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Ulcerative Colitis
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Posted 4/1/2016 3:44 AM (GMT 0)
Hello I don't know were to start the story but I'll try my best. My mom started having a problem were she would have small bleeding once and awhile. This was around 1 and half years ago. At that time her family doctor had prescribed her medicines but it had not worked. So my family doctor then sent my mom to a specialist. My mom had her colonoscopy done and the specialist had said it was a very small inflammation and I mean very small he even underlined very. He prescribed her medicane for 2 months. Unfortunately it did not work so he prescribed another medicane which also did not work.As time went on the problem got worse and the specialist gave a oral and a medicane to take from the anus. Once again it made the problem no better but worse. At the last medicane he prescribed he said he guaranteed it would work. But mom kept telling him it would just not work and my mom could not sleep at night without going to the washroom every hour. Today was another colonoscopy and when the doctor started he quickly said the problem has gotten worse and he did not expect the problem to get that bad in 6 months. He was in shock himself. They are going to keep my mom at the hospital and they are doing the highest dose and then they will check if the inflammation goes down and if it does not she will have to go through surgery. Is there anything she can do has anybody experienced this first hand. The doctor did say this is a common problem and when my mom asked him how this happens he said nobody knows why but it can be apart of a family and genes. Iam sorry if I made any spelling errors I am quickly writing this. Also the problem is proctitis but I think it has gotten worse. My mom has also lost weight. I just hope and pray the high dose works.
Posted 4/1/2016 6:25 AM (GMT 0)
it is kind of difficult to tell what is going on as you did not state the medications used

im going to guess she was put on some form of 5 ASA and she had a reaction. when someone is allergic to them (not unheard of) they can look like worsening symptoms
i am also going to guess that she is reciveing some sort of steroid now

weightloss and frequent bowel movements are just two of the very common symptoms of inflammatory bowel disease

please find out what medications she has taken as well as what medication she is getting now in the hospital and at what dosages

when is the last test for C. diff and CMV and ova and parasites performed. if not since begining of hospital stay she needs another one

as well as what is her CRP, fecal calprotectin and SED rate/ ESR

if she does not have a drastic improvement after three days of IV steroids than she should switch to a biologic medication like remicade. they will need a couple days to do bloodwork before they start remicade so I would suggest you have them start doing this now so that if they need to start remicade they can start as soon as they feel necessary

it might be wise to start someting like imuran (azathioprine) or 6mp or mexotrexate
these meds work excellent in combination with biologics like remicade

remiacde is working wonders for me i went from about 30 daily bms to about 15-20 overnight
and the pain was decreased by a tremendous amount. I was able to get off the constant IV anti nausea medicines after just 2 or 3 days
Posted 4/1/2016 1:23 PM (GMT 0)
Without knowing the medications, yes this is not an uncommon experience. IBD is unpredictable. Patients have been known to get fulliment UC in a matter of weeks, despite treatment.

Sue
Posted 4/1/2016 3:14 PM (GMT 0)

Dikid said...

when is the last test for C. diff and CMV and ova and parasites performed. if not since begining of hospital stay she needs another one

^^^ that is important! Some medications (steroids) can make C. Diff much worse if it is present during treatment. If it's IBD then they may want to use a steroid to get her closer to normal in a quicker fashion. It would be a good idea to rule out C. Diff early.

Can you post what medicine(s) the doctor has her on?

I know it may be scary but I don't think your moms story is too uncommon. I had somewhat of a similar start with UC. The first year the doctors just kept giving me antibiotics saying it was a stomach bug. Then, as I felt more pain (but couldn't really describe where exactly) they sent me to some unrelated specialists. During this time I went to the ER a few times. They generally just checked my prostate and/or gave me antibiotics. The last specialist I saw was a digestive specialist who ordered tests and found it to be IBD. Then they were able to rule it to UC. Funny thing is the digestive specialist was just a 'I don't know whats going on, who knows, lets try a digestive doctor' referral.
Posted 4/2/2016 3:44 PM (GMT 0)
Thanks for the comments everybody but here's the update:The specialist has done blood test and apparently the inflammation has gone down and she only used the washroom 3 times in the day. The doctors gave her a option where she can go home and give herself the injection once a week. Or she can come to hospital and they will inject the medicine and she will be sleepy/tired for 4 hours. They said people who chose a injection once a week by themselves can't really do it and end up coming back. So they have told my mum she can stick with the high dose. My family and my mom have been researching a lot about the problem and there is a new medicine which the specialist said he can get but its only in the USA but they can ship it to Canada. However if you start the USA Medicane you can't come back to the high dose. But if you start with the high dose and it does not work you can use the U.S. Medicine. So we are going to start with the high does because it has been working.
Posted 4/5/2016 2:13 PM (GMT 0)
My mom is starting remicade today. And
Posted 4/5/2016 2:29 PM (GMT 0)
Ahh. Remicade is a drug that works wonders for many of us.
When you say high dose, are you referring to double dose?

Just a heads up with remicade. Many of us start when flaring and get an initial improvement and than all of a sudden deteriating. Here is why, or at least what the docs say.
Basically remicade is a protein based medication so when flaring and albumin and protein are low the remicade doesn't have as much to work with so to speak.
Therefore we flush a bunch of it out of our bodies.

Many of us needed to increase the frequency of our doses as well as the amount of medicine we got. Standard is 5mg/kg.

It's not completely unheard of to start at a double dose of that is what you were referring to.

I strongly suggest that she begin taking an immunomodulator as well as the remicade.
Not only does it directly help the inflammation, it also helps our bodies not make antibodies to the remicade. There are excellent studies that show that remicade plus an immunomodulator (imuran/6mp/methotrexate) is far more superior than either of the two alone.
Posted 4/5/2016 2:52 PM (GMT 0)
Iam not sure of the dosage. But she will have to come back once and while to get her remicade.At first it will be a couple of weeks and then it will go higher to maybe 8 weeks she will go to the hospital.The specialist told us to pray and hope it works. He did however say there's a good success rate.My family doctor also said there are many new successful medicines that have come out in the past five years. Also can you tell me about the side effects. I just want this to work.
The Medicane is expensive and Canada's health care is free but you still have to pay for it. But it does not matter I just want her to get better.
Posted 4/5/2016 3:12 PM (GMT 0)
Good luck to her. I am sure it will get her back to 100%.

and yes, everything you described is common with this illness.
Posted 4/5/2016 3:13 PM (GMT 0)
Basically the medication binds to soemthing called Tumor necrossing factor or tnf. This is what causes an inflammatory response, so basically remicade goes in your body and makes the tnf unavailable to attack your colon.
It also means our bodies are not able to fight infections as easily and she needs to be vigilant.

Some people get headaches by their infusions and I have just learned that taking Benadryl before the infusion can help

Some people get mild abdominal pain, some get tired
Some get reactions causing joint pain

I went from 30 BM to 10-20 overnight. I was very sick and hallucinating and the next morning the doc woke me up and the first thing I said was I feel so much better. I was back in school about 6 weeks later.
Some take longer to respond, and some don't respond but like the doc said it has a good track record

Look into patient assistance from the drug company. In us we have remistart that gives up to 20k a year
Posted 4/5/2016 3:20 PM (GMT 0)
The response rate to remicade is generally 60ish percent. I'm currently in remission (meaning zero uc symptoms) thanks to remicade.

Remicade has an initial set of loading doses that are spaced closely together (at week zero, 2 and then 6), afterwards an 8 week maintenance treatment is typical. Once in maintenance, both the dose and the intervals can be adjusted based on patient response. Remicade generally is fast acting, most have an initial response during the first 6-8 weeks.

Regarding side effects, their statistically rare (less than 1 percent odds), but serious when they do occur. The Crohn's and Colitis Foundation of America has some great risk versus benefits information :
Webcast: programs.rmei.com/CCFA139VL/presentation/player.html
Transcript: www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

Your doctor is right, there's a lot of other biologic medications (like remicade), such as humira, simponi, and entvyio. And more are in the pipeline for near future approval. Plus immunomodulators like Imuran or 6mp that are currently available.
Posted 4/5/2016 5:38 PM (GMT 0)
Remicade can be a miracle for some of us. I have been on it for 10 years and in remission since shortly after my second infusion.

I know it's more common for those of us in the US to be closely involved in our medical care, but with a chronic lifelong disease it's really important. While my specialist went to medical school, did a residency and one or two training fellowships and started his practice, I lived with UC. He will likely get married, raise children and retire and I will still be living with UC. I believe there's good reason for me to believe I know more about my UC than he does, and to participate fully in making my medical decisions. Your mother shouldn't be afraid to ask the names and dosages of any meds she's given, how they work and how they possibly could harm her. It's good to educate yourself about your condition so you know what you want and what your options are.
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