Daughter with UC may need surgery

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Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 550
   Posted 3/27/2008 12:08 AM (GMT -6)   
Hi. I usually post on the UC forum. My daughter is flaring again. She flared and was diagnosed with UC in Sept. 2006. Prednisone, asacol, and enemas got her into remission. Flared again Sept 2007. Prednisone took forever to help (but gave her all the side effects). Started on 6-mp. Started flaring again this past weekend. We saw her GI today who wants to do another colonoscopy on her next week. He talked about started Remicade (we are waiting on her 6-mp test results but he thinks she is rejected it). He is concerned because there were signs of dysplasia back in October when he did the last colonoscopy. His concern is that if it looks like there is more dysplasia, Remicade would just be a temporary treatment and surgery would probably be a strong factor in the near future. No decisions are being made yet.
 
So, assuming the GI suggests seeing a surgeon, what is the next step we should take? We know a little about the different types of surgery but not too much. My daughter is going to be 17 next month. I guess I am looking for guidance and suggestions. Her health now and in the future is most important but what about the "other" questions.  How will she adjust as a teenager? Will she be able to have kids? What's it like starting to date going through this? How long will she be recovering (she is a junior in high school)? She missed almost 9 weeks of school the last 2 times she flared. What will it be like if she has surgery?
 
I am sorry if I am rambling on a bit. This whole disease is overwhelming at times (especially when she flares). Thanks so much for listening and answering if you can.
--Mom of bratcat (16 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 3 pills/3Xday, 2 tabs 6-mp/1.5 tabs 6-mp every other day
 
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone.


lp
Regular Member


Date Joined Nov 2007
Total Posts : 29
   Posted 3/27/2008 6:08 AM (GMT -6)   
Hi Bennie. I had surgery when I was 16. (I am now 55). So my perspective is based on nearly 40 years of experience.

Being a teenager can really suck, but being a sick teenager and missing school and unable to focus much except on your disease (and its impact) is much, much worse. I remember adjusting very quickly - my family didn't make having the surgery into some major catastrophe and I was so darn glad to finally be able to have my life back that wearing a pouch was no big deal. I don't know your daughter, can't say how she'll adjust, but she'll probably be alert for cues from you and close friends/family. There are many great resources available now and there are better pouching systems now than when were available in the 60's.

Recovery from surgery depends on the individual but being younger helps. Not having a diseased colon makes a huge difference once you have healed and learned to manage the ostomy or j pouch. I have a permanent ileostomy as a result of UC (that was the only option then).

Will she have kids? Can't say if she will, but I have 2. I was an older mom because my husband and I were having too much fun to have kids :-) Dating and romance...sure! I have never perceived being an ostomate as being a big tragedy or handicapping in any way. I have never used it to gain pity or special favors (lived in a dorm with roommates! ) Never thought I couldn't try something because of an ostomy (backpacked, skied, scuba) Rather, it's allowed me to do whatever I want. Managing an ostomy has become very automatic for me. Its also made me a good problem solver and able to adapt to new situations.

Dating and romance has a lot to do with trust (in my opinion). You can't have a good relationship without good communication, respect and trust. Having an ostomy made no difference in establishing friendships ...but in retrospect I was more discriminating and cautious when it came to deeper relationships. As the mother of a 20 year old daughter I now see that as a good thing :-)

Its great that you are seeking information. Let her know what resources are available and how to access them (don't nag) and encourage her to be independent (while providing the support she'll need when things are difficult). Its hard to parent a teenager - and it can be difficult for parents to adjust when the kid who has been so desperately ill is finally well -and you need to learn new parenting skills. My parents never could adjust and to this day my 85 year old mother still sees me as being sick and dependent. I understand why and accept that that is their perception even though it is not the reality.

This is not to say that life hasn't been rocky, that having an ileostomy has never been embarrassing or problematic. At at the time I had a problem I know I felt anger or frustration at the situation. I know I felt at times that life was unfair and I had resentment and anger. But now having the luxury of being able to look back 40 years (and to look forward towards many many more years) I wouldn't change what I went through because I like who I am now. And if I hadn't had the surgery I would be someone very different, if I was even alive.

I know that people with ostomies may have different problems. But not everyone does. I really haven't had any issues and I am very healthy.

Best wishes to you and to your daughter. If she has the surgery, it may offer her something that having chronic UC doesn't provide: hope that life will get better. Help her to accept and to appreciate her choice to improve her quality of life. Let her know it can be the beginning of everything.
:-)
UC diagnosed 1964
Ileostomy 1969


Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1243
   Posted 3/27/2008 6:44 AM (GMT -6)   
I've had my ileostomy due to UC since I was 10 years old - I'm 41 now :) My surgery was due to dysplasia too (and the fact that all my meds were delaying puberty).

How will she adjust as a teenager?

That's hard to say because everyone's different. Whether she looks upon surgery as being a positive in her life is up to her. I would say that probably right now she's probably unable to go out a lot with friends etc and after surgery, that will change for her as she won't be sick all the time and have to look for the nearest loo, so that will be a positive change for her. Don't treat her like an invalid after surgery, let her change her own bag (I was doing it at 10 years of age by myself so it's not that hard :) ), and don't let her bag control her or your life - she controls it!

I will say that my parents' biggest worry was that one day I would turn around and say to them 'why did you let them do this to me?'. I never have - I've never regretted having my ostomy surgery - it gave me my life back!


Will she be able to have kids?

I know many ostomates who have gotten married and had kids. An ostomy for stool (ie ileostomy and colostomy), will not stop someone from having kids since we don't use those organs for childbearing anyway, although the disease that caused the ostomy in the first place might.

What's it like starting to date going through this?

I've only ever had one guy reject me cos of my ostomy - but that was his loss. Most guys are just glad that their partner is alive and well and able to be with them. Sure, it can be stressful telling them about it, but mostly, the worry is more on the part of the ostomate wondering how someone will accept it - most people accept it just fine. Most times I tell the guy, they are usually amazed at first that they couldn't tell then I let them ask questions and answer the questions as honestly as I can. The questions are usually along the lines of 'do I have to be careful, can I hurt it?', or 'does it stop you from doing anything?' etc (the answer to both these questions is 'no' by the way :)

Nowhere in personal ads have I ever seen 'must be tidy, non-smoker and poop via rectum and anus'. How you poop is simply not a criteria most people base a relationship on - and if they do, then I'm sure your daughter won't want someone that shallow anyway.

How long will she be recovering (she is a junior in high school)? She missed almost 9 weeks of school the last 2 times she flared. What will it be like if she has surgery?

Usually people are able to go back to work/school 6 - 8 weeks after surgery. The younger you are, the quicker you heal generally - I was back swimming in our pool 4 weeks after my surgery.


With UC, she has the option of either having:

a) A permanent ileostomy where she will need to wear a bag full time.

b) J Pouch surgery (usually entailing 2 or 3 ops, sometimes it can be done in one step though but it's not the norm). It's a surgery where she will eventually end up not having to wear a bag, the pouch is internal made from her ileum and she poops via her anus. She will need to wear a bag after steps 1 and 2 though.

c) Kock's Pouch or BCIR (Barnett's Continent Internal Reservoir). This is where she has a tiny stoma (doesn't need to wear a bag) and just catheterises it every so often. The BIG drawback of the BCIR esp is that it's only done in certain hospitals and if anything needs revising, etc she will have to travel back to that hospital since local doctors won't touch it.

Hope this helps :)
I have had an ileostomy for 32 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 3/27/2008 7:27 AM (GMT -6)   
Bennie,

I suggest you visit www.j-pouch.org With over 6000 members on that site you can gain valuable information on the jpouch, permanent ostomy, and the kpouch. Lots of parents with kids who have had surgery as well as teens visit regularly. Having had surgery myself I can say with confidence that your daughter will regain her health and lead a very active and full life post surgery.

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


Lew1201
Regular Member


Date Joined Mar 2007
Total Posts : 111
   Posted 3/27/2008 9:45 AM (GMT -6)   
Bennie,
 
I understand your pain completely. I have a son who was diagnosed with UC in March '06 at 16.  He is currently a senior and we have done Asacol, Rowasa, 6MP, Prednisone, & Remicade.  He was doing great for a while with the Remicade and then we are guessing he stressed out about some college scholarship interviews and is currently in a flare.  The doctor put him on 40 mg of Prednisone which isn't doing much.  We are waiting to see if he can have another Remicade infusion.  He is doing what he always does when he flares which is sort of drop out of existence. Doesn't go out with friends, just hangs around the house.  We are running out of options and he is going away to college in September and I'm totally freaked out about what's going to happen. I pray alot and do alot of research (sometimes too much). But whenever I feel overwhelmed this forum has helped me tremendously. I just remember, it could always be worse and they will get through it and I can say that he has turned into an amazing young man who deals very well with adversity. Hopefully there will be a light in his future.  Hang in there!!!!
 
 
Mother of 18 year old son
Remicade
6MP 100mg


StomaGrrrl
Regular Member


Date Joined Oct 2007
Total Posts : 55
   Posted 3/27/2008 10:34 PM (GMT -6)   
Hi Bennie,

i'm 28 (Just turned) and I got my ostomy last year. I sincerely wish the option had been given to me years ago. Around 17 or 18 when it started to feel like I was passing razors and I sat in the bathroom in college for 4 hours at a time with washcloths stuffed in my mouth so my roommates wouldn't hear me scream and cry. By all accounts I had a very successful college career, but I don't remember much of it - I was too busy worrying and sleeping for days at a time to manage my pain.

When you're a teenager with a chronic illness it feels as though you have a dual life - you desperately want to fit in with your peers (well, as much as you can fit in with everyone changing every two minutes) while praying with every breath that your body doesn't give out on you or give you away. Your only alternative when the body starts to win is to disappear. You live a ghost life which adds shame to the misery of suffering a serious illness.

I have to agree with everyone else - you will set the tone for your daughter's experience. My divorced, not-speaking parents came together as i began having surgeries this past year and I was deeply dependent upon them for a lot of things. In retrospect, i think there was some measure of horror for them as I went through procedure and procedure and procedure, but they focused on me and were resolved that I was going to get better. Even when my faith flagged, they believed, and I definitely don't get bummed easily.

I have three little sisters aged 18, 17, and 16. i was most worried about how they would perceive and treat me since people generally think I am their ages and we hang out a LOT. There was a part of me that was deeply scared they would shy away or think I was gross. Teenagers. Well, they have been nothing if not my biggest cheerleaders. They want a sister who can be there, not just in the house sleeping. I can go everywhere, do everything. The other day I went to a high school birthday party (weeeiiirrrddd) and my sister introduced me to everyone and when i asked her to stop she was genuinely confused because as she said "I'm proud of you! Of course I want all of my friends to know you!" I am doing high school for the first time by proxy.

The great thing about teenagers is that they are very open to understanding (see tattoo and piercing culture) individuality. What your daughter probably wants more than anything is to stop hurting and suffering and to get on with the business of living her life. I openly resented being held back in so many ways by my disease and I despaired for my future. Left untreated there was no chance of me ever having children, which made me feel like a pre-set loser. Guess who is fully expected to have kids now - I'm picking baby names!

As i was getting ostomied people often said "oh, it's too bad you're sick" and I would tell them "No. I've already BEEN SICK for 15 years. Now I'm getting well. " My mom told people the same thing. There were prayer chains and everything going. It was fantastic. Wooo-hooo!

I would caution you not to infantalize your daughter, feeling good is empowering and heady. It can be scary for parents to suddenly be out of the loop (the first time i missed a morning check-in call my mom called the hospital. i'd been out late with my fiancee, whoops!)

I wish you and your family the best. You're wrestling with a panoply of emotions and they are valid, all of them. Just don't let fear rule your life. There is a great article on an ostomates page - shaz's maybe - about a teenager who received a temporary ostomy and opted for a permanent placement against the advice of her family. But it was her life and she was ready to live, live live.

Prayers,

camille
diagnosed Endometriosis 2001
first surgery 2003 - lesions found in rectum
7 major procedures in 2007 including 10-hour endometriosis dissection, ileostomy, RV fistula closure, ilestomy takedown, colostomy
No longer taking testosterone, codeine, vicodin, xanax, or receiving acupuncture 2-3 times a week
Loving life and re-entering "the world"
still taking the occasional valium :)
Back at work and enjoying "perspective" on life...


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 550
   Posted 3/27/2008 10:44 PM (GMT -6)   

Thanks everyone for your input. I know in the grand scheme of things, her health is most important but those stupid, little (and yes, somewhat vain) questions are in our minds. When my daughter is in remission, she is a powerhouse. UC is not the center of her life. She keeps a full schedule with school and extracurricular activities. She has always had a matter-of-fact attitude about her UC. She rarely has a problem if people know about it. In fact, most often she prefers to be open and honest about it. I think that if she were to have to have surgery, she would be the same way. She doesn't seem completely adverse to the prospect of surgery. She reads the posts on the UC forum (including the many posts about surgery). She wants to know as much about the surgery and recovery as possible now before she has to face it.
As a family, we have taken her UC in stride. Like lp and Shaz said, we don't (and won't) treat her like an invalid. It is a shame she has UC but it is not who she is.
My daughter has always tried to keep her UC in perspective. She decided to name her colon (she liked that Liz&Kenny named her colon and had surgery to remove Kenny!). Her colon is named Annie Moore (as in "is there any more poop coming?"). Having read that there are some on this forum who have named their stoma/bag (not exactly sure what), I am sure my daughter will come up with a name should she have surgery!

Thanks again for welcoming me and my questions. Bratcat (my daughter) very rarely posts under her own name but she does read the forums daily.


--Mom of bratcat (16 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 3 pills/3Xday, 2 tabs 6-mp/1.5 tabs 6-mp every other day
 
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone.


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/28/2008 4:59 PM (GMT -6)   
everyone has already said what i was going to say, lol.
But i am going to add this, NONE of those questions are stupid, or little, and as for them being vain, they aren't that either! it's ok to worry about everything. And you may find some really weird stuff to worry about as the surgery gets closer, (i worried about being able to do cartwheels, how odd) but none of those are stupid or little worries.
I think it's great that ya'll don't treat her diff because she is sick, the whole tiem i was sick, my family acted like i was incapable of doing anything my 75 year old grandma was carrying things for me.
like stomagirl said, people were feeling sorry for me for having to get an ostomy, but i was glad. and i think she will be much happier after a surgery when she is well, rather than being sick now. and since she is young, it would be better to do it now, the older she gets and the longer she has been sick, the worse it will make the recovery.
good luck in whatever you do
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