A couple months ago Neil was diagnosed with Crohn’s disease. It sounds so matter-of-fact and so simple to say it, but it’s really been so far from matter-of-fact and so far from complicated. It’s been such a long time coming to this diagnosis- a long, painful, frustrating time.
If you feel like hearing about it, read along, but it might take awhile.
The first time I can remember Neil getting sick was when I was a newly graduated nurse, so about 10 or 11 years ago. He had been having some pain off and on throughout the day and then I went to work the night shift. He called me a couple of times because the pain was just getting worse and worse. Eventually I left work halfway through my shift to go get him. He was on the bathroom floor in terrible pain when I got home, and I brought him to the emergency department. We thought maybe he had appendicitis or that maybe even his appendix had ruptured. I brought him to emergency and they did bloodwork and gave him IV narcotics. Nothing showed up in the bloodwork and the pain resolved and he was discharged. I remember eating a bowl of cereal up in my staff room while Neil slept in the emergency department.
For a long time after that Neil wasn’t sick all that regularly. He would sometimes have a sore tummy. A lot of times he felt like he had terrible indigestion or heartburn or something. It was probably about five years ago he started being sick on a much more regular basis. He went to his doctor, who prescribed some kind of antacid and not much else. It didn’t really help. He eventually had a gastroscopy (a scope down his mouth into his stomach), which showed nothing. He felt better for awhile after that and figured that maybe he had just had an ulcer or something, and it had healed.
Eventually his symptoms started worsening and becoming more frequent. They also changed from more of a heartburn feeling to more of a bad abdominal pain. He went to several doctors, who really didn’t help at all. One doctor told him, “Some people just have chronic pain. It’s a part of normal life.” Um, no. We tried going to emergency another time he had an attack, hoping that maybe they would do some kind of diagnostic procedure. We were told there was a 12+ hour wait. He went to a walk-in clinic again. I don’t even remember what they said there. Neil tried several doctors, none of whom seemed overly concerned and none of whom were helpful in any way. No one referred Neil to any specialists.
At some point a couple of years ago Neil was starting to be sick more and more often, having very painful episodes almost monthly, and then eventually almost weekly. I was listening to a radio program about naturopaths and there was a guy on the program who was about Neil’s age. He had very similar symptoms to Neil and had also had no luck with the conventional medical system. He had gone to a naturopath, where he was promptly diagnosed with some sort of parasite, then treated with some sort of herbal remedy and diet changes, and lo and behold, recovered and since feels great. I was like, “YES! This is the answer!”
So Neil went to a naturopath. The guy took a very thorough history and seemed genuinely interested in Neil’s health and solving this problem. A bunch of samples were sent to a lab in the states somewhere, and when the results came back, they showed that Neil did have a parasite. They also showed that Neil had intolerances to basically every food ever. So Neil started on a gluten free, dairy free, soy free, egg free, sugar free diet and started on a herbal remedy to get rid of the parasite. This was not too long before Christmas two years ago, because I remember Neil could barely eat anything yummy besides turkey.
So Neil tried that. He ended up feeling pretty crappy, maybe because he was hardly eating anything. He lost a lot of weight because he was often too sick to eat and then when he could eat, his diet was so limited. By now he was sick so often that there was usually a day or two of every week where he ate nothing at all.
He went back to his GP and told him about the naturopath and the results of the tests. His GP literally threw his hands up in the air and basically said all the tests the naturopath did were garbage. He repeated many of the tests, and they all came back negative. It was so very frustrating. Neil felt like we had wasted so much money on the naturopath for nothing, never mind the fact that he had been eating nothing and suffering that way for no good reason apparently. On top of it, his GP was rude and intolerant of any non-traditional treatments, but offered no other referrals/treatments/options. That was the last time Neil saw that guy.
Last August Neil had a particularly bad and painful attack. He went to the emergency department and ended up staying for awhile. Bloodwork was repeated, again, and maybe they did x-rays, I can’t remember. Neil was treated with IV narcotics again. The good thing about this ER visit was that Neil was finally referred to a gastro-enterologist. FINALLY.
He had his first appointment with the GI doctor in January. When Neil described his symptoms, the doctor right away suspected crohns disease. Neil was sent for a small-bowel series, then a colonoscopy, and then finally an MRI to confirm the diagnosis. All this took until September of this year. Neil was back in the ER over the summer for IV pain relief as well, which bumped up one of his appointments. Still, it took over a year since his initial referral to his diagnosis. Over ten years of complaining of pain that only increased in intensity and frequency. By the time he was finally diagnosed Neil was using pain meds on an almost daily basis. He continues to be in pain probably five out of seven days, and uncomfortable the other two days. There is still usually a day or two every week or two where Neil cannot eat at all.
The medical system has been nothing but frustrating for us. One one hand we are thankful for a healthcare system that enables Neil to go to doctor whenever he wants, go for tests as needed without ever having to worry about the cost. But thinking of all of the years of suffering, and of all the damage that crohns has done to Neil’s body is truly sad, and extremely frustrating. (Still, so glad we don’t have a bill to pay!)
Two and a half months ago Neil started his first actual meds for the treatment of crohns. His doctor is starting with the least invasive/least amount of side effects etc. So far they haven’t seem to have made any difference at all. Neil has a follow up appointment in a few weeks where I’m assuming/hoping they will try another route. We went to a crohns info night last week and it seems like that’s how it goes. No one thing works for every body, so it’s sort of trial and error. Around 70-80% of crohns patients end up with some sort of surgery, but obviously doctors want to try everything before resorting to that, especially since crohns almost always returns, just to a different part of the digestive tract. To be honest, at this point, I know Neil would be happy for them to cut him open and take whatever they had to out. His suffering is almost constant, and it’s terrible.
Early yesterday morning Neil got very, very sick again. He was in extreme pain and throwing up a lot. He drove himself to the emergency department (such is the sad reality when there are four sleeping children in your house). He was given a lot of IV narcotics for the pain and had an x-ray. The x-ray showed that Neil had a bowel obstruction, which is apparently a common complication with crohns. It’s not good. Neil didn’t eat or drink anything for about 12 hours, and then slowly reintroduced sips of water and juice over the subsequent 12 or 15 hours. The idea was to give his digestive system time to rest and hopefully reboot itself. It worked, and Neil had and tolerated breakfast this morning and was discharged home. It was his longest hospital stay so far, over 24 hours, and it was really hard. I’m so glad that Neil is home now, even though he is still very uncomfortable and has been sleeping all day. I’m worried, though, that the obstruction will just recur. I wonder if Neil’s intestines aren’t so inflamed and so irritated and possibly full of scar tissue from years and years of being sick.
I see Neil get sick so often and it’s so terrible to watch your spouse be sick with debilitating pain over and over again. There’s really nothing I can do to help and it’s so saddening and so frustrating. I want to be able to help him and I can’t. I want this process to speed up and for the doctor’s to “pull out the big guns” and fix this thing already. Apparently crohns patients can go into remission, sometimes for years and years, and I want that so badly for Neil. Crohns affects his life in a terrible way and he misses out on or suffers through so many things. So many days have been ruined by crohns and I’m so so tired of it. I know it’s lame of me to complain, when Neil’s the one who is in terrible pain so often, but it affects all of us, and I’m over it. The other day I overheard Seth talking to a friend about how his dad was sick, and would be sick for the rest of his life, and how he can’t eat seeds or nuts because they make him sick, etc. etc. and it really just broke my heart to hear him talking like that.
We pray and we pray and we believe for a miracle, but the waiting is so hard. I do know that one day Neil is going to be feeling much better. That one day we will be able to plan family days or trips without worrying if Neil will be sick that day or not. That one day Neil can eat supper without being afraid he’ll be in pain two hours later. I just wish that day was here already.
We really appreciate all our friends and family who have supported us through all of this. I’m so thankful for all of you that have offered to help in any way. Just knowing that you’re there if we need you is so great, so thanks!
And thanks for reading this longest blog post ever. I’m happy to have gotten it all “off my chest”.
ps. If you’re interested more in what crohns actually is, check out this website. We’re still learning too.