I have been a nurse all of my adult life, & I suddenly became ill 9/2014. I had never had any GI problems or family hx. I tested + for Cdiff & ended up spending almost 2 months in the hospital literally on my death bed. I was on TPN exclusively for 5 weeks, many blood transfusions , and an emergency loop diverting ileostomy for toxic mega colon. It's theorized by the Drs. that the Cdiff started the assault on my colon & UC took over. After the initial hospitalization I ended up back in the hospital 6 weeks later & was started on Remicaide which initially helped, but I was still hospitalized 9 X over the next year for rectal bleeding , blood transfusions, & unexplained fevers. Last Aug I was referred to a colorectal surgeon for colectomy, and after 3 surgeries I now have had a colectomy & j pouch with my ileostomy taken down 11/15. There is no more rectal bleeding or chronic illness, but I'm left with joint pain which the rhemy says is not arthritis, I still have frequent abdominal pain & nausea although nothing like the debilitating nausea & vomiting before the surgery. I have anywhere from 10-20 BMs a day even with Lomotil not to mention occasional incontinence & seepage as well as bad butt burn. I'm currently on SSDI. Being an RN is who I am it's all I could ever see myself being, but I don't see how I could ever go back to work like this. There were many 12 hour shifts were I couldn't get a break to urinate & with the urgency I have I cant imagine. I'm in a lot of student loan debt too between my LPN & RN so to go back to school for something else wouldn't be financially feasible. There are not many jobs I could make as much as I did as an RN either. I guess my question is how do u manage at work & what do u do? Esp if your a nurse. I'm also deathly afraid of CDiff after all this mess.
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I was 40 and on hiatus from hospital nursing to raise my boys when I wound up with the UC flare that resulted in colectomy. I didn't have C. diff, but did have a lot of complications. I never returned to it.
What I did do was to eventually return to work as a nurse paralegal. It was an easy transition for me because my husband is an attorney and his office could use someone with medical knowledge for reviewing and summarizing medical records. I didn't get any special training, but there are programs for becoming a certified nurse paralegal. I just did it part time as a "hobby" job. The main thing was that I could use my knowledge base and not have to deal with the rigors of the ICU I worked in before.
Jan 
Thanks Jan, I will be 40 next month & also was working in critical care & charge nurse positions. Like I said I don't see how anyone works on the floor when ur always in the bathroom. I will look into legal nursing I have thought about it, my husband is a deputy sheriff & has actually talked about going back to school to become a lawyer. I am just so sad to leave bedside nursing I was at the point in my career where I felt like it was time to move on , but I just never felt ready to leave it behind. Maybe this is the nudge I needed.
MLORN, there may also be more things you can do to improve your function, which would be valuable regardless of your career path. Have you tried soluble fiber (e.g. Metamucil)? Have you been carefully tested for persistent C. diff? Have you tried a course of Cipro or Flagyl, in case this is pouchitis? Perhaps a probiotic like VSL #3 might help. Have you tried Imodium instead of Lomotil, in case it works better for you? Heck, if none of those things worked for me I'd probably try DTO (deodorized tincture of opium).
Most J-pouchers do better than you are describing at six months, though things can continue to improve on their own even at this stage. Do you have a good gastroenterologist helping you with this?
Hi - I want to really encourage you to try to find a path out - I know it will not be easy - Jan's solution was great. I did not really see it coming - my job was as a school counselor - I worked 12 hour days too. I look back and have no idea how I did it - I taught high school before that...well, instead of realizing I was headed for a disaster, I just kept pushing - and at 45, I had sort of a breakdown. I just assumed I would always "pull myself up by my bootstraps" as I had done when I got my pouch at age 23. If I could do it over, I would have spent time giving consideration to "what can I do professionally to bring in some income, feel useful, and have more job flexibility" and I would have pursued it. Instead, I just quit. And I did do some other smaller jobs, but it was all hit and miss - and I wish I had really given thought to planning for a job where I earned enough money to help my husband and I be more financially stable at this point in our lives. Good for you to realize this. The warning signs were all there for me- I ignored them. It was a mistake, but I hope others can learn from it. I am now 53 and I stay home - and that's fine too. But I think I would have felt better about myself had I planned for a part time career using my masters in counseling. By the time I had the breakdown, I just didn't care and it took me years to just get sort of "sane" again I will admit, it was multifactorial - I had a hysterectomy and ovaries removed at 45 and they botched the surgery - and then was so, so sick for so long physically - and also had a major NDE - which told me basically that money was not so important - sanity was moreso...but in this world, money sure does help. Just my 2 cents. Good luck! Way to go to think ahead!
Scott,
I have been tested for Cdiff so many times & after my 2nd fecal transplant I've been negative which was in Sept 2014. I've tried the Metamucil wafers they don't do a lot , I take 4-6 Lomotil a day, I used to take Imodium , but it did nothing. I tried VSL3 it helped a little I just ran out so I need to get more. They are trying to avoid antibiotics bc of the hx of Cdiff. I'm planning on calling my surgeon tommorow he started me on Lomotil in March & was hopeful things would settle down , but they don't seem to be. Thank you so much for all your suggestions.
MLIRN, I am a RN, working on a very busy Labor an Delivery floor. In 2009 (age 51), I was diagnosed with colon cancer and received chemo/radiation therapy, then had a total colectomy with an ileoanal anastomoses. I worked through chemo/radiation and through the six week wait time for surgery. After my recovery time, I worked 4 hours, 3 days a week and gradually increased my work time until I was back to full time. It told well over several months before I was working full time again. I also am taking Lomotil (2 po) before each meal and bedtime, and even had to take several extra breaks at work. If it wasn't for my peers, my very flexible manager and a great place to work (Baptist Louisville), I doubt I would of been successful working. I hope you work for a great hospital, where they will allow you time to heal! Please feel free to contact me anytime.
Lena
MLORN, if you elect to revisit antibiotics, while it's true that Cipro and C diff can be trouble, Flagyl doesn't predispose one to C diff.
Scott, while it is true that Flagyl is generally OK in regard to not promoting C. diff, there are now resistant strains out there, and the hospital environment is where you are most apt to encounter it. So, while Flagyl is safer than most other antibiotics, it is not protective.
Jan
I had my surgery the year I started nursing school. Four months after takedown, I started full time school and a 20 hour part time job. I've worked all sorts of shifts since, and never really had issues at work. I work full time critical care (36-40 hour weeks, 12 hour days). I may need to hit the bathroom about 4-5 times max in my day, but that's about it. However, I've had a relatively decent run with my pouch over the years, and have never needed thickeners or things to slow me down
I'm around all sorts of crazy stuff, like VRE, MRSA, MDRO, C-Diff, etc., and on Humira, and never got anything. I'm just very careful about hand washing and wearing my isolation garb when necessary.
Jan, I agree that Flagyl would almost never be used to treat or prevent C diff any more, except in unusual cases. I think it's still a reasonable pouchitis treatment for someone with prior C diff, though. The idea of "avoiding antibiotics" seems too general to me. Do you have a different idea?
Scott, I really don't have any great ideas. I tried avoiding antibiotics and it just did not work for me. But rotating antibiotics has proven effective for me.
Still, my GI was not satisfied with controlling symptoms alone, since I still had deep, chronic ulcers while taking them. I was even on various biologics at the time. This is the reason for the move to Remicade with Imuran recently.
So, we will see how this works out.
Jan