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Old 01-14-2013, 07:20 PM   #31
figmentswife
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DH has been researching the specific carbohydrate diet and even downloaded a sample a little while ago. I also have been reading reviews from many different sources and I am not convinced it will work. I do however believe that food has got to have something to do with it, even though every dr says no true.

DH developed some bleeding this afternoon that he hasn't had before and I called the dr on call, it isn't much and his pain is almost gone so as long as there is no more we will treat here at home. We have started him on a liquid only diet for at least the next 24 hours and hope that the bump back to 40mg of steroids calms things down.

DH is reading this thread also and is liking the ideas. He says thanks for the help. (I told him to type it himself under his own I'd, but he won't)
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Old 01-15-2013, 12:31 AM   #32
Cinderella94
now and then i have to remind myself how extremely hot it gets in those things
Why do all of those sound like they could've come out of my mouth
 
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Originally Posted by figmentswife View Post
He would only have the bag for about 3 months then they would do another surgery that they would take part of his small intestine and basically make a new colon sac( I am saying it all wrong but they is the basic explanation)

As for the gluten thing... He was GF for about 3 months with zero difference, however for me I felt better within 3 days. Also know that you will get better then not so after a few months because of small amounts of gluten in your system or cross contamination. I am almost a year gluten free and I have my body back and I feel better than I have in 6 years.
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It's called a J pouch. It would take 2 surgeries and DH has been reading a bunch of blogs for the past 2 hours. I am so proud. He read the info on the Humara is says it scares him. I asked what he would tell the dr right now if she asked and he said the J pouch surgery.

Funny thing is that Humara and remicaide are almost identical in side effects and he is already on the remicaide and has done fine.

We will see what happens next week after his test.
Yep, I had this exact surgery.

I'm 18 now, was diagnosed with UC at 14, and had colectomy at 16.

When I was diagnosed at 14, I was on steroids initially and then 6MP for about a year and a half. Then, 6MP stopped working and I was having a really bad flare. Tried Remicade a few times, but made no difference at all. Surgery was the only option.

I had my first surgery in November, which is when I got the ostomy bag. I was 2 days away from being able to leave the hospital post-surgery when I had a complication and had to have surgery again. I ended up spending the next 9 weeks in the hospital. By the time it was all said and done, I had the bag until May. Honestly, the time between November and May was a living he**, and ultimately my surgeon wasn't sure if he'd be able to do the "reversal" and pull my small intestine down. (The j pouch was already made, that wasn't the issue).

Since then, though, my life has improved sooooo much. No more worrying about flares, or prednisone and it's side effects, or if eating something will upset my stomach. It's like I'm completely normal. So even though the process totally and completely sucked, I always tell people that in my experience, it was completely worth it.


ETA: In regard to diet: when I did still have my colon, my GI always told me that certain foods could make flares worse, and I would learn what to avoid, but no food could cause a flare.
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Old 01-15-2013, 12:51 AM   #33
Mau Loa Disney
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Hi,
My DH had UC and then colon cancer so he made the decision to get the Jpouch after much research and a 2nd opinion( drs said his colon cancer would come back and if it wasn't caught in time the Jpouch wouldn't be an option) He is happy with his decision, but recovery wasn't easy and he hated wearing the pouch but it was only for 5 months. The take down surgery recovery was much better and it saved his life. He can actually gain weight and not always worry about a bathroom being close by.

He probably wouldn't have had the Jpouch surgery without the risk of cancer returning. He always tells others thinking about Jpouch to talk to another Dr get their opinion. He actually started using VSL #3. He says it really helps him and he wished he would of started it before having surgery. Please look it up. He takes the packets not the pills. I suggest trying it out for a couple of weeks.. DH got his dr to write him a prescription.

Sorry I'm rambling its late and I'm typing on my mobile... If you have questions . Please ask.


PS take care of yourself too. I know how hard it is seeing
your DH sick.( My DH could get pretty moody) oh I usually did all the talking and asking questions and telling the dr what I researched on the internet



Cinderella94- I believe you talked to me the day my DH
Was in surgery have you tried VSL#3? My DH loves it
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Last edited by Mau Loa Disney; 01-15-2013 at 12:57 AM. Reason: Add Cinderella94 ?
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Old 01-15-2013, 01:06 AM   #34
Cinderella94
now and then i have to remind myself how extremely hot it gets in those things
Why do all of those sound like they could've come out of my mouth
 
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Quote:
Originally Posted by Mau Loa Disney View Post
Hi,
My DH had UC and then colon cancer so he made the decision to get the Jpouch after much research and a 2nd opinion( drs said his colon cancer would come back and if it wasn't caught in time the Jpouch wouldn't be an option) He is happy with his decision, but recovery wasn't easy and he hated wearing the pouch but it was only for 5 months. The take down surgery recovery was much better and it saved his life. He can actually gain weight and not always worry about a bathroom being close by.

He probably wouldn't have had the Jpouch surgery without the risk of cancer returning. He always tells others thinking about Jpouch to talk to another Dr get their opinion. He actually started using VSL #3. He says it really helps him and he wished he would of started it before having surgery. Please look it up. He takes the packets not the pills. I suggest trying it out for a couple of weeks.. DH got his dr to write him a prescription.

Sorry I'm rambling its late and I'm typing on my mobile... If you have questions . Please ask.


PS take care of yourself too. I know how hard it is seeing
your DH sick.( My DH could get pretty moody) oh I usually did all the talking and asking questions and telling the dr what I researched on the internet



Cinderella94- I believe you talked to me the day my DH
Was in surgery have you tried VSL#3? My DH loves it

Oh, okay! I'm glad he's doing so well now!
My doctor has recommended it to me post-surgery and I only recently started taking it. She says it will take a month or so to really build up in the system enough to work, and I'm still inside that window.

And I totally agree with your DH: wearing the bag was miserable. I know some people have to have it for their whole life, though, so I know I was lucky. And thank God for my parents because they were the ones who learned how to change the bag and everything that goes along with that--there was no way I could have done it unless I absolutely had to.
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Old 01-15-2013, 01:16 AM   #35
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Originally Posted by Cinderella94 View Post
Oh, okay! I'm glad he's doing so well now!
My doctor has recommended it to me post-surgery and I only recently started taking it. She says it will take a month or so to really build up in the system enough to work, and I'm still inside that window

Cinderella94- praying it helps you as much as DH

Figmentswife- we found the VSL 3 while researching after
Dh's surgery but it says its for UC. DH went back to
Dr and asked him to tell all his patients about it..I know
Things don't always work for everyone, but worth a try
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Old 01-15-2013, 10:45 AM   #36
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Quote:
Originally Posted by figmentswife View Post
DH has been researching the specific carbohydrate diet and even downloaded a sample a little while ago. I also have been reading reviews from many different sources and I am not convinced it will work. I do however believe that food has got to have something to do with it, even though every dr says no true.

DH developed some bleeding this afternoon that he hasn't had before and I called the dr on call, it isn't much and his pain is almost gone so as long as there is no more we will treat here at home. We have started him on a liquid only diet for at least the next 24 hours and hope that the bump back to 40mg of steroids calms things down.

DH is reading this thread also and is liking the ideas. He says thanks for the help. (I told him to type it himself under his own I'd, but he won't)
I was in the exact same boat as you in regard to not believing it would work. But then I, who has no colon issues at all, had a really bad stomach ache after eating something. So yes, food and the gut, are related. Even the non-doctor could see that.

I was more concerned that we would be able to keep up with all of the changes. At the time we were researching the diet, DH was in the middle of a flare up and was nervous to eat, go out, or really do anything. We bumped up the steroids and after a few months of feeling better and weaning off of the steroids, we started the diet.

I'll admit, it wasn't easy at all. But then, if it was easy, then more people would stop eating convenience foods. Even the research shows that there will probably be a mini-flare at about 2-4 months into it. That happened with DH, but he was determined to get through it. Even our extended families have learned to cut out some "bad" foods and eat more healthy. 3.5 years into it, and it's a way of life for us now.

Best of luck to you and your DH. It was/is so hard to see my DH sick and hurting.
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Old 01-15-2013, 09:17 PM   #37
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I am convinced of a food/flare relationship. When I was diagnosed, the Dr told me to go low fat/somewhat high fiber. Up to then I was told to eat foods that had a lot of calories, they tended to be high fat. Needless to say I was getting really sick. There are also foods that are just a trigger for me (milk in particular).

Good luck to all. Find what works, stay current in case it stops working, develop a good relationship with the doctor!
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Old 01-15-2013, 10:12 PM   #38
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I have Crohns, but am admittedly not overly educated on UC.

Is Cimzia a possibility? I started on Remicade, lasted 2 years. Moved to Humira, lasted another 2 years. Now on Cimzia. All the same type of drugs, all the same potential side effects, but work really really well on me.

{in between Humira and Cimzia I had a resection; I was flaring again before I returned to work after the surgery so I started on Cimzia}

IBD sucks. I'm sorry that so many of us are dealing with it
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Old 01-16-2013, 05:53 AM   #39
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This flare is really been bad. DH has not been able to keep in anything for the past 3-4 days. He has been doing lots of research about all options and he is saying that if they find next week that the remicaide is not working he wants to do the J Pouch surgery.

Also he has been a on a low fat diet for a while, with a few bad choices here and there, but for the most part low fat.

I hate seeing him suffer. He is kinda excited about the idea that when all the surgeries are done he will be cured. No more medicine, no more infusions.... Just cured.
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Old 01-16-2013, 11:01 AM   #40
Cinderella94
now and then i have to remind myself how extremely hot it gets in those things
Why do all of those sound like they could've come out of my mouth
 
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Quote:
Originally Posted by figmentswife View Post
This flare is really been bad. DH has not been able to keep in anything for the past 3-4 days. He has been doing lots of research about all options and he is saying that if they find next week that the remicaide is not working he wants to do the J Pouch surgery.

[snipped by me]

I hate seeing him suffer. He is kinda excited about the idea that when all the surgeries are done he will be cured. No more medicine, no more infusions.... Just cured.
Honestly, that's the point that I got to when we decided that I needed surgery as well. In and out of the hospital every few days, needing transfusions, my colon not absorbing any of my nutrients from food or water by mouth so had to have IVs.

And (in regard to the second part of my quote) that is exactly how I feel after having had the surgery. The process is miserable, but after it's over, it's such a relief. No more worrying about any of it.
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