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At My Wit’s End – Should I Be Nursing My Baby While in a Flare?

Intro:

I’ve had UC for 8 years and I feel as though I’m at a crossroads with it. I’m hoping to find support and feedback from others that can truly relate.

Some more background:

I’m from Pennsylvania and a proud mother of a 9 month old. Being a SAHM has been one of the most challenging and most rewarding achievements of my life. I also have a 10 year old English Bulldog, who was our first baby of the family.

Symptoms:

I’ve had the normal symptoms of UC…urgency, pain, blood and pus. I can only eat eggs, rice and rice pudding.

Sarah’s Story:

Since the birth of my daughter, my UC has been relentless.I’ve been on Uceris, Prednisone twice and now Humira. I occasionally take Colestipol, so I can actually function. I also take Delizcol/Asacol and have for many years. Unfortunately, nothing is working and I’m at my wit’s end. I’ve since started taking a high quality probiotic and L-Glutamine as well as drink plant based protein drinks throughout the day.

Prior to my daughter, my UC would only rear its ugly head every two years or so. It’s amazing what pregnancy and giving birth does to the body. The chances of my husband and I expanding our family further is slim because of my UC.

I used to feel my GI doctor and his office were empathetic but that has since changed. The practice has grown substantially and the one-on-one care has faded. It’s a struggle to get the attention one needs when they feel like they are literally starving to death. I hate how the medical field can turn the care providers cold.

Additionally, I’m still nursing my daughter which is stressful. I’m unsure if I should continue because it may be contributing to my flare up. I have some friends who say to stop and some say to continue. My doctor is unable to provide any assistance in that area either.

I’m starting to feel isolated from the world and the support of friends and family is lacking. I fear my UC will limit what I can do with my daughter as she grows older. I’m sure my husband would like to have his wife back too.

There’s a chance I may end up working from home and get a new job. I’m concerned my flare up will inhibit me from doing so. I miss my health and would like to have my life back. Overall, I need some new advice and guidance.

written by Sarah

submitted in the colitis venting area




4 Responses to At My Wit’s End – Should I Be Nursing My Baby While in a Flare?

  1. Adam
    Adam January 29, 2015 at 12:13 am #

    Dear Sarah,

    After publishing your story, I took a stroll over to PubMed and there was a particular study that I am going to recommend to you (and anybody else who has the same question regarding breastfeeding and UC / IBD).

    The study is titled:

    “Pregnancy related issues in inflammatory bowel disease: Evidence base and patients’ perspective”

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3369996/

    it was written by: Christian P Selinger & Rupert WL Leong, Gastroenterology and Liver Services, Concord Hospital.

    This article goes into detail about MANY different aspects of pregnancy and IBD. There is even a list of medications that are advised against taking from the “American Academy of Pediatrics” while breastfeeding, and then on top of that, there is lots of additional data. Read it all, some of the studies are conflicted by different data within later studies. So again, read it all and that should help you gain some clarity into the matter. (A simple search on PubMed will turn up many other related stories, so I highly suggest you check that out if your doctors have no answers for you. This is where the doctors should be turning if they can’t answer your question, many do this simple info lookup technique, but obviously not all).

    Besides this, I would consider making diet modifications once you are through breastfeeding. I didn’t recall anywhere in your post where you made any attempts at diet changes and there are too many people (myself included for 5 plus years now) who have had great success with diet to treat UC to turn a blind eye to it even though doctors refute it daily. It just makes no sense to me anymore to push at a UC patient medication after medication without even giving diet changes a thought. I’ve listed quite a few ideas about diet on my diet page: http://www.ihaveuc.com/the-diet

    check that out too. I’ve written ebooks that go into much more detail if you’re interested as well.

    Either way, I wish you and your little one and the rest of your family the best. You will for sure get through this like so many other UC’ers have in the past.

    -Adam

  2. Sarah January 29, 2015 at 12:55 am #

    Thank you Adam! I will look into your links and suggestions.

  3. Jessica January 30, 2015 at 11:01 am #

    Hi Sarah
    I would encourage you to keep nursing. Try cutting out gluten, dairy, non fermented soy, and citrus. That may help with both you and baby. Drink protein shakes and eat lots of oatmeal to keep up your supply and try and implement flax seed meal and brewer’s yeast into your diet. Drink lots of water and keep trying! I nursed my son for 20 months and I have UC. It was the best accomplishment of my life. Hang in there, girl!

  4. Dana Robin Randolph January 30, 2015 at 11:10 am #

    Sarah,
    Hi, sorry you are not doing well. When you say delzicol/asacol did you try both of them? Or, were you on asacol and were changed to Delzicol? Reason I ask is bc my md changed me from asacol to Delzicol, and that caused a major flare up for 1 year. I realized that, that was the change, and switched back to Asacol HD and I am doing much better now. I also took asacol the entire pregnancy and breasted too, and it caused no problems. I recently started taking vsl 3 probiotics and have noticed it helps a lot in combination with meds. Hope this helps…

    Dana

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