Anyone with Ulcerative Colitis

[figmentswife]

My DH was diagnosed with UC in mid 2010, it progressed very fast and he started remicade in December 2010. He had done very well until October 2012. In November 2012 they started him on steroids again and he can't seen to get off of them. Every time he gets down to 10mg, he starts having issues. Anyways. Things got so bad this week I had to take him to the hospital, they released him this afternoon with pain medicine and orders to see his Dr. tomorrow (he already had the appt, so that was good) I just don't know how to help him. I am not a huge fan of his Dr. She is a good Dr., I just don't like her personally but he does. Dh has a rare liver disease that caused the UC and has had 2 appendicitis's (yes, I said that, he had it removed back in 2002, and the "stump" removed in 2010) and a couple of other rare things happen. His Dr. never seems to remember these little details, that I think could have a huge impact on his health.

We are making a list of questions and such to take in the morning, but poor guy is so in and out on the pain med's I am doing a lot of it myself at this point.

What do we need to ask?
What has worked for others?


I also should include that his CT today showed his small intestines and colon are all swollen, so the steroids are not working. Also his last set of blood work there are a few things out a wack - WBC is high, liver panels high - but his Dr. wasn't concerned and told him that was normal because of the steroids. - Ummm, I am thinking that liver panels being high in a patient with a rare liver disease needs to be looked at (but I am not a Dr.)

How do I make sure she listens tomorrow. DH isn't very forceful, or forth coming with ALL information (he forgets) and he asked me to come with him and do the talking

Thanks for the help

 

[HappyHaunts999]

http://www.napolihealth.com/

I am so sorry to hear about your husbands struggles. My 17 year old son has UC. He was on a lot of medication when her first was diagnosed. He also has severe environmental allergies.We were very concerned because all his doctor
did was increase his meds and any side affects gave him more meds for that. I was not happy with my 13 year old on a ton of steroids. We found the above nutritionist and worked with him on diet and supplements. My son is no longer on medication for his UC. He takes daily supplements to keep things in check and increases some when he has too. I know each case is different but one thing I know for sure. If your doctor does not listen you and focus on your husbands entire medical condition it is time to find a knew doctor. We were told he would never be able to get off the medication and he would be on it for the rest of his life. We no longer go to that doctor. Be firm and make her listen. If you feel like she is just giving you the standard line please find someone else.

 

[TLuvsD]

I've had UC for about 26 years. I manage the mostly through diet, learning to manage stress reactions, and I take MSM daily (it's an over the counter supplement to reduce general inflammation). I do have a script for Pentasa, I take it if I need it (holidays, high stress situations).

I would be FIRM with the doctor. Ask for a complete review of your DH's medical history, remind the Dr of the items you have outlined. If you don't think the answers are appropriate, get a second opinion. I trust my doctor. Absolutely. If I didn't I'd replace him. He listens to everything that is going on medically, and in my life in general. He takes time to evaluate the whole situation. Seriously, UC is complex, and can be influenced by a lot of factors. If the Dr is not considering everything, something is being overlooked.
HappyHaunts999 thanks for the link, I may look into them...more information is always good.

 

[HappyHaunts999]

I hope it helps. I know everyone is different but and the supplements may not be enough for everyone but it made a huge difference in our lives.

 

[tweety38]

My husband has had this for at least 30 years. He tried the Remecade and it seemed to put him into a remission. He had a lump under his arm that he swore was caused by the Remecade. One of the side effects is Lymphoma. We were lucky it wasn't. 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.

 

[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.

 

[figmentswife]

My husband has had this for at least 30 years. He tried the Remecade and it seemed to put him into a remission. He had a lump under his arm that he swore was caused by the Remecade. One of the side effects is Lymphoma. We were lucky it wasn't. 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.

Wait he came off the remicaide???? We were told once on it the only way off his having colon removed???

 

[Janepod]

Wait he came off the remicaide???? We were told once on it the only way off his having colon removed???

My husband does not have UC, but has Crohn's. He was on Remicade for 6 years and has been off it for two (switched to Humira.) There is no talk of removing his colon (even though he has a severe blockage.) The Humira is working well for him.

Best of luck to your family. It's a terrible disease.

 

[figmentswife]

My husband does not have UC, but has Crohn's. He was on Remicade for 6 years and has been off it for two (switched to Humira.) There is no talk of removing his colon (even though he has a severe blockage.) The Humira is working well for him.

Best of luck to your family. It's a terrible disease.

The 2 are very close, difference from my understanding is crohns can be anywhere in the gut and colitis is colon. However what I didn't understand today was that they said his small intestine is swollen also.

I have so many questions for tomorrow.

Does anyone know how long you can watch your spouse sleep..... I do.... All day!!!!! At least the pain seems to be better.

 

[Janepod]

The 2 are very close, difference from my understanding is crohns can be anywhere in the gut and colitis is colon. However what I didn't understand today was that they said his small intestine is swollen also.

I have so many questions for tomorrow.

Does anyone know how long you can watch your spouse sleep..... I do.... All day!!!!! At least the pain seems to be better.

My husband's blockage (Crohn's) is at the top of his colon. Significant scarring there and the valve (?) between the small intestine and the colon. Some inflammation in the small intestine but not too bad.

Good luck. Rest is good. Any chance you are in NYC or CT? I can talk gastroenterologists all day long if you are.

 

[figmentswife]

My husband's blockage (Crohn's) is at the top of his colon. Significant scarring there and the valve (?) between the small intestine and the colon. Some inflammation in the small intestine but not too bad.

Good luck. Rest is good. Any chance you are in NYC or CT? I can talk gastroenterologists all day long if you are.

No we are in NC. Not too far from duke so I feel good about that part just may need to change drs. But then again we may not.

 

[Jewel3k]

My husband has been diagnosed with it since 2008. The disease is so tricky and different for everyone. I would try and find a specialist that works only with patients with ulcerative colitis or Chrons. For some people diets and supplements work. We have not been so lucky. He is on imuran and takes a probiotic. The combination of the two is the only thing that has worked for him. A lot of the drugs and diets have made him sicker. You might look into having his colon removed. I know that is the most likely next step in our journey.

 

[Forevryoung]

My husband has been diagnosed with it since 2008. The disease is so tricky and different for everyone. I would try and find a specialist that works only with patients with ulcerative colitis or Chrons. For some people diets and supplements work. We have not been so lucky. He is on imuran and takes a probiotic. The combination of the two is the only thing that has worked for him. A lot of the drugs and diets have made him sicker. You might look into having his colon removed. I know that is the most likely next step in our journey.

Best thing my family member with UC EVER did was have her colon removed. It gave her her life back. She had been so sick for so long and in so much pain that the pain following the surgery was BETTER than the pain she experienced prior to surgery.

She opened her eyes in recovery and said "I'm so glad I did this." Three months later she had the colostomy reversed. She was aware that worse case scenario she would end up with a permanent colostomy at the age of 25. And THAT, while really upsetting, was a better option than her poor quality of life before surgery.

If it's at that point, find a good surgeon. She wishes she had done it 12-18 months earlier than she did and her surgeon says that most people say the same thing. She's not taking any meds and she's healthy.

 

[Disneylover99]

My husband was diagnosed with Crohn's in his 20's after years of problems. throughout his 30's, he tried various diets, supplements, homeopathic remedies, pentasa and remecaid, but nothing helped.

Op I feel for you and your husband. It is such a difficult and tricky disease. we were at our wits end.

Just before my husband turned 40, he had part of his colon removed as a temporary solution, so he had a pouch. It gave him his life back. he had energy, he could eat again and we could go out and socialize. He had this pouch for five years and decided that he would get rid of the rest of his colon and keep the pouch (colon cancer runs in his family). so now his pouch is permanent.

We think he probably had UC rather then Crohn's, but of course it is so very difficult to tell.

my husband had a great Gastro intestinal doctor. You have to love your doctor and trust them as well. Ask to be referred to a different gastrointestinal doctor for a second opinion. We did this (even though we loved our doctor) and we ended up staying with our original doctor, but it was certainly helpful getting a different perspective from another doctor.

Good luck!

 

[Jewel3k]

Best thing my family member with UC EVER did was have her colon removed. It gave her her life back. She had been so sick for so long and in so much pain that the pain following the surgery was BETTER than the pain she experienced prior to surgery.

She opened her eyes in recovery and said "I'm so glad I did this." Three months later she had the colostomy reversed. She was aware that worse case scenario she would end up with a permanent colostomy at the age of 25. And THAT, while really upsetting, was a better option than her poor quality of life before surgery.

If it's at that point, find a good surgeon. She wishes she had done it 12-18 months earlier than she did and her surgeon says that most people say the same thing. She's not taking any meds and she's healthy.

We have heard lots of positive stories about the surgery and always love hearing more. Thankfully when the disease isn't flaring my husband feels great. We are also lucky to be near the Cleveland Clinic, who does the surgery all the time.

 

[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]

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]

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.