New member here, Crohn's victim in need of advice please!!

Hello. I am 25 years old, female from CA. I have been diagnosed with Crohn's disease a year ago. I have suffered symptoms since I was a teen but was advised to see a Gastro-doc to confirm that it wasn't just IBS. Turns out from my colonoscopy I have moderate Crohn's and IBS. Recent tests have shown constriction of the ileum where the small intestine meet with the large intestine. And not too far from that, a small fistule forming. The constricition would explain the severe cramping I get from flare-up attacks. I have been on Pentasa and currently on entocort and 6-mp (mercaptopurine). Bowel movements range from 2-6 times a day, depending on when I have an attack. I have moments where I feel fine and symptom free, then I can be sick for a week or even just one day!! I hate missing school (college getting an associates deg.) and work! I feel so bad calling out "I'm sick, I feel very ill, I might have to go to the hospital". Thank God I have a job where my friend is the boss and understands.

I have had 2 hospital visits in less than a year. New job for 4 months and have called out 7 days possibly more already. My doctor has given me the option of either doing another colonoscopy and going to the ileum and insert a baloon in the opening, then inject steroids to dilate it. He doesn't know if it's just scar tissue (would make that procedure pointless) or if its the Crohn's attacking that area and it could help it. It's not a long term thing. Could open it up for about a few weeks, a month, or even a year.

Other option is surgery to remove and rettach the section which could help for a longer time. But I have no idea how long recovery is for that or how painful it would be. Does anyone have more of an idea of what would be best? Should I just wait it out and see if the meds could help? If it's just scar tissue, meds won't do a thing. My flare-ups are very inconsistent. I could be healthy for a while, or be very sick soon. I still need to talk to my doctor but he seems confused as much as I am. Maybe get a new doc? lol. But he's very nice and I can tell him a lot without feeling very uncomfortable. Thanks for your help and advice.

Sincerely, Jovae (Crohn's hater) =)

Hello sweetie, your story is all so agonizing familiar!! I think if you can, is go with your doc"s first option. It may well work
for you.

Surgery isn't easy, and like everything else, no guarantees. I've had 2 resections in the past, and if I were to be totally honest
I didn't get the relief I had hoped for.. But, having said that, this disease is as individual as us all. It might work well for you.

On another note. Has your gastro spoken to you about a different medicine, like Humira. I know that a lot of members on here
get a great deal of benefit from this.. Worth asking!!

Best of luck,

I am really happy to see some replies already. Thank you very much for being active forum go-ers =) this helps alot. I am normally a very happy woman in person. No one would expect me to have a chronic illness. I smile at work, laugh and joke quite often. But when it comes to having a bad attack, I feel helpless, depressed, and wanting to just curl up and dissapear. I have a very helpful family and friends that get me through this. I hate when they have to see me that way. Constant pain, vomiting, dehydration...etc. I hope to help as much as I can on here when I become more informative of this disease. My doc's only advice he gave was "surgery should be the last plan" , and some of these comments say the same. So I will focus on saving that for later (knock on wood) if need be. I will ask about Humira as well. My job is only a part-time job so I am covered by my mother's COBRA and man are they giving me hell! AETNA is the worse ever with constant problems with my coverage. Every time I pick up an Rx I have issues with it. They don't help with my condition. Since Crohn's is a pre-existing condition I have no choice. I NEED to be covered!!

I really look forward to any more advice and will take it. It means alot. Has anyone had luck with the balloon procedure? It sounds pointless but those are the only options he gave me for now. He seemed just as confused :/ I am being weened off entocort. It's been over 2 months on it. So just the 6-mp.

THANK YOU!!
-Jovae the brave

Hi Welcome to HW I had a 2 fistula's near the TI was one and had them both removed when I had the TI operated on. The crohn's had narrowed the intestine and would not get better with meds. Thus I had the surgery. Sometimes there comes a time when surgery is necessary. Only your GI or surgeon can tell when it is necessary. I know I was very sick prior to surgery but am doing good now it went much better then I thought it would . lol gail

Firstly,

Welcome to HealingWell! But sorry you needed to find us.
Get the second scope done & any other tests as needed BEFORE surgery. Surgery, even with an Endoscope should be a last resort or a recourse if DRAMATIC progress is possible. Otherwise, like with scar tissue you are wasting time. AND certainly money.

Sincerely,
Matthew

Thank you for the great advice everyone. I appreciate it. And Asenathsjoy ty for the advice on the procedure. I will look into that and talk to my Gastro-doc about it. 3 years is a great amount of time and maybe i'll have some sorta luck with it as well. Fingers crossed! Hope everyone is feeling well :( many thoughts to you all. We will stay strong!

Hey... Welcome to the board... and I hope you get to feeling better soon...


I kind of understand where you're coming from about college and work and all (I'm going on 20 years old, and I'm working on obtaining my Associate's... and then transfer to a university from there)... Have you signed up with the Disability Support Services yet? They'll be a tremendous help should you need time out of college because of the hospital and everything...