Finally joined-- need the support.

I have been reading for months and finally decide that since healing well has been such a support for me, that maybe it was time to actually participate. I was diagnosed with Crohn's disease in my terminal ileum in May of this year. After my current GI received my chart from my prior GI, we learned that I had actually been diagnosed with CD in 2011. When I learned of that, my blood boiled because in the past 2 years my health has only rapidly plummeted. I remember having stomach problems since I was in elementary school. Having sporadic D, nausea and constant infections has been an ordinary part of living for me. Now, at 27y/o, my fight against all these constant infections, fatigue, bouts of D, nausea, days of severe pain, have drained me beyond description. I tested positive for C-diff in May as well, and I am SO fearful that I have developed C diff again. I started taking Humira with a combination of predisone 2 months ago. After only a few days on this combination I was feeling AMAZING. After being sick as long as I could remember, it was remarkable how amazing I felt. It didn't hurt to have clothes on, to breathe, and my mind felt so clear! Its so crazy how much you notice how the disease has affected your entire body when the symptoms are gone. But.....since being on immunosuppresants and working in the mental health community field, I started running a fever & went to the nearest walk in clinic. Tested me for the flu (I had the flu shot) and BAM, tested positive. They put me on a Z pak and flagyl 500mg 4x a day as a preventative measure. I couldn't stand the effects of the flagyl and stopped taking it after 6 days. I developed thrush from the antibiotics, and I am now taking diflican for 7 days. Thankfully my thrush is slowly getting better! But, all in all....I am feeling RUN down, my mind feels foggy, those old familiar stomach pains are back and I am SO fearful that either the C diff has returned or I'm back in a relapse with my CD. I know that mentally I cannot handle being in the place I was 2 months ago before the humira and predisone. I was at my wits end. I am not sure what next step to take. My Gi is on vacation until January 6th. I have an awesome relationship with his nurse, which is very helpful. My poo is currently solid but is very clay colored & breaks easily. I am also having to go more often, like 5-6x a day right now, even with it being solid & clay colored. I am asking for support, encouragement, advice from all you fellow crohnies who I'm sure can relate to my story. Thanks for reading!

Welcome to the forum.

My kid had the flu (also had the flu shot) and made her symptoms & flare worse. The flu probably isn't helping it and it takes a while after any illness to get back to where you were originally. Stress is a big factor so do what you can to minimize it. She also flares when she gets her period & I hear others do too. This forum has helped me lower my stress factor to lower my kids, as has reaching out to friends & family (that don't tell me what to do). If it gets too bad, you have the ER, but you are better off waiting the week when the GI returns.

Our GI has me increase & decrease Prednisone as needed ( I just call her so she knows what I am doing to chart it). 15 mg is a low dosage. When you see your GI and you are still feeling like you do, he may suggest increasing the Prednisone to 40 mg to help get it under control, then you can taper down when symptoms calm. Hang in there.

Since the symptoms re-appeared after antibiotics, I think you should call the nurse and ask to have stool studies to rule out c.diff. The nurse can probably get an order from the on-call GI. I try not to take antibiotics unless I have a known bacterial infection because they mess me up. The flu is viral. It is true that you can get a bacterial infection after, but given your history you might want to try to avoid preventative antibiotics in the future. I hope you feel better soon.

scifigal- I have thrush in my mouth from antibotics. Well, atleast thats where I think it came from. We do have very similar backgrounds! That is one reason I finally decided to join the community because it has been the one place I have found people who understand. Thankfully I have had zero hospitalizations. Now, that's not saying I haven't been to the ER a time or two, but I was never admitted. I only go to the ER if I HAVE to go because of my past experiences. Last two ER visits were within a 24 hour period, with both ER doctors saying "well I dont know whats wrong with you. this is an ER and this is NOT an emergency." I sat in both rooms and just cried after these doctor's showed zero compassion for how horrible I was feeling. I seriously felt like I was dying.
C-diff wise, my poo doesn't had that distinctive smell, so I am guessing that is a good sign. I've had some bad spasms in my stomach this morning but I also ate spicy food yesterday.

gumby44- I am now realizing that I will refuse antibotics unless it is a complete necessity. Too many side effects and things that occur from the antibotics. I plan to call the GI nurse if my stomach starts to hurt again. So far today I am okay and I'm good with feeling okay.

Question Everything- I have been seeing a lot of FT, is that the surgery you are talking about or talking about having the infected parts of the TI removed? I know that since I have missed SO much work, that being out even more could result in me losing my job. I actually put in my resignation in October because I was so sick but after the Humira & Pred started working, I took back my resignation. I was told that since I was staying that if I continued to miss, I would be written up. I have been in the process of trying to FMLA for my job to protect me, but it has been a pain between HR and my GI. HR wants him to answer questions about "what could happen" and he said that he cannot predict the future. I wish he would just write something sufficent so I can be approved. I am working with his nurse to hopefully make sure it is sufficent enough this time.

The life of a Crohnie!! *oy*

JaSanne,

Thank you for your words of concern. It was more brown today. It hasn't been whitish or grayish, so thats good! I also checked my eyes and they are fine.

Sounds like it's been rough. :( I hope your surgery goes smoothly and that you don't stress about TOO much about your parents.