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In and Out of remission

I as only diagnosed with Crohn's disease last year but I'm sure I've had it for a lot longer than I could even imagine.

Throughout high school, I was constantly sick with diarrhea, violent vomiting, sharp pains, etc. I visited my doctor on a weekly basis, who clearly had no thought in the world that I might have IBD, and tested me for everything else under the sun. I had been put through 4 exploratory surgeries, countless ultrasounds and other vigorous testing looking for endometriosis, kidney or liver issues, appendicitis, sists, etc. Needless to say, there was no solution, as we had no answers, and I dropped out of school in Grade 11. I wasn't well enough to make it to school, so I finished my schooling at home.

I went on through college enduring the same symptoms with no answer and no solution. However, it was easier to pull off as I could teach myself all of my courses from all of the material posted online. I continued on about life without ever speaking a word about the kind of pain I was in because I felt as if there would never be an answer. It wasn't until November of 2012, when I lost my job as a result of these symptoms, that I demanded my doctor do something further to provide me with some sort of results.

It took 6 months of waiting to see my GI.... Who inevitably diagnosed me with Crohn's disease. Since, I have been in and out of remission, as none of the medications seem to have any effect on my besides enduring every single side effect of every prescription my GI has given me. Entocort, Prednisone, Pentasa, Dicetel, Natural Methods, Vitamin injections, etc... Nothing seems to work. Now my doctor has prescribed Imuran.... after doing hours and hours of research, I've decided I do not want to take Imuran, seeing as how the side effects seem just as terrible as that of Crohn's.

In consideration of my track record with these medications thus far, it scares me to think of what kind of effect Imuran will have on my body. At this point, I don't know what to do. I eat very healthy, I'm very active, and I do everything my GI tells me to (for the most part). Yet, there is an ever so present absence of zero positive results... I believe I'm feeling helpless. That helplessness has also led me to believe that my GI can't be trusted, so I'm looking for a second opinion.

I've heard stories that the disease is manageable... however, I have not seen any sign of such things and I'm really exhausted with how it's directed me on my life path. Spiritually, I feel to strong to be slowed down. Physically, I'm battling against myself daily.
 
Has your doctor, and have you, considered biologics like Humira and remicade? Also, those meds may do no good if the long term inflammation has caused scar tissue to form. That cannot be fixed with meds, just surgery. Did the symptoms have anything to do narrowing of your small bowel (strictures)? In my case, meds did no good. I had to have a portion of my terminal ileum removed, and its made a lot of positive difference in my digestive health. I wish you speed in getting relief.
 
I have not discussed biologicals with my doctor, however, I've done my own research. My friends brother, who also has a much more severe case of crohns, has also been through the same situation regarding meds. He's also been on remicade for two years and has been in remission since. I am in the process of finding another GI for a second opinion, as I feel like my current GI is simply pushing pills without taking any time to discuss anything in detail with me. The most time I've spent with my current GI is the time in which I go in for my procedures. Otherwise, when I see him for my regular appointments, I'm usually in and out in 5-10 minutes.

In regards to scarring, I'm not entirely sure if I have any. This has not come up with my GI, however, I don't seem to get much time with him to discuss these things anyhow. What kind of testing needs to be done to discover if there is any scarring or not?

My crohns is located in my small intestine and the results of my last hospital visit showed thickening of the walls in that region. I'm not entirely sure what that could mean for me, because like I said, my GI doesn't spend much time talking to me about anything.
 
The GI doc found the narrowing in my lieum (end of small intestine) with a colonoscopy. Over a few months, I also had MR Enteropathy (like mri) and a catscan. They all showed thinkening and narrowing. The GI thought that scarring and damage was there because meds were not helping. The surgeon looked at my pics and said he thought it was not going to improve with meds (but he's got a hammer, so he sees nails). Has your doc done a colonoscopy? They can get into the the end of the ileum with the scope and see if it looks inflamed or "fibrotic", another word for scarred. Hope this helps.
 
What an ordeal you have faced! Kudos to you for managing to still complete high school.
You mentioned not wanting to start Imuran and it caught my eye. My kid has been on all medications approved in Canada for kids. She has tried them all ( take a look at my signature to see them all). Imuran is the only drug we have seen make any difference. I was skeptical to even bother given the failure rate for meds. I am glad I did as she went from bms 8-12x a day to 4-7x a day. So far imuran was the only one (besides Remicade) that made a significant difference. Everyone responds in different was to meds & the only way you will find what works for you is trying it.

Btw the only side effect she has had is headaches and everything else has been ok. Good luck!
 

my little penguin

Moderator
Staff member
Eating healthy is great but is not going to fix crohn's .
Sometimes extreme diets help crohn's but that doesn't happen often.
The two choices left are immunosuppressants and biologics.
That is just where things are at this point.
DS has been on both.
6-mp was the easiest to take but was not enough to get him into remission since his body kept sending it to his liver.
Remicade was a miracle drug as well as humira.
Both have returned things to normal.

You need to ask for copies of your pathology reports , imaging studies ( MrE/CTE) and bloodwork. This can help you make an informed decisions about the course of treatment .
All drugs have risks Tylenol included( liver /death). The issue is untreated or under treated crohn's can be deadly. You can live without a colon but you need a small bowel period.
 
Adam, I have done quite a few colonoscopy's but, as I mentioned, my doctor doesn't spend much time discussing results with me. When I go in for my scheduled appointments, I'm in and out in all of 15 minutes, and that includes my wait time. The lack of time taken to speak with me about my disease or treatment is the reason I don't necessarily trust him or his methods.

Supportive Mom, your testimony in regards to Imuran does make me feel a little more hopeful. However, I'm still very skeptical, as I've endured the worst of the worst side effects of all the medications I've been on thus far.

My little penguin, I'm hoping to look further into remicade with the GI that my family doctor has referred me to for my second opinion. I definitely agree that it's a terrible idea for me to go without medication, especially seeing as how I'm out of remission, and I'm experiencing severe symptoms that are impeding my ability to go about my daily business. Which is why I'm pushing my family doctor very intensely to move along the process for a second opinion. The simple fact is, I have a terrible history with the drugs my current GI has prescribed, and I have a hard time trusting him considering the lack of time he's spent with me discussing anything. Living with a fairly new diagnosis of Crohn's, a chronic illness, deserves much more attention then 10 minutes.
 

David

Co-Founder
Location
Naples, Florida
Greetings and welcome. I'm so sorry to hear of your struggles. Considering you're not on a biologic and are in Canada, I strongly suggest you check out the clinical trial in my signature.

I wish you all the best.
 
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