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sleeping in the bathroom and I need help

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Ulcerative Colitis
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Posted 10/3/2013 5:35 AM (GMT 0)
Yes, I know I'm not the only one, but this is where I've been sleeping this last week. rolleyes I fractured my tibia a week ago and I can't put weight on my leg.

It just so happens that my spouse is a quadriplegic and he has a Rolls Royce for a wheelchair that tilts and reclines, is all padded in gel etc, so it made sense to me to sleep in his chair in the bathroom. This way I don't have to risk getting to the toilet during the night. I have my own wheelchair for the day.

This is such a nut bar situation and I'm so completely overwhelmed. I'm going to the toilet 6 to 10 times a day. I've had two poop accidents in two days because I can't get to the toilet fast enough. It took me over an hour to clean myself up last accident (and yes I'm wearing diaper pads)I really can't believe I'm surviving the situation so far but a whole week has passed. I'm hoping for some help about pain medication.

I'm on azathioprine and Mesasal for my UC and I'm now down to X strength Tylenol with codeine for the leg pain. I was taking Percocet and hydromorphone earlier. The orthopedic surgeon was wanting me to take Advil for the anti inflammatory effect but I wasn't sure about that. My GI wasn't that helpful, he just said it's important to control the pain.

I guess I'm worried about my liver. Is there a better (safer) pain med to be on than Tylenol? I'm really nauseated too.
Posted 10/3/2013 7:51 AM (GMT 0)
Lodi,

That's a pretty awful situation you're in. It sounds like you're flaring. Are you on any steroids? I understand you have a broken bone and it might not help with the healing. But at least some hydrocortisone enemas to help with the urgency? How far up is your inflammation going?

I don't agree with your GI. It's not only the pain which needs to be taken care of. How long have you been on Azathioprine? Hopefully it will kick in soon and give you some relief. It's working great for me but I was on steroids when I started it.

Keep us updated and get better soon.
Posted 10/3/2013 8:25 AM (GMT 0)
You asked for help, I am going to chime in.
Sounds like your new to UC i.e. 2012

1st, I am going to assume your meds are correct and at least helping.
Your still consuming things that bother you.

You must get control over your food & liquids.
Have you tried dairy free yet?
Forget processed foods, that's over for you.
No fried stuff, no carb and or sugar beverages., no junk food.
If you have already stopped that type of stuff above it's SCD or Paleo time.

I know it's very hard stopping certain foods & liquids but,
go SCD as a base line for a week). Than slowly... ad one thing at a time.
Solution is coming to grips w understanding you can never go back to eating like you did prior to UC.
Our diet, your diet is at least part of why we are here on this site.

I am a modified SCD person.
Posted 10/3/2013 9:12 AM (GMT 0)
I doubt you'll be on it for long and with the Aza you should be having monthly blood tests which check for liver function so I wouldn't get yourself worked up too much yet.

Can you not take imodium?

I strongly recommend enema's though, they fix me almost immediately, and at least make me feel more in control of things.

Best of luck. xx
Posted 10/3/2013 10:40 AM (GMT 0)
How about Bentyl 20mg 3X a day?
If Bentyl works with you, that should give you some relief. And on the sides, see what other medications you may need to get out of the flare.
Posted 10/4/2013 1:07 AM (GMT 0)
Hang in there Lodi. There's always light at the end of the tunnel. I agree with everything "25yrs". I'm on SCD and its quite the lifestyle. Requires lots of commitment but is truly mother nature's formula for good gut health. Without that, all the drugs in the world can't change what the food you give the micro organisms in your intestines to digest.

Good luck. And let us know if you want further guidance on diet.

-Alex
Posted 10/4/2013 1:34 AM (GMT 0)
Poor thing, sleeping in the bathroom is tough, I give you credit for making it through the nights in there. I've nearly fallen asleep on the toilet in the throws of my worst flares but I never actually stayed in the bathroom all night. Perhaps if I had a fancy chair, it would make it easier. If you're in that type of condition where you can't get to the toilet fast enough and you're wearing diapers, you may need to reevaluate your medicine. Has you had the level of imuran checked? There is an ideal level, if you're under that level, you're much less likely to get into remission. What dose of imuran and what dose of mesalamine? Are you taking anything rectally? It's not easy to get a flare up under control but try to be patient, you will get back to sleeping in your bed. You're right about advil btw, it can cause more bleeding.
Posted 10/4/2013 2:06 AM (GMT 0)
Absolutely no advil for you. Not worth the risk of worsening GI bleeds.

With the Tylenol, you want to make sure you are taking less than 4 g per day, and you should have your liver function tested periodically. You might be able to convince your ortho to write you a script for a painkiller that doesn't have added tylenol (e.g. codeine without tylenol, oxycodone, etc). Did you voice your liver concerns to your surgeon or just your GI?
Posted 10/4/2013 4:40 AM (GMT 0)
Thank you so much everyone. Super helpful info.

about the 4g of Tylenol. I'm taking about 4g a day now so I will try to stretch that out a little longer, the pain has really decreased this last two days so I should probably be able to do that. How do you know that by the way? And yes, the codeine was prescribed separately.

I'm not having a great time on azathioprine, really nauseated, extreme fatigue, swollen ankles, headaches. I don't know the dose off hand, but I'm only on one pill now. Earlier in the year I was taking two and GI wanted me to be on three but I resisted because I felt so sick. Even with the two pills, I was still having a lot of when I had accidents and went 15 times in a day. Bleeding has never stopped since six months before my diagnosis.(just the odd BM here and there with no blood.)

My dose of Mesasal is 2000mg x2/day.

My liver function tests as well as iron/hemoglobin is done every two weeks. I haven't caught up with all the blood I lost last Dec/Jan

I definitely stay away from processed foods. I've tried GAPS unsuccessfully and I'm toying with trying SCD. I'm a bit hesitant because I got really sick doing GAPS and I'm also concerned that I developed UC while on a no starchy carbs paleo type diet. I've learned that one needs starchy carbs to make mucus for which a lack of can contribute to leaky gut problems

My GI was really hesitant about immodium when I approached him before about it. I just wanted to take it while travelling on an airplane. Does it really work? How much do you need to take?

This chair is definitely comfortable, much more than my bed would be right now, and the bathroom is large and pretty nice so it's not as awful as it sounds. I do appreciate you all giving feedback and support
Posted 10/4/2013 5:04 AM (GMT 0)
I feel bad for you, Lodi. I'm in remission at the moment, but for over ten years I've battled this disease.

I took 6mp, which is almost identical to azathioprine except for a difference in how they initially begin in your body. I did feel nauseated and fatigued on this medicine. It did have me in remission though, until a point where raising it would harm my liver and the lower dose was no longer helping enough.

I've been sick and sad a lot with this disease. I remember nights alone with just my dog. I would lay my head next to her bed on the floor, and she seemed to know that it was her turn to be strong through those nights. It wasn't the bathroom, but the bathroom was ten feet away.

I am a person that has IBS issues with UC. Even though Remicade has me in remission I do still have fast transit times in my bowels. I take lomotil (prescription) to slow down my gut sometimes. I've also used benefiber type fiber to help regulate my stools. This was recommended by my GI.

The thing that has worked the best for me is the Remicade.

Anyways, I guess I just wanted to say hi and that I sympathize with you. I still have some serious issues even though the UC is under control. Today I had to tell myself that I'm a fighter and that I will not give up. I may need rest, but I will always get back to trying to be healthy. It's a must.

Take care. Hopefully you get some sleep in there.
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