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Crohn's Disease Forum » Your Story » A short reflection on my journey


04-10-2014, 10:39 AM   #1
mcass5809
 
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A short reflection on my journey

Well, this is my first post. I have been reading this forum for quite some time now, but hadn't had the courage to write about my story until today.

I have been so inspired by everyone's honesty, courage, and perseverance dealing with what life has dealt.

I am a husband, a father of two, a teacher, and I used to race triathlon.. until..

My story begins a few years ago when I passed my 4th kidney stone. I had had 2 many years ago and the doctors had suggested that I was just dehydrated. So, I increased my water intake and everything seemed fine for about 8 years. However, in the fall of 2010, I passed a kidney stone which was a surprise honestly. I recovered quickly and thought nothing of it. However, in Feb of 2011, I passed another and that started a downward spiral. While in the ER, they did a CAT scan and discovered that I had numerous stones in both kidneys. I was also administered two shots of morphine because the first shot had no affect. The second definitely worked, but resulted in a decreased heart rate, which was a little alarming every time the beeper would go off because things were getting too slow. It was interesting trying to comfort my children who there with me as they were scared as well.

After that incident, the cascading effect set in. I was referred to a Urologist and he examined me and said, I was fine. He said, my stones were nothing to worry about and that I should drink more water. He also indicated that there were much worse cases out there so I should just enjoy my life.

After, this I started feeling really poor every time I ate. I had terrible nausea, my digestion was in shambles, and the pain in my stomach was excruciating particularly in my lower right quadrant. I wasn't sure what was going on, so I went to see my primary doctor and he did an exam, ran some blood tests, etc. He decided I was positive for Celiac's disease and indicated I should stop eating gluten. Now, keep in mind this was without any real confirmation. Just his eye ball analysis. He did eventually call for the IGA test (which was at my request) and that came back positive. He was please with himself, so he referred me to my first GI doc.

As I waited for my appointment, I stopped eating gluten and that did help, although being new to it all, I was mostly hungry all the time. I didn't know what I could eat, and I really missed pastries, bread, rolls, etc. When I got to my appointment, the doc wanted to confirm Celiac's so he put me back on gluten for 3 months to see if my body would create some damage before doing a colonoscopy and endoscopy. That was tough. I was tired, I felt horrible. It was a love/hate scenario as I was so happy to be able to eat normal food again.. however, it made me so sick. It wasn't as much fun as the days passed. By the end, I was pretty tired of normal food. I guess negative reinforcement will do that to you.

Well, the big day finally came. My first colonoscopy. My older friends kept telling me, it's the prep that's the worst. Yes, they were correct. I remember trying to play legos with my son and having to excuse myself every 10 minutes or so to head to the rest room. However, the procedure came and went and the GI doc said I was "fine". Case closed in his mind.

It also about this time, that the fatigue arrived en mass. I had burning in my muscles. Trying to climb stairs in the morning was a chore. I have always had arthritis in my hands and occasionally, in my feet, and those were flaring as well. It was no longer just the swelling in my fingers, it was going into my whole hand. As a teacher, it was a little challenging writing on the board when I couldn't open and close my hand. I just sort of grabbed my pen like a child and would draw the best that I could.

I tried to exercise and it was futile. Just getting up in the morning was a painful. The best part though was when I went to see my GI doc for a follow up, I had to wait over an hour (I was the first one in the office that day) and I could hear his PA and he through the wall talking about their weekend, etc. and then the PA finally came in and said I am so sorry for taking so long, we were just really backed up this morning. I wasn't really in the mood. The GI guy didn't even come talk to me. He sent in his PA who couldn't answer any of my questions. Didn't really have a follow up except to say, everything looked fine. You are fine.

I cannot tell you how many times I heard "But you look fine." "You look healthy". Blah..

So, off I went with no answers, and still feeling pretty bad. I went back on the gluten free/dairy free diet and even started doing the SCD diet. That's a tough one to get into, but I think it's just moving from a regular diet with so many options to such a restrictive diet. It's tough to conceptualize and accept. I was willing to try anything though. It was about this time that I started seeing a acupuncturist as well. He said he could help me with my kidney stones so I was open to that. He did help and I was thankful.

I also decided to visit with an allergist to see if that might shed some light on things. My allergist was great. She tested me using the regular histamine response and found I was allergic to a few things, but also sent me in for a blood test to see what other foods I was allergic too. I was able to find out that I did have an intolerance to wheat and wheat products so gluten intolerance was most likely something in the cards. She was great though. She would call and check up on me. She was really baffled as to what was going on and really wanted to help.

As the months went on, the fatigue got worse. My body weight was dropping. I had lost around 20 lbs by now and was sleeping when I wasn't teaching class. I would teach, come home and sleep. I spent so much time on the couch it became my second home. I would sleep for 12+ hours a night and then get up sleep some more.

By Sept, I had a friend refer me to a new GI doc in St. Louis so I went there for testing. He was a really nice guy, and he had an intern that was really good. I thought maybe they would do a battery of tests, but he prescribed to "the simplest answer is probably the right answer" philosophy. So, he tested me for Celiacs using the genetic testing and determined that I didn't even have the genes to have Celiacs. So, the first blood test was a false positive. However, he thought maybe I was depressed. So, he gave me a prescription for an anti-depressant. Talk about making you feel good about yourself.

By Christmas, I was sleeping non-stop. My stomach hurt all the time. I didn't eat much at all. I had lost around 30 lbs by then and I don't remember Christmas at all. I know we visited family, but I just slept. I was bone tired. It hurt to open my eyes.

Finally, I had a friend who knew someone at the Mayo Clinic in Rochester. So, I was able to get an appointment there in January of 2012. I met with a doctor there. She was excellent from the first time I met her. She didn't minimize my symptoms. She wanted to figure out what was going on with me. So, she ran me through tests. I had MRI's, Bone density tests, CAT scans, blood tests, urine tests, etc. It was a full week of intensive checking and some made me even sicker. However, she was able to put together all my symptoms and come up with a hypothesis, which she confirmed after another colonoscopy. I had Crohn's disease in the Ileum. She said that the combination of the canker sores, the kidney stones, the arthritis, the pain in my lower right hand side of my stomach, and fatigue made her guess at Crohn's but she had to be sure.

Diagnosis in hand, I thought things are on the up and up. I was put on Pentasa and Entocort because she thought it was pretty mild. However, my symptoms were still fairly significant. So, she put me on Azathiorprine as well as my first round of Prednisone. I felt amazing on the steroids. All my aches and pains were gone. Magically. I could exercise again. I could ride my bike. It was fantastic.

Then, the taper began and that was less fun. Things started to hurt again. However, I didn't want to be beholden to the steroids. So, I came down.

After a while, as my symptoms continued, she suggested I might have a hyper-visceral response. She was never condescending about it though. It was so refreshing and she never said, "But you look fine.".

So, after all of that, I wish I could say things are amazingly better. Some things are better for sure. My arthritis has improved dramatically. However, I still have bouts of digestive distress where I have to run to the bathroom multiple times a day. I also oscillate between that and not going at all. I do still battle fatigue, but not as much as before though. Symptoms come and go and some days are just bad days. The thing I like about this forum is that every one knows that some days are just bad days.

I know I won't go back to be a triathlete again. I have definitely accepted that fact. I am happy to be able to ride with my son on short rides.

I was asked to find a local GI doc and a primary so I could have my blood drawn and have a local resource. However, I just haven't had good luck to be honest. I have seen 3 different GI docs. They all say, "but you look fine.". One GI doc even decided unilaterally to decrease my dosage of Azathioprine just to see what would happen. That resulted in a flare requiring Prednisone to straighten things out. I have been to 4 different primary docs most of whom know little or nothing about Crohn's. The most recent one wanted me to take Ibuprofen for my headaches.. however, I suggested that NSIDS were not on the table because of Crohn's and he said "Oh yeah.. that's right.. " so he prescribed Oxycotin instead. Who does that? A narcotic for a headache.

Anyway, local docs are difficult, but I still have good care at the Mayo, and I go back there at least once a year for a check up.

Am I where I want to be? It's a work in progress.
So far, here's what I know:
  • I have Crohn's Disease. I have accepted the fact that I have a long-term illness.
  • I have a gluten and dairy intolerance.
  • I cannot eat food with too much oxalate as that will result in more kidney stones.
  • I have issues with fatigue which requires me to pace myself. One doctor suggested Fibromyalgia, but that has not been confirmed.
  • I have chronic headaches - diagnosis still unclear. Most recent doc ordered the wrong MRI test so.. no new information there.
  • I struggle with nausea, D, C, and general pain in my stomach almost daily.
  • I take my medications faithfully including a number of herbs from my acupuncturist, a daily vitamin and a Vitamin D supplement.
  • I have a wonderful family especially my wife who takes care of me. I couldn't ask for a better life partner.
  • I struggle with loneliness at times, feelings of loss, and wishing things were different.
  • I struggle with feeling guilty because I know there are so many people that have it much worse than me. So, what do I have to complain about?
  • I will continue to get up every day and do the best that I can with what I have been given.

Thank you for this forum. I wish the best for all of you.
04-10-2014, 11:24 AM   #2
valleysangel92
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Hello, welcome to the forum, it sounds like you have been on quite a ride!

Firstly I want to let you know that you aren't alone, I know this is tough, and sometimes things can get on top of all of us, but we are all here for you, and we will do all we can to support you.

I can totally understand the lack of decent doctors, my GP practice has about 10 -12 doctors, only around 5/6 of these seem to be consistently good, the others are either never there, have selective hearing, or just shouldn't be doctors at all really. I have 2 gis , one can't make his mind up if I should or shouldn't be on treatment, the other sees me so infrequently that when other doctors try to ask him to see me in the hospital, he doesn't even register that he's actually supposed to be my consultant and he often sends someone else instead.

I'm glad you've managed to accept your new limitations, this isn't easy and can be a real mental battle.

Fatigue is a common occurrence with crohns, your body is so busy fighting to keep healthy that it just doesn't have the energy to do much else.

For nausea, you may want to try ginger, if you can tolerate it , and peppermint can also be good, especially if you have bloating too.

Pain wise , simple painkillers are absolutely fine, as long as you stay away from NSAIDS as you correctly said. If these aren't helping enough, you can talk to your doctors about what other options are available to you. Also, many of us here find that using heat helps them when they have pain, so something like a hot bath or hot water bottle might be of use to you.

It's perfectly natural to feel isolated/lonely and like you've lost something. Some people talk about accepting chronic illness as being like a grieving process, you grieve for the life you would of had without the condition. But you can live a full, happy life with crohns, provided it is well looked after. As for feeling alone, that's also normal and nothing to be ashamed of, it can be very isolating, no matter how understanding loved ones are, only those who have been in the same position can really understand what it is that you're dealing with and how it's affecting you. I hope you will find speaking to others here helpful in that respect.

You dont have anything to feel guilty about, everyone living with an illness deserves support and sympathy. It is never easy , and we realise that here. You have every right to be here and to ask for help with anything that is troubling you.
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Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
04-10-2014, 05:48 PM   #3
LindaS
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Welcome to the forum. For many of us, it was a long time before we got our diagnosis. It took over a year and 3 bowel obstructions for me before my mother (I was 18 at the time) demanded the doctor do a colonoscopy.

It can take a while to find just the right combination of meds that help your Crohn's with the least amount of side effects. The headaches can be the result of dehydration, or a side effect from one of your medications, or both. I am on mercaptopurine, which is almost the same as Azathiorprine, and I get headaches from it if I don't make sure to drink a lot of water.

And don't give up all hope of ever doing a triathlon again. While I can't say you definitely will, I also can't say you definitely won't.
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04-10-2014, 07:17 PM   #4
Tuff
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Hello, and welcome. I'm sorry you've had such a hard time.
This forum is great for getting information, or venting away if it's been one of those days.
Have you had your iron and vitamin levels checked? Many of us are low on vitamins and minerals because of D, or poor absorption due to inflammation or scar tissue.
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Stelara, Warfarin, calcium, Vitamins B12, D.
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Pulmonary Embolism, DVT's, osteopenia, Peripheral neuropathy.
04-13-2014, 02:12 AM   #5
ezgoindude
 
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hello mcass5809!

First I can't thank you enough in telling your story, hearing how every learning experience can be so traumatic and so different helps calm me down in what I'm dealing with.
(been undiagnosed for 6 months, still trying to figure this one out...)

I did have a question though, did your MRI or CAT scans provide any detail into what was going on??

I've already done a endoscopy and colonoscopy with biopsies that came back normal (duodenum appeared flat).... the doctor is spending all his energy that this is a food allergy or celiac, but I get occasional burning with weird looking stools and I want to check the entire intestine...
04-13-2014, 09:48 AM   #6
Susan2
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Hi and to the Forum.

Many of us went, or are still going, through years of trying to get a diagnosis and so understand what you are going through. I was filled up with many and various drugs, none of which did anything to relieve my symptoms and which left me feeling dopey all the time. Eventually, I was put in hospital to have what my GI thought was an abscess (really a fistula) lanced and was very fortunate to have it done by a young surgeon who had just come back from a Crohn's conference in Chicago. He was certain that he recognised what was wrong with me and ordered lots of tests to confirm it. So it was really just luck!

I agree that hot baths might help with the joint and limb pain. Although there isn't, from what I can read, any proof that magnesium can be taken in through the skin, many people find relief from putting Epsom salts in the bath. I take magnesium tablets because I find that it helps with "restless legs".

As someone else said, don't give up on the triathlons. I had a proctocolectomy 14 years ago and am now able to do all sorts of things that I would never have believed possible. I have been snorkeling in the Galapagos and on safari in Botswana, ridden camels and slept in a goat skin tent in the sand dunes of Morocco, bathed in onsen (hot spring baths) in ryoken in Japan...

I know that it is hard to keep positive when life is a constant struggle but you can always come here and vent. We'll understand!
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Crohn's Disease - symptoms since c1955, diagnosed early 1970s. On Prednisolone until...
Total Proctocolectomy in 2000.
Ileostomy that behaves most of the time
Currently on no medications, but under constant gaze of very caring GP, with annual blood and other tests.
04-13-2014, 12:43 PM   #7
happy
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mcass5809, Wow what a story! Welcome to the forum. Because you have had issues with changes in your diet and food sensitivities, I am wondering if some of the issues with fatigue could be from malnutrition. This certainly happened to me. If you search the Wiki on the forum and search posts by forum co-founder, David, you will see lots of info about iron, B12 and other vitamin levels. It has been my experience that the person with the illness must insist on having these blood levels drawn and then monitored. Then you may need supplements for awhile. Doctors often don't think about this.

When my iron levels are low normal, I will have excessive fatigue, wooziness and difficulty getting up the stairs. It took me over a year of being on my new diet of foods that I knew were safe for me to eat (through a liquid, elemental diet followed by a full elimination diet) for me to cease being malnourished. It has taken far longer for me to recover than I would ever have anticipated. Seeking out a dietician with knowledge of celiac disease, gluten sensitivity and crohns disease is a good idea as well, as they could help to make sure that you are eating a healthy well-balanced diet that you can tolerate.

You also want to make sure that they are monitoring your inflammation levels with blood tests and stool tests to see if your medications are effective in keeping it down.

Don't accept your current state as being acceptable-- yes, unfortunately sometimes others are worse off, but your illness has greatly affected your life and you have every right to become as healthy as possible. And you should be able to count on your health professionals to help you get there.
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