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I've been waiting to get diagnosed and can't see a GI til Feb. 3rd.  My primary care doctor put me on a dose of Flagyl for 7 days to see if it would help in the mean time.  It hasn't and in fact seems the D is worse on it and now I've been running a fever.  I just feel hopeless cause it seems nothing is going to help me and any kind of antibiotics just makes things worse.  I have also dealt with c diff in the past several times and now I'm afraid this Flagyl will cause a relapse of it and trying to treat the c diff makes my D even worse too!  I'm really scared and afraid I'm stuck between a rock and a hard place.

Amy

 Reply posted for hennypenny68.

Oh Amy, I'm so sorry to hear that you're so sick! It's so frustrating dealing with doctors when you're too sick to do anything --- Here's a gentle (((hug)))) for your poor body!

I'm so glad Wendy posted because she has a better understanding of what you're going through than I do. The darkest years of my IBD were when I was 8-14yrs old, and my mother was my medical advocate. She learned more about IBD than most of the docs and found out about the medicine that has worked so well for me. Now that I'm in my first "adult" flare-up I'm finding out just how draining it is to be your own advocate/coordinate multiple specialists/try to figure out what in the world is going on with your body. And you have to do all this after being in the hospital for a month!!!! I'm so sorry - here's another gentle (((hug)))

- Sabrina

 Reply posted for breezy.

Wendy,

Wow, you have really been through it too.  It's amazing that a vascular surgeon was able to help you.  I've seen all kinds of specialists, although that's not one of them and each have said, I'm complicated, interesting, a mystery, a puzzle.  Nothing that I want to hear.  I don't want to hear something that's terminal but I don't want to keep living like this either.  I'm on prednisone and it usually makes me crazy and I'm going to be on it for awhile.  It sure hasn't helped anything either.  It feels like it takes every ounce of my being to even move.  My whole body feels like it's in mud and my sinuses are so swelled that it feels like I can't breathe at all.  Also, I got put on macrobid for a uti.  I pray it don't make my gi worse than it already is.  I don't think my body can take much more.

Amy

 Reply posted for hennypenny68.

Amy,

There is hope.  November of 2008 I was lying on my sofa, I took my husband's hand, and said "I can feel my body dieing."  I was going to a lot of doctors.  Finally a vascular surgeon saw me.  He said that it was systemic.  He ordered an array of blood work.  He pushed my GP to have me admitted.  I was in severe malnutrition.  Protein levels were dangerously low.  I was in the hospital with TPN for 17 days.  Went home and started weaning off prednisone.  Long story short, total of 42 days in the hospital between '08 and '09, 2 surgeries, lots of tears, lots of fights over meds, and now slowly recovering.  I can finally exercise some now.  I have very little muscle left in my legs.  I used to work out daily.  This has been a trial for me.  I have had Crohns for almost  20 years.  This is the first time it has really laid me low.  Keep pushing with the doctors.  Ask about your protein levels.  I will not tell you to smile and hold your chin up. I know that is almost impossible.  I will tell you that I and many others are keeping you in our thoughts.  This is the long haul.  I have more "complications" than many docs have ever seen.  I don't present normally (whatever that is!).  I laugh now and celebrate my uniqueness.  Let the emotions out.  Oh, laughter does help.  A good belly laugh helps the digestion and the spirit.

Hugs!

Wendy

 Reply posted for SabrinaMarie.

I haven't been able to be on here cause I ended up in the hospital for 26 days!  Still don't know what's wrong much more then when I went in.  They say I have Crohn's but so far treatment isn't helping.  My knees became so excruciating that they first thought I had septic arthritis but cultures didn't grow and all they found was crystals and said it was gout.  I'm a medical mystery to all the doctors.  My wbc went through the roof up to 46.  They said crohn's wouldn't cause that.  I've been through a whole gamut of tests, colonoscopy, camera pill and they said I have ulcers and inflammation in the colon and rectum.  Still don't have much of an appetite and keep trying to drink ensure with beneprotein.....yuck!  I also worry about my heart, it's beating fast and during the colonoscopy I had v tach.  Cardiologist says probably from my thyroid being out of whack and not enough protein.  I'm not so sure that's all it cause I've had heart palps when I was fairly well.  Anyway, I just needed to vent cause right now I'm scared out of my mind, have no hope, especially knowing no matter how bad I feel there isn't anything a doctor on this earth can do to help me.

Amy

 Reply posted for hennypenny68.

Chin up..I had c diff as well before, winter 08 and Flagyl cleared it up.My UC has been flaring since late November, stress at work only exacerbated it. Caught cellulitis infection on my face, antibiotic prescribed, taking Mesalamine supp. enema at night, D 3x a day for the last 5 days..will call doc tomorrow as I suspect c diff again, Flagyl is suppose to be the 1st choice, less expensive too...wishing you and I a speedy recovery soon.

 Reply posted for hennypenny68.

Does the pain in your knees feel like it's in the joint? Unfortunately joint pain seems to be pretty common with IBD (http://www.ccfa.org/info/about/complications/arthritis). When I was younger and my Crohn's wasn't really under control I had a lot pain in my hips/knees/ankles. Recently my knees have started hurting again... argh!

[As an aside: I think I mentioned that this winter I developed blood clots in my legs that went to my lungs. The first sign of this that none of my doctors recognized as a sign of clots was a week-long Charley-horse in both calves that made it nearly impossible for me to walk. (If you get anything like this ask your dr. about blood clots - since getting mine I've heard about a lot of folks with IBD who also got clots.)]

It's frustrating being limited to Tylenol as a pain med!!!! But other things can really make the IBD worse. When I was in a lot of pain I talked to my drs and they told me how much tylenol I could take, and how often. They also said to take it every x number of hours even if I wasn't in pain at that moment - doing that seemed to help some.

I hate it when people tell me to "hang in there" so I'll send you a hug instead: (((((hug!))))) 

 Reply posted for SabrinaMarie.

I tried calling the GI again today and they said I'm on a cancellation list but basically it looks like I'm going to have to wait for the Feb. 3 appt.  I even told them I'm running a fever and they said I will just have to see my regular doc in the meantime if I get worse.  She doesn't really know what to do for me.  Now I have a new weird and extremely painful symptom.  Both my knees are killing me!  I can hardly walk to the bathroom without screaming in pain!  What the heck is going on?  I've never had anything like this happen before.  I told my regular doctor about it but she thinks it's from nutritional deficiencies.  I need something for the pain besides regular tylenol.  I kept my hubby up all night cause I couldn't sleep from hurting so bad!

Amy

 Reply posted for hennypenny68.

I'm so sorry for what you're going through. My latest Crohn's flareup started last summer, and in the beginning I didn't think it was a Crohn's flare because my symptoms were really different than my "normal" flares. My GP put me on Flagyl thinking it was parasites and oh boy, did it make me sick (diarrhea and vomiting)! When I got to a GI and had a colonoscopy which confirmed it was a Crohn's flare he put me on prednisone and 6MP, which calmed things down really quickly. But now I'm dealing with blood clots in my legs and lungs and waiting to get into a Rheumatologist - argh!

Anyway, I wonder if you could get into the GI quicker they knew you were now running a fever (check your temp so you can tell them what it is).  You might try calling the office and telling them you have a fever and wonder if there is any way you could get in sooner, or if they'd call you if they have a cancelation so you could take that appt.

While you're waiting...

I've found that a calendar to track my symptoms has been really helpful - I have a mthy/wkly planner and the mnthly part has turned into a "what's wrong with me today" record . Last time I was at my GI it really helped me to give him a clear pic of what's going on.

Tracking my symptoms also helps me to combat that panicky feeling of "what in the world in going on with me". It helps me to know I'm doing something to make my doctor appts as productive as possible.

Anyway, I just wanted to tell you that feeling scared is perfectly normal. But please don't give in to feeling hopeless - use that energy instead to focus on what you can do while you're waiting for your appt to get the clearest picture that you can of your own symptoms.

Believe me, I know this is much easier said than done!!!!!

Keep us posted, ok?