Hi, New, Looking for suggestions of any kind. Pls

[tjohnson2]

Hi. I'm Tisha. I'm a mother, wife and full time college student. I was diagnosed with Crohn's Colitis May 1, 2006. It was discovered after I gave birth to my 1st born 12 weeks premature. Let's just say 05-06 were very bad years. However, My son survived and nearly 5 years later he is a hefty 60lbs and inching closer to 4 feet!

After I diagnosed I was put on Asacol and Prednisone. The steroids was always a taper but by the time I would get to 10mg, my stomach lost its way. On top of things I got pregnant with our 2nd child against doctors wishes. My normal GI doc didn't want to treat me so then I was sent to Yale to see a better trained, lack of better a word, GI doctor. I stayed on Prednisone the entire pregnancy 20mg along with my asacol. I delivered 5 weeks earlier and she is healthy as can be.

After my 2nd, I was put on Remicade. Then Jan 17th I discovered I was pregnant with our 3rd. This was very unexpected to the point I never acknowledged my child until the day she was born. My only full term child. I continued my Remicade. At the one year mark I started having chest pains when they would hook me up. GI doc said my body had built immunity to Remicade and wanted to put me on Humira.

I have been on Humira for a few months now. Prior to this I went into my rebellious stage and stopped all medication. I was diagnosed with depression and was put on medication, then I resumed taking my other meds. I also have RA so my joints swell when my Crohn's is being a bleep...

My RA doctor wants to put me Methotrexate. Just the way he talked about it scared me and I haven't went and got my xray yet. This is a chemotherapy drug! July 3rd I was admitted to the hospital for severe dehydration because of a Crohn's flare. After 5 steroid bags, few insulin shots and 9 IV bags of fluid later...I was released.

It seems like ever since I was diagnosed my doctors keep putting me on these hardcore drugs. I'm so scared cause all I think about are my babies who are only 4, 3 and 2. I've even wrote out my will.

I've ordered cookbooks for people with Crohn's. Waiting on those to get here. I have to find something to help me. I've given up alot for this damn disease and seems I can't win for losing. I'm only 27 years old and I feel like my insides are 100.

Any suggestions, any questions I should ask my doctor, anything...i really want something other than hardcore therapies that is damaging my organs.

Sorry so long. I tend to get carried away.

Thanks for reading.

Tisha

 

[Crohns08]

Hi Tisha, and welcome to the forum!

Crohn's can be scary, but you'll find a wealth of experiences and knowledge here, and great support that you won't find anywhere else.

Have you ever tried LDN? That might be something worth looking into if you're scared about all of the side effects and outcomes of these harder drugs. There's a subforum in the treatment section with tons of information and a few experiences with the drug. Just thought it was something I'd mention to you.

Good luck in your journey with crohn's, and I pray you reach remission soon!

 

[DustyKat]

Hi Tisha and :welcome:

Wow what a busy time you have had and three beautiful children congratulations!!! There are many people here that know what you are going through and the feelings you are experiencing so you are not alone! Browse through the forums Treatment and Food and Diet and any questions just ask away. I know the feeling of being scared about the drugs as it was a decision I had to make for my daughter and it's not easy but in our case it has allowed her to maintain remission and lead a normal life for 4 years now and it is a decision I have not regretted.

I hope you stick around so we can get to know you better. Welcome aboard!

All the best,
Dusty

 

[Dexky]

Hi Tisha and welcome!! Has the humira not offered any relief? I don't know how long it is supposed to take to get fully into your system but it is commonly used for crohns and RA isn't it? Like the others have said, the threads for humira etc. are a good place to see how things are affecting others and ask questions. Good luck Glad you found us!!!

 

[Astra]

Hi Tisha
and welcome

you've got your hands full, that's true!
I don't know the answer, cos you've tried all the big guns, hope humira works for you!
All I can suggest is the low residue diet, this works for me, it gives my bowels a rest, you can find this in the diet section on here.
glad you found us, lots of friends here going thro the same thing!
lotsa luv
Joan xxx

 

[Brindle]

Hi Trish,

So Sorry to hear about all the troubles that you are having. What section of your intestines are affected ? Small, Large, all? I have had Crohn's since 1996. Tried all the different meds, no remission was ever made. I had a Proctocolectomy with perm. ileostomy in Oct of 09 and wish i would have had this done 10 years ago. It improved my situation 95%. I know longer take any medications for Crohn's. I know its not for everyone, but for me it was the answer. It may be something to consider or chat with your Dr about.

Good luck, Hang tough and Don't let Crohn's break your spirit!!!!

 

[ameslouise]

Hi Tisha and welcome!

I understand about being scared of the big gun drugs. I felt the same way. There are a lot of drugs out there to try, some scarier than others, but hopefully you will find one that works that you feel comfortable with. You need to get and stay healthy for those little ones!

Good luck - Amy