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Complete bowel rest for a few days...

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Crohn's Disease
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Posted 2/8/2009 3:05 AM (GMT 0)
I know it's been discussed, but I have very pain pills to make it through the weekend and I'm petrified of an ER visit. I'm contemplating visiting the outpatient clinic type setting tomorrow to see if they'll do something to get me through the pain until at least Monday morning. I had called my surgeon's nurse (who is an absolute sweetheart) on Monday and discussed at length that I was getting out the study and examining my options (biologics, surgery, etc). I told her the pain is getting to be unmangeable and I figured I'd run out of pain pills by the weekends end. I'm down to like 5 or something like that which will only probably get me through most of tomorrow...and that's as long as I don't have a terrible spell like I'm having at the moment. I had to take 3 Norco AND a Levsin and I'm still sitting at at least a 3 out of 10 pain level and when I was admitted in July, they would not let me get above a 3...

So, I'm fearing another hospitalization. I think I'm going to force myself onto a bowel rest. Is this safe without electrolytes from an IV? I was on IV fluids for 4 days and then moved to boost for 2 days and soft foods for 2 days, granted I was also given steroids, which I can't take right now....

I'm just desperate for some relief from the constant pain. And it does NOT help that my period is due to start any day...in fact, that in itself on top of my "iffy" situation with the Crohn's could send me to the hospital in a heartbeat... I'd just really like to avoid the ambulance AND the ER this go around...
Posted 2/8/2009 4:52 AM (GMT 0)
Why cant you take steroids?
Posted 2/8/2009 10:53 AM (GMT 0)
Hi if your having so bad a time of it Kaycie I think you need to be under hospital care for awhile and I too wandering why you cain't go on the pred.? lol gail
Posted 2/8/2009 11:19 AM (GMT 0)
You should always contact your doctor first, but it is my understanding that you can safely do a bowel rest with liquids such as Ensure and Boost. Just make sure you drink enough of them during the day so you get proper caloric intake, and drink plenty of water. Hopefully someone else will come along with more advice. Feel better!!!
Posted 2/8/2009 4:41 PM (GMT 0)
Okay, first...

I can't take Pred because the last time I was on it, my blood pressure soared. I had to take blood pressure meds to help it down and they even had to increase those for a short while. I developed high eye pressures and was put on eye drops. I swell up like a balloon and gained 21lbs in 3 months. (The later doesn't really matter, a lot of people go through that). The main issue is my GI said that when he see's BP's rising with Pred, it often times is the end of Pred because it will only continue to get worse. He rapid weaned me off of Pred and said he would treat me with non-steroidals from now on because of the BP and the cataracts. Even a small dose of 5mg could trigger it all over again. I usually have a healthy blood pressure of 100-110/60 and it soared to 145-150/90-100 even after a TON of rest.

Secondly, I'm going to call the GI and surgeon tomorrow. I was remembering before I fell asleep last night that I actually did 4 days of clear liquid, 2 days of all liquid, and 2 days of soft food. I know you can't go longer then 5 days on clear liquid only. Boost and Ensure have been known to tear my belly up as well, so I'm considering just drinking clear liquids today and maybe something easy like PB sandwiches to snack on...and then see how it goes.

2 factors that probably triggered all this pain: 1) my period 2) antibiotics. I've been on a z-pac for a horrible sore throat that I could barely swallow. I have stopped mid-way and am also calling my family doc tomorrow and I think I can fight the rest of this cold on my own...

Gail - It seems to take a lot for my docs to admit me. The last time I was even fearful of them admitting me. My mom and/or husband usually accompany me to the ER or to doc appts just to make sure I really let them know the seriousness of whats going on (I'm terrible about hiding behind my pain..I'm too much of a go getter and leader and I hate to fail...). Anyway, a number of times my mom has had to put her foot down about them trying to send me home. I don't get why. Again, I hide behind it well. Just because I'm up and moving does not mean I'm not in considerable pain. I have an 18 month old that needs me. I have a job that relies heavily on me... I forge through most things.. The only reason they admitted me in July? My BP's were soaring to 180/100 because of the pain and they were dosing me with dilaudid every 90 min and still couldn't get my pain under control for 14 hours. It's just the location of my disease. I know we ALL hurt, but for some reason I don't always show signs of D..I usually start to have spasms and the feeling of constipation and can't go which leads to insurmountable pain. I have Crohn's Colitis...hence why I've certainly considered surgery. I almost wonder if a temp ostomy would not allow my bowel the true rest it needs? Not that I'm wanting that.. I obviously have a few more options left...but the pain factor is what gets me everytime..and I can typically withstand pain quite well. I was dilated to 8cm and my daughter's foot was out of the birth canal by the time I got to the hospital to deliver my girls. All I had was 2 tylenol for some "back pain"....yeah I was hurting by the end...but I talked myself through 4 hours of tough labor... that's just kind of how I am. I didn't stay on pain pills long after delivery either. I had an emergency c-section and was walking the malls at 5 days post partum. I'm a little stubborn and hard-headed as my family sometimes lets me know... I guess that's a bad and good quality, eh?
Posted 2/8/2009 7:32 PM (GMT 0)
Hi Kaycie sorry I forgot about your high blood pressure but yes I remember now you had mentioned it. You sound a lot how I used to be when it comes to suffering things threw I guess I got a bit spoiled or I guess I started to realize how much things hurt and that I needed to get some help. ..Your Mom sure been keeping an eye on you or at least it sounds like it. Hope you decided or at least coming close to deciding on what you are going to do. Will be thinking good thoughts for you. Good luck tomorrow. lol gail
Posted 2/8/2009 11:18 PM (GMT 0)
I have Crohn's Colitis too, I don't really know what that means but this is what my GI has told me. I also get incredible pain with no diarrea, which I was confused about but my Dr. said it is because the inflammation is low on my colon. I get tons of blood and pain, but bm's are OK right now.

When I need to rest my bowel I make a stock. I boil a big pot of water with chicken, onions, garlic, carrots, broccoli, whatever veggies I have, really. Then I drain all the food out and drink the water. It has vitamins that I need but is much easier to tolerate. If you cannot tolerate the fat from the chicken you may want to leave that out, as some fat does go into the stock (most of it will float to the top when it cools and you can scoop it off).

I hope your pain goes away soon, it is so hard to function in that much pain! I went home from work early on Friday because it hurt so bad I couldn't even work. I get the hiding the pain thing, I do that too because I don't want to let my family, work, and sports teams down, but I have learned I have to be more honest, and so far no one has been upset with me for taking time from my responsibilities to take care of myself when I have to. I went to ER once for the pain and the Dr. told me I was just constipated (even though I was having regular bm's) and actually treated me like I was exaggerating or something. It was the first time in 11 years with this disease I decided the pain was bad enough for ER and I ended up feeling embarrassed and judged and in just as much pain. I imagine that for a lot of us this is part of our reluctance to go to ER.

Hope you get well soon.
Posted 2/8/2009 11:53 PM (GMT 0)
Gail - My mom is a SAINT! She has been there through thick and thin. She knew before I did that something was just not right. I have been so doped up on pain meds when the ER that I tend to just brush it off, but she is always adamant that something be done. I work for my parents, so I sometimes work from home or come in late or leave early. I'm really behind at work, but I get the necessities done. My mom literally counts my bathroom breaks because if not, I could care less. I have that constipation feeling and I end up going and nothing much comes out because it's just my rectum spasming. No fun. But, she's not obessive about my disease, she simply just has the mother's intuition when I'm not acting right. Then I usually break down and tell her what's up. She has supported me through the loss of my daughter, her granddaughter...was my matron of honor at my wedding. Was there with me through a scary fluke retinal detachment where I almost lost all vision in my left eye (and mind you, she just had her wisdom teeth pulled!). And, she drives me over to St. Louis once a month, or more often if I'm having problems. She puts herself to the side to make sure I have the strength for my little girl. And, at whim, she has picked my daughter up and cared for her when I was too weak. That breaks my heart, but to know her grandmother is always there when her daddy was at work and I was terribly ill...it makes it seem ok!

Sassy - Crohn's colitis is just Crohn's located in the colon. So, it seems like it's both UC & CD, but it's pretty much just Crohn's, but primarily located in the colon. I've been told it's the most painful and hardest to control. And, I get that about the docs in the ER. But, I've educated myself enough that by the time I feel the need to get to the ER...well, the doctors sometimes are shocked about what all I know because they just have "generalized" info on the disease and not the nitty-gritty (like antibiotics causing flares, your rectum swells so bad it makes you feel constipated, etc,etc.) One doc told me that he wished he had a med student with him when he was examining me because they could of learned a lot from my case, as I was definitely "unique" Go figure eh? But, I do hide the pain for fear of not getting done what I need to. But, the last year I have really been honest and everyone has noticed it because of all my "little" errors I make here and there. They are all understanding and have been trying to do whatever they can to relieve some stress from my plate. I have scaled back tremendously and many people keep up with my blog to see how I am doing as well as my daughter (and my hubby too) because my daughter was a preemie and lost her twin sister at birth...longer story. Anyway, the first ER visit after I was dx...the doctor swore I didn't have anything wrong. Gave me a rectal exam with her pinky and my husband and mom had to hold me down as I was literally screaming in pain. I kept trying to tell her there was this lump that was so painful next to my vagina. 24 hours later I returned to the ER and the NEW ER doc (whom I gently reminded that if they came me a rectal exam, I was going to give them one in return) found a 2x2 abscess just outside my vagina. They lanced it and then tried to d/c me when I couldn't get out of the stirrups and after a few rounds of morphine. They even packed it. I seriously hate the ER, and now when I get there, I almost always request they call the GI on call. And, my new GI told me that if they try to start steroids to request a transfer immediately. The ER is just not meant to deal with our situations, but yet our situations ARE urgent. Ya know?
Posted 2/9/2009 1:49 AM (GMT 0)
That is one of the reasons I joined this web site. I realized I have to learn more about this disease so that I can communicate better and so that I can get to know when it is time to call the Dr., go to ER etc. I think I will take your lead and try to learn more so that I can get my needs met better.

I was sorry to hear about the loss of your daughter Reagan. I cannot imagine anything more painful than losing a child. It sounds like you have an incredible strength and a wonderful support system which will help you through all of this.
Posted 2/9/2009 2:08 AM (GMT 0)

sassy28 said...
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I was sorry to hear about the loss of your daughter Reagan. I cannot imagine anything more painful than losing a child. It sounds like you have an incredible strength and a wonderful support system which will help you through all of this.

Thank you. No, it hasn't been easy. But one thing that reassured me was the numerous high-risk OBs and GIs that told me my medicines and disease did NOT cause her severe anomaly. I miss her daily, but her twin sister gets me up everyday and makes me smile. Days are still hard, but I'm incredibly grateful for both my girls. Reagan taught me more then she'll ever know, especially about HOPE and my daughter Addison is the light of my life. She keeps me going on the most difficult of days. When I was in severe pain in the ER, even though I could barely move and felt uncontrolable, I was still able to break a smile when I saw her sweet face. Children are an amazing gift...amazing...
Posted 1/1/2014 3:19 AM (GMT 0)
I have colitis & was lucky enough to find & follow & HEAL myself with Jini Patel's book. Unbelievable! I had already been admitted to a terrible hospital stay & did not want to return there ever again. It takes discipline & a feeling that "you'll try anything" but I was able to stop a flare (bleeding)on my own. Following her protocol (sometimes feeling whacky) worked. I wish I could get the message out to everyone. I stopped putting my trust in my doctors so much & began putting it in myself. I recommend the book "listen to your Gut" by Jini Patel. Life changer!
Best part is I'm off my Asacol that I'd been taking for 12 years.
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