It has been a hard couple of days. I wish I could find my usually positive and hopeful self right now, but the only emotion I seem to be capable of summoning up is dread. I spent several hours last night curled up crying on the couch and probably shed enough tears to fill about three ostomy pouches (yes I was rehydrating). I tried to think on the bright side and I kept telling myself that things could be worse, but I simply could not turn off the waterworks.
One of the things I am trying to deal with are the why me thoughts. I had tried so hard to make good decisions in the course of my ulcerative colitis illness. One of the reasons I wanted my ostomy so much, and made my decision to get one rather quickly once my disease turned severe, is that I wanted to avoid possible side effects of the serious drugs. A lifetime of weak bones or joint pain sounded horrible to me and yet here I am; facing the exact thing I had tried so desperately to avoid. It almost makes me wish I could have had my colon removed the first day I heard the word ulcerative colitis.
I also can’t help blaming myself. There was a point about five months before my disease turned severe when I discussed progressing to the next tier of medications with my GI medical team. I was only experiencing mild UC symptoms at the time, but constant small-scale blood loss from my intestines had made my iron reserves low and we were having trouble managing them at the correct levels. I had been taking mesalamine and doing Rowasa enemas and they had been controlling most of my issues well. However, they were not stopping the constant intestinal bleeding. I was told about Imuran as one possibility and had bloodwork done that confirmed I could take it. I was also told about a probiotic called VSL#3. My choice was to try the VSL #3 and avoid the immunosuppressant at that time.
A short time after starting the VSL #3, I went into the most beautiful remission imaginable and had no UC symptoms whatsoever. It felt like a miracle. Unfortunately, the vacation from UC was a short one. Soon I was hit with my most severe flare ever. I was going to the bathroom 20-28 times a day and could not stay hydrated or maintain my weight. I was in rough shape and was admitted to the hospital and put on a high dose of IV steroids to try to get the flare under control.
Now I can’t help wondering if I had chosen the Imuran five months earlier: Would I have avoided those emergency high-dose steroids and the AVN mess that I now find myself in? I know these thoughts probably aren’t productive. In a way though, it feels like my brain has to chew through these questions to find peace and realize that, yes, I made the best decisions I could at the time.
Above all else though, my biggest issue and the one that had me sobbing at 2 a.m. is fear. I am absolutely terrified of what might be ahead. I was frightened by my UC diagnosis and was anxious about my ostomy surgery, but the AVN diagnosis takes things to a new extreme. I know I only have it confirmed in one shoulder now, but I am actually having a hard time finding stories of steroid-induced AVN where it only affected one joint. I am trying to stay optimistic, but the uncertainties are daunting.
When I saw a counselor to help me cope with anxiety after my ostomy surgery, she gave me some mind exercises to try. One of these was to picture myself sitting in my favorite place outdoors with clouds floating through the blue sky above. She said whenever I had a worry, I should visualize taking it and sitting it on one of the clouds. It was important to acknowledge the fears, but it was also necessary to let them go and not be weighed down—the clouds could hold the weight.
So I thought it might be good to list some of my fears and “put them on the clouds.” Some are small worries, some are larger, but all of them are weighing me down. They are listed in no particular order.
- I am afraid my joints are going to die one by one and that I am going to experience endless pain and surgeries.
- I am afraid that if the disease progresses, I will never be able to backpack, climb or snowboard again.
- I am afraid this might worsen and that I won’t get to attempt Rainier this summer.
- I am afraid that Doug is going to miss out on so many things if my AVN got really bad.
- I am afraid that someday I won’t be able to work at the park naturalist job that I absolutely love.
- I am afraid it would be hard to empty my ostomy appliance while healing from shoulder replacement surgery.
- I am afraid I will cease to have inspiration for one of my huge passions in life—my Ostomy Outdoors site—because I will no longer be able to go on adventures. Ditto for my Ostomy Outdoors column in the Phoenix magazine.
- If I couldn’t work, I am afraid I won’t be able to afford health insurance.
- Without health insurance, I am afraid I wouldn’t be able to get any necessary surgeries.
- Without the necessary surgeries, I am afraid I would be doomed to a life of pain.
Just a few tiny concerns, huh? I know that I will work through these fears in due time and that the Heidi that is so full of hope is close by. In fact, I am pretty sure I know where to find her. As soon as my schedule clears, I plan to head up to the mountains and search for my more happy and positive self. I am certain that that part of me is up there, skipping along the trails or zooming down the snow slopes and that soon we will reconnect.
Ostomy Outdoors 
Oh Heidi. I’m so sad to hear you’re struggling with these issues. Thank you for sharing your fears with your readers. I appreciate your acknowledgement of the harsh realities of IBD because I used to feel very alone with my fears, and I know others feel the same way. I hope you get to enjoy some peace soon. Uncertainty sucks. That’s all there is to it. Let’s hope for a good year ahead and some happy surprises. -Alyssa
Alyssa, thank you for your comforting words. It is crazy how isolating it can be… even when you are supported by the most loving and caring friends and family imaginable. The fears and uncertainties, especially in the middle of the night, can sometimes feel so overwhelming. But I am feeling better and finding peace in the situation. And you are so right– there could be some happy surprises. For now, I am going to take advantage of the fact that my AVN is small and only in one shoulder, and as far as I know, not in any other joints. The trails and slopes are out there to be enjoyed now. I can tackle future obstacles later if it ever comes to that.
What ifs can drive a person crazy. I will pray for some peace to come your way. Take Care….
Thank you for your prayers Pam. Yes, the what ifs are always so hard for me. But eventually they always seem to pass and I find peace in the situation. Right now I realize all my joints are still working (albeit one painfully), and I fully intend to take every opportunity that I am afforded to get out and enjoy the things I love. Maybe the AVN will get worse, maybe it won’t, but I am slowly realizing that there is really no point in sitting around and wasting time worrying about it.
Hey heidi, been in that place. IBD sucks and it really is never over,no matter how many surgeries one has. Its not great feeling as you do right now. But you have to allow yourself to greive. It will pass. Have you ever done mindfulness meditation? Time to be in the now and what you have now and what you can do now.
Hi Denise,
I think things were going so well with my ostomy that I felt “cured” of all things IBD. You are right… it is never really over. It has been a hard week and there have been many tears, but I am already starting to feel a little better.
I took a mindfullness meditation class after my ostomy surgery and it was extremely helpful. I have gotten a bit out of practice with it, so I am signed up for a refresher class next month. Looking forward to relearning how to be in the present moment.
Dear Heidi,
Go find that Heidi Full of Hope! I know she’s out there skipping and zooming. Don’t forget to bring a hat. Heidi Full of Hope gets cold easily.
You are always in my thoughts and prayers.
No kidding. Heidi Full of Hope and Always Cold has her space heater on under her desk right now!
Thank you for your thoughts and willingness to always lend an ear. Perhaps you need to join Heidi Full of Hope on the slopes this year? 🙂
My sweet Heidi
You made the right decisions. You made the best decisions you could with the information you had. If you can bear it, try to take this 5 minutes at the time. I don’t have your email address, and I don’t want to put my px on the web, but my email is trueallie@gmail.com and if you’ll write me from your private email I will send you my phone number in case you need to call someone in the middle of the night and just cry. I am here.
Allie
Thank you so much Allie. You are right. I need to start taking things five minutes at a time. Other than some arm pain, I am doing okay right now. I need to focus on that instead of the things that may or may not happen in the future. I normally enjoy thinking ahead to the future and all my plans and goals, but now when I do, the uncertainty of this all just scares me. I have some time off over the holidays, and I think that getting out and doing some of the things I enjoy will help me feel better.
I have your email and will contact you to get your number soon. Thank you!
-Heidi
Hi Heidi,
My son had total colectomy surgery at the age of 19 after he developed pre-cancer condition as the result of Remicade treatment of his non-responding to other treatments severe UC. Unfortunately, IBD is the disease where there are no right choices; there are only short-term vs. long-term wrong choices. We can blame ourselves for not finding a better choice, we can blame medicine which in case of IBD leaves us with no choices, we can blame nature or God depending on our personal beliefs for the existence of this illness, but the point is that if you were to chose Imuran, most likely you would still have a long list of things to worry about.
I like the idea of putting your worries on the clouds, even if in my imagination my clouds of worries already formed into a huge thunderstorm. But, with the right wind clouds eventually will fly away and the sunny sky will come back. You have Doug, your friends, mountains and, of course, your blog. I hope with their help you can find the wind strong enough to blow your clouds away.
Hi Ann,
Thank you for the wise and encouraging words. You are right that there are no right choices for IBD. When I was in the hospital during my final flare and trying to figure out whether I wanted to try Remicade or have my colon removed, Doug and I had a good conversation with our friend who is a doctor. He said that having to make such impossible choices was like having a plate of food in which you absolutely hated every single item. However, you had to pick one or you would starve. Even though my mind likes to analyze things like crazy, I know in my heart that I made the best decision I could.
The clouds are parting a little more each day. I hope they are for you as well and that your son is doing well.
Take Care,
Heidi
I share these same fears for my son who is only 15 and possibly looking at this option in the future. He is currently on Imuran and it doesn’t seem to be working. I don’t want to say it could be worse so all I can say is UC sucks! I want to punch it in the face! Maybe you could take out some anger and/or aggression and try boxing. I don;t know sweetie. I am just really sorry these things exist and there isn’t enough medicine out there to help us. 😦 My heart is broken in two for you.
I am so sorry to hear that your son has UC. It must be incredibly hard to watch your child go through this. UC does suck! When I was officially diagnosed in the summer of 2006, I was diagnosed with celiac disease at the same time (or at least a blood test confirmed gluten intolerance). I remember being way more worried about that at first because I felt like it affected me a lot more due to all the diet changes. My UC was just a mild inconvenience at that time. Boy- how things change! I had no idea where this disease would eventually lead. Fortunately I discovered a friend of mine had an ostomy early on. She led a very full life, so I knew if I ever got to the point of surgery, I would be okay. And I am! Life with my ostomy is great. Now I just need to get past the next UC hurdle that has been thrown my way and I know I am strong enough to deal with it. If there is one thing having UC has taught me is that I have inner reserves of strength that I never knew I had. Going through such tough things makes us realize that.
Boxing sounds good- if it wasn’t so hard on the shoulder ha ha.
Hope your son is hanging in there too. Sending positive thoughts his way.
-Heidi
Heidi,
Ryan and I prayed over you and processed your situation so deeply after reading this. We ached with you. Really, no words are really going to comfort the fears and pain I know you feel. The situation and prognosis and uncertainties are beyond horrible. Just know you are NOT alone and we support you fully.
Heidi, whether you’re outdoors, working your job, in a hospital post-surgery, or figuring out some new season of life-we are consistently inspired and encouraged by you. Your worth certainly is not in being able to climb a mountain (though I know you LOVE it). You have taught us so very much from every up and down of chronic illness and ostomy life. Thank you for sharing your heart with such rawness and vulnerability in this post today-we appreciated that so much too.
I wish we had more to offer, but all we know how to do is pray. There are wise words in Proverbs that we cling to when things are looking dim and confusing around us: Many are the plans in the mind of a man, but it is the purpose of the LORD that will stand.
You rock Heidi,
Ryan & Carly Decker
Carly,
How did you and Ryan know this was the exact message I needed to hear? I woke up this morning after a hard night and more tears and found your comment. One of my biggest passions in life is showing others what is possible after ostomy surgery. Many of my tears last night stemmed from me wondering if I could still deliver this message if things end up progressing for the worse with the AVN. Your words give me comfort that I can. Thank you with all my heart.
-Heidi
Heidi, I’ve been thinking of you a lot; such a hard time for you. Reading this post, one little thing that went through my mind is that Imuran and 6 MP can take a really long time to kick in — I was on 6 MP and it took something like 8 months to start working, and then it affected my liver function, so I couldn’t get up to a high enough dose to get off the remicade that was to “tide me over” til the 6MP kicked in….. not sure this helps at all, why would it, but the Imuran might very well not have made any difference… and amazing that VSL 3 helped you, never did anything for me….
One technique for fears that I’ve found helpful is to just calmly respond to yourself, “That could happen.” I read it in something Buddhist …. It can help break the cycle of judging yourself for having too many fears etc, and just get you back into the present (i.e. that COULD happen, but it isn’t happening now). Take or leave.
Getting yourself to the mountains sounds like a really good idea. Hang in.
Debra,
Thanks for the insights. You are right… I hadn’t thought of it that way and it does make me feel better. I do remember my doctor saying the Imuran took a long time to take effect. That is why they couldn’t give it to me in the hospital for the severe flare and put me on the high prednisone dose and then an infusion of Remicade which did the trick but caused excruciating joint pain. Knowing me, I would have been sensitive to the Imuran as well– My body does not seem to like medication. I tend to often get the bad side-effects.
I have always believed that my final severe flare was brought on by the grief of losing my dog. A couple of days before putting her to sleep is when everything started and it just got worse. I am sure no medicine could have overcome my body’s reaction to the stress and sadness of that situation. I know in my heart that once I fell into the severe flare, my doctors did everything they could. My colon was in rough shape. The prednisone was probably needed. I know I made the best decisions I could through it all, but it is still so easy to want to second-guess things. One thing I have never regretted though is my ostomy. It has given me so much health back and has prevented me from having to take other frightening drugs.
That is a really good technique idea! I will give it a try. I will be heading out for some hiking and snowboarding this weekend.
Thanks for thinking of me!
-Heidi