Anyone with Ulcerative Colitis

[figmentswife]

This morning his pain seems better, be has hasn't been eating so that could be why. We are headed to the dr. In about an hour and I have my notebook with questions ready.

Funny... He is also on the dis and looked up ulcerative colitis to see if anyone on the dis had it and the first thread was mine. He looked at me and said " you wrote about me" I said "yep"

I guess it's a good thing I didn't say anything bad about him. Hahaha.

[Disney Doll]

If he is not completely honest with the doctor, the doctor cannot properly diagnose and treat him.

He is in a certain amount of denial regarding having a chronic illness, which is understandable. It is his choice what he wants to share or not share with his MD, but then you & he must understand that the MD is working with the information she ahs at hand. She is not a mind-reader so if she is not told something she will have no way of knowing about it/treating it.

[The Mystery Machine]

Originally Posted by figmentswife

I guess I felt brushed off by her back in 2010 and i haven't been to the dr with him since however I have to say that he wasn't being totally honest with all of his symptoms and how bad things were at the time either so it may not all be her fault. I do plan to have a long talk with her and see how things go otherwise I may ask him to look at seeking a second option. We have talked about it and he will if we don't fell good about things after his appt tomorrow.

When I say he wasn't being honest about everything I mean he would have a really back 2 weeks then make an appt and he would not give her all of the details. Example: I had to call her one time about 2 days after an appt because he needed to be hospitalized. When I called in a panic about his symptoms she was confused saying she had just seen him and he made it sound like he was doing better.

I don't know if he gets nervous about talking to her and what but it drives me crazy. Like at the hospital today he is telling me how bad the pain is and other symptoms but them the dr walks in and he is like oh it's not bad right now only a pain level of 5..... I am like REALLY.... 2 minutes ago you were almost in tears and now you play it cool for the dr?

I feel stupid speaking up with the dr in the room and it looks like I am treating him like a child, but I don't know what else to do. Back in 2010 I had to scream and yell at him to go to a specialist and eat better, like in a flare he would eat cheeseburgers everyday then come home upset about his symptoms.....

It's like he doesn't take his health seriously, at least that his how it feels. In this flare up he will have a bad couple of days so he will eat better then when he has 1 good day he thinks he can go crazy with bad food. Uggggg. I feels like he is another child and it is driving me crazy, but at the same time I feel so bad for him because I see what it is doing to his body and ego.

Thanks for the help.

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!

[HeatherC]

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!!!

[CoP Luv]

Originally Posted by tweety38

My husband has had this for at least 30 years. He has been on a diet called The Specific Carbohydrate diet for over a year now and takes lots of vitamins. He is sooooo much better. He was in and out of the hospital for 1 and 1/2 years prior. Good luck.

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.

[figmentswife]

Originally Posted by The Mystery Machine

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"

Originally Posted by HeatherC

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

Originally Posted by CoP Luv

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]

Originally Posted by 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.

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]

Originally Posted by 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.

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]

Originally Posted by CoP Luv

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.