...help!

Hi there, I have read a lot of the posts in the Chron's forum as I am trying to find help...

I have an appointment with a GI, but it is a month from now. I would love to get some input and advice in regards to figuring out if I am on the right track and how to make the most of my appointment.

I started having serious issues 2years ago. D, C, bloating (like distention to the max) terrible gas, and all types of additional strange bm's. I went to a GI and was told to stop chewing gum, drinking soda, and using a straw. She also said 95% of the time people come in and it is just IBS. I left that appointment barely holding myself together, I was so miserable and felt so disregarded. She would not send me for a colonoscopy until I had an MRI or ct scan first, due to the 'risks' of the more invasive oscopies. My insurance didn't cover either scans at the time, so I was left on my own. I saw a Dr who ran a Celiac panel which came back negative, but suggested gluten intolerance. Went off all gluten, and got a bit normal for 2 weeks, when it started up again. Cut out dairy, same scenario. Cut out soy. Came to the point where I was always miserable after eating. Saw a naturopath and tested for food intolerances. Ended up being intolerant (I'm dead serious here) (by their blood testing, which I still don't know if I agree with) to EVERYTHING except chicken and most fruits. So, I stopped eating anything but chicken, pears, and apples. A few weeks later, I gave up and started eating normal again, and was much better. Weird. Id had secondary infertility this whole time, but when my digestion got better I got pregnant naturally. My bm's at this point were usually small constipated balls, with occasional normal ones. I thought it was just pregnancy.

Fast forward, had our beautiful 3rd child, and bowel issues get worse again. This time more D, some stomach pain, and bm's that are little pieces and pencil thin. When they are more formed they are about thumb sized, or constipated balls. They all take forever to pass, and too much effort. Occasionally ( like once a month) I have had a very large bm. As if it was just getting bigger and bigger until it finally got enough force to break through.

I tried seeing a Dr, she said to stop dairy. I thought "here we go again". Other Drs said veggies will give anyone gas. Went to another naturopath. Let me say that though I am unsure of a few of their methods, at least I felt listened to and heard for once! I've cut out gluten and dairy. Got briefly better, then worse. I can eat about 4 foods and things settle down a bit when I stick to them religiously, and don't eat large quantities. But even that started to fail, and I would have bouts of D, with not going for a few days in-between.

I have had a week where my feet, ankles, knees, hands, fingers and back just ached and ached. Before that my feet and ankles ached all the time. I thought it was just something that hadn't gone away since pregnancy.

When all this started I was dieting, eating super healthy, lots of veggies and whole grains. But I realize now that veggies and fibre are NOT friendly to me! Good grief, I feel better when I stick to simple carbs.

As I look back on my early 20's, I've had bouts of D, especially around my cycle, but I thought that was just normal for me. I had times where I didn't make it to the restroom. Sigh.

I asked the dr's and naturopath about Chron's, and they said it isn't that because 1) no weight loss 2) no blood in stool, and 3) no major pain.

Well, I'm an odd duck. When I feel sick or nauseous, I eat. And eat. I eat a lot. So I don't lose weight unless I am on a diet. I do have lots of minor stomach pain, and many aches, but I never attributed them to my gut.

I asked about a possible blockage or narrowing, but was told that since I can on occasion pass a large bm, it isn't that.

I don't get what else besides inflammation would cause all these problems. I had my gallbladder out after my 1st pregnancy.

Can you guys let me know what you think? Thankfully a friend of mine is a nurse who works with the GI I am going to see in a month, and she told me I should come in and get scoped. So I hope this new Dr will hear me.

And if I do a scope, I'm worried because I'm breastfeeding...do I need specific nursing-friendly drugs?

Sigh. I'm overwhelmed. Thank you for your kindness in reading an responding.

welcome. have u been tested for halicobacteria? Also, I think a scope might be in order.
Hope you feel better soon.

JAB- The family practice Dr I saw did a panel of blood tests, not chrone's specific. But my B-12 vitamins were low, and something indicated infection in my body. I forget what it was, but it was actually the naturopath who went over my previous blood work and explained what each test was for. I was on the low end and borderline for a few things, but the dr didn't flag them, the naturopath did. One other thing I remember was low liver enzymes...whatever that indicates?

Roni- I have not been tested for that. What is it?

Funguy- I hope we can go that direction this time. I do have better insurance!

I meant to write helicobater pylori or H. Pylori, which can cause stomach ulcers, inflammation of the stomach (gastritis), intestinal inflammation and diarrhea.
Lots of ppl with CD get tested for it too, eventually.

Megpie I am currently in remission, but will tell you that I still have good and bad days. Most of it now is from eating the wrong thing or something that for whatever reason didn't agree with me. So yes, we can have good and bad days.  But when flaring, usually everyday sucks pretty much.  One day might not be as severe, but when flaring then yes majority of the days are bad until you find the right treatment.  Good Luck!

When I got sick about 3 years ago, I had similar issues with bad docs. My first GI did an endoscopy (and I did not have any issues with my upper GI- never have). He determined that it was just the IBS that I had been diagnosed with in HS. When my sypmtoms did not get better and he did not do anything for me, I tried an allergy specialist. All of my blood work showed inflammation in it as well as low iron levels, but nothing else. This was now about a year and a half ago that I had the allergy check. I lucked onto a great allergy specialist who actually read articles outside of his field and he was the one that directed me back to see a GI stating that from all of the blood tests that I had, he believed strongly that I had UC or Chron's. about a year ago, I went to a great GI. The first appointment, I told her about all of my symptoms and how long I had had them and she scheduled a scope right away! And there it was on the photos- Chron's. Since then, we haven't been able to find the right meds to put me into remission, so every day is a struggle. I hope that your scope will get you the answers you need. I sometimes wonder, if that first GI that I had gone to had done his job right, maybe it would not be as bad for me as it is now (the D, the C, the "accidents"- *sniff*- that's the worst). Some other symptoms that I have had besides those as my disease has progressively gotten worse are severe fatigue and of course depression. Each day is different for me, and all of our bodies are different with how they react to this disease. I will say some prayers that you get the answers you need so you can be a healthy mommy! I know how hard that can be as I have two young children myself. Good luck!

LeeAnne