HealingWell
Search Close Search
☰

First follow up post diagnosis

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 5/17/2012 7:24 PM (GMT 0)
Hi all,

I'm seeing my GI for my first follow up appointment post diagnosis. It isn't easy to get in to see her so I want to make sure I'm well prepared and bring up everything at our appointment, so I'm hoping you guys can help me think of questions to ask!

My situation:
- 24 y/o woman, diagnosed two weeks ago by colonoscopy with pancolitis UC (~75% of colon involved)
- Flaring for ~6 weeks with D with lots of B and M, occasional formed stool, 5-10 BMs per day, sometimes roused from sleep
- Minimal stomach pain pre-colonoscopy; post colonoscopy I've had a few very painful moments each day, usually before/after BM

Current treatment:
- 3x800 mg Asacol HD twice a day (4800mg total per day)
- Tylenol 3 at night before bed -- I tried skipping this one night this week and woke up every two hours with bloody D and sharp stomach pains
- Supplementing with L. Acidophilus tablets
- Immodium tablets as needed (usually one per day in the afternoon after codeine has worn off)

My doctor told me that diet did not matter so I ate freely (and probably too much junk... was relieved to finally be allowed to eat) for about a week and felt absolutely awful. I've been following SCD for a few days, having slightly less pain but otherwise symptoms are unchanged.

I know I'm definitely going to ask about starting rectal meds. Are there any other treatments that I should be asking about? If I haven't seen a change from the Asacol by now, is it likely that I'm going to be pushed to use prednisone? Are there any other alternatives with fewer side effects that I could ask to try before steroids? Is it too soon to start asking about rx probiotics (e.g. VSL#3)?

I'd hugely appreciate any suggestions or input you guys have, I know this community is super knowledgable and you guys know how to be your own best advocate :) Thanks!
Posted 5/17/2012 7:52 PM (GMT 0)
Eating fewer meals, and eating low-residue does matter a lot for you comfort if not for any change in the underlying auto-immune. You may also have mild sensitivities to some foods that never bothered you before, but will increase your gas, bloating, and diarrhea when you are flaring. So while true food generally does not matter for UC, it can matter a lot for the symptoms of UC, Some folks also think that special diet can allow critical gut flor to rebound in a way that promotes remission. But, there are many conflicting recommendations on diet.

Still, it might help communication with the GI if you distinguish things that cause/maintain autoimmune disease and things that increase/decrease your symptoms and comfort.

I would also discuss some sort of rectal med. Hydrocortisone short term, maybe Rowase longer term. (Be mindful that you may be sensitive to the sulfate suspension of the generic Rowasa).

Once the flare moderated a bit, I would recommend as much VSL#3 as you can afford. If you insurance covers it, get your GI to write for prescription strength. It is a great probiotic in my opinion.

You might also discuss having a note about a Prednisone taper in you file in case you get a severe spike. Since the GI is hard to see, this will facilitate phone arrangements to get a prescription sent out if needed.

Also, if there has been a lot of bleeding, strongly press for a check of iron and hemoglobin. I was anemic and feeling lousy. Thought it was all UC, but I felt a lot better once my iron levels were restored.

You might also discuss the GI's perception of Asacol vs Lialda. I like taking fewer Lialda, and there is a program currently (in US) that knocks $120 off the monthly copay.
Posted 5/17/2012 7:58 PM (GMT 0)
there are immunosuppressives. prednisone, standard taper, can be very helpful.
Posted 5/17/2012 9:48 PM (GMT 0)
Imuran and rectal meds have done wonders for me with absolutely no side-effects. Some drs also hate prednisone so it's not guaranteed that you will be encouraged to try it. However, as much as I hate Prednisone, it can be awesome for getting symptoms under control so maintenance meds can do their job.

I would suggest asking for your dr's opinion on alternative medicine. If it is something that interests you, having a dr with an open mind is extremely important.

Some clinics have nurse practitioners that work in conjunction with MDs as educators. You can schedule a long appointment with them (~1 hr) and they can go over the different treatments that are available, diet, lifestyle changes, pregnancy, etc. Check if they have a service like this available- it is very helpful and having another prescriber who you can call with questions is great, especially if your dr isn't great about calling back.

Make sure you are aware of any after-hours services the clinic has. It's nice to be able to call and discuss an urgent concern with a GI on-call rather than having to rely on urgent care/ER during weekends.
Posted 5/17/2012 10:36 PM (GMT 0)
Definitely get on the probiotics.

And keep trying the SCD diet - it could take quite a bit longer than 3 days to notice anything. I'd give it at least a month takes discipline but it can make a big difference for many people - me included. I think it's complete BS that diet doesn't matter and in my opnion your doctor is wrong and irresponsible there (others may disagree).

In my opinion the immodium and codeine while maybe helping somewhat but they will also be causing some issues especially the cramping pain. I'd try and get off those and get onto some rectal meds like Cortifoam/Colifoam to get things under control. They will help dampen inflamation and hopefully get you a good nights sleep and control a bit of the urgency they helped me in that respect.

Good luck and yes it's a good idea to go to your follow up with a list of questions. Make sure you're happy that you get them all answered to your satisfaction.
Posted 5/18/2012 2:38 PM (GMT 0)
Thanks everyone for all of your helpful answers!

My dr initially suggested going straight to prednisone, but I asked about trying rectal meds first... her reaction was "well sure, those are great, but are you willing to do that?" Lady, I've had so many different people's fingers up my butt at this point, yeah, I am willing to try! I've been on prednisone before and based on the extent of my involvement during this flare I think I will probably need it in the future, so I want to really try to get into remission without it if possible.

She gave me prescriptions for Rowasa enema to use at night and Cortifoam to use in the morning. I also asked about VSL#3 and she gave me all the sample sachets they had! Yay! Looking forward to trying the Rowasa tonight (can't believe I am looking forward to having an enema :))
Posted 5/18/2012 2:48 PM (GMT 0)
Wow, thanks for reporting back. I'd like every medical school class on gastroenterology to do a lengthy discussion on why rectal meds are good and *** is wrong with DRs for being afraid of proposing them to their patients! Or are they just jumping to conclusions! OMG. Whatever happened to the hippocratic oath: first do no harm. Prednisone is not a trip to the beach, it is a serious medicine that has awful side effects for many people.

Sigh.

Getting off my soapbox.
✚ New Topic ✚ Reply