My UC Experience (questions involved)

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IHaveUC
New Member


Date Joined Jan 2009
Total Posts : 2
   Posted 1/12/2009 10:25 PM (GMT -6)   
Well, I'd say my story goes back somewhere between 1-2 years ago. I noticed I didn't have any "hard stools" anymore. But since I hated waiting on doctors and definitely didn't want to discuss this problem with them, I just "let it ride" till I had what I see people on this forum refer to as "accidents". One "accident" in particular changed my mind immediatley and sent me to my doctor. I was in school, last period of the day 20 mins of class left, can't use the RR or get water or go in the halls during the last 10 mins of class. There was already too many kids already waiting for the RR (all of them complete BS just wanting to get away from the teacher), so I was forced to try to hold it. Well, I tried and never thought it could happen but I had an accident then and there. I thank god no one noticed as I had to sit there in complete embarrassment knowing that I was unable to control my ass..After the bell rung I acted as I was finishing up work and when everyone was out I unsuspectingly strapped a jacket around my waste and walked to the RR in shame.

A month later, I had a colon oskify (sp. check) which diagnosed me with UC. In the last few months I've been on Prednisone, Asacol, enemas, and now 6MP. None have really made me feel how I used to and the fewest # a day has been 3-4 which I find excessive, but not to what I'm getting most of the time, 6-8 a day. I saw my doctor today and was faced with some more options and they all suck: up to 100mg of 6MP and 12 Asacol a day, try Remacaid, or have surgery to remove my colon. Now I would be all down for the surgery had my doctor told me it would only get me down to a proposterous 5 a day. F that crap. So today we upped the 6MP and we'll see what happens.

This disease is so poorly timed in my life, it really pisses me off. I'm currently finishing up high school, and about to head into college. What bothers me the most? I feel I can't even take a girl out anywhere because I'm afraid I can't make it even a few hours, so I have avoided that and it sucks. Also, and I know I'll get criticism for this but I liked to go out and party, chill, hang with friends. And now that I see 6MP says "don't take with alcohol", I kinda can't go out with my friends anymore (but I have anyways, I just didn't take 6MP when I knew I was going to be drinking). Now I'm no daily drinker but I like to party like kids do on the weekend. I feel like I'm getting most everything I live for taken away from me, and there's no compromise. And also I find that UC is affecting my schoolwork as well, I was on the road to a 75% scholarship all I had left was to retain a 3.0GPA unweighted and now I'm a little under the line, I think it may be because I spend time in class thinking if I'm gonna have an "outbreak" and if so where can I go, will I make it in time, what do I do if I don't? So I find this disease very aggravating as it heavily affecting my life. (such a perfect time)

Now the questions:
How bad is it to drink alcohol on 6MP? I usually stick to mixed drinks Vodka and beer.
Next, I've been told different things on the surgery, if there is anyone my age (17) out there that has had the surgery, how was it and was it worth it? And mainly did you have to use "the bag", how did you deal with that in situations? Anyone ever had the procedure done in 1 visit with no infections (my doctors told me that was the problem with the single surgery)?
What medicine out there doesn't affect you with alcohol?
And lastly people my age, how did UC affect you with women?

Thanks for anyone who took the time to read and may have answers to my questions, I thank you very much and I'm glad there's a community out here.
Jeff- 17- UC 7/08

Post Edited (IHaveUC) : 1/12/2009 9:30:11 PM (GMT-7)


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 1/12/2009 11:17 PM (GMT -6)   

Hi Jeff, my daughter had UC. She reads the forum everyday but doesn't always post. So I'll tell you a bit about her. She was diagnosed with UC at 15-1/2 when she was a sophomore in high school. We thought it was a stomach virus but when that didn't go away after a week or so, she was sent to a GI. She had 3 really big flares. 40-50+ times a day in the bathroom. Each time she was out of school for about 9 weeks. She progressed through all the usual medications. Most helped for awhile but then she would flare again. Her first two flares were in September/October of each school year. In the back of her mind she worried if she would flare the next fall. However this last flare didn't even make until the fall and she flared in the spring. She was on prednisone each time and it did help but she gained alot of weight, had acne, and had moon face (not what a teenage girl wants). She did go into remission towards the end of junior year and even went to her junior prom but she doesn't like to look at the pictures.

She (along with us) decided to have surgery to remove her colon. She had step 1 at the beginning of the summer to allow herself to recuperate and adjust. She had an ostomy until her takedown surgery in November. It took awhile to get used to the ostomy but she did a great job. She saw friends over the summer, lost all her prednisone weight (and a bit more) and got healthy. She started senior year with her ostomy but didn't mind much because she wasn't sick. She took a few weeks off in November to recuperate from the second surgery (much easier recuperation). She wore shirts that covered her ostomy bag (she never really liked to tuck it in to her pants). She participated in gym. She marched in the homecoming parade. Her close friends know she had UC and know she had surgery. Friends who aren't as close know she was sick because she was out for so much. They know she had surgery and most know she had her colon removed. She doesn't advertise her surgery, scar, ostomy when she had it, or her illness, but she also doesn't hide it. It is/was a part of who she is and in some ways, made her much stronger. She has never had any problems with people because of it.

She is so much happier and healthier now. She take no medications at all! She doesn't have to worry about when she is going to flare again, will the medications work, what they are doing to her body. She is planning for college and generally, loving senior year! There is a relaxed look on her face that we haven't seen in years.

She doesn't drink (yet). But she sometimes ate foods that she knew would disagree with her. My son (her older brother) was diagnosed with Crohns. He does drink once in awhile. He knows he shouldn't. He knows drinking sometimes affects his digestive system. He is 20 and has to learn to make his own decisions. It is very tough being a teenager/young adult and having to adjust to an illness. You want to be normal and do what everyone else is doing. Just remember you can still have a good time and not drink (and yes I was once young and did my fair share of drinking).

She had the 2-step surgery (first surgery to remove the colon, create j-pouch, and have a temporary ileostomy). The second surgery reconnected her new j-pouch. She had a full incision (as opposed to laproscopic). She calls it her war wounds or says scars are tattoos with better stories (her dad and brother have tattoos). Her doctor won't do 1-step surgery.

Surgery is not for everyone. It is a decision we discussed as a family, along with her GI and her surgeon. Ultimately we needed to let her make the final decision. For her, it was a great decision and she has no regrets.

I hope you feel better soon.



--Mom of bratcat (17 years old) and nonamejames (19 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Flared Fall 2006, Fall 2007, Spring 2008
Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade
7/3/08-Step 1 j-pouch surgery and no more meds!
11/10/08-Step 2 reconnect!
 
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp


IceIt
New Member


Date Joined Jan 2009
Total Posts : 1
   Posted 1/12/2009 11:25 PM (GMT -6)   
Well, I'm 2 decades older than 17, but I'll give you my take on things.

First, go and talk to your doctor about 6MP. I've no idea what it is, but if it says no alcohol, you better believe it. I take a drug that can cause seizures if I drink alcohol. I'd much prefer to drink 7-up and tell people it was a vodka-7, than end up twitching on the floor of a bar and have an ambulance called.

Surgery, how was it and was it worth it?
I have a unique perspective on this as my first UC flare up was on 11/4, I was hospitalized on 11/15, diagnosed on 11/29 with severe UC, and my only option was surgery to remove my colon on 12/4. Talk about a whirl-wind event. I never had to deal with UC in my life, but when it hit, it hit me hard and fast.

Is the surgery worth it? I'd say yes, but I really didn't have an option. The worst part about the surgery, for me, was the IV. I hate needles. . .HATE them. The best part about the surgery besides "curing" UC was the pain killer fentanyl. Hey, you take the good where you can find it in the hospital!

Mainly did you have to use "the bag"?
Yes, you have no option on this, AFAIK. With the total removal of my colon, they had to give my rectum/anus time to recover. I still have UC in my rectum, so that is to be removed in the next surgery (there are 3 total surgeries for me due to the severity). I won't kid you, I find the bag annoying, but it's only temporary. . .about 6 months total. I have issues with it b/c I can't sleep on my right side or stomach. The ostomy can make noises at any time, and discharge into the bag at any time. However, in 6 months it should be over. Is the bag worth it? Eh. Since I only had UC for 4 weeks, not sure. But without the bag, I'd be dead right now. My suggestion, talk to your Doctor. It's not that bad, honestly, especially if you time the surgeries right, "the bag" shouldn't effect your plans. If the surgeries start, say, at spring break (March), then the second/final surgery would be in June. How am I dealing with the bag? Well, I named my stoma. It's name is Henry, and Henry gets scolded from time to time. . .I find that humor helps a lot for me and it eases the discussion about what is going on in a social setting.

Anyone ever had the procedure done in 1 visit?
I don't even think this is an option. You might be able to get away with only 2 surgeries, colon removal, J-pouch creation, and temporary ileostomy, and the second surgery would be the take-down, but from what I have learned, you must give your system time to recover so a single surgery is out. If you end up with only 2 surgeries, you might be able to get them scheduled so you are done and recovered by the start of your Freshman year. And if all goes really well, you won't need meds any longer. I doubt there would be a single teacher out there who would ruin your college/scholarship chances due to surgeries in your final semester of High School.

As for dealing with dating, I personally would find it too much to get involved with anyone while dealing with all of this. . .might be my age showing. :)

In the end though, after surgeries, you'll have some scars that you will need to create a story about (the truth is boring and the art of a good story teller is embelishment). I've read some guys post that he tells the girls his scars are from running the bulls. . .he got too close and was gored. Your mileage may vary, be creative.

Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 1/13/2009 7:39 AM (GMT -6)   
If I were you I'd deplete all your options before surgery. I guess not all doctors also mention Humria as a final option. So, I'm throwing that out there. But, Remicade is before Humira. I'd kinda say that Remicade is a good option to go because you only have to go every few months, unlike Humira. You have to give yourself shots every 2 weeks. Don't dive into surgery this young until all the options have been used.

Good luck
26 year old, Married, Female.
Diagnosed with UC since March 2007
Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 1/13/2009 8:39 AM (GMT -6)   
The surgery is available in one-step to those who are relatively healthy and not on prednisone. The body heals very quickly so an ostomy, in this scenario, is not needed. However, no surgeon can promise a one-step until you are open on the table. Physiology plays into surgery and until everything can be seen no decisions are made.

There are lots of young people, some as young as 5, who have had jpouch surgery. You have had the disease almost 10 years, you can opt for surgery if you want to. Just remember that surgery is not perfect. You will never return to those days with a healthy colon but you might not remember those anyway. I have never regretted my surgery decision. I love my jpouch; it has given me my life back.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


IHaveUC
New Member


Date Joined Jan 2009
Total Posts : 2
   Posted 1/14/2009 7:44 PM (GMT -6)   
Thank you for all the responses, I'm glad to see this forum so crowded, originally I thought I got infected with a like a 1 in a 1,000 disease. Anyways doctor just upped my 6MP to 100mg a day, I hope this does the trick!

Bennie- I feel for your daughter, that sounds terrible. Hope all is better for her now. (Not to dismay any other's stories!)
Jeff- 17- UC 7/08


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 1/14/2009 8:11 PM (GMT -6)   
At one point, when I thought I may not have insurance coverage (I now have great coverage), I looked into surgery options overseas, i.e. India, and interestingly they told me they ONLY do one step j-pouches for medical tourists. The cost including travel and hotel would have been only $15,000 or so, versus the $60-100,000 your insurance company is charged in the U.S. for a j-pouch. But a one-step is very rare in the U.S.
Pancolitis ~20 years, once had a full med-free 10 year remission,
but flaring/simmering on and off for years, allergic to all 5ASAs
15ish mg pred, 100 mg Imuran TCM
Probiotics (PD, Cust.Probiot., Culturelle, VSL3, etc), DMSO, TSO, hookworm
Turmeric/circumin, boswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade newbie
 
 
 

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