IC My New Life

We were on the interstate only 30 miles away from our home. My husband was driving.  At first, a couple of lights showed up on my car’s dashboard. Then all of a sudden all of the dashboard lights disappeared. My husband had already pulled off onto the first exit we came upon. I started feeling anxious and stressed which can lead to a Crohn’s flare if I don’t stay calm.

We decided to pull over in someone’s driveway and call our Roadside Assistance to come and pick up our now-dead car. We also called our daughter and son-in-law to pick us up and take us home. After only a few minutes of waiting, that’s when my nightmare started.

I started having severe stomach cramps and nausea. I immediately started taking medicine to hopefully lessen the horrid effects of a Crohn’s flare. It was difficult to swallow my pills because I felt like I was adding more in a stomach that felt full and did not want to be disturbed in any way. Many times when I feel a flare coming on, I can take my medicine, lie down and be completely still and if I have the luxury, snuggle with my heating pad on my stomach and avoid the ordeal or at least lessen the effects.

As I was lying back in the front seat of my car, my daughter and her husband showed up. I couldn’t move. I wasn’t feeling better, I was feeling worse. The skies began to darken and any flickers of light were bothering me. I hid my head beneath my hat. Moments later the wrecker showed up. Under normal circumstances, both of these things would have received a very warm welcome from me. Instead, they caused me more anxiety, frustrated me, and probably most of all, embarrassed me.

I was not in control. Crohn’s symptoms were definitely in control. I wanted to hop up and jump in my daughter’s car, but I knew if I didn’t keep still (and maybe even if I did)  I might not be able to win this battle. Instead, as tears fell down my face, I slowly got up, walked over to her car, and lay down in the back seat. I continued to have very painful cramps and nausea all the way home. It was a long, difficult, and bumpy ride for me. I could not wait to arrive home and fire up my heating pad and snuggle up with my cats in my bed!!

 I don’t mind sharing with anyone that I have Crohn’s (a bathroom disease) or Interstitial Cystitis (another bathroom condition). What I don’t like is sharing the worst part of my flares. I want to be alone…just me and the Lord. I talk to Him a lot when I am in the throws of these trials. Sometimes I am begging for relief, sometimes I am thanking Him when I start feeling better.  Things can always be worse, although amid our battle it does not seem like it.

In this particular incident, I was ashamed and embarrassed.  Most of the time I try to hide my pain and struggles. I try to fit in and do a lot of the things I used to do..but IT IS HARD! I am not in control in a flare…and I don’t like that, my guard is let down and I’m vulnerable and I don’t like that either! What I did learn is that I can count on my world (aka known as my loved ones) to be there for me. My daughter stepped up and showed me her love. She was very supportive and that is what I needed.

There are always going to be times when life feels like a nightmare.  Surround yourself with supportive, positive folks and talk to the Lord about all of your struggles and the journey will be much easier.

Valentine’s Day for me and my husband sure has changed over the years. I remember when spending an hour or so waiting for a table at a popular restaurant seemed to be my idea of how to show our love. It was more of an outward gesture – to go and see and be seen was what my heart desired.

In my younger years, I always thought that he HAD to buy me chocolates and send me flowers. I think I was trying to keep up with everyone else’s idea of what true love was.

Now I know that all of that doesn’t really matter. No, I’m not opposed to chocolates and flowers, but they are certainly not a requirement to show me love.

This year my, after I came home from work, my husband asked me if we were going to do “shots.” My first reaction was to think he was talking about drinking alcohol, but I knew he knows me better than that. So then, I figured we would take pictures and “do headshots.” But what he really was talking about was him helping me do my Humira shots to treat my Crohn’s disease.

After we told each other “Happy Valentine’s Day,” opened a few small gifts, he gave me my Humira shots and I went to bed. I felt awful by then. I was beyond tired and my body ached from head to toe. Earlier that morning I was in a Crohn’s flare and I pushed myself and went to work.

Most of the time, if I push myself when I’m already sick, I will end up doing more harm than good. That’s exactly what happened on the day set aside to show love. My night ended in a Fibromyalgia flare. However, my husband showed me the true meaning of love by helping me with my injections and not expecting any more out of me than just a quiet night at home with my true love.

Growing older changes your life. Some things are harder, but some things are better. If growing older means that I am learning the true meaning of love then I think that is a good thing. Of course, the Bible says it better than I can…What are some ways that your Valentine’s Day or ideas about love have changed? Please leave me a comment below.

My Gastroenterologist ordered a CT scan of my small intestine to check the progress of my Entyvio infusions for my Chron’s disease. I had told him that if I didn’t have diarrhea, nausea, and weakness that I had pain, pressure and bloating.

Less than two hours after my scan my doctor called me…not a good sign! He explained that they found a large mass in my pelvic area. I made an appointment with my Urogynecologist to find out exactly what it was and what to do about it. He did an ultrasound and said that I had an ovarian tumor the size of a cantaloupe. I knew that I was facing surgery, but I was hoping it would be laparoscopic surgery. He said it was too big for that and he would go back in the same incision where I had a hysterectomy and an ectopic pregnancy removal.  I knew the pain and recovery I would be facing…or so I thought!

My doctor said he could do the surgery the following Friday. He stated he had planned to take the day off to travel but he could do my surgery and then go on his trip. I said it sounds like you want to do it quickly. He said it is more because I know you are uncomfortable. I was more than uncomfortable, I was in pain, so I said next Friday will be good! I had pain in my lower, left, pelvic area. By the following week, I was starting to have pain on both sides of my pelvis.

When I woke up from the surgery in the recovery room, I remember being very groggy, sensitive to the overhead lights, freezing cold, and moaning and moaning because I was in so much pain. I was in there about two hours, much longer than expected.  When they took me to my room I looked like a mummy because of all the blankets they had wrapped around my head and the rest of my body trying to keep me warm and to block the lights.

My nurse and me as the mummy.

The first person I saw was my husband. I remember grabbing his hand and a wealth of emotions came over me. I was so thankful to see him again. He told me what the doctor said, but it was a little different from what we finally figured out to be the whole story.

My doctor removed the tumor after he drained over three liters of fluid from it. He said it was bigger than a basketball and that I was the equivalent of being past a full-term pregnancy in size. He said it was stuck to my intestines and wrapped around my ureter. He had to cut my ureter. Another doctor then came in to finish the surgery.

A Urologist had to reconstruct my bladder in order to reach the ureter. He then stitched me up and put in 17 staples. When I woke up I had a catheter that would stay in for ten days. After talking to the Urologist, I also realized that I would be in the hospital for three days instead of one!

My recovery was going to be longer and more complicated.  I was going to be in a lot more pain than I originally thought. But the Good Lord blessed me with an amazing support system. My husband spent every night in the hospital with me and waited on me hand and foot, to the point that I started saying that I would do things myself just because I knew that I needed to move around more. He was also a huge encourager to me to continue to get up and move around.

My daughter and my sister stayed with me so that my husband could go home feed the cats, shower, etc. It was so good to have them and other visitors during my stay at what seemed like a very expensive spa retreat. I had nurses checking on me every couple of hours,  a special bed that assisted me in resting, sitting up, and getting up to walk. I rested more those 3 days than I ever have on any vacation and spent lots of quality time with my husband.

In a way, it was very relaxing. I usually try to look on the bright side of things. I knew I wouldn’t get that kind of rest after I left that “spa.” I tried to make the best of my time with my family and friends. Although I had to go through a lot to get that much-needed rest. I appreciated it for what it was. It was an escape from the fast pace of everyday life and my long To Do Lists both at home and work.

I believe the Lord allows us to go through struggles to slow us down and make us really think about what is important in life. For me, my Faith, Family, and Friends are so important to me. I also appreciate the importance of the expert care of my doctors and have written Thank You cards to them.

I want to continue to reach out to those that mean so much to me in my life. I want to continue to give the Lord what He is due. He has brought me through such a difficult time and provided so much love to me from Him and my loved ones.

During my recent follow-up visit with my Urogynecologist that did the initial surgery, I asked him what is the take away from all of this that I can pass along to others so that they will benefit from what I have been through. The main take away that I can pass along is to encourage all ladies to have their yearly physical exam. Since I had a hysterectomy, I don’t have to have pap smears, so I don’t have annual exams. This could have been another way that my doctor would have found my tumor sooner. Given the other issues I have, such as Crohn’s disease and Interstitial Cystitis; pain, pressure and bloating in the pelvic area are common. I suffered for a long time and I don’t want any other woman to have to suffer needlessly as I did.

My story could have ended very differently. My pathology reports could have come back with a malignant tumor instead of benign. I can’t imagine recovering from this surgery, dealing with Crohn’s, Fibromyalgia, etc., etc. AND being told that I have cancer. Thankfully I don’t have to worry about that and hopefully, this will help some of you to take action on a much-needed cancer screening that you have put off or to encourage a family member or friend to take this step in cancer prevention and unnecessary pain.

Me and my basketball.

If you have a similar story or heed my words of advice, please let me know in the comments section.

Since I have recently been diagnosed with Crohn’s disease, I began taking a new medication. I started on Budesonide in December. It was a few days before Christmas and my husband was going to pick up my prescription for me. I looked online to see how much it was and found out it was going to be $226.

I told him not to get it that I could just wait. I was very upset that it cost so much and I was feeling bad too. He said that he was going to go ahead and pick it up and that we would just have to cut back on Christmas for our daughter. That, of course, upset me even more. I begged him not to get it, but he did anyway.

I started taking it and after a few weeks, I started feeling a little more“human” again. I wasn’t nauseated all the time and not having as much diarrhea. Then in January when it was time for a refill my regular pharmacy told me that it would be $1,100.00 this month. I had completely forgotten about the new year…meaning a new deductible

🙁

I called around to find the cheapest, local cash price. She told me it would $900 if I paid cash or it would be $1,100 with my insurance. I said are you sure that you filed my insurance? Would you please ask someone else there to double check. She said she would and called me back and told me that the prices were correct. Yes, that’s correct. It was cheaper without my insurance.

I was about to learn a lesson in Insurance 101. I called my insurance company to make sure that she had indeed filed the claim. He said yes and that the $1,100 was the “negotiated price” from my insurance company. In other words, I felt like I was being ripped off, to say the least.

I called the manufacturer since I have heard several commercials that say the manufacturer may be able to help. This is an example: “If you can’t afford your medicine, AstraZeneca may be able to help.” When I called the manufacturer they said: “We can’t help you with that medication.”

In desperation, I called my doctor’s office and the most helpful, young lady answered the phone. When I explained my situation she stated that one of her co-workers has Crohn’s and that she uses canadadrugs.com. I was not convinced. I was concerned about ordering my medication online.

Then I talked to the lady that has Crohn’s and she said that she always uses them and so do some of their patients. She said that they even offer more of a discount if you order more than a month at a time. I was now persuaded to do my “drug deal” online.

I called and asked about the pricing and was told that it would be $89 plus $10 shipping!! Thank the Lord! That price is a lot more reasonable! There was one problem it would take three weeks for the shipping. I also had to fill out some paperwork, send a voided check, and get another prescription from the doctor.

It was February 1st when I finally placed the order. It was near the end of February before I started taking the medication again. I was starting again and it took a few weeks for me to notice a change. However, this time the improvement was not as apparent as it was the first time.

I feel like I am still struggling a lot. I have days when my stomach cramps all day. I have had nights when I have to run to the bathroom several times during the night. I have days that I am in a Crohn’s flare and push myself and still go to work only to pay for it for the next several days.

After a recent visit to my gastroenterologist, I am considering taking Humira injections. I told him I would like to give what I am taking now at least another month. There are a lot possible side effects from Humira. My doctor said that I needed to look at the quality of life versus side effects. I agree and I have come to to the same conclusion with other medications that I have tried.

Once such medication was Elmiron that I was taking for my bladder disease (Interstitial Cystitis.) I took it for several months, but I was nauseated, couldn’t sleep or eat most all of the time. I felt like I was losing my mind.  I finally decided it was not worth it for me and I quit taking it. Even though it is the only FDA medication approved for treating my bladder disease.

I suffer from symptoms of my bladder disease every day but it is not the issue that is screaming the loudest in my body now. For months on end I will suffer from flares (increased symptoms) of my bladder issues and then I may go into remission for a few months.

As I continue along this journey I never know when I receive “Another Life Sentence.”  But one thing I can always count on is that when I am facing challenging times it is an opportunity for me to trust the Lord.  If I look at my path and try to handle it myself, I will certainly face anxiety and depression.  The best way I can face each new day is to stay in close communication with the Lord.  My thoughts and spoken words should reflect my trust in the Lord.  I know He can keep me in perfect peace.

I was very determined to figure out what was going on with my digestive issues. As I told you in my last post I have had stomach pain, diarrhea, nausea and weakness for over twenty years. My symptoms were getting worse. I also started having stomach cramps and more bad days than good days.

I already had a colonoscopy. The next procedure on the list was an upper endoscopy. Compared to the colonoscopy the endoscopy was a walk in the park. I’m glad I decided to have the worst of the two first. My upper endoscopy went well. It did show that I have acid reflux.  So add that to my symptom list; I have heartburn most nights now.

The next recommended procedure was the Pill Cam. This is a tiny camera that you swallow and it takes thousands of pictures of your small intestine. It was a painless procedure. I went in one morning and swallowed the pill, they placed a small strap around my waist that holds a recorder and the photo shoot began.

Later that afternoon I returned to the doctor’s office to turn in the recorder and belt. The camera comes out….um, naturally.

Five days before Christmas my Gastroenterologist called and left a message on my answering machine with the results from the Pill Cam test. He informs me that I have ulcers in my ileum or small intestine. He states that two things cause ulcers in this area; taking NSAIDs such as Aleve and Ibuprofen or Crohn’s disease. He knew that I don’t take NSAIDs so he said that he is worried that I have Crohn’s disease.

I played the message over and over. I listened closely to every word that he said. But I decided to put this news in the back of my mind and enjoy my Christmas holiday as much as possible.

In a way I was relieved. I finally have answers after all these years, but on the other hand, it was not the news I wanted to hear. No one wants to be told that they have yet another chronic disease.  

*Crohn’s disease is a rare, chronic inflammatory bowel disease. There is no cure for Crohn’s and it sometimes causes life-threatening complications. Crohn’s disease causes abdominal pain, diarrhea, weight loss, anemia, and fatigue. Some people may be symptom-free most of their lives, while others can have severe chronic symptoms that never go away…Another Life Sentence for me, Another rare disease that most people don’t understand, Another auto-immune disease, Another disease with no cure to add to the list of others that I already have such as Fibromyalgia, and Interstitial Cystitis.

The good news is that I have had Crohn’s for over twenty years and now my doctor will know how to treat it. For the last five years, I was convinced that I had Irritable Bowel Syndrome (IBS).   Another doctor suggested it based on my symptoms. At first, I didn’t agree with him but my symptoms seem to fit. The symptoms of IBS and Crohn’s can be very similar.

My Gastroenterologist immediately started me on an antispasmodic. It helps reduce the symptoms of stomach cramping. He also started me on Budesonide.   It decreases symptoms such as pain and diarrhea. Budesonide is an anti-inflammatory drug.

Within a few weeks, I started feeling better. I wasn’t nauseated all the time, the stomach cramping was reduced and I rarely had any diarrhea. I felt somewhat human-like again. It was a great feeling!

I am thankful that I have answers to a question that affects my life daily.  I am thankful because I know that the Lord will be beside me, guiding me no matter what is going on in my life.  I also know that my struggles make me realize just how strong I am.

Stay tuned to find out why this feeling of relief only lasted a few weeks…

https://www.crohnsandcolitis.com/crohns/disease-symptoms

Recently I had a week that was very difficult. I dealt with an IBS flare every day that week and Fibromyalgia flares for three days. It was getting to me…I was struggling mentally.

My doctor appointment was scheduled for Wednesday. I was in a Fibromyalgia flare but decided to go anyway. Big mistake! Everything irritated me even the teenage girls in the waiting area who were talking loudly and being, well, like teenage girls…lots of drama.

Then I was taken to a “holding area” and greeted….no, not greeted at all, by a nurse who then took me to a small open room and proceeded to ask me questions for all to hear about my medications and my surgery history, etc. I thought there was some kind of privacy thing now…um, guess not! If I had the energy and spunk that I have when I feel at least a little bit better I would have asked her about talking to me privately. Then I was taken to another “holding area” where I was able to hear an another nurse complain about another patient. Not what any patient wants to hear and not what I wanted to hear at all, especially since I felt so bad.

Things were not off to a good start but it was the visit with the doctor that upset me the most. I felt like I was more of a burden to him than anything. Like all of my crazy conditions were frustrating him and he didn’t want to deal with me. Just imagine how I feel. I have to live with these conditions every day of my life. I can’t send me away after humiliating me and go on to the next person. He even said in a very unpleasant tone “I can’t fix all of your issues.”

I realize that he can’t, I can’t, nor can a team of doctors fix all of my issues. I understand that. Most of the time I mainly just want someone to listen to me with compassion and make educated suggestions. Or just listen to me, let me cry and just be there for me. If I am paying you to listen to me, please at least be compassionate and not make me feel worse.

On Friday I talked to my sister about some of my struggles and she listened, made suggestions, and just showed me love. I was starting to see the light at the end of a long, hard week. I still didn’t feel good physically but mentally I was relieved just to be able to talk to someone who had empathy for me.

Later that day my husband called me and we made plans to get eat supper after I worked a couple of hours. We met at the restaurant and things were off to a good start. I was enjoying his company and we laughed along with the server as he had to bring us our drinks three times before they tasted as they should.

Then all of the sudden, “I was double booked.” You know from the Viberzi commercial…

I looked at my husband with genuine sorrow and said a phrase he has heard over and over…”I am sick.” He knows that means I need to go home asap. I started popping Zofran for my nausea and Loperamide Hydrochloride to hopefully prevent an IBS attack. My husband thankfully went to the server and said something to the effect of, “Bag it up.”

Adding to the horrible feeling of an IBS attack, I felt defeat for myself, and heartfelt disappointment for my husband. I looked at him and said, “I am sorry.” Another phrase that he hears repeatedly from me due to my many illnesses. I felt guilty…one of many of my feelings with chronic pain, etc.

But I know that I have chronic issues for a reason. I know that the only one that can heal me is my Father and Savior. And I know at least for now, I am double booked, with chronic pain, and a mission to encourage others.

I am thankful for a husband that takes it in stride when after a long week of work, his well deserved steak dinner has to be boxed up and taken home to eat.  I am also thankful that my Heavenly Father has plans for me no matter how messed up my “date night” may turn out to be.

As I drove myself home I had an overwhelming sense of sorrow and depression.  I turned the radio on and heard the exact song I needed to hear at the exact time I needed to hear it.  The song is called “Thy Will.”  As she sang, I could relate to every single word as if the song was written for me on that day.  I had a good cry but I also took to heart the words that were being so beautifully and emotionally sang.  I also remembered that I am going through all my struggles for a reason and the most important thing is that God’s will is done in my life.

My life is like a box of chocolates, I never know what I’m gonna get. One morning, recently, I woke up feeling refreshed (a very rare feeling for me) because I had slept well the night before (again very rare). I felt good for most of the day despite the fact that my Irritable Bowel Syndrome (IBS) has flared and I feel nauseated. But my spirits were good.

From one of my favorite movies, “Forrest Gump.”

The next day I woke up exhausted and in pain. I was in a Fibromyalgia flare and…an IBS attack to go along with it and as always my trusty friend, chronic sciatica. The Fibromyalgia made me feel like I had a fever all day. My whole body ached and I had very little energy.  The IBS made me weak and nauseated. Lately, I have been getting used to that feeling because I have it most days. But the triple team effect of these three debilitating conditions really made me feel lousy.

I worked a couple of hours and then came home. My daughter and her husband came over for a short visit. I have found that the adrenaline you receive from looking forward to something can give you the strength to do much more than you thought you could accomplish while you are ailing physically. I still felt lousy when they came over but I enjoyed visiting with them.

My sweet husband stopped at two different restaurant’s and picked up our supper. My daughter and son-n-law are picky eaters and they wanted to eat from one certain restaurant and because of my diet restrictions (and I’m I picky eater too)  I wanted another restaurant. My husband accommodated all of us.

After we ate, my daughter wanted to pet one of our cats. We had this cat, Boo Boo when Miranda was still living at home. Miranda knows that Boo has always been very particular about when and how she wants to be petted. I told Miranda that she needed to be in her zone in order to pet her. So we followed the Boo into the bedroom. I told her to lie down on the bed with me and I showed her how to pet Boo Boo the way that she liked it best.

It was good for me to be able to lie down and rest, and it was great to be able to talk to my daughter and connect with her in this way. Even though I felt bad I found the strength to talk to her and we bonded while we talked about my cats, her cat, and just everyday life.

Even though it would have been easier to stay in bed all day that day I know that sometimes I need to push myself to get the most out of life. Granted there are those days that I just need to stay in bed to rest my body so that I can give the most to my family and friends for the days ahead. But there are other days that I need to find my inner strength and give it my all.

My life IS like a box of chocolates…it won’t last forever but I try to make the most out of each piece.

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The storm irrupted after work. I was running late and I gobbled down a sandwich for lunch on my way to work. About an hour later the stomach cramps began. I took some medicine and soon forgot the pain.

Another hour goes by and I am hungry again, very hungry. I started a new medication for the neuropathy in my feet and it helps with the pain, but I stay hungry more often…oh great, now I’m sure to pack on some more unwanted and unneeded pounds…ugh!

To ease the hunger, I gobbled down a protein bar on the way home (what was I thinking…oh yeah, I wasn’t!) and soon felt the cramps and pain again. When I got home the violent storm began!!

I had to rush to the bathroom and I was definitely in an Irritable Bowel Syndrome (IBS) attack. It was very severe. I felt so nauseated and weak I dragged myself to bed. A few minutes later the storm repeated again. This time it made me feel a little better.

You know how you feel when you have a stomach virus? With a virus you need to throw up and after you do, you are weak and nauseated. You know it is going to happen again and it is a terrible feeling. But after the last time, when it is finally all over, you feel a little better, only weak and worn out from the whole experience. That is how I feel all the time. That is how IBS makes me feel. I feel extremely weak, worn and nauseated most of the time and the majority of the time, I don’t even stop and rest, I just keep going.

If I stayed out of work every time I was sick, over the last twenty-three years, I would have had a lot of excessive absenteeism. Yes, I have been dealing with IBS for over twenty years. It is a horrible hand to be dealt. It has caused me to miss out on many social events, makes me feel miserable and makes deciding what to eat a tremendous task.

I have learned over the years that my body is very sensitive, even the tiniest variance can be costly. My diet mostly consists of the same foods over and over, so as not to upset the uncontrollable storms. If I eat too fast, too much or wait to long to eat, the consequences are colossal!

I must avoid spicy foods, fried foods, high fat foods, dairy, red meats and wheat, just to name a few. It limits my choice of foods greatly and it is a constant thought process as what to eat and what to avoid. I am still learning daily what works for me and what doesn’t.

As I deal with this burden, among many others, such as Fibromyalgia, Interstitial Cystitis, Restless Leg Syndrome, Neuropathy, Menopause, etc, etc. I often think “Why me?” But as I lay in bed that night, after the brutal storm had ended, I began to use that time to pray. It was an hour and a half before I felt like getting up to spend some time with my husband before he went to bed. That was a lot of time for prayer!

Of course, my mind would wonder and I was not praying the whole time, but for the most part, I was talking to the creator of the universe!! The time I spent in prayer that night was intimate time with God. That time was invaluable!! And I know that if I were not sick, I would not have spent that much time in prayer that day. So I choose to look at my hardships as a positive. I choose to let the works of God be displayed in me, I choose to be thankful for the raging storms in my life.