HealingWell
Search Close Search
☰

quite the story ):

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 6/2/2011 5:39 AM (GMT 0)
Hi HealingWell.
So many things have happened in the last three months, it's been quite the whirlwind. I first posted on here due to my GERD like symptoms, and later after a trip to the E.R I found out that my gallbladder was only functioning at 8% - and was full of stones/sludge, not to mention is was inflamed twice the normal size. To make a long story short, I had a cholecystecomty - and everything was going pretty well. I had checked in post-op with surgeon and he told me I was healing great. Everything seemed A-Okay, and for once I was actually feeling GOOD.

Now, it's been about six weeks since I had my surgery, but about two weeks ago I was having the same kind of symptoms as before. My surgeon had originally told me that he thought I had two different things going on, and that my gallbladder just happened to be causing me increased pain. You could imagine my horror. I thought that maybe I was suffering from post-cholecystectomy syndrome - and that in time things would get better. I finally took a trip to my doctor, and she gave me a new prescription for proton-pump-inhibitors, which hadn't worked in the past; but I decided to give them another shot. She also switched my cholesterol medicine, but that's another story.

Last week, the day before my high school graduation I felt so sick. Sicker than I had since I had my gallbladder out, so my mom took me to the E.R. They ran all sorts of tests, and my doctor had already scheduled me for a barium swallow. I've had this chronic nausea that comes and goes, along with all the symptoms I'd had before (burping, trouble swallowing, stomach pain, loss of appetite). I've lost 28lbs since my surgery because anything I eat either upsets my stomach so bad, or I'm just not hungry. This might be a little TMI: but I couldn't even tell you the last time I had a normal BM ): anyways, the ER doc said that she was pretty sure that I had Crohn's Disease. She thinks that I have Gastroduodenal Crohn's disease, which I guess affects the lining of my stomach, along with my intestines. She gave me a prescription for Carafate in the meantime, because she said she won't be able to do much until I have the Barium Swallow. She also gave me a prescription for Lomotil, which works wonders and Promethazine - which is the only thing that seems to help me live life day-to-day. Which I know isn't good at all.

She even thinks that my gallbladder may not of had to come out, but I'm just so lost right now. I'm only 18, and I feel like my life is just beginning but I can't enjoy it because I'm so, so, sick 24/7. I thought things were going to be okay for once, and then BAM. I hit another speed-bump. I just want a solid diagnosis so I can at least have something, because simple 'gastritis' isn't working for me.

I wanted to know if anyone else has had the barium swallow and if it shed light on anything?
I also wanted to know if anyone knows how I can get a prescription for Promethazine, because the one I have says no refills - and it's the only thing that seems to put an end to the constant nausea. Is it even good to stay on all this medication? I'm not even sure if I care anymore, I just want to feel better.
Posted 6/2/2011 9:00 AM (GMT 0)
I have a Daughter your age with Crohn's. I know how you must be feeling right now. First of all, you need to know that the diagnostic phase is the toughest time. There's so much anxiety, as we all would want to know what's going on.

Once a firm diagnosis is obtained, then you can get on a treatment plan. You need to be able to have confidence in your Doctor and GI. There are numerous levels of severity with this disease, and also numerous medications. You may find that you have a mild version, and get by with a simple medication.

Try not to worry. You must be very mature and assertive, since you were able to find this website and post your story.

The other thing is, this website is a tremendous resource. There are alot of great people here that are willing to help you out. Continue to post questions, and check out the new videos at the home page. 

Good Luck,

Tom.

Posted 6/2/2011 12:10 PM (GMT 0)
I first started to show signs when I was 13, but I wasn't diagnosed until I was 23. So I understand how it is to be just starting life and wanting to do all the fun and exciting things everyone else is, but being sick and miserable. Flash forward and I am now 46 and I can say that the periods of time that I have spent sick are literally little blips of my life. Yes they suck when I have to live through them, but they pass and in the grand scheme of life it is just a few months. I went to college, got married, had kids, worked and enjoyed my life. Crohn's was just a small part of it.

The initial diagnosis part is the hardest because you and the doctors don't know what your body will respond to. It takes time to find the right medication(s) to keep the disease under control, but once you do, you will get your life back. SBFT can give some good results. It is one of the tests that I have good results from. But everyone is so different that you might need CT scan or MRI to see better what is going on. And there is always the pill camera endoscopy.

Keep posting and asking any questions you have.
Posted 6/4/2011 6:30 AM (GMT 0)
Thank you all for the kind words! It brings me so much relief to know that I'm not alone, which is why I was so happy when I found this website. I'll be sure to keep you all updated in the coming weeks. Has anyone had the upper barium swallow before? I'm starting to get a little nervous about it now that the date is coming up. My doctor mentioned something about having the endoscopy after the swallow, or if my symptoms progress after we decide on treatment. I'm going on a trip to California on the 21st and I just want to be feeling better by then.
Posted 6/4/2011 11:27 PM (GMT 0)
The barium swallow isn't too bad. Unlike a colonoscopy, you don't have to do any prep beforehand, which is a great gift. The barium's texture and taste are pretty gross, but they seem to improve the stuff every couple of years. So it's not what I would call fun, exactly, but it's not nearly as bad as other tests they could have scheduled. Bring a book, in case it takes you a long time to drink the stuff. (Some people can chug it, but I just can't make myself do anything but sip it slowly through my teeth, so it takes me forever to drink all of it.)

Good luck. Trust me, it could be worse!
Posted 6/5/2011 1:42 PM (GMT 0)
I have had to drink Barium more times than I can count. For me the trick is to chug it while holding my nose. It makes me look a bit funny, but I don't care. If you can't smell something, you can't taste it as much, so.... It has the texture of a chalky milkshake, they usually keep it pretty cold and you usually have to drink 2 big cups full. Then they will take Xrays every 20 minutes or so to see how far the barium has traveled. When it gets far enough the Radiologist will come in and take a bunch of pictures and then you are usually done and can go home. Make sure you drink plenty of water to flush the barium out of your system. Each of us is different, so it might take you only 45 minutes to move the barium into place, while it might take someone else 4 hours. Always be prepared with good reading material. As tests go, this one isn't bad, the worst part is the sitting around waiting. Best of luck.
Posted 6/5/2011 2:35 PM (GMT 0)
One thing I might add to Zanne's suggestions is to walk the halls, it helps to get the stuff to move. At least thats what I always do. Also, be sure to drink lots of water after wards to get that gunk out of your body. Sometimes it causes constipation after. Hugs!
Posted 6/5/2011 3:55 PM (GMT 0)
I had a situation similar to yours. I had a cholosysectomy done and when my ibd symptoms started shortly after we thought it was either the post chole or pregnancy stuff (i was pregnant when I had the surgery) a few months later after I delivered I had to go to the er because things turned for the worse, had a colonoscopy which revealed ulcerative colitis, then a year later it was changed to crohns. I have never done the barium swallow so I can't comment on that. keep your chin up. waiting on a diagnosis is hard and filled with anxiety.
✚ New Topic ✚ Reply