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Decision on being sliced and diced

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Ulcerative Colitis
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Posted 7/21/2011 8:39 PM (GMT 0)
So i am 23 years old and have had mild to major Ulcerative Colitis for over 4 years. during that time I have tried every medication, or mix of medication possible including experimental or medications my doctor has said to have, "positive results in some." however to no avail.

The only medication that works for any period of time is a high dose of predisone that my doctor believes has cause my heart to begin beating irregularly and cause me to be hospitalized twice to have my heart shocked back into a normal rhythm.

Now the decision has to be made on whether i should go forth with the surgery option of having the large intestines completely removed and wanted to get other peoples opinion and insight on the procedure.

I am calling out for help from people who have had this procedure or thinking of getting it done themselves, i want the good, the bad, and the ugly. If I am going to get diced open then i need to know that it actually works for people out there. how is life afterward, still able to keep up physically, any limitations?

HELP!

Sincerely,
Stephen in distress
Posted 7/21/2011 9:29 PM (GMT 0)
I haven't had it done but it's the "next step" so to speak. On the last resort of large dose medication hoping it works...
I think the surgery seems to have given a lot of people here a "new" life so to speak, as you are curing the problem, think to yourself what are you going thru now? if your life is a total misery and nothings working then maybe it's worth considering the surgery I don't think it is as bad as you think, sure long recovery period and bouts of pain etc but once your over the hill I think most would agree here it was worth it.
Posted 7/21/2011 9:56 PM (GMT 0)
I had jpouch surgery 10 years ago; best health decision of my life. Since then I have never missed a vacation, a day of work, or been unable to keep any commitment. I no longer take any medications and I live life to the fullest. It wasn't easy for me to make the decision and I fought against it, but when I awoke from surgery I could immediately tell that I no longer had UC and that was one of the happiest days of my life. My only recommendation for you is to get a consult with a top CR surgeon in your state. Do not have the surgery done in a small town, by the VA, or through Medicare. Experience is EVERYTHING for a positive outcome.

Sue
Posted 7/21/2011 11:07 PM (GMT 0)
reverant,

Stephen, I am so sorry you are at the point of this decision.

Wow, you've been through alot ;(

I'm sorry.

I can't help you as to advice on technical procedures, as I haven't gotten there, and frankly, hope it will be the  last resort and way down the road.

I know there are forums that deal specifically with the surgery, pre, post, etc... you may want to post there, no?

I wish you the best, with the decision making process and with the surgery. Many have said they have no regrets.

Best of luck to you.

Posted 7/22/2011 12:02 AM (GMT 0)
the good-no meds, eat whatever, whenever, go whereever, whenever, no more missing out on things, no running for the bathroom,no more preps, no side effects from meds, having energy to do the things i want to do, and being able to do them. basically, getting my life back

the bad and they ugly-surgery hurts! and the recovery is not easy, BUT it's worth it.  the surgery pain is shortlived and you can control it pretty much with pain killers.  i was on just advil about 2 weeks out, except at night. then after that i was good.  it takes a while to get your strength back, but within a few weeks i felt better than i had in years. 

surgery is hard, the recovery is hard and its a hard decision to make, it takes a lot of courage to make that step, to take your life back.  But if you are ready, and content with your decision and it's right for you, then it will be great!

good luck with whatever you decide

 

Posted 7/22/2011 2:13 AM (GMT 0)
Reverent,

They use xrays, or what's much worse a CAT scan,

to verify the integrity of the jpouch, before they connect it to

your intestines. They can't shield your reproductive organs when

they do this. Your testicles or ovaries get zapped.

As a young person who might want to have kids some day,

consider this.

If I were you, I'd try DIY fecal transplant first.

Search this website for the many threads on "fecal transplant"

Here's one:

https://www.healingwell.com/community/default.aspx?f=38&m=1662417

If that doesn't work I'd demand that your gastroenterologist or family doctor prescribe you the triple antibiotic treatment described here:

http://www.ncbi.nlm.nih.gov/pubmed/20216533

If they won't, find a doctor who will. See this thread for more info:

https://www.healingwell.com/community/default.aspx?f=38&m=2088679

I had my colon removed and a jpouch constructed April 4, 2011.

After 8 weeks with a ostomy bag (very unpleasant) I had the

jpouch connected June 2, 2011. I feel somewhat better

than before the surgery, but I'm still pooping 10-12 times per day

including 3-4 times at night, even with the opioid drug lomotil. (Immodium

was useless for me.)

Long before the surgery I did try DIY fecal transplants with my then 2-year old son's poop, but I couldn't hold them for long, and there was only minor improvement, so I gave up on it. I bitterly regret not trying fecal transplant with other donors, and that I didn't think of doing a Miralax-type prep to empty my digestive tract. I also bitterly regret not trying the triple antibiotic treatment.

It's hard to think clearly when your suffering from UC. Get somebody smart  and savvy about medical issues to help you.

It's too bad the medical system in the USA sucks. You won't

be able to get colonoscopy-assisted fecal transplant here. Go

to Centre for Digestive Diseases in Australia if you can.

 

Posted 7/22/2011 2:36 AM (GMT 0)
Have you tried any alternative treatments such as diet, probiotics, fecal transplantation, ...?

I would give those a try first before opting for surgery. But if those didn't work, then yes I'd get surgery. Many have had good results with surgery.
Posted 7/22/2011 2:43 PM (GMT 0)
Did you try Remicade? It was exactly what I needed.
Posted 7/22/2011 5:28 PM (GMT 0)
If I get to the end of the line for meds and I am bleeding and pooping uncontrollably and done everything I possibly can, I will go for the jpouch. However, I wonder if I am just wasting my time and my health (the meds make me feel crappy) and should go for it sooner rather than later. I know the surgery can have it's own problems.
Posted 7/23/2011 2:07 AM (GMT 0)
Reverant

I was pretty much in the same boat as you I am 22 and was just really sick for a long time and no meds were working. Relying on high dose prednisone is pretty much what made my decison for surgery. I put it off for about a year after the first talk of surgery but then I started getting infections from the steriods and ending up in the ER the doctors told me I either have my colon removed or would most likely die from infections soon. I ended up getting a complete colectomy with an ileostomy on May 2nd.  It is much better to get it as an elective surgery than an emergency because the risks are much less.

Not going to lie surgery was really hard for me, very painful and scary. It took me about 2 months to feel myself again. But having a home care nurse and ostomy nurse come to my home was really nice and helped with the healing. I mean having a stoma is weird and will take time to get used to, but you will, I named mine Stella. Some days are good some days I hate her. Changing the bag is somewhat of a process but just like everything else you will get used to it. I have it 3 months now and have never had an accident or anything bad happen with the bag in public or at home. My friends look at me and forget that I even have it. Clothes still fit the same, you just have to find little tricks to hide it and work it into your life.  I've even been in a swim suit this whole summer and no ones noticed.

Physically I feel better than I did before, I was always weak and relying on the steriods to make me feel human. Now I have more energy and am able to do things that I couldnt before. I'm still not at the point to do any Ab work but I can workout, do cardio and weights, bike ride, swim. You can really do anything you could before, I hope this helps and I wasnt just rambling!

 let me know if you have any questions.

 

Posted 7/23/2011 5:41 AM (GMT 0)
I'm sorry you've had to ask this question, but have hope! Surgery is scary, ouchie, and no fun, but afterward is the reason you are doing it! You will regain your life! I'm of the opinion that if you are considering surgery, you should just do it. If it pops into your mind it means your quality of life is pretty dang low and the surgery will fix that. I just had my take down 5 weeks ago. I had 3 procedures, which all started with a perforated colon and no choice left but to have it removed. 10 months later I feel fantastic! I had 4 years of hell before i was forced into surgery and i'm glad it was forced on me. You will be able to do everything you did before, everything. If you post this same post on the ostomy board you'll get lots of great feedback about how great the surgery made people feel. There are some scary posts over there so don't read too much and freak yourself out. Most people posting bad things are anomalies. most people don't have major issues other than some leaks or maybe a yeast infection. And J-pouch is 90% successful with 5 % of the failures being misdiagnosed Chron's so really is 95% for actual UC people. So either way, good odds!

Some goods - no more bleeding, more engery, I can eat anything I want, I can work out, I can work, I can sit through a whole movie. no more pooping all the time or throwing up. No more meds, or regular dr visits. in general no more freaking out with worry. etc etc I could go on forever.

some bads and what to expect - surgery is no picnic. It takes a long time to fully recover and you have good days and bad. You have to learn to measure time in weeks rather than days. You will have some physical limitations at first, like how much weight you can lift and you'll be tired for awhile, but after 1 to 2 months you'll be pretty close to normal again. You'll probably have leaks and some pouching issues at first. everyone does. But you'll try different pouching systems and find the one that works and then, you'll all the sudden, forget about the bag, and it will become like second nature. (My moment of first forgetfulness happened about 7 weeks after my surgery) You'll have body image issues at first too, but as I just said, you get used to it. The bag becomes just a part of you. I wore a sexy tight black dress 4 months after my first surgery and I didn't think about the bag at all unless I was emptying it.

You won't regret surgery after you've recovered. You may have moments where you go, what did I do?!!? at first, but once you feel like a normal person again you'll be glad for the decision. Good luck to you and I hope this helps!
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