What can we do?

One of the sad things about being a part of so many Crohns, Colitis and IBD support groups is you see posts about people dying from the disease. Sadly, this is not something a lot of people hear about or know about. Complications from Crohns and related diseases can be fatal - and it's more common than you think.

Today I saw a post about a young woman (no age given but she appears to be in her late 20's) who passed away from complications of Crohns today. I've been seeing a lot of this lately and it makes me sad for a lot of reasons - aside from the obvious. I am sad that most people do not know how serious this disease is. A lot of people think it's like IBS (Irritable Bowel Syndrome) and it isn't. It is so much worse. There is still so much to learn about Crohns and I am still hopeful there will be a cure at some point.

I have done some research in various places and it appears as though the survival rate, after having severe Crohns/Colitis for over 12 years is only 77%. Why is this a statistic not widely known? Why are we only now just starting to really talk about this disease? Why do people still refer to it as a minor disease that only causes "cramps and lots of pooping"

I can't even begin to list the issues I have had solely based on this disease but I'll give it a go:

• Abdominal pain ranging from minor to so severe I can not stand up straight. Most of this pain has been with me every day for nearly 30 years
• Diarrhea - again ranging from mild to severe
• constipation
• weight gains/losses
• fevers
• nausea/vomiting
• canker sores so bad they've been on my gums, tongue and down my throat - so bad I can't even drink water
• easy to bruise
• joint pain - every joint in my body can be affected
• blockages or narrowing of my intestines causing extreme pain
• fistulas
• abscesses
• rectal bleeding
• numerous hospital stays
• TPN nutrition (no eating only getting "food" through a tube inserted via IV)
• surgeries (the latest resulting in no colon)
• I now have a stoma and wear an ostomy bag
• headaches
• vision problems
• memory problems
• nutrition issues

At my worst this past year I could have been yet another post in a support group - and I know from how much the doctors were concerned that I wasn't too far off from being another sad statistic of this disease. My bloodwork was coming back so bad that it was scary. My iron levels were so low the count wouldn't even show up in the tests. At that point I honestly didn't know how bad I was (I have been told by my doctors since I've been better that they were honestly concerned about my prognosis) and I didn't really think that anything like that could happen to me. I didn't know it could and I've lived with this disease for almost 30 years. In retrospect, I am glad I got the surgery I did - it quite literally saved my life.

I wish more was known about this disease in the general population. As I have watched the Ice Bucket Challenge make it way across social media (and I even participated when I was nominated) I have wondered what kind of viral stunt could be done to promote awareness of Crohns and Colitis? What could we, as a community of people with this disease, do to start a movement and raise money for research?

There has to be something we can do - help me think of something and let's start our own social media movement. Let's make a stand and raise money for an illness that isn't just uncomfortable, it's literally taking lives.

Fatigue

This flare is kicking my ass.

The pain I can handle for the most part. I've had a lifetime with it so unless it gets to the point where I can't function then I can deal. The fatigue however is almost debilitating. That's the part I'm having a hard time with right now and the part I know my kids don't understand. All I want to do is sleep ALL DAY LONG and if I could, Lord knows I would. I have no energy to do much or anything and the small things I wind up doing zap any energy I may have had. It takes all my strength and motivation to do much of anything.

We have barely left the house this week and a lot of the week has been spent watching TV (and I seriously pass out hard core while they watch) or my telling the kids to play quietly, leave me alone, let mommy rest. They're now stir crazy and I understand that. I wish I could force myself to not be so tired, be able to keep my eyes open… Sometimes I do think this can be one of the worst things about a Crohn's flare, especially when you're a stay at home mom, in the summer, with two small kids. Because fatigue like this makes you unable to do anything. It takes all my energy just to do the little things, never mind everything else. This fatigue feels like I haven't slept in DAYS when, in reality, I've been getting a good amount of sleep. Even my husband, who is usually really good about understanding my illness says: "just go to bed earlier tonight"

Ohhhh….if it were only that easy! Yes, I do have to get work done before bed and yes, sometimes that can keep my up later than I want but still, even with that, I am averaging 8-9 hours of sleep a night before a small person wakes me up in the morning. When fatigue like this hits…. my need for sleep is unsatisfied no matter how much I get. I am sure I'll sleep a lot this weekend and I won't feel any better than I do right now. That's the problem when fatigue hits. No matter how much sleep you get…it doesn't change how you feel when you're awake. This is what the Mayo Clinic has to say about fatigue and it sounds about right for me:

Chronic fatigue is a nearly constant state of weariness that develops over time and diminishes your energy and mental capacity. Fatigue at this level impacts your emotional and psychological well-being, too.

Fatigue isn't the same thing as sleepiness, although it's often accompanied by a desire to sleep — and a lack of motivation to do anything else.

Tomorrow I am rallying and we'll be making a day trip to the lake with some friends. I know I'll be pretty much down for the count by the time we get home and I can only hope the kids will be as well. Hopefully I don't get too tired driving as that has been an issue when I've had these flares and this particular symptom in the past.

I just keep hoping I'll wake up tomorrow and this flare will have passed. It has to at some point, right?

Bleeding

You know what's disconcerting? Feeling like you have to have a bowel movement and only seeing blood…oh and even more disconcerting when that happens when you have no colon!

As I have stated before, I still have my rectum - how much of it I honestly don't know but it's just kind of sewn up and goes nowhere. I decided to keep it in case I want to connect my small intestine up to it and get rid of the ostomy bag. My doctors saw no problem with this as I have not previously ever had any Crohns issues there.

Yesterday I found myself back in the ER due to the bleeding and pain in my abdomen. I got another CT (which showed some areas flaring in my small intestine) but obviously the CT can't show anything in my rectum as nothing I ingest goes down there. I got bloodwork and a quick rectal exam which showed some inflammation. The doctor was not comfortable scoping as he had no idea how much rectum I have left. But I was told I need to get that done. If the Crohns is active there then… it's most likely coming out and then I am stuck with my bag for life.

All the while this is going on, I keep getting a pressure feeling down there, like I have to pass a bowel movement but, obviously, nothing would be coming out. All I keep getting is blood. Still tonight… blood. I hate the blood and the pain and no real solid answers.

I do have some other issues going on that are not helping. I have new cysts on my ovaries which could be causing part of this abdominal pain. The CT showed cysts on the right and Crohns stuff going on on the left which explains the pain on both sides of my abdomen. I really can't tell the difference, both pains feel the same to me.

I also have had a headache for 4 days now. Got that checked today and found that it's possible I have a sinus infection. I am not having any stuffiness so I didn't think I did but my doctor told me the Humira could be preventing that symptom so… he is treating me as though I have a sinus infection and if I am not doing better by Thursday then he will CT my head to see what's going on. I am hoping for a sinus infection. I tend to get those so that's probably all it is. Would love this headache to go away!

A for the Crohns stuff… I am seeing my local GI on Wednesday as he wants to see me before I go off to see a new GI at GW Hospital in DC. Someone, somewhere has to help me. The Humira doesn't seem to be doing it's thing. I am so tired of daily pain… of new issues cropping up. If I have to be stuck with the bag for the rest of my life then so be it. I just want to be out of pain so I'll do whatever I have to do to achieve that. If it's even possible to do so.