UC, 20 yrs old, debating j pouch surgery after many failed attempts with basically everything

My name is Kyle Thomas and I was diagnosed with UC my senior year of high school in 2010, since then I have tapered off of prednisone countless times, only to get to 10mg< and then flare up again. I take remicade as well but I am almost positive that is doing nothing for me, and imuran and lialda have had little or no effect. I take hydrocortisone enimas for extra relief but it obviously doesn't heal the disease. After what will be 3 years in february, I am contemplating having the jpouch surgery because my GI doctors both continue to tell me that it is dangerous to stay on prednisone for too long. I feel like the surgery would help, although i know there is still a risk of pouchitis. If there is anyone who can reply to this with any advice, whether it be about the surgery, dietary or anything else that may help, I would greatly appreciate it.

-Kyle

You say you have tried everything? Have you tried LDN. I just added to a post I have https://www.healingwell.com/community/default.aspx?f=38&m=2099301 and saw yours. This is on nasty disease. May you be blessed with finding relief.

Hi Kyle,
I had j pouch surgery 2 years ago and I am really happy with my results. I went thru the laundry list of meds too including Remicade....nothing worked. I tried a few different diets...they actually made me worse. I even tried acupuncture....I was desperate. Of course looking back now I wish I skipped about half that stuff and just had the surgery sooner. I wasted a lot of time. My kids were little at the time of my worst UC flares so I missed out on so much with them. I still beat myself up over it. I also have two family members with j pouches...my sister and my uncle...and they have done great with it as well. If you have any specific questions, I would be happy to try and help you with them. :)

I agree with the others. It may be worth trying alternatives, but in reality, surgery may be the best and only real solution. What I would do if I were contemplating surgery is go and meet face to face with some surgeons and see how you feel about the procedure. You may be able to meet and speak with some past patients who can give you advice and direction. Make sure you find a very experienceed surgeon. It's not easy to come to terms with having surgery but I've seen so many people who have been through it without regrets. In my opinion long-term prednisone the worst thing for you!

Hi TheKIT113,

This is awesome with people sharing their experiences with surgery. The one thing I notice from the advice here is that people who have "tried everything" usually have not tried LDN.

I just read another post and wrote a reply and refer another interesting post:

I am not sure why so many people have not tried LDN before taking extreme measure which I consider Remicade and surgery. I have had incredible results with the LDN. I was unable to find any downside to this drug. There is a lot of research going on with it currently. It hasn't worked for everyone, however, there are many, many, many success stories. I was just reading a post for someone who because of the combination of kidney cancer and UC had a very limited choice of paths. Their GI, reluctantly, prescribed LDN and then UC remission. Interesting read https://www.healingwell.com/community/default.aspx?f=17&m=2429828

What do you have to lose, your colon?

Try LDN!

soystud said...
keep the original plumbing, get off the pred, try EVERYTHING (LDN and other suggestions) -

if that doesn't work after 6 months, visit the knife man -

good luck -

or you can...

1. get of predinsone
2. visit the knife man
3. then try LDN and be amazed on how well it works. No blood.

LOL, j/k.

mindoverbutter said...
Try the SCD diet (www.breakingtheviciouscycle.info)

I second that. SCD brought me relief. You can also try variations of SCD/Paleo/GAPS.

I'm basically through all the treatment which is available on the market (except LDN) so I was thinking about surgery as well.

Andrina,

I am curious why you have not tried LDN?

This topic is relevant to my interests.

I have Crohn's, as it so happens, but I'm also seriously thinking about getting a pemanent ileostomy (no j-pouch option for me, unfortunately). I have not tried LDN, but I do have one observation to make about it: I have not seen even one person on LDN who is not also on a very strict diet and supplements. When colons start being saved by LDN alone, then I will be more impressed by it. Whatever you think about Remicade, it has, on its own, brought back people from the brink of surgery.

Diet: definitely worth a punt, if you do not mind giving up grains, sugars, etc. and do not mind staying on such a diet long-term either. Me, I won't or cannot do it. That's just me, stubborn all the way to the operating table. What else can I say?

Kyle,

I think it is going to be quite different for most when it comes to diet. My diet stayed the same once I was diagnosed with diabetes. The thing that I stayed away from which seemed to make things worse was fresh vegetables. Seemed that my body had to work harder to digest these types of food. My colon just needed the opportunity to heal and I tried to give it a lighter duty cycle.

I have been in remission coming up 2 years in November. I do not avoid anything in particular other than trying to control my portions and combinations of food because of the diabetes. I break my diet periodically for some pie, cookies, cake and ice cream but on an irregular basis.

I think the reason for the diets, besides common sense, is that we all realize the part of the body we are dealing with is where the food passes through, thus it only makes sense that we experiment with food. I for one was experimenting with diet prior to discovering LDN so I just continued down the path. I think most of us that have been successful found LDN after starting down this path. I suppose it would be interesting to know if there was anyone who tried LDN out of the gate.

Bottom line, NPI, is that LDN gave me my life back. If it was because of a combination of LDN, diet and probiotics then PTL for the revelation.

Try LDN and diets and probiotics and common sense. I also stopped all alcohol through my ordeal. By the way I drink every once in a while now, some beers and tequila.

Get better!

Hi Kyle,

I haven't been on HealingWell in a very, very long time.

I'm sorry you're struggling. There is no best option that someone can give you. In the end it is your choice. But I can give you my perspective. A little background on me. I was diagnosed with UC at 15.5 years old and had 3 major flares in a year and a half. I tried all the medications, but in the end was deemed steroid dependent. I opted for J-pouch surgery when i was 17 years old (the summer between 11th and 12th grade). I had a 2-step surgery. I had the temporary ileostomy for 4 months (could have been 6 weeks, but I didn't want to miss anything big at school). Now I'm 21 years old and doing great. I have had small bouts of pouchitis. But with probiotics and a few medications to get it under control, it hasn't stopped me. I love not having to worry all the time about feeling sick, or wondering where the bathroom is, or wondering when my next flare will be. I have had the college experience that I'm not sure I could have had with my UC. Even with my pouchitis, I still feel surgery was the best decision I could make.

IF you decide to have surgery, I would "shop around" for a good surgeon. I started looking for a surgeon about a month into my Remicade treatments, when I realized it wasn't really helping. Since I was 17, I technically was a pediatric patient. We went to a pediatric surgeon but he wasn't specialized in colorectal surgery. I liked him, but something felt off. I ended up going to an adult colorectal surgeon who has done numerous j-pouch surgeries and was a better fit. He was a great surgeon and talked me through everything. He even did his best to make my incision decent (I had an open surgery, not laproscopic). 4 years later and my scar (which I happen to love) is fading.

You really need to sit down and decide if you are ready for surgery. It's a big surgery, and a lot of recovery. They cut through abdominal muscles to remove the colon, and that's no walk in the park. The ileostomy is an adjustment, but not bad. When reconnected, there is butt burn and lots of cursing (at least for me)! But it does get better. I'm definitely one for surgery, but again, it is a big decision and not one to be made lightly.

*end my babbling*

Hope I helped a little. Welcome to the board! I hope you find comfort in it like I did when I needed it the most. The people on here are full of useful information, and never be afraid to ask! Good luck!