Almost officially diagnosed - very mixed feelings

Hi all,

It's been a while since my last post. Unforunately that is not because I have started to feel so much better, but rather the opposite. In June it will offcially be a year ago that I was referred to the hospital by my family doctor on suspicion of Crohn's. And boy, what a year ot has been... I guess it's a good thing that we do not have the ability to look ahead, because if anyone would have told me it would take this long and this much probing to come to a diagnosis I don't know what I would have done.

But... The end of my diagnostical journey finally seems to be near. Long story short: in the past year I have undergone a sigmoidoscopy, colonoscopy, gastroscopy, upper endoscopy, ct scan, ultrasounds and 2 capsule endoscopies. Oh and of course countless bloodtests, fecal exams and urine tests. Many of these tests did not show a single thing wrong with me, except for my bloodtest (always elevated inflammation markers) and my pillcams. Which brings me back to now: my first pillcam (October) showed 5 diffuse aphthous ulcers, which could indeed be indicative of Crohn's, but did not a diagnosis make. The following hunt for biopsies was unsuccesful, since they were not able to reach the areas where the ulcers were located.

Luckily for me I have a very persistent GI that keeps telling me she is sure that something is off and she suggested a repeat pillcam a month ago. Three weeks later I was back at her office: there were now at least 12 ulcers and additional erosions and areas of redness (inflammation) identified. Which convinced her it had to be Crohn's. I too am now convinced. She does however still need biopsies to confirm so I have been refereed to another hospital where they will do the dubble balloon endoscopy on June 20th. I understood that this is supposed to be the holy grail for examination of the small intestine and i keep my fingers and toes crossed that they will get whatever they need to make the final confirmation. Regardless of the outcome, my GI will prescribe prednisone, since the entocort I took in January did nothing for me.

I now feel, for the first time, that the end of my diagnostic quest is near. Very mixed feelings about it: very relieved that I am not crazy and something is indeed wrong with me. Relieved that this will probably be the last time any kind of scope will be inserted in me (at least for the short term) and super relieved that I will only have to drink the horrendous moviprep mix only once more. But apart from the positivws I notice that reality is also slowly hitting me: i am sick. And I will very likely have an illness that cannot (yet) be cured. I worry about the impact of this illness on my every day life. I have heard terrible stories about prednisone, which i am bot really looking forward to to say the least. I have so many questions and yet none at the same time.

I just wanted to share this with you. I also wanted to give some hope and encouragement to the people on this forum that are still in their diagnostic phase. Keep on fighting if you are convinced that there is something wrong with you and please find a GI that will fight it with you, not one that you have to fight against. Good luck to everyone and thanks for reading this long post!

Glad to hear you now have a definitive diagnosis. At least you now know what you're up against. While not exactly like winning the lottery, treatment has come so far in the last 10 years. I'm sure your treatment plan will get things under control, and you'll be feeling much better very soon.

Oh and thanks for the link to youtube. It makes sense what the man says and his message is empowering. Not sure though how to incorporate his advice into my life, but it has definitely given me food for thought!

So sorry you have had to go through all this. Glad to hear you have clear results. It certainly does sound like Crohn's. I had ulcerative proctitis. My disease never traveled further into my colon during the twelve years I suffered. As for prednisone, it was the ONLY drug that helped me achieve some sort of remission. However, use it cautiously. I became prednisone dependent and it gave me prednisone induced diabetes and uncontrollable high blood pressure. I had a total colectomy with end ileostomy in 2010 and only then was I able to get off the prednisone. I no longer have diabetes and my blood pressure is very well controlled with only 1 pill daily. You do know that you cannot stop prednisone cold turkey, it is a must to wean off it slowly. Good luck to you!

I know my reply is a few days late, but somehow I missed that there were new replies in this thread until just now :-/

Firstly, I just wanted to thank you for your kind words. Thank you. I hope the same... >.>

Secondly, your GI is half right about prednisone. It can dampen down inflammation extremely quickly but it's a poor healer of mucosal ulcers and the anti-inflammatory effects lasts only for as long as you're on steroids for.

Hopefully you can get a diagnosis and onto maintenance medication ASAP. Pred really is a bandaid solution, sadly.

I have had CD for almost 26 years. I have not had any major surgeries other than a hysterectomy at age 40. I was unable to produce enough RBC each month which caused me to become more anemic. I was on Remecade every 6 weeks (bc no other meds worked). In 2009 after 9 years on it I had to switch to cimzia due to insurance. That was a blessing in disguise. I no longer had to take off work on infusion days rather self injection at home was more efficient. I developed a reaction 1 month (after 2 years of taking it). We called pharmaceutical company to help w the reaction. There was no protocol in place and was told the RX had to leave my body naturally. I soon went on humera which I've been on for 3 years now with no problems. I do not inject into the abdomen only interchanging ea leg. I also follow the same protocol as I was given for Remecade- pre-medicate with 50mg Benadryl and 1 - 25 mg of phenegan to prevent nausea. I exercise follow a strict diet and have done so since DX 26 years ago. I have not been hospitalized in 6 years for CD- which for me is great! I was ALWAYS hospitalized March/April and October/November every year for CD related issues. I do get b12 injections every 2 weeks but I get it along w humera. For me it negates side effects and WORKS!

With that said I have been diagnosed 3 times for Lymes disease. Neither time did I ever have the typical bulls eye ring. Now if I get a tick bite I automatically go on a prevetative round of antibiotics. I also have a few liver issues (nothing major) due to the 16 years of biologics. I was DX w CD 6 months after college at the age of 22. I was an education major and was a secondary teacher at the time. My (then Drs) told me teaching will be too stressful and consider a different occupation. I stayed in the profession now going on 27 years now as an administrator and working on my Ph.D. Moral of my experience- listen to your body bc you know it best; take care of your body and it will take care of you; listen to your Drs but you always have the final say in your treatment plan and live life to the fullest! I always tell my friends w CD don't let the disease define your life rather you are the architect and blueprint for your life.

I only work about 25 hours a week. A couple of years ago, I tried to go closer to full time and I couldn't handle it. I'm sure it wasn't really due to extra work, but I ended out with a bowel obstruction and needing surgery. Even in remission, I struggle with managing D, and energy levels (although the energy might just be from being 57) I am lucky that I have a job with flexible hours. I think we are all different, and I agree with the above posters about listening to your body. That might not mean that you can do everything you want to do, unfortunately. That's one of the things I most hate about this disease!

Here I am again...

As mentioned in my previous post my double balloon enteroscopy was moved up by a week. I had it done last Monday. Or at least that was the intention. Unfortunately the equipment malfunctioned midtest. They could not complete the exam, so I had to go home, keep my stomach empty and return on Tuesday morning for a new exam. This time they were able to examine 3 metres (sorry I don't know how much that is in foots and inches) of my small intestine.

This should be good news, but it is not the news I had hoped for. They found a lot of redness and red spots but not the >15 ulcers that the pillcam showed. I did urge them to take as mich biopsies as possible and they did. I guess now I have to wait and see if they will get enough from these 'spots' to finally make my diagnosis definitive. I try to keep my hopes up, but it's getting harder and harder to do so.

I was just wondering about something: after my first pillcam that showed app. 5 ulcers, they tried to obtain biopsies as well. At that time they again only found red spots and general redness. There was however 4 months between the pillcam and the scope. This time both exams (pillcam and DBE) the exams were two months apart. To me it makes sense that things have changed over time. Do you agree? Or is it just me falsely reassuring myself? Also: imo whether it are ulcers, spots or redness it seems clear to me that something is going on there that does not belong. Given my persistently elevated CRP levels and sed rates, should this not be enough? Even if the biopsies are clear?

I will get the results from my own GI and discuss what to do next with her. Quite honestly: i just want meds now. I have had so many exams that I just don't want to do any more tests. What would you guys advise?

Sorry for the long post (again) and the 'I have had it attitude', but I am still recobering from the two exams and two sedations in two days without solid food. Thanks for letting me rant a bit here.