Another Colonoscopy needed?

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crohnette

crohnette

Joined
Oct 24, 2012
Messages
41
Hi all,

I have a questions. I have been on Remicade every 8 weeks for 1 year now and I am also on 250 mg/day Imuran/Azathioprine and 8 giant horse pills of Pentasa/day. It is my first time on Remicade and Imuran. About a week prior to my last two infusions my diarrhea has come back. My last infusion was 10/27 and my next one is 12/13. I have been in contact with my doc about this already but I was wondering what your take is on the current issue which is that I have been having diarrhea ever since that week prior to my infusion. My doc wants me to have another Colonoscopy but I think that maybe the meds should be stopped first to see if they are adversely affecting me or if my body has started to reject or grown an immunity to them for lack of a better term. Thank you so much for your help! Any advice is appreciated!

Crohnette
 
you probably need another scope to see if the remicade is keeping things under good control. Yearly colonscopy tends to be the norm for adults with crohn's.
if things are good then the doc will find out if there are antibodies or if you have enough remicade left in your system prior to your next infusion. both tests will give your doc a better idea what is going on.
 
Hi, Crohnette!

I agree with my little penguin. A colonoscopy is probably your best bet. Does the prep tend to upset your stomach or anything? All in all, I'd say it's safer than stopping all of your medications.

I don't know much about Remicade. It might help to take a look around the Remicade section; maybe someone else has had similar issues.

I hope things go well for you! Please keep us updated. :)
 
crohnette, do not stop the Remicade. You don't want your body to start creating antibodies to Remicade. If that's your current treatment plan then its best to have testing done while you're on those meds so you know whether or not they're actually working and if the doses need to be adjusted or if you need to try something else.
 
Prep day is here! Colonoscopy tomorrow! UGH! Hate prep and my doc makes me do it with Gatorade. I hate hate hate gatorade. Hopefully, they will figure out why I am so flared.
 
crohnette (love the name) I get a scope once a year. I've been on Remi and Pentasa for the last 5 yrs. The scope is done to evaluate how well the treatments are working plus to look for any possible problems with side effects.

You sound like my wife. She had a scope done about a month ago and she hates Gatorade also. Good luck tomorrow. I have an appointment tomorrow with my GI to decide whether to stay with Remi or switch to Humira or if surgery is in the near future. I think we'll b e sticking with the Remi.
 
Gatorade is so gross! Yeah, I have been on Remicade for about a year and a half now, time sure does fly, now I am flaring and have been since 2 weeks prior to my last infusion and it haven't stopped. I am hoping for some answers. Don't know where I will be headed after tomorrow.

I am glad I am not the only person who hates gatorade. :)
 
Oh no...I can't do the Gatorade any more- makes me feel sick just thinking of it...this year (Last Thursday!) I mixed lemonade/Crystal Light equal with the Miralax and it went down better...still didn't finish the whole thing but was cleared out enough....

You def. want to have regular checks to make sure things are going well...my scope on Friday was good - only minimal redness, am in remission! 7 years on Remicade - and I was able to stop imuran about 2 years ago, so right now I'm ONLY on Remicade!....

Next scope now doesn't have to be for 18-24 months instead of a year - unless something else happens of course!

Good luck with the scope tomorrow!
 
I asked and they told me that gatorade/powerade are the best options otherwise straight water. I don't know if I could do that either. I feel sick, but I am done with that part and think I am cleaned out all the way. I am dizzy and lightheaded and feel really icky.

I will keep you all posted when I feel up to it tomorrow or Thursday for sure with prelim results. Thanks for all of your support! It is awesome to know you aren't alone in this!
 
Ok, so yeasterday, things didn't go well at all. I woke up in the a.m. With a headache which turned migraine. Went in for the scope and was awake the whole time and they couldn't get through to the end of my colon which isn't good because my issues are in the ileum and small bowel. So I felt the entire thing and they'd ere jamming it into me and I am feeling the repricussions of that today very sore abdomen. After, on my way home I threw up three times and continued through out the evening, ended up in the ER for fluids and morphine for the headache. They did a cat scan which thank heavens was normal but was sent home feeling the same as when I went in. Continued to throw up throughout the night and finally stopped at 5am. So I have a medically induced hangover for nothing really. Thinking of giving up on the medical community especially when it seems they do more harm than good. :yfrown::frown:
 
Hmm, if your problems are in your small intestine, they should probably have done a capsule endoscopy as well. If I were you, I'd ask about that.

Why couldn't they get through? Was it inflammation, scar tissue, or something else entirely? Did they give you any medications, or an appointment to see your doctor?

I'm sorry you're feeling badly. :hug: It's probably just a bad reaction to the medications they gave you - next time mention it and see if they can alternate something else. Are you feeling better now?
 
No, they couldn't get around one of the corners and they just kept jamming it in. It was so painful, and I am pretty upset about it. The last time I had one I was awake the whole time too and the pain was terrible that time too. I am done with colonoscopies and I really never understand why they do them on me since my Crohn's is in my ileum and small bowel. Why don't they just do a follow through or the capsule camera thing. I don't know. I have no voice left from vomitting every hour for 16 hours straight, so I can't even call to discuss the situation with anyone. Been pretty rough week. I probably sound like a whiner but I am usually pretty strong I am just tired of being used as a human pin cushion and being put through so much when I already deal with enough on a daily basis. Kinda crabby about it all. :x
 
You don't sound like a whiner, that sounds awful.

I used to get Versed (conscious sedation) for my scopes, but one year I had a particularly painful experience (my doctor tells me, I don't remember it, :lol:) and now I get propyphol when I go for my scopes. It's a little disorienting because it's just a total blackout, loss of time like you didn't exist during that hour or two, but you definitely won't feel pain during the procedure.
 
Ya I'm never fully conscious for scopes. Usually have Demerol to help calm me down at first then they give me Versed and I don't remember the procedure (as long as they wait for the Versed to kick in, they always ask me how I'm feeling and I yell, "I'll remember this!" Then they give me more and more until I'm not all that responsive :p).

If you're still vomiting after the procedure and didn't have anything to sedate you then you should really consider going to the ER as a perforation during a scope is a very real possibility.
 
Sorry I missed that post. What did the ER say was causing the vomiting? I'm assuming they gave you something for nausea, did that not work?
 
No, it was from a migraine. It was one of the worst days. What could go wrong went wrong, I started throwing up before my colonoscopy, because of lack of food I got the migraine, at least that is what I came up with, I had stopped eating Monday night or liquid diet since then and my scope was at 3 pm on Wednesday. I woke up with the headache and took imitrex for that and it didn't help. I took my magnesium citrate at 11 and threw up an hour later and threw up pretty much hourly after that. It was horrible, humiliating too. Then the scope was just awful. My mom was my driver and she was about ready to scream at the entire clinic because they didn't sedate me the last time either and it was pretty bad then too, not this bad though.
 
I don't understand why you weren't sedated. Does that facility just not do that or did you elect to be awake the whole time? Its not an easy procedure and there are a couple bends in the colon that are pretty rough to get the scope through as you of course know though.
 
I guess they only sedate at certain clinics, this not being one of their facilities that does. I wasn't aware I wasn't going to be sedated until I didn't fall asleep. I was given meds but just pain killers but they did nothing for me or at least it didn't feel like they did. I was practically crawling off of the table. It was really fast and since I have had Crohn's for so long they don't always explain things as well because they figure I have been through it all already. They obviously didn't bother to look at my chart because the last one was really bad too and it was noted in there. This was a quick hurry up and get her scheduled because remicade isn't working like it used too and they are looking for a reason.
 
Whenever I'm told I'm going to have a scope I ask the doctor if I'll be sedated before the scope is even scheduled. If not, I ask where I can have it done where I will be sedated. It takes a while for Versed to kick in for me and I let them know that before the scope is scheduled and right before the scope. I tell them that I don't want to remember any of it because I know its a painful procedure. When you do another one in the future, be sure to let them know that you MUST be sedated otherwise its not happening. There's no reason for you to be tortured over and over again when its so easy to sedate people for this type of procedure.

I had a bad GI who began the procedure right after Versed was put in my IV. It takes time for it to kick in and he didn't wait. It was so incredibly painful and there was no reason for it to be. He was just trying to hurry up and get everyone's scopes done, too many people to do in one day which he should not be doing. I never even went in for the results. I reported him to the hospital and never saw him again. The nurses were trying to tell me that I was making things up but I remember almost the entire procedure until the Versed kicked in. It wore off while I was in the middle of yelling at the nurses. :p
 
Crabby said:
I had a bad GI who began the procedure right after Versed was put in my IV. It takes time for it to kick in and he didn't wait. It was so incredibly painful and there was no reason for it to be. He was just trying to hurry up and get everyone's scopes done, too many people to do in one day which he should not be doing. I never even went in for the results. I reported him to the hospital and never saw him again. The nurses were trying to tell me that I was making things up but I remember almost the entire procedure until the Versed kicked in. It wore off while I was in the middle of yelling at the nurses. :p
Click to expand...

My last colonoscopy I got a double dose of Versed AND Fentanyl and was completely coherent the entire time.

He started shoving the scope in 5 seconds after they put the drugs in my IV :ywow:
 
My oldest used to have a pathological fear of needles, and was frequently dehydrated, so as you might imagine, this would create a medieval torture scene each time she had to have an IV, which was pretty much twice a month.

So anyway, one day she's at the infusion center at the children's hospital for her Remicade, and they see the order that she's to have Versed before they start the IV. They balk at this because "We've never had to do this before, we're great with kids' IVs". I tell them they may be great at it, but we've reduced seasoned IV nurses to tears with Sarah's histrionics.

So they give her oral Versed, which takes at LEAST 20 minutes to kick in, then proceed to start the IV 3 minutes later. They can't say I didn't warn them.

They forced her to take the IV by holding her down. 15 minutes later mid-infusion, the Versed kicked in and she fell asleep. I was sooooo pissed.
 
FullM3lt said:
My last colonoscopy I got a double dose of Versed AND Fentanyl and was completely coherent the entire time.

He started shoving the scope in 5 seconds after they put the drugs in my IV :ywow:
Click to expand...

Ya that's not waiting at all. For me it takes about 10 minutes at least for the Versed to kick in and that's through the IV too. :/ GI should keep asking questions to see how the patient responds before beginning.
 

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