Hi friends,
Sorry that this is long and a little convoluted!
I'm a whopping 5 days into the elimination diet. My symptoms are still present (yes, I know healing takes time)--still taking immodium before bed but my colon is not nearly as gurgly as usual. I also shipped my sample to Enterolab on Monday, and it has not arrived at the lab yet. I don't know how long poop stays "fresh" but UPS said they cannot guarantee two-day air anymore and I guess they were right...so we will see what happens.
Regardless--here is my more immediate situation. I've been unsuccessfully trying to have a second child for almost 3 years. I've had 5 miscarriages and failed IVF, and I'm doing a second round of IVF right now. This is not unusual at my age (40), as my eggs are older and more likely to have problems dividing chromosomes. My pharmacist says that budesinide is relatively low risk for pregnancy, and that inflammation in the body is the larger problem when trying to conceive. (Hilarious to me that I've had celiac and CC for over 12 years, but no one mentioned this as an issue before. I've been aware of the systemic inflammation markers and have had inflammation blood markers checked periodically, but this is the first time someone suggested trying to get to the root of my problem--and it is a pharmacist suggesting this, not a doctor!)
I tried 3 weeks of budesinide this fall and it worked beautifully while on the 9mg dose; it stopped working as soon as I started the taper (big surprise, right?) I don't know if my GI would put me on budesinide for a longer amount of time, but if she thinks this is okay--how do I make this decision? Balancing potential long term effects of steroid use against the short-term desire to lessen inflammation asap since my fertile years are waning. Please don't think that I wouldn't continue with a strict diet and try to find out root causes of my CC. I know I wouldn't get the same responses to food sensitivities when taking the budesinide, but this is where I'm hoping the Enterolab results could help me (assuming my poop isn't stuck on a UPS truck for the next week).
I request that you please refrain from responding if you have strong feelings against IVF or question my desire to have a child at this age. I don't take these things lightly and am trying to do what is best for my family alongside my personal health. Infertility is a devastating journey and I will say straightforwardly that I need compassion as I navigate the budesinide question.
Many thanks,
Sonia
MC and trying to conceive
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Re: MC and trying to conceive
Hi Sonia,
Not to worry, your sample will not spoil during shipment — that would be about as likely as successfully screwing up a good train wreck. We once had a member in Singapore whose sample got hung in customs in Alaska, for about a week. When they finally managed to get through processing it, and sent it on to the lab in Dallas, it arrived there just fine, and worked normally. The reason for shipping the sample in a frozen state, by overnight delivery, is simply in deference to the delicate olfactory senses of delivery service personnel. If they delay the delivery, some of their own personnel down the line may suffer the consequences. But those sample containers are so well sealed, that they're not likely to exude much order, anyway, unless the sample is heated sufficiently for the air pressure inside to break the seal on the container.
Pharmacists are much more knowledgeable about medications than doctors, and they are willing to freely share that knowledge about any medication you choose to inquire about, including side effects, interactions with other drugs, system clearing times, etc. They are a grossly underutilized source of valuable information for patients using prescription drugs.
No objections to IVF or later-in-life pregnancies here, because if you're serious about your diet, and controlling your inflammation and symptoms by diet changes, your later years will be far better than those of most people in the general public who continue to eat inflammation-generating foods. Like me, you'll look around you and notice that most of your old high school classmates are disappearing. Many of them have been gone for years, and most of those who remain, have severe arthritis or some other debilitating health issue.
Preventing, and suppressing inflammation is paramount for maintaining good health in the long run. If it takes help from budesonide, now and then, in order to do that, that's probably a better choice than just allowing the Inflammation to continue unabated. Of course that's just my opinion, and I certainly don't claim to be a doctor, but I've probably spent more time studying this issue specifically regarding MC patients, than about 99% of the gastroenterologists in most countries.
Celiac disease is closely related with fertility and pregnancy issues in general, as I'm sure you're aware, so be sure you continue to keep all sources of gluten out of your diet, and away from your skin.
Tex
Not to worry, your sample will not spoil during shipment — that would be about as likely as successfully screwing up a good train wreck. We once had a member in Singapore whose sample got hung in customs in Alaska, for about a week. When they finally managed to get through processing it, and sent it on to the lab in Dallas, it arrived there just fine, and worked normally. The reason for shipping the sample in a frozen state, by overnight delivery, is simply in deference to the delicate olfactory senses of delivery service personnel. If they delay the delivery, some of their own personnel down the line may suffer the consequences. But those sample containers are so well sealed, that they're not likely to exude much order, anyway, unless the sample is heated sufficiently for the air pressure inside to break the seal on the container.
Pharmacists are much more knowledgeable about medications than doctors, and they are willing to freely share that knowledge about any medication you choose to inquire about, including side effects, interactions with other drugs, system clearing times, etc. They are a grossly underutilized source of valuable information for patients using prescription drugs.
No objections to IVF or later-in-life pregnancies here, because if you're serious about your diet, and controlling your inflammation and symptoms by diet changes, your later years will be far better than those of most people in the general public who continue to eat inflammation-generating foods. Like me, you'll look around you and notice that most of your old high school classmates are disappearing. Many of them have been gone for years, and most of those who remain, have severe arthritis or some other debilitating health issue.
Preventing, and suppressing inflammation is paramount for maintaining good health in the long run. If it takes help from budesonide, now and then, in order to do that, that's probably a better choice than just allowing the Inflammation to continue unabated. Of course that's just my opinion, and I certainly don't claim to be a doctor, but I've probably spent more time studying this issue specifically regarding MC patients, than about 99% of the gastroenterologists in most countries.
Celiac disease is closely related with fertility and pregnancy issues in general, as I'm sure you're aware, so be sure you continue to keep all sources of gluten out of your diet, and away from your skin.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Re: MC and trying to conceive
Thanks so much for your kind reply. It is helpful to know your opinion/that of others with MC. I'm reaching out to both the IVF and GI pharmacists where I receive treatment, and hopeful that they can help me navigate these decisions.
I'm also grateful to know that the lab results won't be affected by a delay in shipment! Hooray for packing tape.
More soon I'm sure,
Sonia
I'm also grateful to know that the lab results won't be affected by a delay in shipment! Hooray for packing tape.
More soon I'm sure,
Sonia