Anyone with Ulcerative Colitis

[figmentswife]

I am not dealing with what you are however my dh just had a heart attack and a triple bypass.

I am the one talking and filling in the gaps. I know it feels like he is a "child" but remember he cannot speak for himself 100%, esp. in pain and on pain meds. It gives you memory gaps.

So DO NOT be afraid to take charge of the situation. Granted my dh wants me to speak for him.

My dh is a hostage. He can't drive anywhere and I am making his food and he can't smoke. I am trying damn hard to make his lipid numbers better when he goes for the lipid panel blood draw in a few weeks.

Many hugs!

Thank you, and Yes, I too feel like his "keeper"

I have microscopic colitis (lymphocytic). Was diagnosed about 15 years ago. Up until recently, I have managed it pretty much by diet. But over the holidays, I had a terrible time and have decided to try a gluten free diet.

In researching this, I have been finding that glute is in everything and is now starting to be linked with many auto immune diseases.
Since they really don't know the causes, I kind of tend to believe our diets may play a very important role in it.

There is a wealth of information on a microscopic colitis forum board called perskyfarms.com. The people there are very helpful and can probably give you better advice than I.

There is a lab called ENTEROLAB that tests for gluten, dairy, soy, egg sensitivities via a stool test. It is more accurate than a blood test. It can probably give you a definitive answer on what foods your dh is sensitive to.

I JUST started eliminating glute only three days ago and cannot believe the difference already. I was SEVERELY bloated with either C or D all through the holidays and had a very hard time functioning. In three days, my bloating is almost completely gone and I am going to the bathroom like a normal person. That has not happened in fifteen years!

I am certainly not saying this is what is affecting your dh. But maybe trying it
for a bit and really researching the gluten connection may help him gain some answers and much deserved relief.

Hope this helps!!!

I have Celiac disease and we did try gluten free for him 2 years ago but it did nothing for him. But thank you for the information

THIS!!!!!!!!!

Things that have helped DH:
1. Specific Carbohydrate Diet - a lot of work, but worth it!!!
2. Managing Stress
3. Daily Meditation

DH has had UC for the last 10 years and his doctors were pumping him with so many meds that he couldn't see straight. They said the only way to treat it was with medication. Diet had NOTHING to do with the gut. This came from the top GI doctor in the country ( who now leads seminars on diet and the gut and how they relate. )

About 4 years ago he came off of the steroids and immediately went into a flare. It was so discouraging to him. They put him on Remicade but it did nothing. After a few treatments, he came off of it. Once he got his flare down, we found the Specific Carbohydrate Diet and it has been a LIFESAVER!!!!!!!!!!

He was also a high stress individual (and in denial about it), until I literally pulled up physical issues that could be caused from high stress. He had almost all of them (high Cholesterol, intestinal issues, potential for heart issues, etc.). That was a huge step for him to realize the changes that he had to make in his life.

He bought Stress Management for Dummies and was on his way. Now he is really interested in the psychology of the brain and how people manage certain things. He has learned how to meditate by himself and that seems to work really well.

He is still on a lot of medication, but now that he has been flare free for almost a year (knock on wood), hopefully he will be able to reduce a little bit.

He is in a little bit of denial also.

 

[figmentswife]

We went to his Dr. appt and I will say I was very pleased with her, DH not so much, but with her I was pleased. He did his normal, oh,I am fine now, it's no big deal. I had to tap his leg and say...Please be honest with her or she can't help you. He did finally open up more about his concerns but kept refering her back to me for more information. I think he is just so upset and still has some pain meds in him, so that could be part of it. I also thing part of it is that he kinda shuts down when he goes in, because all the news wasn't great.

She said she thinks that either the remicade is no longer working or that he may need a higher dosage. He will go in for some blood work next Tuesday to check that out (he has to be at the 4 week mark since last infusion, and that will be next tuesday). She really made us think that the remicade has now failed and told him that he will have 3 options if so and that he will need to make a decision in the next week as to what to do next. Those options are:

1) Try Humara - same class of drug, but different biology
2) Try a clinical trail - 2 of which she gave us information on
3) remove his colon - which would sure his disease

He doesn't know what he wants to do yet, and I am hoping that he will start doing research ASAP. I do know that he has said NO to any clinical trail, so we are down to 2 options. Hopefully he will start researching soon so that he will know what he wants to do. My vote is to go ahead and remove - then he will be cured.

If anyone is has had this done and is willing to talk to him, please PM me.

Thank you for all of your help.

 

[HeatherC]

Just curious..how long did he try gluten free? I have read that in some people it can take over a year to see results. And if he is sensitive to others like dairy, eggs or soy, he would still be having the same problem even after cutting out the gluten.

Maybe ENTEROLAB could at least narrow down what is affecting him?

So sorry you are both going through this.

 

[tar heel]

UC is very common in my family, so I know firsthand how awful the disease is. That being said, I would try absolutely everything before I did an ostomy bag. My dad had one for five years. It's not an easy thing for the patient or his caregivers to deal with.

 

[figmentswife]

UC is very common in my family, so I know firsthand how awful the disease is. That being said, I would try absolutely everything before I did an ostomy bag. My dad had one for five years. It's not an easy thing for the patient or his caregivers to deal with.

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.

 

[figmentswife]

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.

 

[AmericangirlinFrance]

Please consider finding a new GI doctor if your husband's doctor is not responsive to your concerns or you feel like she is not being aggressive enough in her treatment. OR, at least consider seeing another doctor to get a second opinion. It can't hurt!

I don't have UC, but I have some other GI issues, and I could not deal with them without my wonderful GI doctor. His willingness to work hard to solve the problem - including getting me in to be seen when his schedule is full, returning phone messages, a helpful office staff, etc. - has made a huge difference.

I always leave my appointments with him feeling optimistic about my health because of his positive bedside manner. Not that bedside manner is everything... but I think it's important to have a competent doctor. GI issues can really destroy your quality of life.

 

[CoP Luv]

UC is very common in my family, so I know firsthand how awful the disease is. That being said, I would try absolutely everything before I did an ostomy bag. My dad had one for five years. It's not an easy thing for the patient or his caregivers to deal with.

I also have to agree with this. DH's GI dr. also suggested other meds, clinical trials, or surgery as the only options.

I am so thankful that we found the Specific Carbohydrate Diet and did NONE OF THEM. The diet is like going GF except so much more. It was very intimidating at first, but once you decide to remove the "convenience foods" (which are full of chemicals anyway) from your life, you will be so much more healthy.

DH never thought he could have "regular" food again, but eats much better than most people, all while healing his colon at the same time!!!

Try reading Breaking the Vicious Cycle or comfybelly.com.

 

[Jewel3k]

I also have to agree with this. DH's GI dr. also suggested other meds, clinical trials, or surgery as the only options.

I am so thankful that we found the Specific Carbohydrate Diet and did NONE OF THEM. The diet is like going GF except so much more. It was very intimidating at first, but once you decide to remove the "convenience foods" (which are full of chemicals anyway) from your life, you will be so much more healthy.

DH never thought he could have "regular" food again, but eats much better than most people, all while healing his colon at the same time!!!

Try reading Breaking the Vicious Cycle or comfybelly.com.

The diet is worth trying. It made my husband more ill and we had to stop. Except for nuts and popcorn his flares are usually not related to food. Crazy as it seems they seem to be seasonal and a result of ibprofien and aspirin products. He has done a lot of research and emailed people about losing their colons. The return to life even with the bag or pouch issues is deemed worth it. You guys will figure out what is right for him. I hope he is feeling better soon.

 

[TLuvsD]

I participated in a clinical trial and would be happy to talk about it...not much help if that is not an option he is considering, but it's all I can offer.

Low fat diet, and stress management have really made a difference for me.

 

[figmentswife]

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)

 

[Cinderella94]

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.

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.

 

[Mau Loa Disney]

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

 

[Cinderella94]

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.

 

[Mau Loa Disney]

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

 

[CoP Luv]

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.

 

[TLuvsD]

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!

 

[Aimeedyan]

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

 

[figmentswife]

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.

 

[Cinderella94]

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.