Planning For a Flare up

The answer to that question may seem like an obvious no, but my husband and I are learning there must be at least a few things we should try and do in case he has a serious flareup. When he was hospitalized last year, we were lucky to have his sister here at just the right time who also happened to be able to stay the extra days we needed her to be here. Not everyone can be so flexible. When she went home I was doing everything- including driving Jason to doc appointments, sometimes a few in a day- with my 3 young kids. I cracked a joke that I was his taxi, but really, that's just how we had to do it. When he started having symptoms on our holiday, I don't think I realized how much of the trauma from last year still existed. This past week, he's had a few days that he's been really sick, and even he isn't sure if it's one thing or his Crohns. I was suddenly panicking in my head over the pressure of going through that with him again, and wondering if I would be able to do it. I'm not sure what worries me more, the fact that it seems more and more his body is relying on meds to keep a balance of everything, or the potential for him to have 2 big flare ups in less than a year. In the last few years since he started methotrexate, I've seen a change in how his body responds to it, and I don't want him to get to the point where we're looking at other options, because that means more meds. All things considered, anyone with this type of disease knows you cannot plan for what will happen, but you have to know your symptoms and be on top of getting help before things get out of control. In a follow up visit with my doc for some of my own personal tests, we spent a lot of time talking about how Jason and I need to have a plan in place in case he does get really sick again- that means, having back ups, and people who can help right away at a moments notice. I give a lot of credit to those with this condition who do it on their own- it can't be easy. In fact, I know there's no way anyone could get through a serious flare up without some kind of help or support. I'm thankful that I can do that for him. But it does put in perspective how much it affects our family as a whole when the doc is telling us to have a plan. And thinking back on last year, when we didn't. My goal is to find some support locally, either through a counsellor for people with chronic conditions, or to start a group. There has to be a connecting point for people with chronic sickness, either for emotional support, or physical, hands on support whatever that may be for them. I found it frustrating last year trying to get connected somehow and not finding very many options at all for people with Crohn's disease. I'm not really sure yet what that will look like. How do you handle flare ups? Do you have support in place to help counter the shock and severity of a flare up? If you could have a support group to connect with, what would that look like for you? Being honest: I'm really hating Crohn's disease this week. I hope you're feeling well wherever you are.

Vacations, Suntans, and Flare ups

We all just got back from a 2 week holiday in Florida. Sooo nice to get away and be somewhere warmer and get some sun!! We had 3 kids with us on a 6 hour flight, and they did amazing. Only downside is that we only got a few good beach days, but it was still wonderful. It's been almost a full year since my husband's last major flare up, so going on holidays we made sure we brought the usual things: medication, vitamins. Nothing too much out of the ordinary. About a week into our holiday, we sent a few hours at the beach, and my husband ended up with a wicked burn on his feet. Of all places! Like deep red burn, and don't ever touch him kind of burn. Out of the 7 of us, he got the worst, and it was nowhere else on his body. After some thought, we figured it could be side effect of prednisone which he takes on occasion. Anybody else have that happen? For the rest of our trip he kept his feet covered when we went out, and put layers and layers of aloe vera gel on to soothe the soreness. It's still a bit shocking when you notice signs of a flare up. Even if you've been diagnosed for years or more, they always come at unexpected times. Along with his burn, his ankles started to swell, which for him, is a typical sign of an impending flare up, as he usually gets arthritic flares in his ankles and knees. So when i saw this, I got worried and wondered what would happen next. Last year this time he was hospitalized and treated for sepsis due to severe inflammation from an infection he developed from a Crohn's flare up. That's the short story. Maybe we are more aware now of what signs to watch for, and I think that's a good thing, but I still worry, because I also know that one flare up can be so different than another. How do you handle flare ups or potential ones while you travel? Thankfully we were spending time with family and they were very understanding, but I know that is not always the case.

When Family Sickness Comes

So I'm sure it's been close to 4 weeks that I've been sick. Unrelenting flu mixed with a cold, mixed with a cough, mixed with lack of sleep. All of us. My hubs went to the doc today to check on an ear infection that won't go away. Doc told him I'm probably still contagious and not to share anything. Any other person I would think, it's no big deal! It's just a cold! But sometimes I'm reminded of how sick he was last year, and how I definately don't want him that sick again. And things go through my head about what an ear infection could turn into. I was reading a facebook post tonight and someone was asking about how to handle people who ask "how are you feeling?" And for those with Crohns disease who are constantly sick, when you get sick of telling people you are sick, and they stop believing you, what do you do? I have to remind myself sometimes that my husband has a constant chronic illness- admittedly, it can be hard to realize he isn't feeling well unless he tells me. There are generally not a lot of outward symptoms. Sometimes he is very honest with me, and other times he tells me what he feels like. But I was thinking today how important it is that he follows his doc's advice to get lots of rest and eat well, and take care of himself. Because that totally affects how his body will respond to this illness. With 3 young kids at home, who mostly want to share our bed with us, it sometimes feels impossible to expect any real sound, uninterrupted rest. And when I'm sick, and i need to rest to recover, it's hard to expect him to take over when in retrospect he may need it more than me. When mommy gets sick, it's a big deal. When daddy gets sick, it's an ever bigger deal, and I need to look out for him. Something I'm working through and trying to get better at. Hope you're well.

Crohn's and Family

I was thinking of a day a few months ago when i took my 3 kids to the swimming pool by myself. This is something i'm actually used to doing, although it takes effort, especially with a little one who still requires holding. Someone told me that day how brave I was, and maybe that has some truth, but really I was doing it because that is the only way they could all go. My husband has remaining scars from a previous skin breakout, and at the time was dealing with another one- so there was no way he was going swimming with open sores. There are moments when I feel separate from Crohn's, because it does not affect me physically, and there are times i realize the effect it has on our family as a whole. Some days, he comes home and is exhausted, usually from the effects of medication, and sometimes just active disease takes the life out of him. When this happens, it can mean cleaning up dinner, taking the kids out, putting them to bed by myself. I'm not meaning to complain, just pointing out the ups and downs of how it affects him day to day. When he feels well, it seems like Crohn's disease doesn't exist, but when he is struggling, it does affect us all, and life seems to have to go at a slower pace. Tomorrow we leave for a family holiday, which means packing lots of food to help my hubby stick to his SCD, while also keeping my kids happy. We won't be spending much time at the beach, though my kids would love it. It takes a lot to keep things afloat sometimes, making sure everyone is fed well, happy, and like they haven't missed out on anything. The most important thing is that we all spend time together, and I am so grateful we can enjoy this break together, especially after seeing him recover after a really serious flare up. Actually, his doc said he is just starting to really recover, which is cause for celebration and a holiday! It's hard to believe 2 months ago he was in the hospital-- he has come a long way. How do you cope with the ups and downs of Crohn's disease in your family? Do you have a system, or family to help you cope?

What the Docs Won't Tell You

I had an appointment with our family doc the other day, where I asked him if he had ever heard of the SCD, to which he said no. I know GP's don't generally have a lot of knowlege on diet per se, and maybe in particular something SO specific. My hubs today though went to see a dietician, at where he was supposed to find info on increasing his protein intake due to the skin wounds that are still in the process of healing. While a lot of info was pretty basic, she actually had a family member who has Crohn's, who has been on SCD for awhile and now does not take medication. This was incredibly encouraging although she made it sound like she was saying it "off the record" in a way, and told him that diets like that aren't usually encouraged becuase they require taking so much away from a regular diet, and are a huge committment. Clearly. It is so helpful and encouraging to hear that this actually works! We have barely scraped the edge of this, but it gives me hope that he will be able to get control of his symptoms and be able to manage his flare ups much better. Docs will not usually tell you to try a change in diet. At least they would not tell you to try something so extreme. They are more likely to encourage you stay on medication, and who can blame them, don't they tend to be the most reliable? I had someone tell me when I said we were trying this, that if his symptoms clear up, his doc will likely say that he is in remission. But a lot of what I have read is that it has nearly cured people of Crohn's disease. Anyways, it is something that will take time and committment, and I will say I don't encourage anyone to simply stop taking meds if you really need them. My husband has not done that, he is continuing to take his meds regularly, and at this point has not talked about stopping. I'm not sure at which point he might consider that. I hope wherever you are, you are well, and if you are not well, hang in there. Sometimes I wish this wasn't a part of our life as it can be very hard and intense, but I am amazed at how much I have learned about how our bodies work, and while we try and eat healthy at home, this is a huge learning curve for us both and I'm thankful for that too, as it provides understanding of how food can really affect our bodies, in particular for those with chronic disease.

Protecting Kids from the D Word

On different occasions over the years we have talked about the few people in our lives who have passed away. Our oldest, who is 5, i think at this point understands what that means and will sometimes ask questions. When my husband was recently very sick and going back and forth to the hospital this conversation came up a few times as he asked about his daddy and if he was going to be ok. We had a few private heart to hearts where we talked about how the doctors and nurses were taking great care of him and that he was going to be okay. It's hard to see my young one going through this thought process as I know he was feeling incredibly affected and concerned for his best friend. Yesterday after watching my husband change the bandages on his legs the question came up again and we had to answer him the best way we knew how: by assuring him no one was dying and reminding him that daddy is getting better, it just takes time. While we know having Crohn's does not mean dying, eventually some way or another people do pass away. For anyone with kids, have you had these conversations, and how do you field the questions they have about death?

SCD, Doctors, and Tortilla Chips

So in the past few weeks my hubby and I have been doing a lot of research on self-treatment by diet, and came across the Specific Carbohydrate Diet (SCD). While he has been apprehensive to adjust his diet, he has quickly attached himself to this, and so it has sent us on quite a thrilling adventure! Lots of new things to try, and actually it's been great to hear him notice how he feels when he eats something "illegal". Considering the last 3 years he has relied on medication to keep his symptoms in check, I'm excited to see how this will affect him overall. Sadly, I am sitting here eating tortilla chips (gluten free), and salsa....and tired. It's been busy, and in truth, it's a lot of work suddenly doing EVERYTHING literally from home. I do a lot of cooking anyways, but I feel like this has sent me into turbo mode trying new things, adjusting things and just simply the time it takes to run a house, feed a family of 5, and whatever. 3 kids require a lot of attention and so I really have to plan my time wisely, which I am having to figure out fast. Does anyone else follow SCD? How was the adjustment period for you? We are really in our 2nd week and we have actually been enjoying the changes, but yes, there is definately an adjustment period. Like tonight, we are low on groceries, I am tired, and my hubs has taken our two older ones out for dinner, at imnotsurewhere. Anyways, my hope is that after some time he will really have a better idea of what food affects him, but moreso that he will learn to have better control of his symptoms. For more info on this you can visit breakingtheviciouscycle.info. He also had an appointment today to check on his skin wounds, which he was worried were getting infected again. I think he has nearly met every doc in town! He ended up meeting with the resident wound specialist who knows some, but not all about his condition. It ended up being somewhat educational, and so we continue on in this. It was a great reminder to continue to educate ourselves and to learn to do self-care. Regardless of your Crohn's symptoms, I think this is huge, because depending on where you live, and the availability of doctors there are probably times when you will have to help yourself a bit. His specialist is back in the city 6.5 hours away, and our family doc here works at the hospital every other week so it can be hard to see him on short notice. I read recently that GI patients are waiting upwards of 4 times the expected wait time to meet with doctors. I'm not much surprised by this as when we make an appointment with his GI doc there is usually at least a month wait, if not more, unless it is an emergency (which it is usually not). But for those patients who are in really rough shape, or who are in the process of getting a proper diagnosis, how do you/they cope in the meantime? Our GI specialist in Calgary now only works 1 1/2 days a week (a WEEK) and she is excellent. I wonder what it would take to get more docs trained in this field because they are clearly needed.