Crohn's Disease Forum » Your Story » New here- diagnosed 28 years ago

12-31-2013, 01:56 PM   #1
Join Date: Dec 2013
New here- diagnosed 28 years ago

Hello all! In 1985, when I was 14, I was finally diagnosed with Crohn's after suffering for several years. I am now 43 and relatively healthy, married to a wonderful man, and a homeschooling mom of 5. Thankful to have found this forum. My introduction will be what I wish I could have heard when I was 14, relieved to finally have a diagnosis, but scared to death to have an incurable disease that I had never heard of.

At age 5 I was healthy and in the 95th percentile for height. I slowly began having sour stomachs and throwing up, probably around age 6 or 8. By age 10 or 12 my mom was worried about me and trying to find answers, but our concerns were blown off. By age 14 I was very sick. About every other day I would have sour stomachs. I wouldn't eat those days, so the next day I would be ok and eat, so the following day I would be sick again. Rinse, repeat. I threw up a lot, but not every day that I was sick. (Diarrhea has never been my issue.) Also at age 14 I was so tiny that I didn't even appear on the height and weight chart. Finally, I was referred to a specialist.

That referral led to a hospital stay. They were mostly concerned with my failure to grow, and we still didn't feel like they were taking my gastro issues seriously. Over the course of that 2 week hospital stay they diagnosed me with CD. The most revealing test was an enteroclysis which showed "irregularity, narrowing, and stricturing of segments of the mid and distal jejunum, as well as of most of the ileum."

They put me on massive doses of prednisone as well as Azulfidine. Lots of fun being 15 years old and completely puffed up on prednisone. Very rough year. However, the prednisone worked wonders with my symptoms. Felt like a miracle drug to me. I was finally able to eat and started growing. Through the year we tapered the prednisone down, and by age 16 I was on minimal amounts and looking fairly normal again. Things went pretty well, and eventually I went off prednisone (and swore I would never go back on).

Things went well until I was about 19 and a sophomore in college. Again, a very rough year. I became so sick that I was ready to brave prednisone again. So back on low doses of prednisone as they tried several different drugs, settling on Imuran. Over the next two years while I was at college I slowly tapered myself off of all meds. Although I don't recommend that anyone do this, it worked for me. My doctor was ok with this when he found out, and we were all glad I was healthy.

That was 1992, and I have never been back on medications again.

In 2001 I decided to find a gastro doctor. My previous doctor had passed away, and I hadn't been to a gastro since about 1993. The new Dr did not seem to believe me at all, and I am fairly certain he thought I had been misdiagnosed. He had never heard of my previous dr (whose primary specialty was Cystic Fibrosis). My impression was that he felt it was impossible to have CD, be off all meds, and lead a relatively healthy, normal life. So we ran the tests, and surprise...he found I had Crohn's Disease. This doctor also told me I was unable to absorb B12, so I got started on B12 shots. Overall, I couldn't stand this doctor and his smug attitude, so I never returned.

In 2002 I had a miscarriage. When diagnosed with CD, they had told me that I might never be able to have children, so this miscarriage devastated me. However, a few months later I became pregnant again...this time with twins. I was considered high risk due to CD, but never had any trouble. My OB told me that his experience with CD is that those who are in remission when they become pregnant remain healthy throughout the pregnancy. The only issue I had was an inability to gain much weight during the pregnancy. When I went in to deliver, I was only 20 pounds over pre-pregnancy weight. But my twin girls were healthy, so it didn't affect them.

In 2004 I tried again with a new gastro. This one believed me, but we chose not to run any tests at that time. He is the one who gathered my first medical records and summarized them, as quoted above.

In 2005 I had my son.

In 2006 I had another miscarriage.

In 2007 I had my 3rd daughter. As with all my pregnancies, I didn't gain too much weight. My OB monitored me very closely, and felt that in spite of my low weight, both the baby and I were fine. As I lay on the table before my scheduled c-section, one of the young nurses or doctors made a comment about how small I was. She speculated that my baby would be 5 pounds. I can remember lying their crying, because she acted as though I didn't eat during the pregnancy (due to vanity, not wanting to gain weight) and as a result was damaging my child. (My OB was not in the room yet, he would have not allowed her to talk this way.) This daughter was 8 pounds, 3 ounces, so I felt vindicated.

In 2008 I quit working as an accountant and became a full time stay at home mom.

In 2009 I had my 4th (and final) daughter.

I found this forum as I searched for a good gastro doctor. We moved from MO to TX 3 years ago, so I can't go to the doctor that I was seeing. At a minimum, I need to get back on B12 shots.

In summary- they speculate that I have had CD since I was about 6-8 years old, so I've been battling in one way or another for 35-37 years. I've been diagnosed for about 28 years. No surgeries. Several drugs, including massive amounts of prednisone. For the past 20 years, no drugs at all and only minor symptoms. During that time I had 5 kiddos in 6 years.

My keys to keep going with minimal pain/symptoms are, (1) listening to my body. Some days I can eat everything...other days, not so much. (2) Not wearing anything tight over my mid-section. (3) Flexibility- I can rest when I need to due to being a homeschooling mom. On those days I am in a lot of pain or vomiting, my kiddos can handle themselves or my husband can stay home from work. (4) Having a great doctor whom I can trust, and who has a similar philosophy to mine.

Sorry this is so long. Not too bad, though, for a summary of the past 35 years.
12-31-2013, 04:08 PM   #2
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***Lisa***'s Avatar
Join Date: Feb 2013
Hello & Welcome to the Forum! Your story ... Up until the time you were a sophomore in college, is very similar to my daughter's. She was diagnosed at age 15 and took Prednisone along with various meds until age 20 at which time she stopped taking all meds. She is not in complete remission but feels better now than she did when she was taking Remicade. It is a personal choice. For some people, taking meds is the right choice for them but for others, taking supplements and only eating what agrees with them works better than any med. She is constantly tweaking her daily regiment.

Wishing you all the best!
12-31-2013, 07:48 PM   #3
Join Date: Dec 2013
Thank you, Lisa! I hope your daughter has continued good health. I agree that no meds is not for everyone, but for me, it was the right decision at the time. Glad to hear that others have had similar success.

Crohn's Disease Forum » Your Story » New here- diagnosed 28 years ago
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