My story...and depression with recent diagnosis

[HeadBangingBabe]

My name is Laura and I'm 24 years old. I was diagnosed with IBS when I was 20 years old, 6 months after the birth of my son. I knew I always had a sensitive stomach, and the IBS diagnosis was a relief. I was put on various pills to help with pain, and was off of them within a year.

In 2011, I gained quite a bit of weight. I associated it with the stresses of working 2 jobs, losing my house months prior and moving in with my parents, getting engaged/planning a wedding, and the feelings of acceptance I had to face with getting my son diagnosed with Autism. I had too much going on.

In 2012, I made the decision to eat better. Fruits, veggies, whole grains, lots of protein. I've lost nearly 30 lbs.! They were almost unable to alter my wedding dress because of how much I had lost. The feeling was good.

I had known for quite some time that I needed another colonoscopy. The hemorrhoid I've had since I was 19 was too painful and my constant trips to the bathroom were not making it any better. With one full-time and one part-time job, the upcoming wedding, and getting my son the proper diagnosis and therapies, I put my health on the back burner (as many of us parents do! WHY DO WE DO THAT?!). I quit both of my jobs in April, had my wedding in May, and started loading up on doctors' appointments for my son...and myself (finally).

What I thought would be an exploratory colonoscopy with my hemorrhoidectomy and polypectomy (which they discovered in office in July 2012), turned out to become my diagnosis of Crohn's disease (August 2012). It came as a shock. They did not remove my growths because the flare up is too bad right now and urged me to immediately start taking medications.

The Asacol HD, 2 800 mg/3 times daily made me sicker than ever. No energy. Constant diarrhea. Loss of appetite and I stayed bloated. I had to stop wearing jeans! I stopped taking it.

I have now been put on Pentasa, 2 500mg/3 times daily, 3 3mg budesonide/once daily, and an antacid/3 times daily. I'm introducing the Pentasa one pill/3 times daily to get my system used to the medication.

My WEIGHT: I gained 8 lbs in the month of August. I have lost 5 lbs (if not more by now) in ONE WEEK. I cannot eat. When I do, it's violent. Diarrhea and vomiting...and I fear that I can't do this for much longer.

I really, desperately, need this forum. I will be reading others' stories as well as posting for advice on my loss of appetite and new-found fear of food. I had planned on returning to school for culinary arts...and now I'm afraid of food.

Long story short...this sucks! I hate this! I super hate this! I'm glad I found this site and really hope it will do a lot for my spirits. I'm barely functioning at this point and need some advice and motivation to keep fighting this.

Thanks for reading!


--Laura

 

[Angrybird]

Hello Laura and welcome to the forum, I am sorry to hear you are feeling so poorly at the moment

Just to comfirm how long have you been in the current meds? How closely are you being monitored by your GI doc? I am wondering if it might be worth asking them about enteral nutrition - this is a liquid only diet but has been shown to really help with calming the tum down whilst still getting the required calories and nutrients into the body. For further info about this do check out our diet and sups forum.

I know it seems that there is no end in sight but we the right treatment regime it is possible to feel well again. The key is to get as educated as you can about the disease and don't hesitate to ask your doc to clarify and explain further anything you are not sure on or happy about.

I will be keepng fingers crossed you can be feeling much improved soon, pld keep us updated on how you are doing.

AB
xx

 

[HeadBangingBabe]

I just started introducing the Pentasa yesterday. I know I need to give it time to start working. I'm seeing my GI every six weeks, as long as there is not a problem. I'm going to look into that diet! I've been experiencing difficulties with textures lately and that might be easier for me to handle. Thank you!

 

[maria]

I'm very sorry. When I was having my flares I noticed gluten made me worse. Fruits and veggies was like asking for trouble. Even smelling them made my stomach rumble and tumble. When I had my flares I would light candles in the bathroom run some water sit on the toilet shut the lights out and be as calm as I could. I would open my rectum and just relax. That made me feel so much better. If your taking vitamins I would try gummys or gluten free ones while having flares.. WElll it help me just an idea. I hope you get better

 

[maria]

In fact I'm doing the bathroom thing right now

 

[HeadBangingBabe]

Thank you! Yes, I'm terrified of fruits and veggies right now. Haven't tried to eat any lately, but that makes me feel gross, too, like I'm not getting what I need. I have no idea if my supplements are gluten free. I'll look into it. I've been checking the soups I eat and have gotten some that are gluten free, and actually, I ate a bowl last night without having to spend the rest of the night in the bathroom! You might be on to something there. Thank you guys so much!

 

[CarolynLucille]

Another thing that you might want to check out is a book called Breaking the Vicious Cycle: Intestinal health through diet by elaine gotschall. It has been absolutely one of the best things that I have found to help. It's alot of work but honestly helps so much. I hope you will consider it. It would also be helpful with your son and his autism!