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Follow ups? Emergencies? Who do you see and when do you go?

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Ulcerative Colitis
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Posted 12/31/2014 1:56 AM (GMT 0)
I am a new member here. I was diagnosed in 2006, but I did not start having flares until 2011. I had a huge flare that just wouldn't stop. I spent 2 years trying to get into my GI. When I got in in 2013 he scoped me and said my disease had progressed and he moved me from suppository to oral salofalk. I kept flaring until March of this year, after multiple er visit for dehydration I arrived and was a high risk patient. The drs were shocked at the lack of follow up. I have had 4 flares this year, am not on Humira, but I am still flaring. I am not sure when I should see the GI. I have a new GI after recommendation from my admission in March.

When do you go to see your GI? I am in a flare with bloody/mucosy diarrhea 10-15x per day. I have gone to the er twice to get rehydrated as I was not keeping up. I am also vomiting 5-10x per day. I am worried that the prednisone I have been tapering up and down since September is getting thrown up, may be why the flare won't quit. The GIs in my health district (the whole office of them that serve our city) are on vacation with one on call from december 20-january 5. I was told at the er that unless it was life or death I will have to wait for January (which I realize is now coming right up). Would you try to see the GI when having a flare? How bad does the flare have to be before you see your GI? Do you make use of any other medical resources?

I hate going to the er because I feel like I am wasting their time, but I always either get admitted because things are worse than I think or they roll their eyes at me and tell me its just a stomach ache (FML... hate era without any GIs).

Do you go to the er with a flare? Or just wait until its super bad. I feel like there should be a user manual for this defective colon
Posted 12/31/2014 2:04 AM (GMT 0)
What country are you in? Your care so far has been very pathetic.
Posted 12/31/2014 2:04 AM (GMT 0)
You go see your GI when you are flaring. And then you continue going back monthly until you are not flaring. And then you continue seeing your GI during remission on a regular basis to make sure you are still doing well. The ER is not the place to get your UC treated. I don't understand why you needed 2 years to get into see your GI.
Posted 12/31/2014 2:09 AM (GMT 0)
i only go to the ER for pain because i can manage crapping my brains out at home. i also throw up a lot during flares and that leads to dehydration fast. when i do go to the er, i am always admitted for either the flare or some other thing i didn't know i had (appendicitis, c diff).

you are not wasting their time. it is their job to treat you. if you are having an impossible time managing at home, then go.

i keep in touch with my gi a lot when i'm flaring. i was having appointments every week or two for a long time when i started seeing him. a bad flare for me is any time i'm going between 15-30x a day. i find it very hard to keep weight on and when that happens, malnutrition hits hard and fast. electrolytes are low, iron is low, protein is low. you wanna try to keep ahead of it before it gets so bad (lesson learned). if humira isn't working for you, definitely talk to your gi about switching meds.
Posted 12/31/2014 2:15 AM (GMT 0)
I live in Nova Scotia (Canada). The GI I used to have I guess was well known for being 'delinquent' on appts. I got into him because he takes as many patients he can get and really up until 2011 I didn't need much more than the appt every 2-3 years that I got.

My GI has never offered to see me more often when I left hospital in May after my first dose of Remicade I did not see my GI until end of August/Start September when I had a reaction to the Remicade. I am wondering as I read other people's posts that most people get a lot of blood work when they are on the biologics? I have had bloodwork only when I have gone to the ER. Should I be concerned?

How soon after a flare starts do you go to see your GI, do you just call their office?
Posted 12/31/2014 2:27 AM (GMT 0)
I have wondered since the vomiting did not start until I started humira if it is just a side effect of the drug, but the visit I had from the GI in the hospital he told me that was highly unlikely and left it at that, no one has really found anything or given me advice, I do have a hefty prescription for Zoran which does help but I get constipated and it gives me bad cramps, so I guess it depends which devil I want really....
Posted 12/31/2014 8:28 AM (GMT 0)
Oh goodness.

You're GI care sounds as terrible as mine was at first.

If you are flaring you need to see a doctor until someone helps. I was diagnosed by a colorectal surgeon after having a colonoscopy. She put me on meds I couldn't afford and gave me samples. Then her office ran out of samples and she went on vacation and I had no one. From mid August 2013-November 2013 I lost 20lbs + and was still bleeding and only liquid stool. Finally I went to my regular GI and asked for help. That was the first time I had bloodwork done. Despite everything that was happening, my Colorectal Surgeon never did much to help me. I was referred to a GI (finally!!) after demanding it. I even got myself a referral at a big hospital 3 hours away, incase the GI i was set to see sucked.
Thankfully he was amazing. I got on Remicade shortly after seeing him. He and his nurse were wonderful, they returned my calls and included me on the treatment plan.

We should HAVE to find the answers ourselves... but sometimes these doctors just SUCK! wow!

At my work Zofran never helps my nausea. I can't believe you are on Remicade AND Humira?? Or did you try Remicade with no help and switched to Humira which is also not helping?

With the symptoms you have.... you really need to get in to see someone ASAP. And maybe have another colonoscopy done. Access how far the disease has progressed and it's severity.
It may be time to evict that defective colon and just Get Your Life Back!!

Please feel free to email me any time! I'm more than happy to help you deal with idiots doctors... I've been there and it sucks. I'm in the US so it is a little different, but have friends in Canada with UC and you should be getting better treatment!
Posted 12/31/2014 11:51 AM (GMT 0)

Somebody said...
:At my work Zofran never helps my nausea. I can't believe you are on Remicade AND Humira?? Or did you try Remicade with no help and switched to Humira which is also not helping?:

I am just on Humira. I had a reaction to Remicade and stopped it in August, started Humira in September. I am not sure if the humira is helping as I have developed vomiting which is either from the humira or a new symptom from progression of colitis, and I am definitely in the middle of a flare. I also find the humira very difficult to inject right now. I was ok until I had a "misfire" with the pen in end of October, i pressed and shocked and jerked it off my leg and not sure how much actually I got. So after that I decided to give the syringes a try these last 2 times. I called the pharmacy and I called the humira progress group to get help with self injecting because it was a lot more intimidating than I thought (especially when you think that it may be causing eye and vomiting issues). Both just gave me a list of directions that they were obviously reading out of the same insert I was. I thought they were supposed to offer some form of training.... anyway not impressed with my own ability to effectively inject but I do. That anxiety is probably not helping my flare at all either.

I got an appt to see my GP today so I will make it known that I need to probably see a different GI. My problem is that these steroids make me emotional and I am most likely going to cry a bunch but hopefully I will stay on track.

I am glad Zoran does not work for someone else, (Not sure glad is the word :P ) I have had a suspicion it was not working, but not sure if it was just me timing it wrong. So hard to figure out when to take it in order for me to eat which never seems to work and I end up vomiting everything up.

I will let you know how today goes, but I don't know where else to go from here if things do not get fixed. I guess I can wait until Monday and just start annoying the secretary at the GI clinic.... again....
Posted 12/31/2014 12:19 PM (GMT 0)
Omg sounds scary living in Canada when you have an illness. When I flared. I saw my doctor twice and the APRN called me three during the week times to see how I was feeling. Also sent me for blood a couple of times to be sure I did not have anemia and dehydration.

People are moving to Canada to get cheaper healthcare?? I would rather pay more here and get the correct treatment.

Sorry you are going through this! Is there another doctor on call while the others are enjoying their vacation?

Tell them it is urgent. Having D and vomiting can be dangerous. In the meantime try to keep up with a lot of fluids. Good luck
Posted 12/31/2014 12:51 PM (GMT 0)
Thanks Tinabeans. I was told by GI to go to er if I was having diarrhea and vomiting, ER send me home and tells me to see my GI because theirs is on Christmas holiday and they have one on call (literally consulting over phone line). The most I have gotten for treatment this time around was a recommendation to put by prednisone back up to 40, which was only at 35. My issue is I vomit anytime I drink, and about 20-30 min after I eat. So I am pretty sure that oral meds are just lost on me. Anyway each time I am in ER they fill me up with fluids and send me on my way, so I really am getting tired of this cycle.

My mother said if nothing got resolved in January she is going to take me down to Boston to visit our relatives.... sadly it may come to that if this keeps on.
Posted 12/31/2014 4:14 PM (GMT 0)
So my GP is as frustrated as I am. We are trying to decide whether or not to try and skip this humira dose if that resolves my vomiting, as it has been decreasing, and playing with the time I take my steroids. Also she is trying to get me a referral to a specialist in a different healthcare region, which would probably be best. Thankfully my in-laws live2 hours outside the city so we can use their address to be in their health region where they may be a bit better.

In the meantime I have been eating pretty much non stop candy canes... they don't seem to get regurgitated and I at least get some calories... may be not the best food health wise... but I need energy!
Posted 12/31/2014 5:07 PM (GMT 0)
You might want to think about taking peppermint tea instead, just as a thought. Peppermint is an anti-inflammatory and sometimes easy on an upset stomach which could be why the peppermint candy canes don't get regurgitated. At least if you switched to tea you could cut way back on the amount of refined sugars you are injesting and instead add honey or agave to the tea for extra calories.
Posted 12/31/2014 5:30 PM (GMT 0)
Awesome bad gut thanks for the tip :) Will be a chaser to my ginger tea :P
Posted 1/1/2015 12:49 AM (GMT 0)
So I got a letter in the mail today from the GI clinic that they did book me an appt on January 25th. I feel like this is too far away. It was mailed on December 23rd, so a month from then. It seems so far out and I am frustrated, but hopefully I am able to change clinics to out of city. That would be good.
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