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

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Jovae2k
New Member


Date Joined Apr 2008
Total Posts : 3
   Posted 4/24/2008 3:38 PM (GMT -7)   
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) =)

Lady G
Regular Member


Date Joined Sep 2006
Total Posts : 321
   Posted 4/24/2008 4:11 PM (GMT -7)   
between looking and seeing to get an idea of whats going on or just going straight for surgery I would obviously let them do the scope to get a further idea of what they are dealing with before they start taking out body parts which might not even be needed....at one point I was having a severe flare and NOTHING was stopping it and they were talking surgery to remove the piece they figured was bugging me...turns out it was something completely different and if I had surgery I would of lost parts and wasted time for nothing at all, so the testing first I would say is always the best option--best to know exactly what is going on (if they can find it). As for surgeries and what to expect I can't help you there, but there are many others who can and I know they will post.

Welcome to the board as well. You'll find its a great place for info and support.
27 year old, married. Diagnosed with Crohns at 17, suspected of having for at least a year or so before that.  Alot of Crohns in my family history.  No surgeries yet. Imuran treatment with Prednisone tapering at moment.  Possible Fistula.


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 4/24/2008 4:35 PM (GMT -7)   
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,
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with pancreatitis

Laughter is the brush that sweeps the cobwebs from our hearts


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 4/24/2008 4:36 PM (GMT -7)   
Welcome Jovae2k!

I'm glad you found this Forum. There are great people here who can share their expereiences with you. I'm sure others will respond too who have way too much experience with similar problems.

Take care!

Jovae2k
New Member


Date Joined Apr 2008
Total Posts : 3
   Posted 4/24/2008 5:24 PM (GMT -7)   
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

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 4/24/2008 6:08 PM (GMT -7)   
Hi Jovae!! Just wanted to welcome you to the forum. I'm new to Crohn's (dx'd last week) but have been an active member of Healing Well for years on another forum.

I'm sorry I don't have anything to add by way of suggestions . . . but the advice given above sounds like a plan!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Crohns, Diverticulosis, Sjogrens

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gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 4/24/2008 6:41 PM (GMT -7)   
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

dustspeck
Veteran Member


Date Joined Sep 2007
Total Posts : 565
   Posted 4/25/2008 5:50 AM (GMT -7)   
hello and welcome :) i am kind of in the same predicament as you. i have narrowing in my terminal ileum due to scarring. bascially i am stuck on this stupid low residue diet to make sure hard foods don't cause a blockage. i am sure your gi told you the same thing? anyways, i am on my fourth med and as of right now we are not planning on surgery anytime soon. i have been taking 6mp since late december and i have noticed improvements with the pain. the d, well that's another story. it's not uncommon for me to go about 10 times a day. which, i guess is better than my like, 15+ times a day so there is a bit of improvement there too i suppose! also, i have the good weeks and bad weeks. i will go 2 weeks where i take percocet everyday then a few weeks where i have hardly any pain at all. my gi is hoping as i go along, taking the 6mp that those good weeks will turn into good months.

good luck to you and take care!
.: stephanie :.
32 y/o female diagnosed 8/8/7 with crohn's of the terminal ileum w/ stricture/scarring
meddies: 6mp, percocet, trazodone, ativan, iron, calcium, folic acid & some other vits


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 4/25/2008 12:28 PM (GMT -7)   
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

Asenathsjoy
New Member


Date Joined Apr 2008
Total Posts : 7
   Posted 4/25/2008 2:07 PM (GMT -7)   
Hello,

I am new to this forum, but not to Crohn's disease. I have been living with it since the early 1990's. I did have the balloon procedure a few years ago. It staved off surgery for 3 years so that was a good thing in my estimation. I found this forum (and your post) looking for info on Crohn's disease and diet. I have taken away all wheat/gluten in the last 24 hours and am seeing amazing improvement from the flare up I was having. I already stay away from dairy all together except for aged cheeses (naturally aged cheddar). So I guess my only advice (being new myself) is watch your diet carefully. It is a very real key to feeling better or feeling worse. I had a chiropractor/kineseologist tell me about the no dairy/no wheat for anyone with any type of IBD. I think I am onto something with this and wanted to share it with you. Also, stay away from sugars. They seem to feed the disease and make it worse. Hope this helps!

cool

Jovae2k
New Member


Date Joined Apr 2008
Total Posts : 3
   Posted 4/25/2008 4:10 PM (GMT -7)   
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!

Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 4/26/2008 8:27 AM (GMT -7)   
You are quite welcome. I hope you feel better soon!

Matthew

Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 4/27/2008 1:22 PM (GMT -7)   
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...
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.

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