Know your $hit - A letter to the slightly mis-un-infomred

Within the past few weeks I have received an overabundance of feedback from various sources regarding what Crohn's is, how I am mis-managing mine, and all of the things these laypeople (meaning neither in medical or nursing field nor a patient of any kind) have been expressing to me.

So far this week I have been told :

1. That I make a career out of feeling sorry for myself.
2. "I've met other people with Crohn's who, through strict diet and exercise, live normal, relatively pain free lives." i.e. Why can't you?
3. "You use Crohn's as an excuse because you're lazy."
4. "You have Crohn's, are emotionally weak, and crave constant attention." 
5. Compared the "cross to bear" of Crohn's to that of having adult acne or the realities of life keeping us from achieving our dream, like being a formula one driver or a famous actor.  "We all have our crosses to bear". 
6. "If you were a nicer person, you wouldn't suffer so much" 
7. "I know Crohn's isn't contagious, but I have been having some symptoms and they have been telling my I might have IBS. I never had these issues before I met you." 

I know, some real nice people. With friends and relatives like these, eh? So to cut through the BS, here is:

 A down and dirty primer what Crohn's disease IS and what it ISN'T:

And how it affects me:

1. It IS a daily, re-occurring chronic immune response and inflammation of the gastrointestinal tract - that is anywhere on the tract, from the mouth to the anus, with no known cause or cure. 
2. It is NOT contagious.  Though siblings and direct offspring carry a higher incidence rate of developing the disease (ya know, genetics). 
3. It IS a pooping disease. On a good day I have 4 bowel movements.  On a bad day (the last personally recorded one with the last 30 days)  I had 27 bowel movements.  That is 27 times up to the bathroom, sitting there for 10+ minutes, moving my bowels, wiping, getting up, washing your hands and then realizing you have to poop again. 
4. It is NOT just a "pooping disease".  It can cause (I've bolded the ones that affect me on a regular basis):
1. strictures - abnormal narrowing of duct, pass or segment of the intestine, that occurs secondary to inflammation
2. obstruction - narrowing and blockage of a portion if the intestine
3. inflammation - of the intestinal wall
4. bleeding- of the inflamed intestinal wall 
5. abscess - localized accumulation of pus that results in infection
6. fistula - abnormal channel or tract that joins one part of intestine to another part of ogran
7. fissure - tear of the rectum muscle wall
8. arthritis - joint inflammation, usually resulting pain and stiffness
9. osteoporosis - metabolic bone disorder, in which bones become increasingly porous, brittle and subject to fracture
10. erythema nodosum - raised, reddened, tender nodules beneath the skin
11. pyoderma gangrenosum - pustular lesions that may lead to skin necrosis, usually affects shins, area around mouth and genetalia
12. episcleritis - inflimmation of episceral tissue, usually accompanied by ocular itching and burning
13. nutritional deficiency 
14. hepatobilary disease - cirrhosis, jaundice, steatosis, gallstone formion
15. depression - because who ISN'T excited to be shitting all day long?
16. fatigue -  you get tired from going to the bathroom a lot 
17. acne and other skin abnormalities - cause why not ? usually a side effect of various medications
5. It DOES NOT affect every one the same way, it does not affect the same person the same way from day to day, and over the course of the disease a person can experience different severity levels.  There are several types of Crohn's (Pan, Crohn's Colitis, Proctitis) and within those types, differing severity levels:
1. Mild to Moderate - able to eat food normally without dehydration, fevers, stomach pain, blockages in their intestines or losing more than 10% of their body weight.
2. Moderate to Severe - They do not respond to treatment for mild to moderate Crohn's or if they have high fevers, significant weight loss, stomach pain or tenderness, occasional nausea or vomiting or significant anemia. 
3. Severe - have symptoms despite take steroids, or if they high fevers, persistent vomiting, blockages in the intestines or an abscess.  
6. It is NOT curable.  It is treatable with: 
1. Diet - different ones for different people, there is :
1. low residue / low fiber
2. low gluten
3. Specific carbohydrate diet
4. BRAT - during periods of high diarrhea 
5. avoidance food (everyone has a few)
2. Exercise - when an individual is feeling well enough to exercise (e.g. not in a time of flare) low impact, low cardio exercise is recommended. You tell me how much energy you think I have to exercise after pooping 20 times in a row and I'll offer to perform your next colonoscopy. 
3. Medications - I could write blog posts upon blog posts about this, mostly: TNF-A blockers, 6 ASAs, Steroids, NSAIDs, and pain medication are the main / heavy hitters.  The side affects are often as bad as / if not worse than some of the symptoms of Crohn's.  Steroids for existence? Sure I have energy and am not pooping but I look like I have a rounded melon head (think hot air balloon with a face) and have the personality of Medusa on a bad hair day. 
4. Surgery - to remove severely diseased areas causing the most pain, to put in a stoma/ostomy to give parts of the most diseased bowel a rest, or to permanently remove the entire colon or rectum, when ruinously impacted by inflammation. 

All of this together explains why your hairdressers' cousin's husband and I have different types of Crohn's disease, different symptoms, different lifestyles, take different medications and use different treatments.  It is also why some people seem "cured" (they really have moderate Crohn's with no to little disease activity) and other people need surgery after surgery.  

My current personal situation is as follows: 

I have moderate active pan (through all the layers), Crohn's Colitis with distal proctitis.  This means I  have ulceration through all mucosal layers of my descending colon and in the 3 inches directly inside my rectum along with a rectal fissue.  I also suffer from symptoms of diarrhea, frequency of stools, mucus and blood in  my stool, abdominal pain, flank pain, headaches, fever, erythema nodosum, episcleritis, fatigue, acne and depression.  And, while I am mal-absorpbing my food, I do not appear "skinny".   The location of my disease makes it surgically difficult to treat, as if you do anything to the anus surgically, it ruins it.  They are not muscles easily repaired. 

I have spent a total of 7 weeks inpatient over the past 5 years. 

I am on a reduced sugar, reduced gluten diet, low residue diet which I am trying very hard to follow.  This means I should have none of the following: 

• peppers, of any kind
• jams, jellies or preserves
• any processed sugar in anything (think peanut butter, yogurt, cereal)
• wheat (bread, noodles, cookies, cakes, etc)
• gluten (in almost EVERYTHING)
• most root vegetables
• most processed pork
• corn - in any fashion
• most grains

I currently take 6 daily oral medications and one weekly injection.  On the fun days I get to take suppositories and enemas. 

On top of the affects of the diseases, the side-effects of the medications, the uncertainty of not knowing how I am going to feel one day to the next, how one food is going to make me feel, the overwhelming emotion I have is guilt. Guilt that I have to put my daughter through having a mom with a chronic illness. Guilt that my partner has to deal with me, help me administer enemas, pick up my slack when I am too tired to bathe myself, let alone make dinner for everyone else. 

The accusations: 

My"cross to bear".  Yup. It is.  Is it worse or more noble, or grander than anyone else's? No, it is just mine, which makes it matter to me.   It is not my intention to make anyone feel sorry for me. I would like the general public to be aware that there are people for whom getting out of bed everyday takes a physical and mental struggle.  I am one of those people on some days.  Other days, I barely have to think about it and can bound about doing my work. 

Crohn's as an excuse for being lazy.  No.  There are certain limitations of my body I have to accept and I have had to learn them over time. It may look like laziness to you, that I am resting this evening watching TV or reading a book, instead of washing my tub or doing that other load of laundry (or even doing this the second night in a row), but it is so I will have the energy to get up tomorrow and make my daughter's lunch, to go to work,  or attend school.  But I am going to school, caring for my daughter, working part time.  Does this mean dishes are in the sink a little longer? Yes.  Does it mean that I  have a few dust bunnies that have become family members with names? Sure.  Does this mean I am an unworthy human being because my house doesn't look like a Better Homes and Garden magazine? No. 

I am emotionally weak.  I beg to differ.  My emotions seem much closer to the surface.  I am quick to cry, to yell out my frustrations.  But I deal with a lot of frustrations most of which you don't see or hear about. Just planning a grocery trip, and being able to go, come home and retain energy to cook dinner  or getting to the bathroom before I mess myself is an example of one of my constant struggles.  So when something doesn't go as planned, I can be that much more upset.  Because I put a lot of planning into a lot of things, I become easily frustrated when things don't go as planned because it can steal my stores of energy.  And, I have to emotionally manage all of this, while on mood-altering medications, on top of being a "normal" person with "normal" responsibilities - feeding my kids, paying my mortgage, etc.   You do that and we will see how often you want to whine or cry.  (It can be a lot, trust me).  

I crave constant attention.  Again, no.  Actually I hope I'm not overly obtrusive with my need to use the bathroom NOW, in the middle of our dinner or shopping trip. I don't want to ruin anyone else's fun by needing to stop and rest or go the the bathroom.  I hope to take care of my needs quietly.  I want people to not hate me for the burden I place on their lives.  And I want not to be forgotten because I have to spend so much of my time locked in a bathroom, my bedroom or a hospital room. And I want them to not write me off as lazy or weak because I have different physical or emotional limitations than they do. But, I also want people to be  aware of invisible illnesses and the burden placed on their sufferers to live a "normal" life. 

If I was a nicer person I wouldn't suffer so much.   Once again - you can't cause Crohn's.   I speak my mind, frankly and often and enjoy speaking out on behalf of my fellow IBD suffer's who do not talk about their issues or struggles. I don't think this has anything to do with how often I go to the bathroom.  

So, other IBD-ers's I would love your input, feedback. 

Non-IBD's, you, too.  It is a struggle going through this alone, and the only reason I make it most days is because my PR, my parents, my daughter and some close friends (Molly, Trena - you know who are). 

Happy Monday,

Emily