Brand new

[Layneelou]

Im 35 and just got told I have colitis, proctosigmoiditis? I don't like my GI, he is very intimidating to me for some reason, so I am looking for a new one. My symptoms started about a year ago, got to the point where I'd throw up or have diarrhea no matter what I ate or didn't eat. My PCP put me on Nexium to start while I waited for my endo/colononoscopy appointment. The vomiting stopped immediately, and the diarrhea and cramping were a tiny bit better. Then the GI says I have ulcerative colitis (I still don't know if all these terms are interchangeable or if I'm just confused). He added asacol to the mix. I then had bad cramping, so he spread the dosage out to 3x a day vs 2. Helped for a couple days, then terrible diarrhea for three days and my PCP put me on a 5 day dose of prednisone. That made me feel really good. He bloating and almost everything else went away for 3 whole days. GI won't keep me on the prednisone, but he increased the asacol to 4x a day and added carafate 3x a day.

I guess I'm curious as to why I'm more miserable after starting all the meds? My husband wants me to stop everything but Nexium. But I am worried about going cold turkey off the asacol. Maybe this is just a natural progression of symptoms and it's only a coincidence that it is happening when I'm starting all the meds. I'm so confused. And I really wish I could I have a rum & coke right now

 

[David]

Hi Layneelou! Welcome to the community Let's see if I can clear up your confusion a little.

Ulcerative proctosigmoiditis is basically Ulcerative Colitis but limited to the rectum and sigmoid colon. It does not involve the descending colon. It's not a term that is used very commonly but it can be important to know because proctosigmoiditis can respond a bit better to topical rectal medications than Ulcerative Colitis that also involves the left side of the colon. Of course, your GI gave you all oral formulations so all I can say there is *shrug*

When you say you're feeling more miserable after starting all the meds, can you explain specifically how you feel worse?

Now, the meds might not be right for you or maybe just haven't done their thing yet, but you do need to understand that Ulcerative Colitis is pretty serious and just using Nexium will not end well. Unfortunately, finding the treatment regimen that is right for you can take a little time.

Again, welcome We're here for you!

 

[Layneelou]

Since starting the meds after the colonoscopy, my bloating is worse, cramping is worse, and I have a very tight chest (hurts to yawn or take a deep breath). Prior to the colonoscopy, I had some cramping and diarrhea, but wasn't as uncomfortable. Thanks for clarifying the terms.... It all is overwhelming right now. I was happy to find this place. I had an autoimmune issue previously where I was covered in hives for three years, the support forum I found for that helped my sanity... I am very glad there is one for me now that I'm a poopy pants

 

[Keepingfaith]

I just wanted to welcome you to the forum ((HUGS!))

I'm sorry you were DX with UC & I just wanted to echo what David already said: There are rectum meds that can help your UC since it is limited to the sigmoid/rectum. My Crohn's Disease involves my colon & I use steroid suppositories from time to time. They are a blessing! They don't have all the crazy side effects of steroids either! I would also like to say that steroid enemas could help you even more because they can reach all the way to your sigmoid. Of course these drugs can't be used log term but they are great for getting the inflammation under control. There are also meslamine enemas that can be used as your maintenance medication. They produce very little side effects, if any! Just google canasa suppositories/meslamine enemas. It is better than taking a pill & unless you are allergic to sulfur, there are may rectum meds!

The asacol often times is not enough for UC patients but your disease is limited to a 'smaller area'(for lack of a better phrase) than other UC patients. It will take a while for your body to get used to the Asacol but often, with time, it will get better. It could be possible you are allergic to Asacol. If you are, it can cause nausea, upset stomach & even MORE Diarrhea.

I hope you feel better, lovely! I am praying that your GI can help you or you can find another GI more well versed in UC. If you have ANY questions please feel free to ask! We are like a family here. There is also a UC subforum & people there can probably give you way better advice! :kiss:

 

[Angrybird]

Hello and welcome to the forum, I am sorry to hear that you are not doing well at the moment Fingers crossed you can be seeing a new GI soon because when living with an disease like this it is important that you feel happy with your doc and the care you receive from them. I would agree that it is worth discussing alternative meds with your new GI (or PCP if the GI appt is going to take a while to come round) if you are getting worsening symptoms/potential side effects on your current treatment regime.

I hope you can be feeling better soon.

AB
xx