Life with Crohns

[chicas1230]

Hello All I am new and I thought I would share my story.

It all started in 1999, the pain, diarrhea, weight loss from fear of eating on account of the pain. I went to my PCP and was referred to a gastrologist and was given a colonoscopy and told I had UC and given a Sulfur medication, which unbeknownst to me I was allergic to. I became deathly ill and broke out in hives all over my body and was prescribed something to counter act the sulfur, but the gastrologist never treated my issue, my gut. I found a new gastrologist because the one i had was horrible , she was in the midst of splitting from her partner doctor and was not focused on me.
So I found the best gastrologist in the world :ycool:, I was deathly ill by the time he started treating me and I had to be admitted in the hospital. I thought i was dying, I was so ill. He bi opted me and did a colonoscopy and diagnosed me with Crohns. I had to go on the horrible prednisone :voodoo: and was prescribed Asacol. I spent 10 days in the hospital and when released I felt great. I did good on the Asacol for a year then I was back in the hospital, this time a blockage in my colon due to inflammation. This time I was put on remicaid and spent 2 weeks in the hospital. I have been in the hospital a total of 7 times for crohns related issues. The remicaid is a double edge sword, and for me the cure is worse than the disease. I could not handle the side effects, hair loss, for us women yeast infections become a part of your daily life on remicaid. I am now back on asacol and maintaining a healthy diet, crohns friendly. I still suffer the effects of crohns, bloating, wet farts which by the way are horrible :stinks:, diarrhea and occasionally pain.
I worked for a Patent & TM firm and one of the attorney's who knew of my condition told me in France are trying to find a cure for crohns. I wish they could find a cure, this is a nasty disease and the sad part is a lot of people do not know what crohns is, I cannot tell you how many people have looked at me puzzled when I said crohns disease, they have no clue what it is.
The sad part of my story is, my 9 year old son suffers with the same thing I do.

thank you for reading and be blessed.

 

[Angrybird]

Hello and welcome to the forum :hug: I am sorry to hear that both you and your son are suffering from this horrible disease, please have a look at the parents forum when you can as I think this will be a benifit to you. From the sounds of it your current treatment is not really working as you a still having problems. Are you in contact with your GI about this? If so what has been mentioned? There are alternatives to the remicade and some meds that you have not said you have been on that are a step lower on the 'nasty' med scale. Have a look at the treatment forum as this will have a lot of info about these. How are things for you son? I am really pleased you have joined us, this is a great place for lots of advice and support. :hang:

 

[mikeyarmo]

Welcome to the forum chicas1230!

It seems like you have had to suffer through some tough situations, especially the allergic reaction. While things are not perfect now, I am glad to hear that you are coping.

I am sorry to hear that your son is also diagnosed with IBD. I know it does not make you feel any better, but in some ways it is probably easier on him to know you also suffer the same disease and that he is not going through this alone. It would likely have been harder on him if there was no one he knew who could relate to what he is going through.

As you have seen a couple of different Gastroenterologists, you might want to consider adding them to the IBD Doctor Reviews section of the forum. I know I would certainly want to see the doctor you describe as being the best in the world .

Hope to see you online again soon!

 

[chicas1230]

Well I guess i cannot post my doctor until I have 5 posts. He is awesome and I consider him my angel, he brought my back from the depths of a severe crohns attack. :dance:

 

[indianhart]

Welcome! And like you I am very new to this forum but find it so helpful and comforting knowing we all suffer and some tips on how we can live with this disease and try and not let it define us. It's hard but I think it can be done. Live in the moment, every moment not in pain is a great moment. Do things we want we we feel good because you just never know when damn Crohns will kick your ass! I'm currently in a flare (hopefully at the tail end), going for a colonscopy on Thursday to see if it has spread to my colon, urgh....but starting to eat again with little to no pain!! Yaaaay! On prednisone and trying to wein off, on pentasa, and imuran. Maybe surgery dr says or maybe stronger medicine.....we will see after colonoscopy...But for today things arent so bad....so take from here strength, hope, and thank god for painless days when we have them!!!

 

[chicas1230]

I pray for your strength and healing through your flare up. My crohns has set up residence in the entire left side of my colon, not fun:ymad:. I live with discomfort, I cannot enjoy food anymore, no sooner than I eat I am in the bathroom, and I am a regular in the place called bathroom, at least 15-20 times a day. I feel like this is my life with Crohns.