Community Forum

To give an introduction on myself I am a 19 year old female with pancolitis, I was diagnosed in March, 2010 after a 7 month battle against what I thought at the time was a mystery virus. Since diagnosis I have received 4 units of blood (2 in March and 2 in late July), resulting in a 4 day hospital stay each time. I have had little to no relief of my symptoms since being diagnosed except for two very brief periods of remission after leaving the hospital. (2 weeks or less in length.)

Recently I discovered after months of trying Mesalamine rectal suspension enemas and Mesalamine Lialda that I am allergic to 5-ASA drugs due to my allergy to aspirin. I also have an allergy to Sulfa so I am unable to even try sulfaslazine. My hospital does not provide Remicade as a treatment option (not that I'd try it, I'm opposed to Remicade due to hair loss factors) and my doctor and I both agreed that any other medical options are too extreme (too many unwanted side-effects); meaning that surgery is my only realistic option.

Which leads me to my current situation; I am on an 8-week taper of prednisone (60mg down to 5mg) to control my current flare. Hopefully in that time I will be able to not only have a consult with my surgeon but set a date for a surgery. I'm not sure just yet what surgery I will have but I am hoping for a J-pouch.

My current questions are to anyone who has had or is close to someone who has had their colon removed:

What should I expect recovery-wise?
What is the failure rate of this surgery (as in, how often do symptoms reoccur?)
How urgent/often is your need to use the bathroom with a J-pouch?
How long were you out of work/school?
What are the main differences with a J-pouch and an ostomy bag?
What are the biggest challenges for living with an ostomy bag?
If you have a J-pouch/ostomy bag, do you wish you had gone with the other option, why?

 Reply posted for JazzyJoker.

I was diagnosed in 1994 at age 9 with UC, I was on and off steroids and always trying different medications. Finally March of 2009 I had a flare that was so bad I was in and out of the hospital for a year and I have had 19 blood transfusions since then. I tried Remicade, Immuran and Humira and none of those worked for me. February of 2010 I was finally admitted and had my colon removed. My surgeon told me I would have had 6 months to live had I not come in when I did. My colon was so diseased it fell apart in my surgeon's hands. So yes I agree to try everything before surgery. I was very scared and stubborn to have my colon removed and that almost killed me. Now I am a 25 year old girl with a temporary ostomy bag and it was the best decision of my life. I lived in pain for so long and didn't realize how much UC had controlled my life. I am very happy to have some what of a normal life back, it's nice to not be in and out of the hospital. I recommend getting a few opinions though. It is a life changing surgery and one you have to be mentally, emotionally and physically ready to make.

 Reply posted for JazzyJoker.

Hi Jazzy!  I was diagnosed with UC at the age of 19.  I'm now 31.  I have never been in remission for this disease.  This year, I also lost so much blood that I have to have 6 pints worth of blood tranfused in my body.  Enough was enough.  I had a full colostmy, and a J pouch built at the same time.  I've had a pouch, or bag, for a little over 2 months.  Let me say that you may think you're ready for the surgery, and physically you may be, but let me warn you, no one told me about the mental affects!!  I was extrememly depressed for a few weeks after my surgery.  I was mad at the world that this had happened to me, I cut off all family and friends, and wanted my colon back!  It was a really hard time.  I've now learned to laugh and joke about it because I finally realized this is temporary.  (I even named my stoma, weird I know)  I also realized  that many people have it much worse than me.  I feel a MILLION times better than I have in a LONG TIME!  I would do the surgery again in a heartbeat!  My reversal will be sometime in November, and don't get me wrong, I can't wait to be "normal" again.  But if I had to keep the pouch forever, I would be ok with that too.

Sorry this was long, but I guess what I'm trying to say is, weigh all your options first.  There maybe meds or a diet or SOMETHING that'll work for you.  I tried EVERYTHING first, and absolutely NOTHING worked for me.  Take your time, and make sure you're not only physically ready for this life altering surgery, but mentally.  If you do decide to do it, then good luck, and remember there are many people here who will answer any question you have!!

 Reply posted for JazzyJoker.

hello i had my colon removed this year and it was a good option for me. i have had uc since i was 19 and i am 35  now never had any major complications till last year. surgery is nothing to take lightly i lost fifty pounds of muscle and was down for close to 9 weeks. i am back to work most days the bag is what you make of it. for me i am very open with it but i do understand how it can effect people. there are a lot of good jokes i use referring to my bag. i am do for reversal soon. i had tried every med and tried some diets but just didn't work for me. the bag has a few draw backs as could leak why you are out so i carry change of clothes and supplies with me in the car, but a lot better than not making it to the bathroom cause you cant hold it. you do have to empty often sometimes but that becomes just as common as looking for a potty when you run in to a store. the short  and sweet difference between the bag and and j-pouch is one is inside and the other is outside on your stomach. the one challenge with the bag has been that jeans so far have been difficult to wear but i have worn  overalls most of my life those work great but do understand they are not most peoples fashion today.so far i am very happy with my choices i would suggest going to a support group or to and here it from the horses mouth good luck in any choice you me.

 Reply posted for JazzyJoker.

I agree that you should wait in surgery and exhaust every possibility before considering it. Ive had crohns for 8 years and about 2 months ago had surgery and now wear a bag at 21 yrs old. I will admit the pain in gone completely and Ive been able to put on weight finally but its alot to get used to. Only my very close friends and family know. Its a little embarrassing for me and every day i think about how i would explain it when i meet a new girl having sex, the beach or anything. Maybe itll get better as time goes on seeing i just got it but idk.

 Reply posted for JazzyJoker.

Jazzy,
As the others have said, don't opt for surgery yet unless it is a real emergency.
Diet can make a huge difference to uc. Read Alan's references on scd and try it just a few days at a time. At the very least it should help reduce your steroid symptoms.

Read as much as you can about scd, low carb and  lectin-free diets before you make any decisions on surgery. I was on 60mg pred before changing my diet and can remember how difficult it was to make decisions. I decided I wouldn't be able to forgive myself if I had surgery before finding out if diet could help and I haven't needed one steroid tablet since then (four years) and  I can control any (rare) threatened flares by being extra strict.

You will need to do this for yourself as few doctors will even acknowledge that diet can help but you will still have the options for stronger medication and surgery if you really need them.
Cyber hugs fom UK

 Reply posted for JazzyJoker.

Gosh - you have been through a lot.  But I do agree with the other posts that maybe it is early following your March diagnosis to consider surgery.  You really, at 19, have a long life ahead of you and you need that colon if you can keep it!

I know the side effects to some of the medications are scary on paper.  I agree with others on here that diet and probiotics are a great way to start.  For many, those changes are enough.  If they don't work, you may need meds. 

For us, my daughter is just 7 - she was diagnosed at 6 - and she is on mercaptopurine (commonly called 6MP) and has been since June 2009.  It is all she takes for Crohn's.  I recognize there are a lot of risks but for us, it has worked well.  No, she hasn't lost any hair, she's not nauseous and she is in medication induced remission.  She is able to eat a healthy balanced diet and is growing normally. 

There is a young lady in our support group who is 19, she was diagnosed at 11.  She follows the SCD diet.  It wasn't enough on its own and she was allergic to Imuran so she had to start Remicaid when she was 15.  But, she has been in medication induced remission since then.  No flares, no unwanted side effects.  Remicaid + the diet have been a great choice for her.   

I say all this NOT to support 6MP, Remicaid or any other medication or diet for every patient.  If I have learned nothing else, I have learned this is not a "one size fits all" illness.  You should know there are paths out there that might work for you before you proceed with the surgery.  Take a little time to explore them if you can. 

All that said, if you feel like surgery is the path you need to take, consider getting a second opinion to confirm.  Regardless of how you proceed, I sure hope you feel better soon! 

Take Care,

Claire's Mom

 Reply posted for JazzyJoker.

It seems like your jumping to surgery rather quickly, which is no work in the park and will leave you changed for life. Some temporary hair loss is nothing in comparison.

Ulcerative colitis is also 90% curable with a fecal transplant. Consider traveling to Europe for treatment.

Learn more here:

http://en.wikipedia.org/wiki/Fecal_bacteriotherapy

Also look into

http://en.wikipedia.org/wiki/Helminthic_therapy

Best of luck. Reply back if any of this info is helpful.