Need advice for friend who has UC and has been in a flare for a year now!

[Ihurt]

Hey everyone,

I need some advice. My best friends husband has Ulcerative Colitis. His was under control for a long time with just using the medication Asacol( hope I spelled that right). Well last year he ate some bad food at a Mexican restaurant and it was down hill from then. He also had a lot of stress in his life at the time. Well at the time he went to the ER due to being dehydrated and having the runs so bad. They just gave him flagyl, cipro and steroids. Well after he took those, he was NO better, in fact worse, he now has a severe candida overgrowth due to the antibiotics and steroids. His wife, well she also has a ton of health issues and has kept him on a VERY healthy diet. Nothing is working though. He is not taking any meds, he stopped the asacol last year since it was not helping. (he is thinking about trying it again). He is doing the Brasco broth diet which is suppose to be very healing to the gut as well. His gastro doc according to his wife is an absolute idiot. She is taking him to a naturopath now and trying to work with that doctor. Does anyone know what can be causing this flare to Not go away? One thing my friend did say was that he does drink a cup of coffee every morning. But I just don't see how that would make him as bad off as he is now. I mean the other night he was up 20 times to the toilet. Something has gotta give, this is ruining his life. He had been able to go to work, but only because he is a boss and has his own bathroom. But getting up all night to use the toilet is taking it's toll. He is exhausted. I need some advice for my friend. If anyone has any I would greatly appreciate it....

 

[jwfoise]

I think he needs to either go back to his gastro doctor, or if that one is an idiot, find another one. I don't think a diet change or some supplement is going to magically make him all better. You shouldn't be flaring for a year and not taking your drugs isn't going to help it.

 

[mccindy]

If his current GI isn't helping, he needs to see another one. He has a diagnosis and knows the medication was working for him, it doesn't make sense for him to refuse to take it now. I believe that Asacol has been discontinued but there is a new version, Asacol HD that works. My sister takes it for her Colitis and she's been in remission for quite a while.

Diet alone will not get him out of the flare, especially if he has severe inflammation.

 

[wild_one353]

i have managed my disease for 4.5 years without meds using only diet and supplements. i have had no complications and my disease was severe. here are some tips.

lower his intake of lactose(milk sugar) and replace it with cheese.
lower intake of sucrose(refined sugar, white sugar, added sugar, etc) read package labels and lower intake of fruit which always has sucrose in it.
avoid eating meat and take b12 supplements. Take both forms of b12, methylcobalamin and adenosylcobalamin.
take 1000 iu of vitamin d a day.
eat lots of cooked broccoli and cauliflower.
eat lots of oatmeal, refried beans.
be careful which brand of wheat you eat. i only tolerate gold medal whole wheat.
avoid any leavening bread products with yeast in it. i make my own bread products that are not leavened. i make wheat wraps everyday from gold medal whole wheat flour.

take fiber supplements like psyllium.apple pectin, or inulin,but without added sugars like maltodextrin or sucrose.
take coconut oil and medium chain fatty acids caprylic acid to kill pathogenic bacteria that cause diarhea that you body can no longer get rid of on its own.

also, take medications too.




if none of this helps, try a DIY fecal transplant- http://www.crohnsforum.com/showthread.php?t=52400

 

[Ihurt]

Thanks so much for the suggestions. He will not go to another Gastro doc, he says all they do is try and feed him steroids and antibiotics which will only makes him worse. He is trying to work with a naturopath doctor right now.

McCindy: Yes, he was taking the asacol for like 10 years. It kept him pretty good for a long time, he would only get a flare once or twice a year. But last year he want into a huge flare after eating something bad and going through some stress. The only reason he stopped the Asacol was because it was not helping him at All this time.

Wildbill: Thanks for the diet suggestion. I will pass it on. Right now he is on a Sugar and carb free diet basically due to candida issues caused by the antibiotics( cirpo, and flagyl) and steroids the Gastro doc had given him a year ago when he started flaring. Ever since taking those meds he got a HUGE yeast infection all over his body. That part is better now that he is on the yeast, sugar, and dairy free diet. His diet is basically this Brasco broth, he drinks three cups a day I believe. Also My friend makes him this fresh Vegi juice using all organic vegetables. I think he eats some meat, usually just chicken or fish. Nothing he does seems to be helping really though. I will mention to him the diet you gave. He is at wits end with this.

Thanks for all the replies and support...

 

[mccindy]

While taking others' diet suggestions to him, remember that different people respond differently to different foods. Some people can tolerate gluten, some can't. I personally cannot eat corn, beans, cauliflower or broccoli, so those foods would not help me as they have wildbill. If he is having lactose issues, only aged cheeses will be tolerated, no fresh cheeses as they still have lactose. It can be quite frustrating to try to find the right diet for each individual.
wildbill is right, take meds if they are prescribed. The key might be the right combination of meds and diet.

 

[UnXmas]

Thanks so much for the suggestions. He will not go to another Gastro doc, he says all they do is try and feed him steroids and antibiotics which will only makes him worse. He is trying to work with a naturopath doctor right now.

McCindy: Yes, he was taking the asacol for like 10 years. It kept him pretty good for a long time, he would only get a flare once or twice a year. But last year he want into a huge flare after eating something bad and going through some stress. The only reason he stopped the Asacol was because it was not helping him at All this time.

Wildbill: Thanks for the diet suggestion. I will pass it on. Right now he is on a Sugar and carb free diet basically due to candida issues caused by the antibiotics( cirpo, and flagyl) and steroids the Gastro doc had given him a year ago when he started flaring. Ever since taking those meds he got a HUGE yeast infection all over his body. That part is better now that he is on the yeast, sugar, and dairy free diet. His diet is basically this Brasco broth, he drinks three cups a day I believe. Also My friend makes him this fresh Vegi juice using all organic vegetables. I think he eats some meat, usually just chicken or fish. Nothing he does seems to be helping really though. I will mention to him the diet you gave. He is at wits end with this.

Thanks for all the replies and support...

There is no way his current diet is doing him any good. He will not be getting enough calories to keep his body going. (I googled Brasco broth, and although it's full of good things - providing the vegetables can be tolerated - it's not going to provide much energy for him to heal, fight the disease and just keep functioning every day. And while coffee may worsen his symptoms, it cannot be the cause of his flare or his failure to get better. Coffee doesn't have that much power. ) You said he gave up on a medication because it wasn't helping - since his diet isn't helping now, he should apply the same principle.

Diet and supplements alone will not help someone in this situation, and I wouldn't be relying on a naturopathic doctor. Personally the sort of diet I would aim for would be low-fibre, low-residue. Foods which are easy to digest. Unless he has problems with gluten, low fibre cereals, white bread, white rice, etc. would be good things to eat. Limit fruit and veg to ones that are easy to digest, such as bananas and avocados. Eat puddings and soups that are easy to get down. If he's losing weight, he might need a build-up shake like Ensure.

Has he tried any other conventional medications? Maybe he needs a higher dose or longer course of steroids? What tests has he had done recently to assess the extent and location of his disease?

He needs to be on medication and he might need to be treated quite urgently for dehydration with diarrhoea that severe.

 

[Ihurt]

Unxmas:

Thanks for the reply. I just talked to my friend and she said he drinks 3 glasses of the brosco broth every day. She also makes him a fresh juice drink as well. He does eat chicken that is boiled or roasted as well. He is not losing weight from what my friend said. Oh he said he would NEVER go the hospital again, he would die first. What happened was when he ate that bad food last year and got really sick, well he was so sick he did go to the ER as he was so dehydrated. They gave him fluids at the hospital and antibiotics and steroids and sent him home. Here is the thing, the insurance refused to pay for the hospital bill. They told him that he was at fault for eating food he should not have been eating knowing he had Ulcerative Colitis and that he brought it on himself. They also said that his issue was not an emergency. I mean they had to shell out like $3000 due to this. So he wont ever go back, I know this.

I mean he has a gastro doctor and according to my friend, this doctor is terrible. All he knows how to offer is steroids. They gave him steroids in the hospital and it made him worse! He ended up getting severe candida infection and get this, when he went back to the doctor he wanted to give him more steroids knowing his body was covered in yeast! So my friend will not take him back there again. That is why she went to the naturopath doctor. I agree that something needs to happen, he needs to get some help. I mean steroids probably are not the answer for him as it will just weaken his immune system further. He is on a sugar free and wheat/gluten carb free diet. My friend put him on this diet when he had the yeast so bad. This diet has gotten rid of the yeast infection, he is like 95% better on this diet. My friend said he actually went off the diet for about a week and ate a few different things ( carbs and such) and the rash came back. So he has to stay on this diet pretty much. He even took 10 days worth of difulcan and that did not help much.

I believe he is thinking about taking the Asacol again and giving it another try. I will mention to my friend that maybe he should get a second opinion from a different gastro, not sure what they will offer though. He had a colonoscopy about a year ago. His gastro did not feel he needed another one at this point. He basically told my friends husband that this is Ulcerative colitis and this is what it does. I just think being in a flare for over a year is not good. I mean it is affecting his quality if life at this point.

Thanks for the advice, I will pass it on..

 

[2thFairy]

Another gastro might offer another mesalamine medication such as Lialda, Pentasa or Asacol HD. There is 6MP, azathioprine, Remicade, Humira, Uceris, corticosteroid enemas, mesalamine enemas, and steroid pills. Fecal transplant is also effective for UC. There are many other options for UC. A despised and not recommended, although effective, method is cigarette smoking. Had I continued to smoke, I could have kept my colon. For me, it wasn't worth the risk of lung cancer or emphysema, and after failing all medications, surgery was my only remaining option.

He should try another gastroenterologist....diet alone isn't going to help him at this point. Once he becomes stable, diet may be effective once again.

 

[Searchingforhealth]

Has he been tested for C-Diff?

 

[mccindy]

I'm questioning why he would not want to go back to the hospital, when it is obviously the insurance company that made the decision about the payment. He should be fighting the insurance company, not avoiding the hospital. It sounds like he's just been so miserable that he wants to avoid the medical system altogether. My concern there would be that his diet won't fix the problem and he will continue to get sicker.

 

[Ihurt]

Thanks guys for the replies.

Hmm, that is interesting about the smoking helping with UC. I have never heard of this before. Though I am sure he will not want to take up smoking at this point .

McCindy, actually, it was the hospitals fault because it was the doctor there who treated him that told the insurance company that this was not a medical emergency. So the insurance refused to pay for the ER visit claiming that he knew he had UC and should not have eaten the Mexican food! I mean I am not kidding. My friend even brought up literature stating that UC has nothing to due with diet( well, this is what the medical literature says). They still would not listen and kept saying he could have prevented the whole situation. She even called the hospital and asked them to call the insurance and fix this. The doctor said, no, that once they code a diagnosis, it is done, they cannot change it. I mean they tried to fight it but in the end they just paid it. It was too much stress. I agree, I think he should see someone. He does need some help at this point. My friend knows this. I am sure they will look for another gastro or try something else.

Can he take immodium? I mean I was just thinking maybe it would help him with the frequency?

 

[2thFairy]

Yes, Imodium is safe. It may or may not help, but it is safe to take with UC.

 

[UnXmas]

I'm very sorry about the cost of the ER visit. I'm so used to the NHS that I really can't comment on the cost or insurance issues, but if the issue was that he wasn't classed as an emergency when he went to the ER, would insurance cover/contribute to a routine consultation with another gastroenterologist and to medication? Could he find a more sympathetic doctor who would try to make sure that the insurance company knew further treatment is necessary? Even if he had a bad experience with the cost of the ER visit, does that mean his insurance won't pay for further treatment? I can't see why an insurance company would deny that medications are wanted to treat UC or that it requires consultations with gastroenterologists.

How much is he spending on the naturopathic doctor, special foods and supplements?

The yeast infection may be a necessary evil. Steroids come with big risks and side effects. It doesn't mean they should never be taken. Which is worse, the colitis or the yeast infection? Which is the biggest risk to his health? I'm not saying colitis is definitely the worst, I just think those are questions he has to ask himself. A medication bringing on a bad side effect does not necessarily mean the doctor was wrong to prescribe it or that it should never be taken again. It means that if steroids are the best option available, it may mean having to manage a yeast infection as well. When the doctor wanted to prescribe him more steroids, that was most likely because the doctor thought that getting the colitis under control was more urgent than a recurring yeast infection. Where specifically did the yeast infection occur?

I just talked to my friend and she said he drinks 3 glasses of the brosco broth every day. She also makes him a fresh juice drink as well. He does eat chicken that is boiled or roasted as well. He is not losing weight from what my friend said.

I really don't understand how this is possible. Drinking a three glasses of a vegetable broth, drinking juice, and eating some chicken and not losing weight must mean he is consuming a ridiculous amount of chicken and juice, quantities that would be awful to get down when he is feeling this ill. A healthy diet must include some fats, it must include some carbohydrates. If he really can't tolerate any other food he needs urgent medical attention to initiate some kind of feeding tube, liquid food supplements, etc. What happens if he tries to eat something with more calories? How long has he been on this limited diet for? A diet like this could be used for a few days to get through a bad acute episode, but it's not a healthy way to eat long term. If he's not lost weight yet, he will very soon if he continues. Is he overweight at the moment?

Oh he said he would NEVER go the hospital again, he would die first.

Does he genuinely believe he is going to get better without any conventional medicine even though his current diet isn't helping? What sort of advice is he looking for if he will not go to a hospital or take a medication?

 

[Ihurt]

Thanks 2thfairy and Unxmas.

Unxmas: He can still get another consult with a different gastro doctor I believe. The insurance will pay for that. It is the whole Emergency room visit that they denied payment for. I suppose because the doctor at the ER claimed that his issue was not an emergency( even though I would say it was, I mean the guy was clearly dehydrated). My friend said they gave him like 3 bags of fluids and he did not pee once!! That tells me he was dehydrated. But the doctor claimed it was not an emergency so the insurance denied payment saying he knew he had UC and that he should have just made an appt. with his doctor instead of going to the ER. Theses insurance companies are just ridiculous.

He use to be overweight, but not anymore. Now he is at a good weight. Maybe he is eating more than I mentioned, I just mentioned what my friend told me. I mean he must be otherwise like you said, he would be dropping weight.

The yeast infection he had was pretty bad, all over his private area as well as all over his arms and legs, like behind his knees, in the cracks of his arms I mean my friend said it was everywhere. They gave him diflucan for 10 days. This did not help it too much. He even went to his regular primary care doctor and he said it was yeast infection for sure. He told him to avoid the steroids as well. The diet ( no sugar or carbs) is what brought the yeast under control. He has to adhere to this diet now until his body can get healthier and the yeast under control. I mean I here what you are saying, he also needs to get the colitis under control too. I am thinking my friend may get a second opinion from a different gastro. He seems pretty miserable right now.

He is able to eat ok, he does not feel sick like that. It is just he is always running to the toilet and he does get bad crampy pains too. His upper stomach is fine though. He has no issues eating anything, just that it all upsets the lower gut..

 

[UnXmas]

He can still get another consult with a different gastro doctor I believe. The insurance will pay for that. It is the whole Emergency room visit that they denied payment for. I suppose because the doctor at the ER claimed that his issue was not an emergency( even though I would say it was, I mean the guy was clearly dehydrated). My friend said they gave him like 3 bags of fluids and he did not pee once!! That tells me he was dehydrated. But the doctor claimed it was not an emergency so the insurance denied payment saying he knew he had UC and that he should have just made an appt. with his doctor instead of going to the ER. Theses insurance companies are just ridiculous.

If that's the case, then the only advice he can really take is to get an appointment as soon as possible and if the doctor seems alright, to take whatever treatment gets prescribed.

Who has told him to go on the diet he is on? He's not going to be able to fight UC or yeast infections if he's starving himself.

The question you asked in your first post:

Does anyone know what can be causing this flare to Not go away?

What's causing his flare to keep going is the absence of proper treatment. Flares can persist even with treatment, but he stands a far far greater chance of ending it if he gets medical care.