Questions about Crohn's disease

Hi Emily.. I'm keen but have only recently been diagnosed after years and years of troubles.. let me know if you need me

Rosebud995 said...
Good Evening. My name is Emily Campbell and I am a student at Daemen College currently studying Natural Science. I'm enrolled in a rare diseases course and as part of the class I was asked to speak with patients in an online discussion group. I have learned about Crohn's Disease in the past, but I was wondering if anyone would be willing to talk to me about your personal experience with Crohn's: How you were diagnosed, what you like/dislike about the medical care you've received, and how you felt after receiving the diagnosis. Thank you ahead of time and have a great day.

Hi Emily,

That sounds like an interesting course. My personal experience with Chrons, next to anyone else I'm sure, was terrible. Being diagnosed was the most scariest experience, being put to sleep, not having results for a couple of weeks, having a terrible first doctor that insisted dietary or lifestyle changes would never help. He urged to stay on these drugs (Asacol & Prednisone) forever, and that there was nothing I could do.

Until I visited this forum, and worked closely with a naturopathic MD, I've found alot of amazing results through trial and error dietary changes and supplements! On this forum is where I found out about the SCD (Simple Carbohydrate Diet) and that put me in remission and allowed me to get off yucky steroids.

L-Glutamine, Glucosamine, Paleo/SCD diets, red cabbage juicing, supplementation with herbs like Slippery Elm, Marshmallow and Licorice has supported my insides, coating the intestines, stimulating the adrenals, and I can't forget probiotics and fish oil!! Two amazing supplements.

My medical doctor refused the idea of all supplements and just told me to stay on Asacol and not to go to McDonalds every day.
I'm so thankful for this forum and for the research that is ongoing for treatment of Chrons/Colitis naturally, and my faith as well. Good luck with your study, all my meds/supplements are listed down below. The Ulcerative colitis forum is just as active as the Chrons forums.

To the patients: Never, Never, NEVER give up, a little bit of faith goes along way. If you go into something with a distorted view, you are more likely to end up with a negative outcome. Despite what medical doctors prescribe for you, their answer, may not always be the best answer. This is your body, take the time to get to know it now, because its asking for help, and even the most overlooked remedies from centuries ago, just may be the one to help you most. Ask questions, and don't settle for anything less, there is always another option out there.

To the doctors: While I understand the goal is to treat disease so that it is no longer active, the goal should remain; get to the root of the cause. Remember you are practicing with peoples lives, and one day you or a loved one could be in the very same position.

Those are very wise words. One of the main concepts that we had been discussing in class (since most of the class are future health-care providers) is to remember that the patients have their own lives before and after the diagnosis as well as family and friends who are also affected by the diagnosis. Each person's experience with the disease itself may be similar to some extent, but how they handle the social and emotional aspects can vary and it's important as health care professionals to do everything we can to make our patients comfortable physically, but also emotionally rather than giving them a diagnosis and sending them on their way.

Thank you for taking the time to write to me, I really appreciate that. I know a handful of people who have Crohn's disease, a few of them who have actually tried surgery for it, but it didn't seem successful in terms of long-term results. You mentioned faith in your earlier post. In your opinion, what role does your faith play in your struggle with Crohns?

Most definitely, I would highly recommend to any patient (new to the disease or not) to continue trying all avenues and especially test studies, afterall what have any of us got to lose other than our symptoms.

The emotional stress of embarassment from having IBD is one of the toughest things for most of us to handle, especially with frequent trips to the toilet and for many, uncontrolable gas makes for a very embarassing disease. Unfortunately, the longer you have the disease, it doesn't get any easier dealing with the social/emotional/physical aspects of it...obviously a cure would be nice LOL!

I was DX faily quickly and easily 21 yrs ago this May. My case is a little different than most cases, my disease actually started with what's call perianal crohn's skin tags (google) and they actually first appeared in my mid teen years, after going on BC pills (and I started smoking when I was 14 before going on BC pills...smoking is one known trigger for crohn's specifically yet for UCers, many that quit smoking end up getting sick with UC).

These perianal crohn's skin tags would appear and then disappear on their own throughout my teens. Any GP that I showed them to (when they were present) would tell me they were hemorrhoids, which I found odd cuz I was NEVER constipated or had any wierd bowel habits to cause hemorrhoids (I went to the toilet once a day, nice and normal looking and all, with complete bowel control like any normal person).

Fast forward to when I got pregnant with my first born...the tags came "out" and stayed throughout my pregnancy, yet still not a single internal issue with CD, I thought maybe they were hemmies and the pregnancy (I gained twice my weight while pregnant) pressure from excessive weight gain brought the tags out and thought maybe they were hemmies after all (of course they weren't though). Then about a yr and a half AFTER I had my baby (in April) all hell broke loose, the tags became very sore and extreamly large and painful (never that bad before) and they wouldn't go away, then I started having more bowel frequency (went from my normal 1/day to multiple times/day) but they were still solid and normal looking. I told my GP about my weird bowel pattern but she disregarded it saying it was likely cuz my so called "hemmies" were so bad that it was somehow irritating me internally (what can I say, I was young and naive and a new mom and never heard of IBD and thought my doc knew what she was talking about...I paid the price for it).

Fast forward a few weeks later, I went to the doc and told her all that was going on, she too saw my anus tags and said the same as every other doc did and scheduled me for an emergency hemerrhoidectomy in which they "banded" the lumps/tags, had they been actual hemmies they would have shrunk up from this procedure but they were not and therefore stayed in a flared state, as they are actually diseased tissue and not simply hemmies. Two weeks after the surgery (this is now May of 1991) I did not heal, instead I became sick internally with CD which was horrible D and lots of fissures on and around the anal tags (I literally had to put water in the bathtub to poop in it because the pain was so unbearable {note the embarassment of having CD}.

So then I went back to my GP and showed her that the surgery did not help me and repeated to her that I was having multiple daily BM's now along with mucus, D and some blood....she sent me to a gastroenterologist and for that first appointment I was scheduled for a sigmoidoscopy due to the fact that my GP told him I was an "emergency case". The first thing out of the GI's mouth when he saw my anal tags was "Did you say you had hemmie surgery on these bumps?" "These are not and were not hemhorrhoids, they are perianal crohn's skin tags, you have crohn's disease" and you are so inflammed down there that I can't fit the scope inside to see inflammation." So he used a pdiatric scope which still killed me cuz I was so inlfammed, and he proceeded to tell me that he could see lots of inflammation in my rectum and in my colon. He did not once think it was UC because the perianal crohn's skin tags are related to crohn's disease only and as we all know, CD can affect the entire GI tract from mouth to anus.

He still sent me in for small bowel testing (and the other usual blood work/stool tests) and all came back as CD since at that time CD was affecting my small intestine, colon, rectum and anus all at the same time.

Chances of you finding another case exact to mine will likely be slim to zero since this disease is so individualistic, but equally horrible for all of us that have it...I'd say for the most part, we all have our horror stories from hell with our IBD experiances.

Hi Emily,
Just thought I would briefly share 'our' experience. Ds was diagnosed(finally) approx 2 1/2 years ago at the age of 16. I knew that something was wrong with him for several years and we kept doing trips back to his Dr who put it down to this and that and when on another such appt I mentioned about his height/weight( 5' 5 and approx 92 lb) his response was that I wasn't exactly that tall myself(I'm 5'9) Finally he did agree to some blood tests and from those we quickly got in to see a specialist. I felt extremely angry that the medical profession hadn't taken my concerns seriously(and I am not one to run to the Drs every 5 minutes for nothing)
The specialist at the hosptial was very thorough, went through medical history and arranged a colonoscopy. he carried this out and within half an hour took us to one side and said ds had Crohn's. he advised us to go online and do some research and pointed us in the direction of Crohn's Charities. We never felt rushed at the appointments and he was very patient in answering my endless questions.

Ds appeared to take everything in his stride barring one point when he developed an oral fungal infection and then acne (both highly likely to have been caused by drugs he was taking at the time) at that point he felt that his body was turning against him.
As for me, initially I was relieved that we could put a name to what he had and that his illness was not a figment of my imagination. Then came the fear, I spent many nights crying, fearing his life was over(sounds rather dramatic now but that was what I felt)Spent endless days/nights reading everything i could find on the subject(tried to take in far too much too soon)
As time has moved on and he is stable and living a 'normal' life the pressure has eased off but there is always that nagging feeling in the back of your mind that things will probably get harder.

After diagnosis I felt amazing. I wanted to have a party actually! I have been brushed off by doctors for years & to finally have a name for the horriable pain waas a huge relief.

I wish medical practitioners would give the patient the benefit of the doubt. People know their body better than anyone else. I'm a biracial teenager & doctors kept telling me it usually happens in older, caucasian/jewish people. Doctors need to realize that just because a certain group of people are susceptible to the disease, does not mean that anyone outside that group can not get it. I would also like doctors to get on a more personal ground with their patient. It builds trust.

I do both traditional & complementary medications. My mom tried to get me to be "all natural" & I ended up losing 85 pounds in 8 months & in the hospital with a feeding tube down my nose. Let's just say ALL natural is a big no-no for me.

Rosebud995 said...
Those are very wise words. One of the main concepts that we had been discussing in class (since most of the class are future health-care providers) is to remember that the patients have their own lives before and after the diagnosis as well as family and friends who are also affected by the diagnosis. Each person's experience with the disease itself may be similar to some extent, but how they handle the social and emotional aspects can vary and it's important as health care professionals to do everything we can to make our patients comfortable physically, but also emotionally rather than giving them a diagnosis and sending them on their way.

Oh definitely, it was honestly a very traumatic experience for me to be diagnosed. Before full on disease, I closed myself off from friendships and relationships. I felt the doctors gave me too much anesthesia for my c-scope and I've never had suicidal thoughts until that day, and I couldn't retain information for around 24 hours, repeating to my sister: "I have colon cancer dont i?" over and over. After many visits with my first GI doc who was terribly closed minded, I would go to my room and cry for hours, but not make it known to anyone I was suffering. He would incessantly say to me all the time "there is nothing you can do to get rid of this, you will have this forever, you have to stay on the meds forever".

Rosebud995 said...
Thank you for taking the time to write to me, I really appreciate that. I know a handful of people who have Crohn's disease, a few of them who have actually tried surgery for it, but it didn't seem successful in terms of long-term results. You mentioned faith in your earlier post. In your opinion, what role does your faith play in your struggle with Crohns?

I had a lack of faith prior to diagnosis. Being a carefree 21 year old in college, I went from having the time of my life to being in pain. My mom got me through a lot of the hard parts. We talked a lot over the phone, and she is such a strong person, i'm so blessed. She restored some of my faith in God, not to be confused as a chore to go to church every day, but just that he was there when I needed him and to turn my worst fears and worries over to him. I feel so much more at peace with my condition, with myself as a person, I am so appreciative of life now. After going through all of this, I told myself I'm not going to let any of my goals or dreams escape me, not to be mistaken as living recklessly like every day is my last, but to do what i really want to do. Right now i'm graduating college and pursuing grad school for sound design / music technology.

Thanks for taking the time to ask these questions of all of us ! I hope your course goes well.

Morning :)
I am comfortable with you using my post (thank you for asking)
The Dr is an a** on things HE considers trivial (not first time we have encountered problems with him) but now he 'appreciates' that something is genuinely wrong he has stepped up somewhat! The priblem was we had to get past him initially to see a gastroenterologist. The care through the gastroenterologist/hospital/dietician has been good.
I think that ds has been fortunate that after a bit of trial and error a good combo of meds for him were found and that typically he has not suffered any major bouts of diarrrhoea/sudden urges to go to loo. His problem was more the fact that he was so 'backed up' that despite being literally starving he was unable to eat more than a mouthful or two.Pain was also a large part along with headaches/high temperatures/fatigue. Many are not so fortunate and they can really struggle-each and everyone one of them deserves a medal.

Post Edited (vixen) : 5/1/2012 8:00:20 AM (GMT-6)

Oh yes you can use this post.

Also
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