Will This Ever Get Better?

[GKVARGA]

Well, Ive finally registered for this forum. I've lurked around for some time and read a number of various posts. Many stories and accounts of just how miserable this disease can be.

I personally was diagnosed with Crohn's in 2006 after I noticed I was having some abdominal pains while I was on the acne medication Accutane. (I am convinced this drug has put me into the condition I am in today). I am 40 years old and over the past year and a half I've noticed my condition getting worse and worse. My sick days are practically every day now and I have forgotten what normal feels like.

Common conditions for me include headaches, dizzyness, nausea, extreme fatigue, etc. In addition to the more typical digestive tract disorders. My intent is not to convey my plight because I read of others that are suffering in a great many more ways than me. However it seems as if this disease eventually takes us down the path of surgery, resections, and in my case the inevitible colostomy bag.

I mention these things because I often wonder if these symptoms are typical of Crohn's sufferers. When I mention my symptoms to my doctors they are convinced that Crohn's does not cause a majority of these symptoms. Particularly the headaches.

I am also looking for some feedback on shared experiences. I have currently started Remicade, but I don't beleive it's working for me. It certainly is not the miracle cure I was told by my GI, I may have already developed antibodies after 3 infusions. A blood test tomorrow to check may answer this question.....

One thing that has worked tremendously for me however is clarithromycin or Biaxin. I accidently stumbled upon the antibiotic when a clinic doctor perscribed it to me for a chest infection. I have twice seen significantly improved results from this effective and cheap antibiotic after just taking 2 or 3 pills. Yet, again, my GI cannot subscribe to the fact that there is a relationship here. Evidently there is no proof that bacteria in the digestive tract causes the body to fight this percieved infection.

Finally I beleive the greatest hope lies in Stem Cell research. Reboot the immune system through a bone marrow transplant. The personal blogs of others going through this treatment on this board have been simply amazing and my wife and I are actively seeking to somehow be involved in this treatment.

Anyway, I hope to post a number of times, but I also appreciate some feedback on others that perhaps share my experiences. Perhaps one day we'll all get to know what normal feels like again.

Thanks.

"I am so sick and tired of being sick and tired"

 

[xJillx]

Hi and welcome! I am sorry to hear you are having mostly bad days lately. I felt that way in the summer, and it was just terrible to forget what a good day feels like. Your regular symptoms aren't the typical ones, but I wouldn't rule them out as being Crohn's related. But have you considered them being possibly caused by your meds? Did you have these issue before Remicade? What have you taken in the past?

That is interesting regarding the clarithromycin or Biaxin helping your symptoms. I haven't read anyone else report anything similar, but that doesn't mean you aren't onto something.

You are right. Stem Cell research is the future. We've had a few members have successful transplants. Here is the thread of a recent member's stem cell journey: http://www.crohnsforum.com/showthread.php?t=16284&highlight=stem+cell

Once again, welcome to the forum!

 

[Emily]

Hi and welcome! Clarithromycin is often used to treat H. Pylori and stomach ulcers in combination with an antacid. Do you have H. Pylori or ulcers? Maybe this is why the Clarithromycin helped. Just a guess, though I am curious!

 

[GKVARGA]

Thank you for the replies and the welcome.

Your feedback does raise some more questions however and has me confused. However this is the feedback I was hoping for.

My typical symptoms on a really bad day include headaches behind the eyes, dizzyness, lethargy, and even flushness in the face to a slight degree.

There is also considerably more inflammation in the intestinal tract during these bad days. Both my family doctor and GI specialist insist the head symptoms are not typical for Crohn's yet when there is an intestinal flare up these symptoms go together.

I have never really had pain in my abdomen. Which I thought as somewhat odd as I understand most Crohn's sufferers experience pain as well.

However, I have been diagnosed with Crohn's, at least according to the biopsy results when it was discovered in the small intestine ilium. My condition has worsened in the past 1 1/2 years and has progressed into the sigmoid colon area. I have had 4 colonoscopies and inflammation is indicated in the sigmoid colon.

Medications that have been able to put me into remission, so to speak, are 30mg of prednisone, or clarithromycin, but only last as long as the medication is in my system.

I thought the clarithromycin made sense as I also understand the SCD diet is intended to starve the harmful bacteria in one's system so that the good bacteria could proliferate. Googling Crohns and clarithromycin together pulls up some trials that have shown promise particularly in it's use in MAP related studies as MAP relates to Chrohn's.

I do not believe I have H Pylori and I do not have ulcers, but it is good food for thought.

Persistent use of antibiotics as a teen and the aforementioned Accutane may be directly responsible for this.

Azathioprene and 6mp I know have made me sick but these symptoms have started well before Remicade. In fact after my third loading dose my head symptoms calmed considerably for maybe 3 weeks. They seem to be back now (currently 2 weeks into my 4th injection)

I have been on:
azathioprene - made me sick
6mp - made me sick
prednisone
salofalk
methotrexate (25mg injection)

currently on:
remicade
methotrexate (12.5 mg oral)
flagyl

 

[suschex]

Here is a bit of info on eye issues that may arise with Crohns Disease
http://www.ccfa.org/info/about/complications/eye