Should my daughter have surgery?

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karliebug
New Member


Date Joined Feb 2009
Total Posts : 10
   Posted 2/10/2009 5:31 AM (GMT -6)   
My daughter is 18 and has had UC for about 10 years. She currently takes 12 asacol, 2 6-mp, and various other vitamins,etc.  She just got off 4 months of prednisone in late December. She is still flaring. She feels better on the prednisone but has such terrible side effects from it and I think it is wrecking her other organs. She was hospitalized 2 years ago for almost a month. She is going for a new colonoscopy on Friday, but her dr. has suggested that surgery would improve her qaulity of life. she is too scared to even consider it. Aside from the whole scary-ness of having major surgery are the things most young girls would be concerned with- how many scars on her stomach, how to function with a bag (it is gross and as a college student she shares a restroom with 40 other girls) Does the bag make noise? How will it effect her future fertility? How will it effect her relationship with her boyfriend? will others be able to tell?
     I am trying to get her to at least consider it. does anyone have anything to say to help? Are there any younger members here that have gone through it that can offer her advice and support?

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 2/10/2009 8:01 AM (GMT -6)   
There are lots of kids who have had surgery for UC; you can meet them or their parents at www.j-pouch.org There is one young person on this site, Bratcat, who recently had j-pouch surgery and hopefully either she or her mother will see your post.

Surgery is a tough decision but when the medical treatment fails it's a very good option. Using prednisone to manage flares is not the best way to treat the disease for the long term. You have a lot of great questions to ask and since I was older when I had surgery none of your daughter's concerns were my concerns. I suggest you research the surgical options; j or k pouch and the permanent ostomy. If she ultimately has to have surgery she will at least know what type she wants.

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


Chris'sColon
Regular Member


Date Joined Jun 2008
Total Posts : 237
   Posted 2/10/2009 8:15 AM (GMT -6)   
if my son finds no relief by his teen years i will certainly encourage him to have the surgery. just think about what all the long term drug use might be doing to the rest of her body. also, i'd think it would make college life easier then having to miss classes and social experiences because she's flaring and can't leave her dorm. her friends will understand and likely no one else will even know, everyone is so wrapped up in themselves these days. she might also contact the housing/student life department at the college and request a private room/bath due to medical reasons/special needs. but if she's going this fall she better get on it before all the housing is assigned. i think she'll find college to be more accomodating and liberal than she thinks.
Veronica (27), mommy to Chris (3.5 yr old, diagnosed november 2007 with left sided UC) and Emily 10 months
 
Chris current meds:
 Prevacid, Prednisone 20mg
 Pentasa 1000mg
 Culturelle 1x daily
 soon to start Imuran 25mg


PSA
Regular Member


Date Joined Jan 2009
Total Posts : 498
   Posted 2/10/2009 8:20 AM (GMT -6)   

I feel you should try other alternate medicines too. They might help. There is lot of development now in medicine as well as alternate remedies. I have been taking Sallaki, fresh home grown turmeric, yoga, etc. My sister also suffers from UC. She got UC sometime in 1987, when she was hardly 20 years old and unmarried. Doctors had suggested surgery, but somehow she managed without that as fertility issue was one of the main concerns too. Infact, she was almost wheeled into the Operation Theatre when she decided not to go for that. Finally she got married and has a son. She is still on alternate medicines and Sulpha and Mesacol. Besides this she also takes some ayurvedic preparations. The flare ups are there but she manages. I feel surgery should be the last option and I the chances of motherhood become remote, that is what I have read. Same holds good for men too, they find it difficult to father a child, if they go for colectomy. God forbid, if worst comes to worst, one should opt for J pouch in two stages. In the first stage, they would chop off the colon, rectum and a part of anal canal, but retain the sphinchter muscles/nerves. They create a pouch by pull through surgery, where a part of small intestine is sewed to create a pouch and join it with anal opening. Besides this they create an opening on abdomin from where a part of small intestine is taken out , where a pouch is fixed with adhesive to collect the waste. The pouch does not create any noise, only thing is that incase of liquids it tends to fill up fast. The sound which you are referring is at times related to gas/wind. Normally a plug/sieve is pasted on the pouch for release of wind.

MY suggestion is that please save the colon as long as you can. It is a major surgery and the recovery period is a little long. Even if you have to go for that, go for the best surgeon.

Best of luck and speedy recovery for your daughter. Our prayers are always with you.


45 years Male
Diagnosed UC October 1989
Had two stage J Pouch Surgery Nov 2005 March 2006
Complications after surgery - Incisional Hernia and Ano Fistulas
on Combiflam, Multivitamins and restricted diet.
Tried Sallaki/Turmeric/Homoepathy/Allopathy/Chinese/Unani/Ayuvedic/Yoga before going for surgery


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 2/10/2009 11:01 AM (GMT -6)   
She has such a long life ahead of her, it seems to make sense. She must already have struggles with the indignities of the disease, it would just be a new set of struggles for a while. She could spend years trying alternatives and never find relief or even get worse.

I respectfully disagree with PSA.D, and would not wish decades of this -- the pain, the anxiety, the indignity, the exhaustion, the effects on other aspects of health -- on anyone. Get it done before she has other demands in her life that make it more difficult.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete$$ probiotic powder, then Forte, now a stronger one (50 billion). Doing much better, but still having some bad days. 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 2/10/2009 11:11 AM (GMT -6)   
Yeah, I too disagree with PSA.D- he had a horrible surgery experience, with is NOT THE NORM. Check out the ostomy forum & the jpouc.org forum- they will be very helpful! I say go for the surgery- your poor daughter. And, fertility is not an issue! Make an appt. for a surgical consult with a surgeon that her GI recommends, & both of you go to it, armed with questions. It's just to get info, nothing definite. Once you talk with a surgeon, I think you & she will be amazed at how routine these operations actually are. And I'm curious, PSA.Delhi- where exactly did you have surgery done?

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
Fiber supplement
 
 
 


Scrap Girl
Veteran Member


Date Joined Jan 2007
Total Posts : 653
   Posted 2/10/2009 11:36 AM (GMT -6)   
Have they considered Remicade? Might be worth a try.

Diagnosed with UC in Feb. 2005
 
Colazal (9 a day)
Folic Acid
Biotin
Calcium
Remicade


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 2/10/2009 11:47 AM (GMT -6)   

Hi Karliebug,

I'm a 23 year old female who has had UC for almost 10 years as well and am also off and on considering surgery. Right now I'm trying out Remicade which seems to be a bit promising for me, but I think some day I will just go through with the surgery anyway. I have so much life left that living this way forever seems almost pointless and silly. Why live with a diseased colon, potentially suffering for the rest of my life, when I can get rid of it and move on?

I also have the same concerns as your daughter however, and sometimes they're hard to move past. But after really researching the surgery and reading stories from other young people, these things just don't seem to be that big of a deal. Here is a list I made for reasons to have surgery, maybe it will give her some things to think about:

1) No more worrying about where every toilet is when I go out

2) Being able to go out without having to run to the bathroom several times

3) Being able to enjoy social gatherings without worrying about using the bathroom

4) Not having to worry if everything I eat is going to make me sick

5) Can't have colon cancer without a colon! Even if it's a small risk, it's still there

6) Finally be able to feel healthy again

7) No more taking handfuls of questionable medications

8) No more living off of Immodium AD

9) Seems like pregnancy would be easier & less risky w/ a j-pouch/colostomy, than it would be with colitis

10) No point in waiting for a cure that may never come or may come when I'm 80… What a waste of life!

11) Tired of wondering when the next flare will be, when this flare will end, what this food will do, etc

12) Even if I don't get colon cancer I could end up with other cancers or illnesses from all the meds- especially the ones like prednisone!

13) If the J-Pouch doesn't work I can always try the BCIR

14) Most of the things on the after-surgery diet restriction list I don’t eat anyway!

15) I feel like it would be better to have surgery when I'm young & not severely ill, that way I can heal beter & have a smoother recovery, instead of waiting until it's medically necessary when I might not bounce back so well

16) Even though it's scary I think it would be a large change for the better in my quality of life; even though it's not that bad at the moment it was and probably would be again

17) Most importantly... NO MORE ULCERATIVE COLITIS!

 


I too was worried about the surgery scars (I admit, I am vain) but with laparoscopic surgery, the scars are so minimal and with a good scar cream I believe they would be barely noticeable. Then there's the topic of the bag. I admit, this part freaks me out the most but think of it this way: If she were to go for the j-pouch surgery, it would be a temporary thing. Three months, maybe. Chances are she will be recovering during this time and not in the mood for doing anything that would show the bag anyway. She can request that the bag be placed low on the abdomen if possible so that it would be under her pants and when secured properly be very discreet. Then, once she has the second surgery no one would even know she's any different than them. People always say "You don't want that surgery, you'll never have a solid BM again!!" But honestly... if she's anything like me she probably doesn't have solid BMs anyway so it wouldn't be much of a difference, except that it wouldn't be accompanied with the pain and urgency which is the big problem anyway!!

Well I'm kind of rambeling here, but the most important thing I guess would be to research EVERYTHING, every aspect of the surgery, and when reading others' stories on websites like this or jpouch.org, remember that those people are mostly posting there because they are having problems and they are NOT the majority, and many people are very very happy with their post surgery life.

Good luck with whatever you and your daughter decide and I hope you continue posting here!


Female, 23, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in femur head & lumbar spine from long term prednisone use...

Current Meds:
Lexapro 10mg
First Remicade infusion 2/5/09


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 2/10/2009 12:42 PM (GMT -6)   

Welcome karliebug. My daughter, bratcat, had her surgery this past summer.
She was diagnosed with UC at 15-1/2. Never thought surgery would become a real possibility. Never even wanted to think about the heavy-hitting drugs. She had 3 very big flares. 40+ times in the bathroom each day, out of school for 9 weeks each time. Each time a drug stopped keeping her in remission she went on a more powerful drug. And the dreaded prednisone. The last flare came less than 6 months after the previous one. And the prednisone side effects were terrible. The difference between my daughter and yours is that bratcat was open to the surgery.

Her surgeon (and we consulted with 2 different ones) does not do laparoscopic surgery. Bratcat was fine with that. It is a very tough decision to make. She had her first surgery July 3. She had a temporary ostomy until her reversal on November 10. The first surgery is major. She was in the hospital 6 days. We purposely scheduled her surgery for the beginning of the summer so she would have the time off to recuperate and adjust to her ostomy. She never loved her ostomy but mostly because she hates the feeling of things on her skin. She was weaker over the summer but she also had nothing she had to do. She did see friends, did go to one party (about a month after surgery). She stayed for about 2 hours instead of the entire time. It was a pool party. She didn't swim. Noone cared.
She began senior year with her ostomy. But she was healthy. Bratcat took 3 weeks off after her reversal. That included Thanksgiving weekend. Again we scheduled it to work into her schedule. She was able to march in homecoming (with her ostomy).

Today she is feeling great. Her j-pouch has been wonderful. She lost 45 lbs of prednisone weight. She has a peacefulness on her face that I haven't seen in years.

This is a huge decision. We couldn't make it for her but we did talk about it. We discussed having to be on powerful meds for another 70+ years. We talked about her having a flare while being a parent, having to hold down a job, etc. Having her surgery done now worked for her because she has no real responsibilities (she could take off from work since we support her) and she is under our medical insurance. Yes there is a possibility of infertility. But there are lots of options (check out the j-pouch website). And she would rather have that to deal with than have a baby (and later children) and have to worry about flaring.

Her scar isn't bad. Her surgeon did a great job. Her went around her belly button so that is still there. The scar is fading. It will always be there but the UC is gone.

We spoke with a patient of her surgeon. I asked to speak to someone who was similar to my daughter (similar diagnosis, similar age at surgery, etc). We spoke with a girl who had been diagnosed at 16, surgery at 19. She was now 22 and had just had plastic surgery on her scar. But even without the plastic surgery, she was happy with her decision. She was happy, healthy, living life.

Ediekristen's list is similar to everything we discussed as a family.

Bratcat reads the forum daily but doesn't always post. I'll try to get her to post something here.


--Mom of bratcat (17 years old) and nonamejames (20 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


bratcat
Regular Member


Date Joined Jan 2007
Total Posts : 74
   Posted 2/10/2009 2:24 PM (GMT -6)   
Hi Karliebug

As my mom said I was diagnosed with UC at 15 1/2 and had 3 major flares and exhausted basically every medicine. I had the two step JPouch surgery and am feeling great. I'm a senior in high school and finally am having a real high school experience (I missed out on my 19th and 11th grade years). I definitely did not think I would ever go for surgery because I never thought I would need it and also surgery scared me but after 3 huge flares in a 2 year time span, I gave in pretty fast. My surgery was was open so I do have a long scar down my stomach but I feel that I would rather have an ugly scar instead of being sick with UC anyday. I also thing of my scars as my war wounds and my tattoos that tell stories.

Having the bag is not as bad as is sounds. Once you get used to changing it it is easy. Emptying is very quick and easy. It does smell but they have deodorizers that you can put in the bag. The stoma does make noise (like it is farting) especially in the beginning but if there is something covering the bag it does muffle it. I don't think it is very easy to tell whether you have an ostomy or not. It is under the clothing.

I did think about infertility but at the same time I thought about having UC and going into a flare while pregnant or right after birth. I would feel like I missed part of my kids life. If in the future I can't have kids I will consider adoption.

I hope this helps. If you or your daughter have any other questions feel free to ask. This board is a wealth of knowledge.
Diagnosed with UC 10/12/06
Daughter of Bennie
17 years old
Flared 3 times in a year and a half tried almost all medicines
Current Meds:None!!
JPouch Step 1 of 2 on July 3


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 2/10/2009 2:56 PM (GMT -6)   
Has your daughter been trying alternative treatments such as fecal transplantation? If not, please read as much as possible on this forum to see what has worked for others. There are several reasons why one gets Colitis. Determining why your daughter has Colitis can help in figuring out which of these treatments (if any) might work. So does trial and error.

If she has tried alternative treatments and they haven't worked, then yes, surgery is an option. Colitis medicines can often be more harmful then taking out the colon. I don't know about the risks of not being able to conceive after wards--something to ask those with J-pouches.

I think I would try to keep my colon as long as possible. I prefer having to run to the toilet to having my colon taken out. However, there are some who probably prefer having their colon taken out.

It's really up to your daughter. However, sometimes teenagers can make the wrong decision. They haven't experienced life long enough to understand certain consequences. She should be given as much information as possible so that she can make an informed decision. She also should be reading this forum.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics and Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose, artificial sweeteners
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)


PSA
Regular Member


Date Joined Jan 2009
Total Posts : 498
   Posted 2/11/2009 1:20 AM (GMT -6)   

Eva I had the surgery done at one of the best /premier centers of India, Ganga Ram Hospital, which is number one for these surgeries, and the same was carried out supposedly by one of the best surgeons. Still there was goof up. IN any case I have yet to come across a person in India, who is really doing well after surgery. Most of them have complications. I don't know why, but the success rate is only 50%, the rest 50%  have all sorts of complications.

With all my due respect to Peety, who is also a professional colleague, at times I also wonder, what went wrong with my surgery. Now no surgeon even wants to touch my tummy and runs away even with the thought of repairing/fixing up the hernia or fistula. Anyway Cheers to all. Good luck.


45 years Male
Diagnosed UC October 1989
Had two stage J Pouch Surgery Nov 2005 March 2006
Complications after surgery - Incisional Hernia and Ano Fistulas
on Combiflam, Multivitamins and restricted diet.
Tried Sallaki/Turmeric/Homoepathy/Allopathy/Chinese/Unani/Ayuvedic/Yoga before going for surgery


karliebug
New Member


Date Joined Feb 2009
Total Posts : 10
   Posted 2/11/2009 5:04 AM (GMT -6)   
Thank you all for your responses, especially bratcat and her mom. She did try remicade but did not respond to it well. she goes for her colonoscopy on friday and I'll talk to the GI about a surgeon if it doesn't go well. I think I have convinced her that we should at least discuss her options with a surgeon.

Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1251
   Posted 2/11/2009 5:20 AM (GMT -6)   
I've had my ileostomy surgery for 33 years now due to UC since I was 10 years old and life is great! No running to the loo hoping I make it on time, no meds, I can eat anything I want (and it shows!), no pain, etc. If everything else has been tried and/or her quality of life is such that she has no life, then I say 'go for it' - but I'm biased because I know how great life can be after surgery (you'll find most people who have had surgery saying the same thing). It will be tough for the first few weeks, but she will feel heaps better after it.

99% of people say to me after surgery: "If I'd known how well I would feel, even immediately after surgery with the pain of the stitches, I wouldn't have spent so much time and energy trying to save my colon".

>>how many scars on her stomach

I've had two surgeries - one to perform the ileo, the second to remove my anus and rectum, but I only have one scar. My surgeon just cut over the top of the previous scar for my second op. I don't call them scars, to me, they're 'survival wounds'. :)

>>how to function with a bag (it is gross and as a college student she shares a restroom with 40 other girls)

She will function much better after she heals than she is with UC, knowing she won't have to run to the loo hoping she makes it on time, she will gain so much energy and be out enjoying herself so much that, generally, she'll forget she even has a bag for most of the time.

>>Does the bag make noise?

At first she'll have a lot of gas and consequently the stoma will make a lot of noise, but that generally settles down after a few weeks.

>>How will it effect her future fertility?

Having an ileostomy shouldn't affect her fertility (I've known many ileostomates becomes mums and dads after surgery) however there is a chance that a j pouch could affect her fertility. Because of this, some people opt to have kids first before having their final j pouch surgery. However, many j pouchers have become parents too so there's no guarantees one way or the other.

>>How will it effect her relationship with her boyfriend?

I've only ever had one guy reject me cos of my ostomy - but that was his loss. Most guys will just be glad she's alive and well and able to be with them. Nowhere in Personal ads have I ever seen 'must be tidy, friendly and poop via rectum and anus'. How you poop is simply not a criteria most people base a relationship on... and if they do, I bet she doesn't want anyone that shallow anyway!

>>will others be able to tell?

I go swimming regularly every summer and no one in 33 years has ever commented they can see my bag under my bathing suit! No one need know she has a bag unless she tells them.

People say to me all the time "I've never met anyone with an ostomy". I just answer "I bet you have, you just haven't known it :)" When I started the job I'm currently at, I was looking at my ostomy website one lunch time and the girl who was training me glanced over my shoulder and said "THAT'S where I know you from!" She had an ileostomy due to UC too and had been on my site several times. Except for the fact I was looking at my website, neither of us would ever have known the other had an ileostomy even though we sat next to each other all day long at a desk.

Her ostomy won't stop her from doing anything she wants to do - only her mind will!

Best of luck with the decision.
I have had an ileostomy for 33 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 2/11/2009 7:05 AM (GMT -6)   

Hi, I haven't had surgery yet, but I talked to a few surgeons and scheduled one for last fall (and canceled because Remicade finally started working).

In the US, the success rate for jpouch surgery is at least 90%. If one gets laparoscopic surgery, then there are smaller scars and lower risk of infertility (since it's less invasive). But it's better to have the best surgeon possible, regardless of open or laparoscopic. The biggest concern surgeons had was fertility, but people with jpouches are able to get pregnant--sometimes naturally, sometimes with help from fertility meds.

If her boyfriend has a problem with the ostomy, then he's probably not a guy who's worth her time; his concern should be that his girlfriend is finally feeling better. As for college, she could register with the campus' Disability Services and they could help find her a suitable living arrangement.

You might also want to check out jpouch.net; it has stories/blogs from people who have gone through the surgeries. Let us know if you have questions and keep posting!


Female, Age 20
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (6 infusions), 2.4 g Lialda, Forvia, 6 Colazal, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement, 20 mg Prozac, VSL #3
 


PSA
Regular Member


Date Joined Jan 2009
Total Posts : 498
   Posted 2/11/2009 9:07 AM (GMT -6)   
Hi Shaz. Your posting is really encouraging and thoughtful. I wish everybody shares the same concern, as you have for others in this world. I am sure the little girl and her family will have no fears for the surgery, after having seen your posting. Thanks.

45 years Male
Diagnosed UC October 1989
Had two stage J Pouch Surgery Nov 2005 March 2006
Complications after surgery - Incisional Hernia and Ano Fistulas
on Combiflam, Multivitamins and restricted diet.
Tried Sallaki/Turmeric/Homoepathy/Allopathy/Chinese/Unani/Ayuvedic/Yoga before going for surgery


malachy72
Regular Member


Date Joined Oct 2005
Total Posts : 99
   Posted 2/11/2009 10:34 PM (GMT -6)   
"IN any case I have yet to come across a person in India, who is really doing well after surgery"
---------------------------------------------------------------------
 
If this doesn't speak volumes about the competentcy of the surgeons in India, what does?
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