Depressed and Questions...just had colonoscopy and new meds...

I posted last week for the first time. Lots of belly issues past and present starting when I was in high school and now I'm 28 (stomach ulcers, Gerd, gall bladder, pancreatitis, IBS, C. Diff, etc).

Currently I have horrible diarrhea, vomiting, and severe pain that is not responding to bentyl, codeine, and immodium that I have been taking. I have lost 30 pounds since October. I also have erythema nodosum, joint pain, mouth ulcers, and have had a recent bout with pancreatitis. I had to go to the ER again last Sunday because the pain, diarrhea, and vomiting was so severe. They gave me fluids, morphine, and zofran and sent me home where I continued to vomit and cry in pain.

I had a colonoscopy this morning. The GI doctor said he didn't see any signs of IBD and actually my colon looked pretty good. He took some biopsies and said he was confused because based on my symptoms he was sure I had crohn's. He also said my liver labs are very abnormal but did not give me any specifics. He did switch me to questran (spelling?) and lomotil for the diarrhea and stomach pains and told me to keep taking the codeine. He said he would treat me for Irritable bowel syndrome and wait for the biopsies to come back and to make an appointment for three weeks to discuss the liver issues and give a little time to see if the new meds help with the diarrhea. He said that the erythema nodosum and weight loss does not occur with irritable bowel syndrome though.

I am sooo depressed right now. I am glad that the colonoscopy looked good and really don't want to have crohn's but I do want an answer so I can get treated and feel better. Has anyone ever taken questran or lomotil for diarrhea and did it help? This is so frustrating and I can barely leave the house any more for fear of pooping all over myself. In the past few weeks there has been like 6 or 7 times when I had an "accident" at work or somewhere else in public. I don't leave without extra clothes. I think I could probably deal with the pain if the vomiting and diarrhea would just stop.

Sorry this is so long just having a bad day. Any ideas, suggestions, etc would be appreciated. Thanks,

Sara

Hi Sara, I'm so sorry to hear that you're going through the wringer right now. You're right, you don't get EN with IBS. You also don't get weight loss or mouth ulcers. I'm not a doctor, but my guess would be that it's definitely something more than IBS, especially with the pain and vomiting you describe. That's not right. If you continue to vomit, or if you develop a fever or new symptoms, please go back to the ER and demand to be seen by a gastroenterologist. Vomiting could be a sign of bowel obstruction.

As to your question about meds, I haven't tried Questran but I do take Lomotil as needed and it works well for me. One pill usually stops my d for a full day (although it usually takes about a half hour for it to kick in for me, so keep this in mind and take it at least 30 minutes before leaving the house, just in case). On a really bad day I've had to take 2 Lomotils and that does the trick. I'd tried Immodium in the past with no success, so I'm glad that Lomotil works so well for me. It's saved my butt (no pun intended) many times when I had to work or drive or even just leave the house.

And one final thought, I really feel for you that you don't have any answers yet. I've been through most of the tests that are available, and everything came back normal, so I am still undiagnosed as well. For a little while I was also treated as if I have IBS (even though I have non-IBS symptoms such as weight loss too) and those treatments did nothing. Finally I asked the doc if I could try prednisone, and it worked wonderfully - and now that my docs know I respond to pred, they are treating me as if I have an IBD even though I'm still undiagnosed (apparently pred only works if there's something there for it to work on, and it doesn't work on IBS). So if the IBS meds don't work for you, don't be shy about demanding new meds. And if your doctor doesn't take you seriously, get a second opinion. You don't deserve to suffer like this. Good luck, and I really hope you get some relief and some answers soon!

You could have Crohn's in your small intestine, where the colonoscopy cannot reach. Have you had anything like CT or MRI to have a look? Or an endoscopy, if you have GERD and ulcers and stuff that end, biopsies might be positive for Crohn's.

Hi Sara
and welcome

Doesn't sound like IBS to me neither!
And I wouldn't ignore vomiting neither, I ignored mine and ended up blocked and infected. You do not vomit with IBS, so go to A&E and get it checked, there's something going on, and I agree that a course of Pred might work especially if you respond to it, it would indicate that there's inflammation somewhere.
Good luck
Joan xxx

Hang in there Sara. They told me I had IBS for twenty years and for twenty years I was off and on again sick. FINALLY, the last colonoscopy showed the ulcers in my large intestine. My doc suspects I have always had it, but it was mostly in my small intestine.

I've lost 20 pounds since November and while in my case it's welcome, to others it's not so good. Like Astra said about the prednisone. And get your small intestine checked. Blockages are no fun!

Sorry to hear of your pains Sara I hope you're able to find some relief asap. If you haven't already discussed it with your doctor I would recommend you ask him or her about an upper GI endoscopy and/or a small capsule endoscopy. The colonoscopy only covers the lower part whereas the other two I mentioned cover the upper and middle parts respectively. If you have Crohn's it can be located anywhere in your digestive system. Looking in just one part may not be enough to find it so I think you should ask them to look at the entire gi tract.

Thanks everyone. Sorry to be such a whiny baby about it…as you all know it just sucks when our guts are angry. I did go back to the Emergency room yesterday. After the scope on Wednesday I started having bad pain. I thought maybe it was just gas still so tried not to make a big deal of it. By about 10pm though I started running a fever, had bloody diarrhea, and couldn't quit vomiting. I went to the ER the following morning. I was there all day. They gave me fluids, morphine, and zofran again. They did a CT scan and some labs. They said no blockages but I did have bleeding (duh I seen it) and they said it looked like some inflammation probably from where the doc took biopsies. I was told today that the biopsies didn’t show anything abnormal. They said maybe chronic pancreatitis but still no real answers other than come back if it continues or I need more fluids. If it is pancreatitis causing all of this there has got to be something for it I would think also. I always thought that was kind of dangerous to ignore. It would also explain why my diabetes is getting harder to control. I think I’m going to look up another doctor for a second opinion.

I wish I knew how to do an IV myself then I could just hook it up at home every three days or so and not mess with the ER or the bills that are headed my way! No more fever today though. The new meds (lomotil and questran) are slowing me down a little but not much. I'm hoping maybe they are the kind of drug that just takes a little bit of time to kick in and fully work? I finally lost all pride and went out and bought some depends so at least I can go out and not worry about diarrhea running down my pant leg. The diarrhea is probably the worst part. I have a fairly good tolerance for pain but it is so embarrassing to be out and have an “accident”. I feel like I belong in a nursing home and I’m only 28 years old.

Hi Sara Jane, my GP prescribed Questran and it's quite effective for the D, but a few months later my GI said it's not good in active crohn's so i stopped. I believe it helps absorb bile in the colon and is used for patients after resection.

Ian

hey babe, sorry to hear you're hurting so bad wish there was something anyone could do to take it all away for you!

this might be a stupid question, but have you been checked for coeliacs? I started off with pretty similar symptoms with the weight loss and mouth ulcers and that's the first thing they checked me for.

if your stomach is really sore and you've got diarrhea, I would maybe try staying away from the codeine for a while to see if that makes a difference? just from personal experience. I stay away from anything with codeine in it now, makes my stomach waaaay sorer.
hope you're feeling okay.x