Supplements and Hormonal Birth Control

[brandy]

To add to what Tex said--

Colonoscopies are not without risk. One of my customers was out of work for 6 months from something punctured in a colonoscopy. Joan Rivers died from an endoscopy.

Since I've been on the board no one has had anything "new" discovered from followup colonoscopies to see what is going on.
They are just subjected to the expense and discomfort of the colonoscopy.

At your age you are at low risk of cancer.

The stress you are under could be making things a lot worse. I have some earlier threads advising folks not to do step downs on budesonide if they are under major stress: new job, job change, buying a house, getting married, kid going to prison etc etc etc

I think long term you will need a new GI doc but be aware that most GI docs want to do their own brand new colonoscopy particularly since your last one was 7 years old.

Buy the budesonide from India (we have many who do)

Or

One more conversation with the nurse. Major suck up call to the nurse. Tell her you are getting bristol 4's with end being bristol 6. You feel like you are making progress and feel like you can make a step down in 8-10 weeks. You feel like your step down attempt was too soon in December. You don't feel comfortable
doing the step down now given the reflare when you attempted this in December. Tell her you are under major stress
and you feel like it is affecting the healing rate due to Mom and Grandma possible cancer. Tell her the 3 pills of budesonide
now are allowing you to go to work, pay your bills and be a Mom. Tell her you are a single Mom M-F. You are concerned
a colonoscopy will cause the MC to reflare to 20 x per day and affect your ability to hold down your job and that you will
be back to square 1. Tell her it worked the first time, it is working now (albeit slowly) but you feel the stressors
in your life are affecting it's ability to work. Tell her stopping the budesonide and reflaring to 20 x per day would
significantly affect your quality of life and your ability to go to work. Tell her your concern is a colonoscopy would cause
a reflare and you would lose the quality of life that you have now. Again, this would need to be a major suck up call.

[brandy]

My insurance company sent me a free colon cancer test kit in the mail. (I did not request it.) I have Blue Cross.

[brandy]

I think you are doing well with a bristol 4 turning into a bristol 6. I would not attempt a step down until you are getting
consistent bristol 4's for approx 4 weeks even if you never get constipation.

[TiffanyR]

I am glad I am not alone in that I view a repeat colonoscopy as a high risk procedure. I hate that doctors routinely recommend and preform these types of procedures solely to make money (that is how I see it). In my eyes, even if they found some other form of bowel disorder (another type of colitis or chrohns) the treatment would be similar, if not the same. Some kind of steroid, if that didn't work, then maybe some kind of biologic.

I wanted to touch base and just say that it is now Monday morning, February the 3rd, and I STILL have not heard back from the GI doctor on whether or not he has approved a refill on my Uceris. Four business days and no reply on whether or not a refill can be done. Ridiculous. I don't feel like I am asking for much. And I really need to know if it will be approved because I have less than two weeks of my current prescription left. I feel like I may have to call back and basically beg for it to be refilled. Brandy, you are absolutely correct and it is no exaggeration that I cannot hold down my job and take care of my son if I backslide to where I was before starting meds last fall. While I do not like being on this medication, at all, it is really the "lesser of the evils" when it comes to colitis treatments. Its not prednisone or a biologic. And I am just trying to function in life. I'm still down 22lbs, even on meds. I can't imagine what would happen if I had to go off of them.

I am strongly considering ordering from the AllDayChemist link that Tex provided. I was hoping to hear back from my GI doctor before spending the money out of pocket but now I don't know if that will happen in time :/ I did want to ask if there will be any change if I go from Uceris to Budesonide? Since its technically a different medicine and breaks down / activates in a different part of the intestines; will I need to be on it for awhile before I get results? I guess my main concern is that because I only have less than two weeks of my current Uceris prescription, and it takes about two weeeks on average for delivery from this online pharmacy; I'm worried about the potential gap in time. I do still have some leftover 3mg Budesonide from when I tried to taper down in December, the 3mg capsules, that I figured I would supplement with as needed between running out of my current prescription and the delivery of the new prescription. I haven't had any bad side effects from the Uceris. But I am wondering because about 19% of the Budesonide is absorbed into the blood stream, should I expect to experience side effects that I may not have experienced on the Uceris? I just want to be as mentally prepared as possible. As the unknown increases my anxiety.

[tex]

It's impossible to predict if there would be any changes in effects because of the formulation change, because we all respond differently to these meds. But the odds are in your favor because most people do OK on either form.

Worrying about the unknown is a very, very common human trait, but it's a totally unnecessary reason for worrying because the actual result of the event is just as likely to be beneficial as it is to be detrimental. Why waste time worrying about something that hasn't happened? If worse comes to worse, and the change doesn't work, simply go back to plan A, or develop another plan.

Worrying in advance just creates unnecessary stress that increases the chances that it won't work. The chronic stress caused by unnecessary worry is one of our major triggers for MC reactions, and it's a totally unnecessary trigger. I realize that's much easier said than done, but it's very important to do whatever we can to ratchet down any sources of stress in our lives.

Tex

[brandy]

Hi Tiffany,

If you took budesonide before without side effects 7 years ago I suspect you would not have side effects on a subsequent use of budesonide.

My boyfriend and I were just talking about the importance of being in the moment, i.e. living in the day. You can't change the past.
Tomorrow is not here yet so why worry about it. What we have is today and how we deal with today.

Also, can the pharmacist call on your renewal? I'm not sure if they still do that but if they can and do it will take a load off of you.

[Gabes-Apg]

Tiffany,
Something I have learnt over the years, aside from what Tex and Brandy have suggested already, is that contraception medication depletes key nutrients like B6 and magnesium. (And others)
Both of these are key for multiple reasons,
B6 and magnesium moderate histamine
Magnesium is key for multiple reasons in moderating inflammation /effective Vit D use etc
B6 is one of the pillars of methylation cycle etc. as yes has explained above

On a side note, if you are relying on the Tri-Nesa for contraception then oral contraception is not best option while you have mc. Your ability to absorb dosage is impacted while there is inflammation and diarrhoea.

With most medications, there is the minefield of inactive ingredients. It is frustrating that the minuscule amount of inactive ingredient in that small pill could cause that much issues, sadly that is one of the realities of life with MC.

Make sure you spread oral magnesium intake over the day, do not have it all at once.

[TiffanyR]

I constantly worry. About everything. From the moment I wake up to the moment I lay down at night, and usually throughout the night because my worry keeps my awake. Anxiety rules my life. I know it does no good to fret over every little thing and sometimes I do good for a few days at a time but then, like a tidal wave, all my anxiety comes rushing back. My husband starting night shift has been extremely difficult for many reasons as I have mentioned in previous posts. But even more so, because he helps me cope with anxiety by making me laugh and keeping me busy with our family activities. With him only being home two days a week, I am missing that positive interaction and it has been very hard.

I know its so important to appreciate each day we have here on earth because life is fleeting and tomorrow is not guaranteed. My aunt, who was like my second mom, passed away unexpectedly last year in March. Her loss has been devastating and our family has still not recovered. She was the back bone of our family. The stress from this is likely a huge factor in why I went into a flare. But with her loss, I now try to take a few moments each day and appreciate all the good things in my life. Like my son, my husband and my mom. My mom got her biopsy results back and there is no cancer! She does have some cells that could possibly turn into cancer, so she has to have a procedure to get those removed but there is no active cancer. I am very relieved and grateful. My mom is my best friend, her and I are so close.

The GI doctors office finally called back and they approved two more months of Uceris. I am very glad. They did say that after the two months, if I am still unable to taper, that I will need to have a colonoscopy. I still refuse to have this done so I just plan on ordering the Budesonide capsules from the suggested online chemist once I near the end of two months. Brandy, thank you for reminding me that I have been on it before. That had completely slipped my mind. I was lucky all those years ago in that I did not have any adverse side effects so hopefully that will be the case this time as well.

I called the Functional Medicine doctors office again because I never heard back about how my labs turned out. The nurse called me back and said everything appeared normal except the following. I did request a copy of the full report but it will take a few days to get it in the mail:
Iron was slightly elevated but was not noted as a concern.
Magnesium levels were normal.
Testosterone levels were a little low but was not noted a concern.
Vitamin D was a bit low.

I have been taking 5000IU of Doctors Best Vitamin D3 daily for a few months now. I WAS taking 200mg Doctors Best Magnesium Glycinate at the time the labs were taken in mid-January but went off of it when I got really sick from trying to go off my birth control. So it sounds like I need to add that back in as well. I will do that slowly, starting with one pill a day and working up from there so as to, hopefully, not cause D to get worse. When I initially went on it I started slowly and gradually increased my dose and didn't notice any issues. I hope that is the case this time as well. Should I add in a B6 supplement after getting back on track with the Magnesium or should I wait until my stools are more stabilized?

[Gabes-Apg]

As we mention in the guidelines to recovery section, active forms of key B vitamins have been found by many to be a key part of the healing journey
best to outlay for active forms,
given the hormone issues I would suggest starting active B's sooner rather than later

if you have issues with the oral mag, switch to transdermal.