I am not sure what is going on with me...

Hello,

I posted on here a little bit ago. I thought I was having a flare because I am having bloody loose stools, but then my doctor informs me that my blood work looks "normal" and that he thinks this might be something else. I am 26 years old, and I have had Crohns/Ulcerative Colitis since I was 19. Oh, I forgot to mention, I am on 30 mg of Prednisone and I have seen absolutely no improvement while on it and it has been a month. I am really starting to get concerned that I have developed colon cancer. My doctor cannot see me until the end of May. So, here I am a nervous wreck thinking my life is over at 26. If anyone has any insight or advice I would really appreciate it. I really don't know what else it could be at this point. The strange thing is though, that I don't really feel sick...

I was originally diagnosed with Ulerative Colitis, but then two years later I did another scope and it showed inflammation in my small intestines. Then, another 2 years later or so, I had a bad flare and needed to be scoped and that doctor ruled out Crohns. So, quite honestly I am not sure what I have. I just know that my disease goes throughout my whole colon, and that it's pretty severe. I just wish I knew what was going on and that my doctor cared enough to get me in for an appointment sooner. The blood is infrequent at times and then at other times the whole bowl is full. I just don't understand why the steroids are not healing me if it is my IBD...I'm just so frustrated, I just started my dream job and I am so worried that I am going to have to take time off from work. Thanks for your input, I really appreciate it.

Wow Char, your doc's really put you through the wringer with your DX...not sure why they would have gone back to ruling crohn's out since CD can affect the entire GI tract from mouth to anus and they initially found inflammation in your small intestine, that's just silly that they would change it to UC because the time after they did not see it in the small intestine.

When I first became sick, CD was affecting my anus (perianal crohn's skin tags) rectum, colon and small intestine....it was in all those places at the same time for 2 yrs, then after that it was no longer in my small intestines and hasn't returned there ever since (small intestine free for the last 19 yrs) but has stayed constant in my colon and anus (with the perianal crohn's) and comes and goes in the rectum and I'm definitely a clear case of crohn's based on the perianal crohn's skin tags which are only indicative to crohn's, the skipped pattern of inflammation that goes with having CD (with UC the entire area will be inflammed and there will be no skipped paterns or "patchy" inflammation) the pattern of inflammation and disease location are the 2 key differences between UC and CD.

Also with CD, the inflammation can go through the many layers of the intestinal lining, with UC though, it's surfaceable only so that's another key difference that a good GI will note in properly DX a patient.

I have what's referred to as crohn's colitis which is CD affecting the colon where UC typically hangs out, but my pattern of inflammation indicates CD cuz it's patchy and my inflammation goes a little deeper as well, also indicating CD and I have the dreaded perianal crohn's skin tags which to not coincide with UC at all.

The same meds used to treat crohn's colitis are used to treat UC as well since it's all about the meds targeting the colon...so even if your doc is on the fence about which IBD you actually have, at least the same meds can be used to treat your colon.

I hope you find relief soon.

Normal blood work doesn't automatically exclude active disease. Check out the last few posts in this thread to see what I'm referring to. To definitively rule out Crohn's, you need to look at all the bowel, not just the colon. That means a small bowel examination on top of a colonoscopy, or the pill cam.

Re the steroids, not everybody responds to them. Some patients are 'steroid-refractory', which means basically they don't respond to them. I have to say, 30mg is fairly high, but you might possibly do better at 40mg, which is the standard starting dose for a course of steroids. Unfortunately 'cos you've already been at 30mg for a month, I'm not sure it would be a good idea to increase the dose now. Steroids are not something you want to be on any longer than you absolutely have to, really.

At any rate, it's extraordinarily unlikely to be bowel cancer at your age.

Edit: Well late with my reply - it seems irrelevant now, oh well :/

When my doctor did all the bloodwork before my first colonoscopy, the bloodwork didn't show any of he normal inflammation or whatever they normally look for. He said it all came back normal. But then I had the colonoscopy a couple days later and he found the ulcerations and took biopsies. He said after just looking it was crohns and the biopsies came back saying crohns too.

Omygoodness!! I agree that its for sure bloodwork is not the only indicator. This is drastic, but I feel you should do whatever you can to see another GI. Ask your primary for a personal call to get in ASAP, ask to be put on a cancellation list, ask the secretary for help, etc. I'm young too and you're so right about the panic you feel when the doctor isnt taking your symptoms seriously. Sometimes doctors are just distracted, and you need to stand your ground. My first GI was a total quack and misdiagnosed me with microscopic colitis, by the time I found a new GI, I was only a few pounds away from being put on the food bag iv thing. The new doc informed me that my colonoscopy result was textbook Crohns, and she put me on Remicade right away. Good luck sweetie, let me know how you are doing if you dont mind :) Otherwise I'm just going to worry and thats not good ;)

I would love to get a new Doctor, and I tried in the past, but no one wants to take on my case. They just keep sending me back to this guy, because apparently he's the best they have, which let me tell you isn't saying much. I pretty much have the worse insurance and unfortunately it shows in the quality of care. My mom is calling his office today to see if she can get me in sooner, apparently I am not persuasive enough.

The only thing that is strange, is that usually I respond really well to the Steroids, though typically I have to be on like 60 mg for it to really start to work. I'm just really burnt out with all of this. I just want to feel better again. My Doc doesn't do any tests unless they are absolutely necessary, especially blood work. I am taking Calcium with vitamin D, I am taking a multi vitamin and that's about it. I eat lots of yogurt and I drink Kefer. I'll look into the Paleo diet as well, at this point I am open to any suggestions.

I have had c diff twice. I am in the United States. I have taken Asacol (made me worse/I'm allergic to it), I have taken 6-mp (couldn't tolerate it), I have taken Methotrexate (never had a flare while on it, my Doc wanted to try something else), and I am now taking Imuran and Prednisone. I have had two flares while on the Imuran.

It's worth a shot, though when I had c diff the last time I was vomiting too and this time no vomit. I am tolerating it okay as long as I take it with a big meal. I am on 100mg a day.