have Crohn's diagnosed 5 years ago while I was a senior in nursing school. Now as a pediatric RN I can somewhat relate to your situation as a teacher. I can't leave patients to go to the bathroom and i'm also in the germ capital of the world lol. I have had to take a couple of medical leaves for a few months each during my first few years as a nurse. I even had to be on light duty at work for a while until I could transfer to a less stressful area (I was in CVICU). 

I'm not sure what you have decided, and it is a very personal decision, but a short time away may be what you need to find the right therapy and be healthy enough to return to work. If being a teacher is what you want to do, don't give up on it, just take the time your body needs to recover. 

Also, are you seeing a GI that specializes in IBD? If not, that may be something to look into. My current GI only sees patients with IBD and is up to date with all the new therapies and research studies. Definitely advocate for yourself. You know when something isn't right. Listen to yourself. I've had to argue with my GI and beg for a scope before. After sheepishly admitting that i had several fistula tracts that were abcessing, he now listens to me. He knows that when i complain of something, there's actually something wrong. 

FPO kmketchersid
Joined Mar 29, 2019

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