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Crohn's Disease Forum » Ulcerative Colitis Forum » Treatments for Stubburn case of UC??


01-12-2014, 09:36 AM   #1
Ihurt
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Treatments for Stubburn case of UC??

Hey everyone,

I am needing some info for a friend. My friends hubby has Ulcerative colitis, he has had it for like17 years now or close to it. When he was first dx he was put on Asacol and it put it back in the box. According to my friend, he would have a couple flares a year that would be last a couple weeks and then go away.

About a year ago, he starting having a flare that would not go away, he was with it for like a month or so. Well he ate some Mexican food at some fast food place and that night all hell broke loose. He got so sick. I mean he was pooping water and blood for like four days and finally went to the ER due to being dehydrated. They gave him cipro and flagyl and also steroids. He took those and it made him worse, he ended up with a severe yeast issue all over his body. My friend has had him on a very mild diet for now for the last year trying to get this thing back in the box. Nothing is working. He is basically housebound. He goes to work,( luckily he is right next to a toilet) otherwise he would have to stop working, but then he goes home and has to stay right by the toilet. It is so bad he has accidents with not being able to make it to the toilet quick enough. My friend is at her wits end and so is he. They do not know what to do. When they went to his gastroenterologist, he just said, this is UC, this is what UC does. He then told them that he was lucky when he was only having 2 flares that lasted only a couple weeks all that time. SO the gastro just offered steroids which he wont take as it made him worse last time and gave him a severe yeast issue along with the antibiotics.

So here is the thing, the poor guy hardly gets decent sleep since he is up pooping like 10 times a night. Some days are better where he gets up once to three times, but usually he is up half the night going. I am sorry, but this is unacceptable!

What can he do? My friend has him on paleo diet pretty much. It really helped get rid of the yeast issue, but my friend said they cannot sway off the diet, like a few weeks back she added more grains, and carbs, and BAM, yeast came right back. So he went back to the strict diet and the yeast went away again mostly.

Does anyone have any ideas of how he can get this back in the box to where he is not pooping all the time and being unable to leave the house except for work?? They have tried so much already. My friend is totally againt biologics, and for good reason. I mean she thinks it will just add another problem due to the severity of the side effects of those meds. The Asacol just does not wok anymore, so what else is there? She is thinking of having him do a very strict diet( kind of like the brasco broth diet), I mean he is already doing the bone broth, but this diet is a bit more severe. It would mean him eating like only chicken soup for two weeks and then adding raw kefir to the diet for another couple weeks and then you work your way up to more things. But my friend said her husband is less than excited to try this. Is it normal for UC to stay flaring for a whole year with NO improvement? Please if anyone has any suggestions, it would be greatly appreciated. Thanks.
01-12-2014, 10:17 AM   #2
Kero
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I think he may need a different GI doc. Saying "this is UC, it's what UC does" is a cop out in my opinion. A year in a flare is a looooong time. I have been in pain for almost 8 months and it's wearing on me, let alone for a year. Hope he gets relief soon
01-12-2014, 10:46 AM   #3
UnXmas
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I understand his reluctance to take steroids, but if he can find one that his disease responds to, and a dosage that works for him, they can potentially provide extremely powerful help.

What is his weight like? With diarrhoea that bad, it could cause him to lose a lot of weight, in which case going on a restrictive diet unnecessarily could add extra risks to his situation. A soft, low fibre, low residue diet might help, but if he can't tolerate even that, he might need medical assistance with nutrition, whether supplements, tube feeding, or even TPN. With diarrhoea is as severe as you describe, he could easily become dehydrated or malnourished. He'll need to take care he gets enough fluids. Even if he is not currently underweight, if he is losing weight quickly, nutritional support may be necessary.


Is he using continence products? This of course is not a solution, but using continence pads or underwear could ease his mind a bit. You can also get mattress protectors so he will not have to worry quite so much at night.

The only think I can think of that could actually resolve his situation and help long term - other than the possibility that he could find medications which suit him - is surgery. I'm not so familiar with UC (maybe you could repost your post in the UC forum?), but I believe it can be stopped by removing the colon. As far as I know, unlike Crohn's, UC only affects the colon, so removing it removes the disease. A colostomy is a big step, but it could give him a far better quality of life than he has now. I love having my ileostomy, it's helped me so much.

The best advice I can think of is for him to first make sure he is getting the nutrition and hydration he needs. Get continence products to help ease his mind a little. Have him see a different doctor - or a few different doctors, until he finds one he gets on with - and discuss steroids, biologics and other medications with a more open mind. If the medications still don't help or if he really can't deal with the side effects, see a surgeon and a stoma nurse and think about an ostomy.

One thing is certain: you can not treat UC this bad with diet. Diet will help ease his symptoms, if he's lucky and can find one that helps him and which provides adequate nutrition. But it will not stop a flare. He may be very very luck and go into remission spontaneously, but until or unless that happens, his options are medication and/or surgery.
01-12-2014, 01:04 PM   #4
Ihurt
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Thanks Kero and Unxmas!

Unxmas: Well as far as the diarrhea, he does not have water stools all the time when he goes. She said it is like he will have severe urgency and a lot of times it is in oatmeal consitancy or sometimes it is just mucus. So he is not dehydrated. He is able to eat with No problem, he does not have too much pain overall. It is the constant having to go to the toilet that is the problem.

He is maintaining his weight so far. I mean he is able to eat, just that him running to the toilet is the issue. They had him on steroids for a month straight and it did Not help him at all. So he will not even consider going on them again, especially because they created a severe yeast issue and more so because after a month on oral steroids and also he was given a shot of them, it did nothing to help him. I mean I also have heard that colon removal would cure UC, but he does not want to go down that road as of yet. That and there is NO way insurance would pay for that. They wont ok surgery like that unless he has tried every single thing meaning ALL biologics first.

I guess I could repost this on the UC board and see what they say. I think they are just so frustrated with not getting anywhere. My friends wife even called this place where they get their raw kefir and dairy from and she talked to the owner of the farm. He said he had bad Crohns disease and he tried so many things and could not get well. She said the guy said he went on a raw diet, even eating Raw meats. He said he has been Crohns free for 8 years now since being on that diet. My friend was NOT interested with doing this at this point. She is not comfortable with doing raw meat.

Thank for the info, I appreciate it. I mean there has to be a way to get it under control where he is not waking up every night several times having to use the bathroom and him not being able to really leave the house at all except for work...
01-12-2014, 02:45 PM   #5
UnXmas
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I really don't think he's going to get better if he's unwilling to try medications or surgery. You cannot treat UC or Crohn's just with diet. If he won't try medications, he's not going to get better. It's that simple. The only advice that can be given to him is recommendations for medications or surgery. Diet and other things can help manage symptoms (in some cases) but they will not fix this. Unless, perhaps he would consider EN or TPN? http://www.crohnsforum.com/showthread.php?t=23607 I'm not sure about how applicable these diets even are to UC though.

Claims that you can treat IBD with raw foods and raw meat is ridiculous. Sorry!

I remember you posted about this same person a little while ago. What has been happening in the mean time? I remember you got much the same advice back then - medication. I really don't think you're going to get any different advice now.

You say they are frustrated and not getting anywhere, but they have not tried the advice that has been given. They're not going to get anywhere if he will not try the only treatments that are available. I know the medications are not guaranteed to work and that they have horrible side effects, but his options are either to keep trying medications and adjusting dosages and trying to find something beneficial, or accept living with his disease. No one's going to come up with some magic diet that will solve his problems. A lot of people may claim they have some diet or supplement or therapy that will solve his problems, but the chances of them actually working are extremely slim, as the only treatments proven to be effective are medication and surgery.
01-12-2014, 05:51 PM   #6
Ihurt
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Thanks Unxmas, I appreciate the help and advice. I will talk to my friend and ask if he has tried any of the other milder UC meds. I mean I think he has only ever tried Asacol. I think there are other meds like pentasa and a couple others similar to that one. I understand what you are saying. I will pass on the info. Thanks...
01-13-2014, 06:03 AM   #7
UnXmas
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I think it's great you're trying so hard to get your friend help btw.

Maybe it would help him to visit this forum himself? It might help him to read accounts of how others have been helped with meds for himself. It may also be that he has worries about treatment and his disease that he hasn't wanted to divulge to his wife - he could post them here anonymously and maybe that would help him?

Also from your posts it sounds like his wife is making the decisions about treatment for him. Is he hoping to treat it through diet, and is he against meds, or is it mainly his wife's feelings on these issues that is directing his treatment? It may be worth making sure that his preferences are being acted upon and that he's not just following his wife's lead. It will be easier for him to comply with treatment and feel positive about doing so if he's making decisions for himself.
01-13-2014, 08:51 AM   #8
Ihurt
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Hey Unxmas,

Yeah, I just feel really bad for them. I mean my friend has been chronically ill for the last 16 years. She battles many health problems herself. I believe they both are on the same page as far as how He wants to treat the UC. I know my friend, well being sick for so long and having had so much horrible luck with western medicine and awful doctors, well, they do not have much faith in the medical world sort of speak. I mean he has seen first hand how awful the medical field is with what my friend went through being sick. She walked around for years with a parasitic cyst in her liver that was misdiagnosed many many times. She finally got so sick that she luckily found a GI surgeon who really took the time to look into things and she ended up having to have a liver resection to remove half her liver to get rid of the parasite in her. She also has many other health issues she deals with. I think they wanted to see if doing the diet would help him before turning to medications. I mean, if I were him, I would likely try one of the milder meds just to see if it would help. I mean that is me. I understand their reluctance for using those harsher medications(biologics), I mean they are Not good overall and definitely not good to be on for any length of time. But I certainly would not want to be as sick as he is and not getting any better either. All I can do I mention stuff to them. I don't think he would go online on a message board. I will mention it though. Thanks for all the info, I appreciate it a lot...
01-13-2014, 10:30 AM   #9
UnXmas
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I do understand how they feel having had bad experiences with conventional Western medicine. I've had very bad experiences, but although I was misdiagnosed and had bad treatment from conventional doctors, I still believe that conventional medicine has the power to achieve good results when it is in the right hands. Although medications can have bad side effects, they can do really good things too, when a doctor uses them appropriately. Rather than refuse all medication, tests, surgeries, etc., I now try to make sure I only get these treatments from doctors who I think know what they are doing.
01-13-2014, 12:46 PM   #10
Ihurt
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Yeah, I hear ya. I mean as you know, I also have had a rough time with doctors as well. But I do have a regular primary care doc who IS very nice and she is smart. So there are some good doctors out there. Just it is unfortunate we have to have bad ones out there too. I mean I myself think western medicine and holistic medicine can compliment each other. Some things western are not good, and some holistic stuff is not to good either. I have experienced bad from both sides of the spectrum too as well as some good from both sides. I mean I guess we all do what we have to do in order to get better. I agree, I would not shun all medications, I mean even if it is to give a person some quality of life back, then it is worth it. I will give her some of the tips and advice I got on here. It will ultimately be up the them to decide what they want to do.
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