Ulcerative Colitis

[seminolewind]

Hi. I really don't want to personally get involved with a new forum. But I need help.

DH was diagnosed 3 months ago with Ulcerative Colitis. I hate to say this but it's been down hill since then. With the continuous bleeding, he needed a blood transfusion yesterday. The bleeding and diarrhea has been going on for 3 months regardless of the meds he's on and for the last 2 weeks a very bland diet. He sees a doc every week and never improves. He can't leave the house . He sleeps all the time. I am really , well, scared.

Do some people never get the symptoms under control? Should he see someone new, or is this common? He's gone from being a normal person with a full time job and hobbies to someone who lays on the couch almost all the time. I just can't look at him this way anymore and don't know what to do. I would appreciate some guidance . If you are apprehensive about posting anything, please pm me.

 

[Yay Chicks!]

I'm very sorry to hear what you are going through.

I'll tell you what I know, which isn't much. I won't presume to give advice.

My sister had ulcerative colitis decades ago. She was very, very ill. They ended up doing emergency surgery to do a colonectomy and a partial illeostomy. She wears an external colostomy bag.

As I mentioned, this was decades ago. She has been in good health every since, despite the inconvenience of dealing with something that most people don't have to deal with.

It took several doctors before she was diagnosed correctly..

My view is that everyone has a right to second and third opinions, especially when things are not clear.

I wish you good luck and some clarity at the very least.

 

[seminolewind]

Thanks! A bag would be a blessing by now.
Today I suggested to him that he might want to look for a doctor closer to the city or affiliated with USF. I think they are limited out here, and he should see someone who's more of a specialist.

Of course he says he's doing well. I said well, from 12 weeks ago until now, would you say you're any improved? He says not really. I walk away.

 

[IBDMom]

Seminolewind, so sorry to hear your husband and therefore you are dealing with UC. I am the mother of a young person diagnosed with UC at the age of 14 after a year of symptoms like those your husband is experiencing. It definitely does take a while for the doctors to figure out what's going on -- in my child's case they still aren't positive if it's Crohn's Disease or UC and it's been 6 years! There are medications that can be completely life-changing when they work. It took us 3 years to find them (there is no one medication that works for all patients, unfortunately) but I am very glad we did.

A very good resource for you is the Crohn's and Colitis Foundation (www.ccfa.org) which is the primary association for inflammatory bowel disease (the category into which both Crohn's and UC fall). There is a great deal of patient and caregiver involvement in the CCFA and they have listings of support groups, a phone information line, lots of good stuff.

Courage!

 

[donrae]

Dealing with a sick spouse can be a challenge all in itself

He sees the doc every week--what happens at the appointment? Is the doc changing meds, or just limping along on the current ones? Has he said how long it will take for the current meds to work? Has he talked about surgery? You need to pin the doc down on how bad your honey's really doing, and what's going to be done to fix it. I'm not one to jump right to surgery, but there needs to be a plan in place. Tell the doc what you posted here, and how you're scared. Be sure your honey's not making things sound better to the doc than they really are, patients tend to do that.

How are you managing financially? If he's not able to work, that's a huge thing. Is your doc aware? Has he talked about disability? I"m not meaning to post financial details here, just wondering if the doc really gets how bad things are.

If you feel you're not getting a good response from your doc, absolutely get a second opinion. Depending on your relationship with your current doc, get a recommendation from him. Is the current doc a specialist?

 

[Mountain Man 60]

Please remember that this disease has emotional as well as physical triggers. Stress and food definitely play a role in flare ups. Please be supportive as I do not believe that there is a cure for this disease but you can minimize symptoms if you can start eliminating the causes of his body reacting to physical and emotional stress.

Eliminating food related issues can start with a log of what you eat and the reaction. Go to a water and whole food diet of meat, veg and fruit. Eliminate soda, candy, milk products and GMO food. As you start adding back food, especially dairy note the reaction of his body. Carbonation also adds fuel to the excess gas and should be avoided. Alcohol should also be avoided as it irritates internal wounds and causes a purge of vitamins that are already in short supply due to the diarrhea associated the this illness. As you find the food that cause issues eliminate they from his diet.

Things that help. Use peppermint tea with chamomile. This will reduce swelling and help control spasms. Use fresh ginger tea. This will also reduce inflammation. Take probiotics to add good bacteria to the system. Take Metamucil to help bind excess carbs and liquids. Use honey or agave syrup for your sweeteners as they have antibacterial properties and do not inflame the system like refined sugar and high fructose corn syrup.

After you start the daily metamucil and probiotic you should start feeling better. This will limit the diarrhea which causes the weakness and lethargy. The teas will help with the inflammation.

Be supportive as emotional stress also inflames the digestive tract and the goal is to eliminate stress and help the healing process. When the true cause is found, which will probably be a genetic protein malfunction, there may be a cure, but for now treat the symptoms and get him feeling better.

Be very careful of doctors solutions to this illness as they want to suppress your immune system to the point that it does not react to the issues created by your intestinal tract. This will expose you to a multitude of disease worse that the original problem. Read the warnings on the label than include TB and cancer just to name a few. They will not tell you of the natural remedies as there is no money in it for them.

Start him on a new diet and see how it works. If you need any additional support let me know as I have been thru this for 20 years.

 

[seminolewind]

Thankyou all for the awesome suggestions.

IBD mom, thanks for the link, I will pass it on. It must have been awful with such a young person getting this . And the time it took to diagnose it. He needs some support. Me too.

Donrae, He's retired , then decided to go back to work a few years ago. But he has retirement and SS. Thanks for asking. We're okay.
His doctor appts, well the doc keeps telling him not to worry. Then prescribes something else. My friend suggested that it may be time to seek a specialist who's affiliated with University of Florida, or a bigger hospital in Tampa. I think the docs here , although good, are limited. We live 40 miles from Tampa, land of little community hospitals.

I told him this, but he defends the doctor! He said that the doc was at a hospital making rounds and drove all the way back to the office for his appt because he likes my husband. That's quite a tall tale if you ask me.

Yes, he needs a plan, not just "don't worry".. He's a gastro, but it's time to look for someone more advanced if you ask me. I told him that, but he defends the doctor. So, I've learned to pass along advice, and then walk away. I don't want to argue about it. I just want him to think about what's not happening.

Mountain man, I think one of the stressors may have been his decision to re-retire. He thought I'd be mad. (Are you kidding me???) His doc actually told him he can eat what he wants. My 2 friends with UC told me that with flare-ups, he needs to stick with a super bland diet. I think he finally listened to that.

The doc put him back on prednisone. I believe that's a suppressor. Good point. I'll pass on the peppermint tea with chamomile .
It took quite a while to convince him that spasms were not caused by the food he just ate, but probably what he ate a few hours ago. So he was avoiding the wrong foods. I'll let him know about the Metamucil and probiotics.

Thanks for the support. Sometimes it's good to reach out and see what real people say, especially since the doc is not seeming to be working out a plan.

 

[donrae]

I would try to get him to go to the University. With his feelings about his current doc, sounds like it would be great if the current doc would refer him, but not sure if that's going to happen.

I live in an area with a great hospital, and a really good oncology/hematology office. But, when I was diagnosed with leukemia, my local docs shipped me right up to the University. The bigger places just have so many more resources and studies and are just more assertive at treating things. I can see saying not to worry right at first, but it's been months and he's getting worse, not better.

 

[Mountain Man 60]

Prednisone is a steroid given when doctors do not know what else to do. It speeds healing but suppresses your natural healing process. Make sure he tapers off slowly to try to get his body to make the natural substances again. He will get moody when on them and tired and depressed when coming down from this steroid high.

The biggest thing to worry about is a blockage where a damaged and narrowed part of the intestine will not allow food to pass. This causes severe bloating, projectile vomiting and potentially a ruptured intestine that could lead to death. You will know if it is coming on as nothing can be passed, not even gas. Things to avoid in this regard are the things that are slowly digested or not digested at all. Corn and internal citrus segment peels and apple peels are bad for me.

The real key is to keep the inflammation down. It swells the intestinal walls and cause the kinks like a bent balloon whis causes the discomfort and potential blockages. Avoiding foods that cause the inflammation is key. The inflammation is caused by a buildup of naturally occurring bad bacteria that become out of balance witih the good bacteria and reactions to food like dairy products that include lactose. Most people become lactose intolerant at sometime in their lives. The good intestinal bacteria can also be killed off by antibiotics and have to be replaced, thus the probiotics. This seems to be common knowledge when treating chickens but doctors do not prescribe for humans. Doctors are treating the symptoms with immune suppressants and steroids but not the cause.

Unfortunately people of your(our) generation give doctors way too much credit when it comes to treatment. Doctors expect you to believe everything they say and follow their advise although in cases like this they have no cause and no cure only treatment of symptoms. The mind can help heal you but you have to believe to have this happen. At this point I would be more impressed by a witch doctor dancing around spitting fire than a doctor prescribing steroids and immune suppressants. These drugs will only keep you on a roller coaster with no end.

Have him start listening to his body and stop doing things that it does not like. We all have to do this eventually or live with a lot of pain.

 

[Mountain Man 60]

Also; what the doc will want to prescribe to you for the inflammation will be NSAIDs. These have been implicated in the cause of ulcers and intestine damage. Do not go down this road as your damage will get much worse.

Juicing is also very effective at re-balancing the intestinal tract. Carrot/Apple and Celery is the standard.