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19 and scared. Surgery?

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Ulcerative Colitis
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Posted 4/29/2013 9:03 PM (GMT 0)
I'm 19 and I was diagnosed in January 2013 (this year) with UC. I spent a total of 16 days in the hospital in March. I have all the awful symptoms. I'm going to the bathroom all the time, having pain, nausea...I'm sensitive to a lot of foods, and I just want to feel okay again. I've been seeing this doctor who practices western and eastern medicines. He claims he can cure UC by putting good bacteria back in my gut with probiotics, kefir, or a fecal transplant - that sort of thing. I haven't tried these yet. He has me on hydrocortisone. I have tried a lot of meds in the past few months. I had a Remicade infusion and had severe allergic reactions, so that's out of the picture. I've had 2 colonoscopies. The second was in the hospital, and they told me I didn't have one bit of healthy tissue in my colon. I've got a really bad case of this - but I guess everybody does...
I'm young and don't know what I'm doing. I'm scared. I want surgery - I've heard a lot of success stories. Cost of surgery isn't a problem.
My parents are awesome - they've been very loving and supportive, but they're just as new to this as me and we're desperately searching for relief. I'd like to know more about different types of surgeries, the technical terms, complications, what affect my age will have on surgery, all the works. Should I or should I not have surgery? What do you think? Success stories? Failures? Is there hope? sad
Posted 4/29/2013 9:12 PM (GMT 0)
Hydrocortisone? In what form and dosage?
Posted 4/29/2013 9:14 PM (GMT 0)
Hi Ann, so sorry to hear you are having such a rough time, especially at a young age! This disease is the pits :(

I had a similar experience with pancolitis from the get go and little to no response to any of the drugs I tried. I was hanging on by a thread in January, just barely staying out of the hospital, when I started having a rare side effect on my eyesight to one of the only drugs that helped me (Flagyl). I was fed up and opted for surgery. Because I was so sick at the time and because of my history of steroid use my surgeon opted for a three step process (two is slightly more common).

I have been extremely lucky to have a wonderful experience with surgery. Having a colectomy gave me my life back. At my worst I was housebound, living with my parents, wearing adult diapers, eating only boiled chicken and white bread, having 10+ painful BMs each day, unable to sleep for more than an hour at a time. Needless to say I couldn't work or have a social life at all! Since having my first surgery I returned to working full time, living on my own in my own apartment, eating literally anything, hanging out with my friends, dating, going on vacation, participating in sports, and am currently med free. There are tradeoffs: I have a temporary ileostomy until my surgeries are complete, so I have to empty my pouch a few times per day and change my appliance every few days. Because I was too sick at the time for the trickier procedure of removing the rectum, I still have my rectum and I still have UC inflammation in it, so I have to sit on the toilet to evacuate blood and mucus a few times per day.

Surgery is hard. No one can or will dispute that. But when you are at the end of your rope, it is an amazing option to have. I'm thankful every day that it was available to me, because I truly believe that UC would have killed me otherwise. At the age of 26 my body felt like an 80 year old's. When I found out that my eyesight was deteriorating as well, I just knew in my heart: I wanted surgery. ASAP.

Most of us who have opted for surgery hang out on the Ostomies board so I would recommend posting there as well to get the most responses.

Now... it sounds like your current doctor is kind of a quack (sorry... I call it like I see it). Anyone who says they can "cure" Ulcerative Colitis is, well... a nut. Pure and simple. Before opting for surgery, if I were you, I would seek out the most talented GI specializing in IBD that you can find. If you post your general location we can probably help you locate the best person to help you. My GI is the head of IBD at a major teaching hospital so when SHE told me that it was time for surgery, I knew it was for real.

Good luck and please keep asking your questions, we are here to help!
Posted 4/29/2013 9:26 PM (GMT 0)
First off, I am sorry you have to deal with this at such a young age. My UC was really nasty too but I was diagnosed at age 36. I did end up having j pouch surgery after battling a constant flare for 5 years. I was a tough decision to make but in the end it was the only decision to make. And it's been a blessing in disguise.

I did try all I was willing to try first. You are really newly diagnosed though. How do your parents feel about surgery? Yours may be an extreme case since you are not finding any relief. I can tell you that the surgeries....if you are going for a j pouch....are really tough. I am very happy with my results and the whole process was totally worth it. And you have youth on your side! Much easier healing.

Perhaps with your parents, you can go have a surgical consult just to have the facts and info you need. It's always good to be prepared just in case things get worse. Please make sure you consult with a very highly skilled colorectal surgeon. That is a must.

All the best to you.
Posted 4/29/2013 9:59 PM (GMT 0)
I have a similar story, and i'm younger than you i'm 17, if you ever want to talk about it i put my email as public so feel free to email me, i don't want to write it all out on here :)
Posted 4/29/2013 10:38 PM (GMT 0)
There really is no cure for UC other than surgery. It is a lifelong battle if you don't get the surgery. You really don't sound like you want to fight a lifelong battle so I would go ahead with the surgery. It's not a guarantee but it is as close as you are going to get.
Posted 4/29/2013 11:59 PM (GMT 0)
Gary, what you wrote is ridiculous.

Many are in remission or healing.. Why don't you go get the surgery? How negligent to say that to someone so young.

Ann, there are no easy solutions but there are Many things from diet modification to a slew of drugs. What have you been on? Have you tried rectal meds/enemas/suppositories? Have you tried modifying your diet? What do you have to lose by trying to get your gut in balance? What are your current symptoms? How many times a day is "all the time" is there blood and mucus? Where is your pain?

You are too young to not exhaust every option. We have colons for a reason and we should try to keep them.
Posted 4/30/2013 12:06 AM (GMT 0)
Gary is the best lol.

I've noticed he pushes surgery all the time, but he won't get it himself. lololol

It's like...yeah yeah, you go first... *rubbing his hands*


love you bro.
smilewinkgrin
Posted 4/30/2013 12:37 AM (GMT 0)
ibs ! they don't exorsize your colon for that !

i also notice some folks chattin up fixes that they either have never tried or would ever try -

Post Edited (soystud) : 4/29/2013 6:40:43 PM (GMT-6)

Posted 4/30/2013 12:38 AM (GMT 0)
She talked about wanting to get surgery herself. She also stated that she really didn't want to fight this disease for an extended period. She wants it over and done with, not years and years of treatments hoping for remission. I don't really push surgery all of the time but there are those who are in such bad shape that that is what they really need and those that just don't want to mentally deal with a fight that can often last years and decades. I do believe that if you are in bad shape that surgery is more preferable than the harsh drugs and side effects from long time steroid use, immunemodulators, and biologics. I wholeheartedly support anyone who wants to delay surgery for as long as possible and is willing to fight this disease for years and decades. This girl isn't and I don't believe she really wants to be talked into it. I don't get the surgery myself because my condition is not that bad and it has improved to the point where the doctor believes my UC is under control and all my symptoms are due to IBS.
Posted 4/30/2013 12:41 AM (GMT 0)
ann A - absolutely there is hope !

it took me almost 10 years to get here - i'm just glad ALL of me is here !

Post Edited (soystud) : 4/29/2013 6:44:14 PM (GMT-6)

Posted 4/30/2013 12:50 AM (GMT 0)

PathogenKiller said...
You are too young to not exhaust every option. We have colons for a reason and we should try to keep them.

And you think what Gary wrote was ridiculous?? What the heck does being too young have to do with it?? This person is obviously in a bad position if they are inquiring about surgery so newly diagnosed. Some of us are unfortunate enough to have a severe case of UC. Sometimes there just isn't anything else to do.....sometimes. Yes, other options should always be looked at but I'm so tired of people constantly shooting down surgery when it really helps people who are truly in need of it. It's an option along with everything else to treat UC.
Posted 4/30/2013 1:07 AM (GMT 0)
Boy, you guys are going to get it if BeatUC pops in here lol
Posted 4/30/2013 1:10 AM (GMT 0)

chcl said...
Hydrocortisone? In what form and dosage?


5mg tabs by mouth three times daily.
Posted 4/30/2013 1:15 AM (GMT 0)

ByeByeUC said...
What the heck does being too young have to do with it??


www.unboundmedicine.com/washingtonmanual/ub/citation/9407985/Total_abdominal_colectomy_and_ileorectal_anastomosis_for_inflammatory_bowel_disease_
Crohn's patients 36 years of age or younger also showed a lower probability of success (patients < or = 36 years, 57 percent; patients > 36 years, 93.8 percent; P = 0.03). In the group with chronic ulcerative colitis, younger patients also seemed to require additional surgery more frequently; however, this difference was not statistically significant. Previous duration of symptoms, with mild or moderate disease in a distensible rectum, had no effect on results in either disease group.

one study.. you do the research and find the rest. Ive already done it for myself.

Post Edited (PathogenKiller) : 4/29/2013 7:18:08 PM (GMT-6)

Posted 4/30/2013 1:49 AM (GMT 0)
Liz! Thank you so much for your story and input. This is my first time talking to others who have UC. You give me hope.
I've been suspecting my doctor is a quack...it's good to hear I'm not the only one. 
I live in Utah County, in Utah, but we're willing to travel within the state to find a good surgeon.
Marianne- my mom is leaning with me toward surgery. My dad hasn't really expressed his opinion. If I have surgery, I will make sure my surgeon is top-of-the-line and experienced. Thank you for your input.

Everyone - I have been on so many meds. Prednisone, Asacol, and so many more that I didn't ever take the time to pronounce, and therefore cannot remember them. I am accustomed to med-taking. I've been struggling with depression since the seventh grade, so getting in the habit of taking medication has never been an issue. But I don't want to live life as a walking-pharmacy. Drugs have nasty side effects and they also can cause long term problems. But I also know from experience they can be necessary. So I will take meds for depression, I can do that.
I don't want to live life in fear of another flare up. This one has been so traumatizing. If I have a better chance at a successful surgery because I am young, I want to take it!
This doctor I am seeing says he has an older UC patient who had surgery, and her quality of life is much worse. He doesn't want me to have surgery. He says he had a doctor friend with UC. Apparently this doctor cured his own UC with a fecal transplant from his own father. The doctor I am seeing is not a GI doctor - he's a family practitioner, and we were told he was the best of the best. 
I have another GI doctor that I rarely see cause he's so booked all the time.
Posted 4/30/2013 1:59 AM (GMT 0)
You were diagnosed in January of this year after how long of suffering from it? Did you just have a single flare or is this a problem that has been building for some time?
Posted 4/30/2013 2:02 AM (GMT 0)

PathogenKiller said...

ByeByeUC said...
What the heck does being too young have to do with it??


www.unboundmedicine.com/washingtonmanual/ub/citation/9407985/Total_abdominal_colectomy_and_ileorectal_anastomosis_for_inflammatory_bowel_disease_
Crohn's patients 36 years of age or younger also showed a lower probability of success (patients < or = 36 years, 57 percent; patients > 36 years, 93.8 percent; P = 0.03). In the group with chronic ulcerative colitis, younger patients also seemed to require additional surgery more frequently; however, this difference was not statistically significant. Previous duration of symptoms, with mild or moderate disease in a distensible rectum, had no effect on results in either disease group.

one study.. you do the research and find the rest. Ive already done it for myself.

www.ncbi.nlm.nih.gov/pubmed/15699695
Posted 4/30/2013 2:23 AM (GMT 0)
My study was related to your quote. I even pulled out the data on more complications with younger age for you. Im not getting the corrolation, but sure... lets talk about that study..

I have no doubt people are happier after UC then living with severe UC. the folks from my study have even more awesome feedback
Eighty-four percent of ulcerative colitis patients and 91 percent of Crohn's disease patients reported an improvement in their quality of life, and overall, more than 90 percent considered their health status to be better than before surgery.

And that is great.. and Im happy for them. Life with severe UC would make alot of people gnaw their own limbs off if they could be guaranteed they could fix it. But no, dx in Jan 13, 19 year old kid.. I dont think that they should give up so easily. She is not in a hospital, she has the luxury of even screwing around with just taking some hydrocortisone? (what the? get a new doctor.)...so yes, its negligent to tell her she should get surgery and it doesnt ever get better until you get surgery or die.

Life is hard, UC is hard.. and there are no easy answers or quick fixes. If you are ACUTE then yes, you do what you need to do. Obviously. if you arent then yes, you should try to fight. And that extends to all areas of your life.
Posted 4/30/2013 2:30 AM (GMT 0)
Surgery is the only sure-fire cure for UC (you can't have colitis without a colon!). But it is possible to get into remission--I've done it twice.

My first suggestion is to get a therapist. This is an incredibly difficult illness to cope with, and it's even worse that it strikes so many of us at such a young age (I was 21, starting my junior year of college).

I second the suggestion to get a new doctor--your current one sounds like a complete quack. You need a GI to treat you; my primary care physicians always referred me to one as soon as they realized the extent of my symptoms (that is, I didn't just have regular diarrhea). I've had doctors who are always booked solid, and I had one who kept having to reschedule appointments I'd been waiting months for. When that happens, I switch doctors--there's no use having an amazing doctor who can never see you and doesn't return phone calls. I HIGHLY recommend switching doctors; your best bet might be to find an excellent hospital, and contacting their GI department.

Try a new doctor and see if you can manage your symptoms medically and by restricting your diet (diet doesn't cause UC, but certain foods can worsen your symptoms--I stay off raw veggies, salad, and stuff with seeds when I'm really sick). If not, surgery might be the best option. There are so many great people here who are happy to talk you through the realities of surgery (Liz has a great blog!), and your life is definitely not over if you don't have a colon.

Finally, there are some other drugs/biologics that might be worthwhile, if Asacol isn't working. I don't know if you've tried azathioprine or mercaptopurine (sometimes known as Imuran and 6MP respectively), but those can take several months to start kicking in. Additionally, there's also Humira, another antibody that might not give you the reaction that Remicade did.
Posted 4/30/2013 2:39 AM (GMT 0)
PathogenKiller-
I certainly have no luxuries. Yes I do need a new doctor. Just because I'm not in the hospital doesn't mean I'm taking it easy. I'm suffering and I could be going downhill pretty quick again. Please be respectful.
Posted 4/30/2013 2:51 AM (GMT 0)
AnnAmaze, Im sorry that my frustration with gary spilled over into our interaction.

I do not think you arent sick. Im sure you are suffering and like all of us could go downhill. All I can go from is the information you provide. I know you havent been dealing with UC long, it sounds like.. and it is very scary.. I do want caution you and let you be very aware that cutting out your colon is permanent. It doesnt guarantee you wont go to the bathroom many times a day. It does not guarantee you wont have food sensitivites.. it can bring a whole new set of problems. It is often hard on self esteem if you end up with a bag due to pouchitis from a j pouch.. or if your pullthrough just cant happen or whatever.

You should read the ostomy forum here at healing well and see how people who have had the procedure have went on in their life and assess your current health and how much time or energy you are prepared to devote to helping your body get into remission.

Im sure you are very overwhelmed already.. and Im glad you are here to do your homework.. but the thing is, it sounds like you already have your mind made up.. I want you to know there is hope beyond surgery. I do consider it a luxury that all of us have who deal with chronic illnesses not to be acute. It gives us time to really make good decisions and weigh all our options. I hope that you will carefully weigh yours even the options that dont sound as appealing, like trying to repopulate your gut or change your diet. Those things take time.. and maybe you are too sick to take that time.. I tend to think if your western/eastern leaning md (if it isnt an actual medical doctor but a naturopath or something, disreguard) thought you were able to explore those options your colon has some time to decide.. maybe you are at the end of your rope however.. and you do what you gotta do.

Good luck whatever it is.. but I hope you explore ALL of your options.
Posted 4/30/2013 2:57 AM (GMT 0)
annA -

i don't think pk or anyone here is trying to negate your situation, only trying to say you still have options if you so choose - there are no easy answers or solutions - just understand for a lot of us, we continue to hold out hope that there will be a solution, so we continue to keep the door open -

 

Post Edited (soystud) : 4/29/2013 9:17:42 PM (GMT-6)

Posted 4/30/2013 3:07 AM (GMT 0)
AnnAmaze,

 My daughter is of your age. She has UC(pancolitis) and now in remission. I am glad that your parents are there for you and also to have a doctor willing to do fecal transplant.

My advice: You being young please don't fall for surgery unless you tried and failed all the alternative therapies. May be one  alternative approach itself won't give you remission as your colon is fully inflamed - You might have to incorporate some other modifications too to gain control. A strong Understanding, Patience, self discipline and hope are very much needed with this disease. For this, parents/family involvement is critical.

Dietary modifications-You mentioned certain foods make you worse- this is your body's way of telling you to avoid those. Better step is to  avoid all processed and store brought foods, sugar, wheat and diary products. Many people have very good results with anti-inflammatory diet like SCD diet and Paleo diet. Lots of info and success stories/Blogs are in the net. My daughter's favorite one is " all against grain" and "Urban poser"

Fecal transplant- I am a strong supporter of this treatment. Educate yourself about this simple, sensible treatment. Check out DR.THOMAS BORODY'S successful approach in this. Because your Doctor is suggesting this treatment try it before deciding on surgery.

 Best wishes...

 

Posted 4/30/2013 3:11 AM (GMT 0)
Anne A

Don't be so sure your doctor is a quack. There are people (they are generally not posting on this board) who have achieved long term (permanent?) remission, some using fecal transplants. Fecal Transplant is a therapy that has some amazing results, for some people. Diet, for some people, can achieve amazing results.

Also, there are new drugs coming online in the next few years. For example, vedolizumab is a promising drug that may hit the market late this year.

You might want to hold on for a while and see if you can manage your UC before opting for surgery. Having your colon removed MAY indeed be the end of your colitis. But not always. Sometimes people with UC develop crohns after they have their colons removed.

I am biased because I have struggled for years. In the end, I may end up having surgery. But it was always worth it to me to try even when things were very bad for long periods of time.

But, if you are not up for a HARD struggle, because it will be hard, then surgery might be best for you. In that case, make sure you do a LOT of research about the surgery and life with an ostomy. Know what you are signing up for. Good luck! It will all work out in the end.
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