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Crohn's Disease
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Posted 5/28/2008 12:36 PM (GMT 0)
Hi Celey Hope your sleep was more restful. You mentioned you had a colonscope done .I am not sure that would of checked the small bowel for blockage, are you bloated up? Pain meds can cause C too. Hope your doing better.lol gail
Posted 5/28/2008 2:06 PM (GMT 0)

Hey Celey,

Have you tried stool softners yet?  I think part of the problem with the C you are having is caused by the pain meds.  I use a stool softner every evening and it helps to keep things moving if you know what I mean. 

Posted 5/28/2008 5:52 PM (GMT 0)
Really? I had a abdominal CT scan done a few weeks before the colonoscopy... and it didn't show any sign of blockage or anything, either... :(.... *Suppose there's always a chance I'm partially blocked, though...* I still have those Dulcolax from when I was preparing for the colonoscopy... I don't want to end up becoming dependent on them or anything... *I have taken some a couple of times after the colonoscopy... they do help me not struggle so much...* Since I am having such problems going, though... Probably the best thing I can do is take them... If I didn't struggle so much and if I could get some more out, maybe my tummy wouldn't hurt so much all the time... then, I wouldn't be taking as much pain medicine and maybe that would help, too... *Anything to make me feel better... Right now, because of all the prednisone I'm on, it's very hard for me to keep on that liquid diet... but I've been very good... haven't eaten anything. Because I just really want to feel better, even just a little better is nice...*

*I tried to do some stretches last night before I went to bed... was hoping that would help me feel not so stiff when I woke up, but it didn't work... :(... Hurt just the same as ever (my tummy, too... every morning, I don't know why it feels the need to make me feel like it's trying to claw itself out)... worse actually.... when I finally got to moving and got up... and went into the kitchen... made some tea.... then, I sat down and got a shooting pain all up my back... First time that's ever happened... Hope I just sat down wrong or somethin'... Don't want any repeat instances...*

At least, I can be very thankful for such nice roommates I have.... One of them is going to make beef stew today... :)... So... I'll get to enjoy some very nice-tasting beef broth... //^_^\\.... *I have a lot of chicken noodle soup stocked up... so... I've been able to have some chicken broth... but... it's nice to have variety...*
Posted 5/28/2008 5:59 PM (GMT 0)
Yes, I agree with Nanners... When I take pain meds I will take Milk of Magnesia (I chose the pills, with plenty of water). I don't have to take them every day, but if I take more than one or two Vicodin, or I feel like I am stopping up, I take them. The pain meds can really make a person constipated!
Posted 5/28/2008 11:28 PM (GMT 0)
Celey, can you tell us exactly what your diagnoses are, and what pain meds you are on? I'm getting a little lost and confused, and it's making it hard to help.

Thanks (and a hug)

I.
Posted 5/29/2008 12:48 AM (GMT 0)
Well, I have Crohn's disease (that's why I'm here)... I was diagnosed with it in November 2006. Because my GI doctor isn't very communicative and because I sometimes get intimidated, I don't know everything I could possibly know about my Crohn's disease... I've managed to find out that it is effecting my terminal illeum (dunno if its effecting any other area or not; I guess since I have such problems with hemmorroids, it's probably effecting me rectally, too), but I don't know specifics like how much of that area is inflammed. At one time (beginning of 2007), my GI had been talking about surgery for me... and a hospital doctor had said the inflammation looked really bad... But when I went to another hospital, they didn't want to do surgery on me because they said I'm too young, it would lead to cutting out more and more, and that it should be a last resort and that I should keep trying the drugs first. This is also the hospital where I had the MRI done (and that's where the vascular surgeon came and told me his concern about one of my arteries and how it looked weak.... and then later him and a team of doctors came in and told me it was clinically insignificant and that I didn't need to worry about it. So... *Shrugs*)

Pretty much all I know... I haven't been diagnosed with anything else yet (I'll find out the results of my blood work and X-rays this Friday... I don't want to have anything else wrong with me, but clearly something is wrong with me having this joint pain and all... and I want to know what's going on, so that I can be treated for it, too)...

The medicines I'm currently on are Asacol, 3 tablets 3 times a day... Prednisone 40 mg a day... and Imuran 100 mg a day...

I'm taking Ultracet/Tramadol for pain... I can have one every four hours. Sometimes, I don't end up needing to take one every four hours... It makes me happy if I can go a few hours after the time is up and not feel like my tummy is ripping itself to shreds...

When I was in really, really, really bad pain, and the Ultracet wasn't helping me, I managed to get my GI doctor to call in a different pain medicine for me, Laroset/hydrocodone... I haven't taken it in a long while, though... and I only have one left. I'm saving it for if I do end up getting into such excrutiating pain again and the Ultracet doesn't work...
Posted 5/29/2008 8:52 AM (GMT 0)
Thanks, Celey. That's really detailed, and really helpful.

Celey, I don't know if this will help you, but this is an idea and it's something to consider: it is possible that your Tramadol is causing your nausea, and maybe your constipation too. I understand that you're in terrible pain, but do you think you'd be able to manage off the Tramal for a few days, just to see if that would loosen up your bowels and ease your nausea? I know it will be really hard and I feel bad even suggesting it, but it might be worth a shot. I had nausea for a month once, and it turned out that it was the Tramadol that caused it. It wasn't a drug reaction as such; just something that can happen if you take it for extended periods. And I know it can affect the bowels.

This is just an idea and you may not be feeling well enough to try it, but might swimming (or even sitting) in a heated pool help? My gut feeling is that the heat might relax some of the muscles and help to the impaction to pass, especially if you're able to do a bit of kicking.

Much sympathy,

Ivy.
Posted 5/29/2008 9:23 AM (GMT 0)
I used to take hot baths often to help with my Crohn's pain... It did help, but... then there was that time I got a urinary tract infection... And I just had this really awful experience. I'm too afraid to take baths, now.

I do want to feel better... and I know if I keep getting stopped up, I'll start cramping up a lot again, and that'll probably make my pain worse. :(... The Dulcolax didn't help today... I did manage to go to the bathroom, but it was still a horrible struggle... and I got out about two thumb-sized drops... *Maybe tomorrow?*

I have a heating pad (I also had a massage cushion, but it recently ran out of batteries and I have no more batteries)... that can help with the pain. I don't like lying in bed all day, but with the way I've been feeling, I haven't been getting out much, anyway... so... I might as well try going off the pain medicine and see how that works.

Hope the heating pad will keep the pain at bay... :S... When the pain gets bad, it gets really bad... *Really dread that*

..... And I was thinking about switching to soft foods... I was planning on staying on the liquid diet until Friday. But the prednisone is really making things hard.... and I was on a liquid diet Saturday and Sunday... and it's not helping much at all. I might as well eat... 'cause I'm going to suffer regardless, seems like... :(
Posted 5/29/2008 9:45 AM (GMT 0)
*grimace*

Celey, it really sounds as if you're in strife there. We / you need to take care of your emotional health. This pain and worry is really not good for you. I know your gastro is away, but is there *any* other doctor you could see? Is there a medical service on campus, for instance?

You poor chook. It must be beginning to feel as if this is going to go on forever...

*hug*

Ivy.
Posted 5/29/2008 9:26 PM (GMT 0)
this is going to sound real mean and horrible..... but if you think it is real bad constipation - there is a fast way to find out and clean out........ a little bit of the pseusoda prep oh the spelling???? it's the small bottle of yuck but it's over the counter and works within seconds..... it will clean anything out..... any from the sounds of it, it won't hurt anymore then you are now.......(had to use the stuff for a colonoscopy clean out)
Posted 5/29/2008 9:26 PM (GMT 0)
Yeah... It does feel like it's going to go on forever, but I'm really trying to be hopeful. They haven't tried everything yet... It's probably just a matter of getting me on the right medicine, and then I'll be back to normal... and hopefully, get into one of those really long remission periods... and then everything will be great..

There isn't a medical service on campus... (When I felt a little better, I had been asking around about what it would take to get an on-campus nurse and everything, but since this is such a small college... and there are some penny-pinchers here, it could be a long time before this campus sees anything like that. If at all...)

I'm going to see my primary care doctor this Friday. Today's Thursday... Maybe if I tell him how desperate I am to feel well again... and how far away June 9th seems to be... maybe he can consult some other GI doctor and I can get on something else and maybe start tapering the prednisone... and then when June 9th comes along, I can just fill my GI in on what happened. I've really been taking a look at the medicines and treatments that are available... and I've been wondering what works the fastest. I don't think I can bear staying this miserable for three to six months...

I dunno... :(... At least, I'll find out the results of my blood work and X-rays... If I can get rid of at least one source of my misery (the joint pain), that would be nice.

As it is, I'm having a really rough time today... :(... The heating pad helps with my tummy pain... but laying down for so long makes me so stiff... and all of the heat was making me feel really nauseous... Don't even feel like eating anymore. And I'm starting to feel pretty cramped.... tried to go to the bathroom... and after all the struggling... I only got out one little poop.... :(... This really sucks...
Posted 5/29/2008 10:12 PM (GMT 0)
Okay... This is probably just a side effect of my medicines or something. Pretty sure one of them causes irregular periods and whatnot... but with how bad I've been feeling lately... man...

I finished my period... about May 15th...

I just got out of the bathroom... There was blood on the toilet paper when I wiped my vaginal area. Now, I have something else to talk to my doctor about... //-_-\\ *Guess it's a good thing I have an appointment June 3rd to get an ultrasound done, too... but if this is a period, I guess they probably won't find out much about those ovarian cysts...*
Posted 5/29/2008 10:56 PM (GMT 0)
Hi Celey Seen you were online just wanted to say Hi and glad your seeing your Dr. tomorrow. My problems were alot in my TI too and now the bowels are alot better after surgery.No pain now so if you have to have surgery someday at least you might get some relief. The meds weren't opening up my small intestine. I am glad your friends made you some broth sounds good. Best of luck tomorrow . Your almost to your appointment thank goodness .lol gail
Posted 5/29/2008 11:32 PM (GMT 0)
Celey, will you make sure you tell your doctor about the stiffness whenever you lie down? That sounds important to me, and I think it's something that needs to be addressed.

I hope you were able to get some help.

I.
Posted 5/29/2008 11:45 PM (GMT 0)
Yeah... I've already told him about the stiffness and joint pain. That's why I had X-rays done... and he did a lot of blood work on me, too...

:(... I don't know what to do with myself today... *Been in and out of bed... everything hurts... Feel queasy and exhausted and depressed* And I actually have a friend coming over today... She's been very depressed lately herself... and really lonely...

Which is why I agreed to let her stay the week with me... but I don't know what we're going to do... I don't think I'll make her depression problems any better... but maybe being together will do us both some good, anyway... I hope so.

Summer classes are going to be starting soon, too.... June 2nd... Mine are early in the morning, so.... my friend will probably be sleeping during that time, anyway... Man, I have to get to feeling better. I can't go on like this... I need to be back to my old self again... Or something close to it...
Posted 5/29/2008 11:50 PM (GMT 0)
Keep on hoping, Celey, and keep holding on. Remember, you get to see the doctor tomorrow.

Is there anything good on tv that you can watch?

I.
Posted 5/29/2008 11:52 PM (GMT 0)
PS. One thing that helped me when I was at my most desperate was to cross off each hour and each day until I got to see the doctor. That way, I felt that all I had to do was get through one hour at a time, and I knew that even getting through one hour was an accomplishment. That might help you too.
Posted 5/30/2008 12:40 AM (GMT 0)
I'm not much of a TV fan..... I'd like to curl up with a good book... but I've felt too bad to walk to the library... :(... *Been playing a few games on the computer... but I'm not much of a game person, either*

I like writing... think I'll write a story...
Posted 5/30/2008 12:48 AM (GMT 0)
That's terrific, Celey! I thought maybe you'd be feeling too awful to read, so it's great that you can.

Have you tried looking at writing / story sies on the web? You might be able to download some stories to read, and you might be able to find some proper books too.

I.
Posted 5/30/2008 1:26 AM (GMT 0)
Reading is a really good distraction. There are a couple of sites with stories, I know... but they're mostly written by amateurs. I'd probably get really sick if I had to read a story that can't even spell the word school right. //^_^\\'...
Posted 5/30/2008 6:41 AM (GMT 0)
:(... I had to take a pain pill... *The pain got really bad... even with the heating pad on... and I just couldn't take it anymore* And my friend was coming over.... I didn't want to be in pain the whole time... :(
Posted 5/30/2008 9:53 AM (GMT 0)
Hey, Celey, don't worry; you do what you have to do.

I hope that even that little break helped you. Did you notice a diminution in your nausea, or a feeling that things were starting to move through your intestines again? I hope so.

How did you go with the doctor?

I.
Posted 5/30/2008 11:50 AM (GMT 0)
My doctor appointment isn't until 1:30 today... (U.S. central time). I will definitely let you guys know what I find out...

*I was trying to sleep... but I can't seem to sleep... I'm tired... but... I just can't sleep. Maybe I'm too anxious about the doctor appointment? Maybe subconsciously I'm not letting myself sleep because I don't want to stay in bed and wake up hurting like I do every morning...* Or maybe I spent too much time in bed yesterday... I dunno...

I didn't notice a diminution in my nausea... Actually, it seemed worse than usual yesterday... (Maybe because I switched to soft foods... because it seemed like every time I put something in my tummy, I'd start feeling sick...)

The bathroom was still like going to battle... Very painful. :( But that one bowel movement I had with only one poop wasn't the only one I had... I had a couple more... Both yielded a few small poops. I am glad that at least something is coming out... I just wish it wasn't so painful and didn't take so long... and that I don't feel so cramped all the time.
Posted 5/30/2008 1:29 PM (GMT 0)
Celey please talk to your doctor about stool softners. I am telling you without them I would be in a world of hurt myself. They at least allow me to have a bowel movement everyday and helps to relieve the nausea and upset gut the constipation causes. My GI supports me taking them and told me if they ever quit working to start taking Miralax. But they have worked fine for me for YEARS.
Posted 5/30/2008 1:30 PM (GMT 0)
P.S. Just fyi, Tramadol/Ultram really upsets my stomach alot, I can't take it. Maybe the doc could prescribe a different pain medication.
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