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My Story

I have always had a sensitive stomach. But I realized after my second child that it had to be more than that. I went to the ER and Doctor appointments for about a year with stomach pain and and diarrhea that lasted for weeks. I was told i had IBS and given a list of foods to change my diet. In November of 2013 had been very bloated, stomach pain, cramping diarrhea every morning for 3 hrs with cramping tried making a Dr. appointment and couldn't get in for a few weeks. I went to the ER for shortness of breath and rapid heart rate and was sent home. They had me thinking I was crazy. Shortly after I started having pain in perineum went to the ER because of the severity. Had a cat scan and was given a high fiber diet and a referral to a GI guy (my name for a gastroenterologist) Went to my appointment after what felt like for ever explaining all of my symptoms found out I have diverticulosis and was sent in for a colonoscopy the very next day. It was great to be listened to and taken seriously! After 3 years i was going to find out what was going on! After colonoscopy I found out I have severe diverticulosis which is rare for someone who is 27 so i'm told. And collitis. I was given asacol and xifaxan. A month later I was back in the ER with blood in stool dehydration and was hospitalized for a week at Christmas. I was told I had crohn's. I finally really knew what was going on but it was a terrible time in my life. Sitting in the hospital at Christmas with my two children 5 and 3 and my husband at home. I was devastated. My husband was so upset, I remember him crying while wrapping gifts as we talked on the phone. We got through it. We are all better because of it! Although a tough experience it was an eye opener to my husband who must have really thought before i was diagnosed that i was the laziest person on earth. He is so much more helpful and understanding now. I still have many symptoms every day although it has been months since being on medication. I am taking 2-50mg 6-mp , 3-400mg delzicol 3 times a day multi-vitamin, culturelle and 40mg prilosec. I have bloating and mild stomach pain daily no diarrhea and no cramping. Extremely tired and recently my hair started falling out. Joint pain especially knee and shoulders but it varies day to day. I don't think I can be in remission with all of these symptoms but am told because of the IBS and Severe Diverticulosis that I will have symptoms all the time whether i'm flaring or not. I go back to the Doc in June I guess I will see then. Any advice or feed back would be great! Been wanting to put myself out there for awhile. After reading some posts from this site this morning I decided its time!
 
Well comparing your symptoms now with the symptoms you had in November it seems like the meds are at least helping a good deal.

If you have diarrhea with fast heart rate, and shortness of breath you most likely need to make sure to stay hydrated.

Tiredness now could be anemia or low iron, also losing hair could possibly be a sign of low Vitamin D. A simple blood test hopefully in June will answer this part. :)
 
Yes the meds are helping alot! I get blood work done every two weeks to check liver function white blood cell count and anemia. Just got tested for lyme disease waiting on results. I am definitely going to mention the hair loss hopefully its Vitamin D like you say. Thanks for you help :)
 
If it is a side effect of 6 mp, wondering if my GI would change my med? I was told if this didn't work next is biologics.
 
I am on Imuran which is closely related. I don't have any side effects but hair loss so am ok with it. The next meds are biologics which may have a similar effect
 

dave13

Forum Monitor
Welcome CrystalB

I can relate to to wonderful timing of diagnosis.I had a resection three days before Thanksgiving and diagnosed the day after.I got to smell all the wonderful aromas but could not eat a bite...I was allowed a package of saltines.I was very thankful for the saltines.No sarcasm,I really was thankful.

It is great your husband now knows what you are going through and has become supportive.We can't forget it is hard on them too.My wife visited me everyday in the hospital and has been so wonderful.

I hope you do well and keep us informed on how you are doing.

Dave
 
Yes it seems this disease is great at showing up at the best of times. I will keep you informed thanks for your support Dave
 
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