Community Forum

 Reply posted for shadowbox.

Hi, 

I am 15 and I recently finished recovering from my j-pouch surgeries a few months ago. I was diagnosed when I was 14, and I continued to struggle with my disease for a year until I finally opted for the procedures. I tried everything, Pentasa, 6MP, Remicade, steroids, but nothing could manage my disease. I was in the hospital for the entire summer, and when I finally got out after 7 weeks I was back there within 12 days. If your brother is able to eat regularly and live a relatively normal life, then I would recommend he take his time with the decision. For me, I really had no other options left. I was missing everything in my life I felt like everything was over for me at only 14. Surgery is a big decision. It is a huge adjustment, because you now have to get used to having an ostomy bag. In the end, whether or not your brother has surgery comes down to him. He has to think about whether he's happy with the quality of his life, if he can eat what he would like, go out without too much worry about where the nearest bathroom is, and overall whether he could live another 10 years the way he's living now. No matter anyone else's opinion, it's really up to him because it's his body, his life, and his struggle. He's the one who has to go through it. Even though I had surgery to get better, I still had to miss my freshman year of high school due to recovery time. My disease took a lot from me, and the decision to have surgery was my way of taking back control and trying to feel better again. It was one of the best decisions I've ever made in my life. Now I can eat what I want, whenever I want, and I go about 4-5 times a day, which a massive improvement from 25 times. I had my ostomy removed, and now I can finally live my life again. I wish your brother all the best, I hope that he is happy and healthy, and that he recovers quickly from whichever treatment he decides upon

Reply posted for TobyBiery.

Thank you for this info, Toby. My recent colonoscopy showed multifocal dysplasia and I've been told the protocol is removal of colon and then adding j-pouch. Very nervous and have 2nd opinion tomorrow and a 3rd next month. So major when growths are precancer. Seems like a more extreme treatment than cancer, where they do a resection. 

Its helpful to hear you have energy and strength after both surgeries.Can to tell me what the recovery process is like for both of them?

Reply posted for amna rashid.

Surgery was the best decision for me.  I was diagnosed with UC back in 1995, I took a simple drug, sulfasalazine for years but it ended up becoming ineffective in 2009.  I tried prednisone and the remicade infussions and 6MP, none of it worked.  It got to the point I was wearing diapers for the last year prior to my surgery.

I had my colon completely removed and had the J Pouch surgery.  It only took a couple weeks to get used to using the ileostomy bag.  After three months I had the 2nd surgery to remove the bag and reconnect the small intestine to the pouch.  I have been living a normal, active lifestyle again, I feel healthy again. 

I'd recommend the surgery to anyone who is thinking about it.  It has done wonders for me.  I have my strength back, I have my quality of life back, I'm able ride my mountain bike again.  I'm happy again.  I hope this helps anyone that might be on the fence. 

Reply posted for healer.

Hello, to the person saying that yeast causes UC & Crohns: I wish you would find another venue to tout your B.S. Many of the people are desparate and you throwing out unproven c*%p like this does not help them.
Dave

Reply posted for Deneen J.

I had the surgery, a complete proctocollectomy (total removal of the colon) with a   Jpouch, which is made out of the small intestine and when it heals, (3-4 months) serves to collect the poop.  So I pass waste like a normal person. Had a colostomy while it healed and hated every minute of it.  You might want to look into it.    Go somewhere where they do that surgery all the time and check out your surgeon's track record.  There are no easy answers here.  After UC, I got Crohn's, which is awful as well, but for me, the UC was worse.

Reply posted for amna rashid.

I am a 51 yr old female with Crohn's disease for the past 30 yrs. I was diagnosed in 1988. I have had 3 resections. The last one was a disaster. After being cut in the same place for 3 other surgeries, (2 resections n 1 c-section) my dr cut me again in the same place. The site became infected immediately. They removed all the staples n the incision healed wide open like a football. I had a huge hernia for the next 5 years where everyone I met asked when I was due n if I was having triplets!!! It was horrible!!! Finally in '08 I got pregnant n when I had my second c-section, they repaired my hernia. Throughout all my years with Crohn's, I've suffered from chronic diarrhea. I never use the bathrooms when I'm out Bcz I'm embarrassed. I can control it better now then before I was diagnosed, but it's still very hard. It's embarrassing using the bathroom at work n at friends houses. I was just diagnosed with colon cancer. I had a colonoscopy in Nov which showed nothing, but now just 7 mos later, its there!!! My recourse, total removal of all my intestines n rectum or leave rectum n a foot of sigmoid. Which would have me running to the bathroom every 1/2hr n never leaving home again. I'm terrified. The surgery will b long n tricky Bcz of prior surgeries, scar tissue n mesh from 2 hernia repairs. So what do I do? How is life with a bag? I'm not even sure of the proper terminology. Do I just have the area of cancer removed n live with the fear of it returning just to avoid the bag? Anyone with an opinion, who has had a similar experience, I'd appreciate some advice. Thanks.  

Reply posted for amna rashid.

Hello. I just joined this forum and this is my first post. I am 46 year old woman and I am at the point where I have had enough of the pain and bathroom visits of UC. I want the surgery for a bag now. I am also disabled so that makes life harder.

My problem is I am too low a weight for the surgery. But I can't gain the weight to get there! That is the first question anybody have this issue?

second when you had some kind of bag fitted did the pain go away? 

 Reply posted for amna rashid.

I was diagnosed with UC when I was about 15 years old, but I went into remission when I was in my early 20s.  At 30, it came back with a vengeance, and I eventually had a Koch Pouch when I was about 38.  At that time, the Koch Pouch was fairly new, and the failure rate was pretty high. The valve failed immediately after my first surgery, so I had it revised six months later.  That was about 30 years ago, and it has worked amazingly well.  I understand that many improvements have been made to the procedure since then.  Pouchitis," an inflammation of the pouch, can occur, but can be treated with antibiotics.  I do believe the period of remission I had in my 20s was most likely due to my use of marijuana.  When I went back to college at 30, the UC immediately returned.  Now that marijuana is legal in my state, I have used it pretty regularly and haven't had an attack of pouchitis in three years.  The only thing that will irritate my pouch is any kind of crunching exercise (like sit-ups) at the gym.  I would highly recommend the Koch Pouch surgery--the results are amazing.  It is a very major surgery, but the benefits make it well worth it, The trick is to find a surgeon who has performed many of these.  Don't go to someone who doesn't have a long record of successes.  Good doctors can be found online or by referral.  I also suggest talking to people who have had the surgery.  I found that very helpful and supportive.

 Reply posted for krb926.

UC is easy to fix once you understand what it is. Yeast in your intestines and colon are eating as much as they can to eat through your intestinal walls to give you UC. Ulcer colitis is when yeast enough of your intestines they cause bleeding ulcers and diabetes because they eat your stomach food too and turn it into diahrrea. Very dangerous parasites and critters. You cant detect them with blood tests. Or colonoscopy because the camera Id like taking a selfie with s 1200 pixel camera. Yeast is microscopic like amoebas and protozoa and the diagnosis has to be done by a lab that does yeast tests. If you cant get one done stop yeast products for a month like white bread youll. Have your answer. If you can get a lab test and save your life. At least youll know what the source of your problem is. You dont want your colon removed or any part of your body.

 Reply posted for amna rashid.

i had diahrrea 15 times a day. living *** no body knows what that means it what its like. you lose your life your job because you cant go to work in case you have an accident. chronic diabetes theres no warning or time to get to the bathroom. in the middle of traffic it hits in 5 seconds. if youre not wearing a mens diaper you end up buying a lot of new pants. i ate a loaf of bread a day with cold cuts thinking i was eating healthy. a voice came to me and said its the yeast giving you the diahrrea and i remember reading do not eat leavened bread. i stopped yeast and next day my diahrrea stopped and never came back once. its been a year now and not once. before i had any surgery i would recommend cutting out yeast and prove me wrong. they wanted to amputate my feet at the hospital and said i had diabetes. i told them ive been checked for diabetes all my life and never had it. the week before i was at another hospital close by and did a blood test. first words out of doctors mouth was well at least you dont have diabetes. they wanted to do surgery. i healed myself on milk lots -vegetable juice-no yeast and vitamins minerals and herbs and spices. thats all you need. cut out yeast youll. find your answer.

 Reply posted for krb926.

I am just about one month out from having my first surgery for Ulcerative Colitis. (a Total Proctocolectomy), I have a temporary colostomy and am doing well with it. I am still in recovery and will return in about five months to have the second surgery. If he is thinking that having a colostomy is going to be life changing, he should not worry so much. I had UC for almost three years and so I had a long time to consider surgery. Living with a colostomy isn't as bad as what I was thinking it would be. Yes you do have some changes at first, but there not big changes. And i would much rather have a colostomy for the rest of my life than deal with the complications of UC. It is so much less stressful now that i don't have UC, I don't have to worry about running to the bathroom 10-15 times a day. And all the other factors that go along with it, like medications, diet and everything else that goes with the disease.

If there is anything I could help with or you have any questions feel free to ask me

 Reply posted for amna rashid.

THIS IS SHADOWBOX'S ORIGINAL POST.
I think I accidently deleted it somehow.... I'm so sorry!

My brother has had uc for more than 15 years. It has been managed with prednisone and immune drugs. Recent flair required the start of Remicade. We are waiting to see if this helps. He is considering surgery to get off all the meds. If anyone reading this is post surgery, your input would be appreciated. Would you recommend it ?

 Reply posted for amna rashid.

THANK YOU Amna Rashid. Your story is very inspiring. I got sick in HS, too, my senior year and was in the hospital over Spring Break and didn't attend my graduation.

I have been living with my disease for 9 years now. I have tried to avoid medication by restricting my diet (SCD) and other holistic approaches. And I am now at the point where I want surgery. Which is crazy because I never thought I would ever want my colon removed and have always felt sorry for people who have. Now I envy them.

My flares don't hospitalize me anymore but they do limit me significantly. I want surgery because I have been dealing with urge incontinence for 6 years. Even when my stool is formed I have accidents. I haven't been able to work or go to school for these past 6 years.

To quote you, Amna: I am not happy with the quality of my life. I can't eat what I want. I can't leave the house without major anxiety (even if we have company at the house I have severe anxiety for fear of embarrassment and usually hide away in my room). NO, I cannot live another 10 years the way I am living now.

I want an ileostomy because I want to take back control over my disease. My disease controls me. And I am so weary of the ways my body limits me. I am depressed.

I do not want to take any more medications (I've been on prednisone, sulfasalazine, Lialda and am now trying LDN). I don't want an internal pouch (J or BCIR) because I don't want infections and antibiotics. I am convinced that the reason I developed this disease in the first place was because I was on antibiotics for a long time in HS for acne and it destroyed my gut flora (dysbiosis).

If anyone reads this who has lived with urge incontinence and can share your experience, offer me some advice or words of encouragement, I really need it right now.

krb926
Joined Dec 20, 2016