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My very complicated story, please help (first thread)

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Ulcerative Colitis
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Posted 6/7/2012 1:20 PM (GMT 0)
 I am 25, next month, I have polycystic kidney disease for which I take 80mg oxycontin 3/day and 30mg oxycodone 4/day baclofen 10mg as needed tizanidine 8mg 3x/day and zofran 4-8mg+as needed for nausea caused by the pain/uc, have gerd and take 40-80mg omeprazole at night depending and 150mg zantac as many times as necessary during the day, have polycystic ovaries and medical menopause, bipolar take tegretol 600mg, anxiety take xanax 1mg 4/day, depression take remeron 15mg at night, insomnia (remeron).

 

My UC got really bad, bad enough to diagnose, after my gallbladder was removed april 2008. Thinking back now I had the symptoms before but I never really thought much about it cuz it wasn't so terrible at the time. Afterwards I had constant D and imodium didn't help, mine wasn't caused by water but by grease/fat. Activated charcoal and digestive enzymes helped for the first few months and then not at all. I just assumed it was from not having enough bile to digest. I was diagnosed with my kidney disease during my hospital stay for the surgery. A few months after they saw my intestinal inflammation on an mri and told me that i had UC. My GI Dr gave me bentyl which didn't work and did an upper endoscopy and wanted to do a colonoscopy but I couldn't afford it at the time and oddly enough the prep actually constipated me. So backwards! So I ended up not getting one and haven't thus far. Then I started pain management for my kidney disease and like a miracle the narcotics basically cured my uc...at first. However, years later now the pain meds aren't doing much of anything for my kidneys or my uc and IDK what to do. I've had blood in/on/around my stool and on tp for years, loose/soft bm's now again even on that much opiates, severe gas and crippling cramping and mucus coming out with the stool.

 

Diets are not gonna be an option for me really since my terminal kidney illness diet precautions are kinda priority, but the UC causes me SOOO much more pain than my kidneys when it flares up. Which is basically every day before I take my meds and now even with those I get the cramping and cold on my stomach is excruciating! Heat soothes it, but I'm heat intolerant from the kidneys so it's difficult to deal with. The pain stops me dead in my tracks, can't speak, can hardly breathe when the pain comes.

 

Help?

Posted 6/7/2012 1:41 PM (GMT 0)
Sorry to hear about your misfortune into the world of disease, it sounds like you have been through hell. Have you ever seen a naturopathic doctor? I feel like maybe one could really benefit you in more natural ways of healing, since you are on so many meds.

You say your kidney illness diet prevents you from making dietary changes attributed to your colitis, but what is the diet you have to follow for your kidney illness? When you go on a diet, you are mostly eliminating sources of food that exasperates symptoms in UC. It it's certain vitamins or minerals you need to supplement with, there are a variety of foods that can allow you to obtain any nutrients you need. For example, grains (corn, wheat, rice) serve absolutely no purpose in our bodies, and any vit. or minerals can be replaced with another source.
Posted 6/7/2012 1:43 PM (GMT 0)
Without a colonoscopy and biopsies you cannot be 100% sure you have UC even though it sounds like it.
Questions:
What Rx meds do you take for UC?
How does your doctor know it's UC and not Crohn's?
What food do you eat/not eat for your kidney disease?

You certainly have a full plate of illness but I'm sure people will respond with ideas, then you'll have to sort them out and try them one by one so you don't get confused with what is helping.

My first suggestion before hearing your answers to the questions is to start using a rectal med because you mention blood. Either Rowasa retention enema or later when things are better use Canasa suppositories. They work well and will not interfere with any of your other meds.

Diet mod. worked for me but I need to hear what your current diet is before making suggestions about tweaking that.
Posted 6/7/2012 1:49 PM (GMT 0)
my diet restrictions that i follow really, are no animal proteins, fish, coffee, tea, chocolate, etc, so sugars are really my only source of nutrition. I was a nursing student and worked for GNC before I had to stay home all the time, so I'm very familiar with herbs, I used to take a multivitamin, fish oil, and b complex before but i've run out. I'm not on anything GI because the pain meds were helping to keep it mostly at bay, aside from the blood and mucus, but now the cramping pain and other symptoms are getting worse again.
Posted 6/7/2012 1:49 PM (GMT 0)
there are other things but i'm a very picky eater. even off of that list i don't eat fish.
Posted 6/7/2012 1:57 PM (GMT 0)
Sugar is not a good source of nutrition and is likely making your UC symptoms worse causing inflammation to increase. Sugar increases inflammation. I hope member InSoFla will comment and suggest her whey protein shake recipe because that sounds like a good protein energy source for you.
That would be a good place to start with improving your diet.

Secondly and very important get an Rx for mesalamine enemas and start using them nightly. I'm hoping you have a good insurance plan because they are expensive even as generic. Some people use Vitamin E enemas (and other things) but Rowasa (mesalamine) is well studied, safe and it works.

Pain meds do not keep UC at bay they just disguise it. If you do not take UC anti-inflammatory meds to lower your inflammation you risk emergency colon removal and possible cancer. You really should reschedule your colonoscopy if possible because currently you are not treating your UC at all.
Posted 6/7/2012 1:58 PM (GMT 0)
I should have mentioned that i can't have NSAIDS because of my kidneys either
Posted 6/7/2012 1:59 PM (GMT 0)
I do have Aetna HMO though, and if it's covered my generics are $10 and name brands are no more than $40
Posted 6/7/2012 2:08 PM (GMT 0)
oh and also, on account of my kidneys i have an electrolyte deficiency, obviously lol since i'm on muscle relaxers and anti spasmodics, but i still have to constantly drink powerade. i mix it half water but i pretty much have it with me AT ALL TIMES
Posted 6/7/2012 3:26 PM (GMT 0)
flaggot, I realize that polycystic kidney disease is complicated and painful, but the list of narcotic pain killers you provided is quite alarming. I really recommend that you sit down with a good DR - I don't even know what kind would do this for you - and go over the whole entire list. It is extremely hard to untangle the digestive problems you're having from the variety of conditions you are taking meds for. For example, the narcotics will cause constipation. Probably the psychoactive drugs do, too. The bentyl that your GI prescribed - that is not a treatment for UC, it is simply an antispasmodic med that will reduce cramping. It can also cause constipation.

[For those of you who have never had kidney failure - the issues that flaggot is dealing with regarding protein in her diet are quite significant and I would say right from the start that any SCD or paleo diet is totally not going to work for her.]

I agree with imagardner that you need a colonscopy and you need to take rectal meds. They are not NSAIDs. In fact, people with UC cannot take NSAIDs either. Rectal mesalamine is not systemically absorbed to any great extent and is very effective at treating inflammation in the rectum and sigmoid colon. But you do need to know how far up the colon the inflammation is going.

Are you a candidate for a kidney transplant and is your kidney function still good enough that you don't need dialysis?
Posted 6/7/2012 3:36 PM (GMT 0)
The pain meds are actually a shocker for a lot of people. I have what's called idiosynchratic response where i don't react to medications as sensitively as normal people do. Anything, even novocaine, antibiotics, pain meds..etc. I also have high substance P which exacerbates the pain. There's a spinal injection med called Prialt that blocks it and would prolly help me greatly with the pain but it's got severe side effects for people with mental illness, including flashbacks and psychotic breakdowns and suicides otherwise i'd sign right up for it.

I'm waiting for my appt for new tests and mri of my kidneys but last i knew my creatinine was barely under 1.0 which is the threshold. I've been trying for years to get a transplant, I have private donors, but they refused until now when my pain got so bad after a failed sympathetic block. So they are now talking about removing my right kidney which is the worst one and the one that bulges out of my side. Last I knew my right kidney had doubled in size and was covered in many cysts up to 4cm some calcified and some filled with blood. The left one is about the same but there's less organs on your left side and your left lung is smaller so it doesn't bother me as much.

I plan to find a new GI, mine apparently turned into a planned parenthood >.> I've just been in such pain that I turned to the internet.

Do you think that nicotine would help me in the time between now and getting a new GI, referral and whatnot...hate HMOs
Posted 6/7/2012 3:40 PM (GMT 0)
I forgot, no I'm not on dialysis currently. Oh, and with the meds I'm on I'm not constipated at all, never have been. Sometimes, usually really, I at very least have soft stools.
Posted 6/7/2012 3:55 PM (GMT 0)
Wow is all I can say. You've got it rough. You do need to address the UC that your doctor said you may have and sounds like you do have. I would immediately put in a call to your regular doctor to get a referral. Also, look to see what GI you can see under your plan and make an appt. You could have to wait awhile being a new patient but I would say that you are in a bad way and really need to be seen sooner rather than later. If your regular doctor could at least give you a script for Rowasa enemas to get you started it would be great. You need to have the inflammation controlled sooner rather than later.
Posted 6/7/2012 4:29 PM (GMT 0)
kazbern's post was great, sounds like she knows what's going on with your kidneys. I take back my suggestion of whey protein shakes due to my unfamiliarity with kidney failure.

Best wishes again. Your post should make those of us with less serious problems feel grateful we only have UC to deal with.
Posted 6/7/2012 4:47 PM (GMT 0)
Thank you all for your suggestions :) I just can't seem to get cooperating doctors lol... if only House were real haha..
Posted 6/7/2012 5:02 PM (GMT 0)
Well, there is a bright side - please note the sarcasm - if you weren't taking all those narcotics imagine how bad the diarrhea would be!

BTW, are you a redhead? I know redheads are sometimes really hard to treat in terms of pain management. Gosh, I hope you figure this out soon.

And Dr. House may not exist, but the writers on the show sure do. Lisa Belkin, who often writes for the NY Times and was one of the consulting writers on the show, and has a book out on difficult medical diagnoses, practices medicine currently. I think she's in the NYC area, but I'm not sure. Maybe she can take a look at your charts. :-P

I had an HMO way back when and I know what a PITA it is to get all the referrals you need. Do you have a PCP you like and trust? Get that person on the phone and start making a plan. It may be hard to find a good GI without some detective work - I usually rely on my PCP to filter which GIs know what about IBD, but you do need one who treats people with IBD and not just someone who does screening scopes.

As far as things you can do without a DR - I would not suggest smoking, and I think you need a prescription for nicotine patches/gum/pills/whatever. Maybe your PCP can set that up for you. I would get back on an omega-3 and a multivitamin, if you can tolerate it - if not, try just some vitamin D and maybe a supplemental iron if you can take it without trouble.

One of my friends had a kidney transplant from her brother a few years ago, after about 15 years of watching her kidneys fail for no known reason. That's how I know a little about the dietary issues. I wish you the best, flaggot!
Posted 6/7/2012 5:11 PM (GMT 0)
YES!!! I am actually a redhead! I totally forgot that I knew redheads felt pain differently. I always had such a high pain tolerance and it took me soooo long to finally seek out pain management because I thought I was too young :\ apparently not. Thanks pops lol I love the inheritance

And oh man, that's why I haven't stopped taking the pain meds. I am terrified to not only go back to the way it was before but the withdrawal diarrhea would just make me keel right over and die lol...

I have a few private donors but they only just offered to consider removing one because the pain is that bad.
Posted 6/7/2012 5:13 PM (GMT 0)
I live in Phoenix btw, nyc is a long way away but i think i'll send her a letter or something. Maybe find her practice number and call just to see what they say. What's her specialty? do you know?
Posted 6/7/2012 5:17 PM (GMT 0)
Oh and I just saw the edit, you can buy the nicotine patches/gum/e cigarettes anywhere OTC really. I smoked for a couple years and I quit suddenly, then one day I tried again out of stress and got violently ill and I will never smoke again so that wasn't the plan :)
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