Hello - New here?

brboatwright · Post by **brboatwright** » Fri Apr 18, 2008 2:11 pm

Hello - My name is Bethany. I live in Dayton Ohio and this is my story. I had an edometrial ablation in June 2007. Before I had this surgery, I was a healthy active 31 year old women (just had really heavy menses). Soon after the surgery I experienced severe pain in the back of my leg behind my knee (felt like a charlie hoarse that would not go away). My family physician put me on multiple pain meds and told me I have sciatica. Probably pulled something picking up my three year old. By the next month I started having menstrual cycles again but they were light, but I also starting having severe pain after eating. The pain was bad enough that I would I faint. Well being the high spirited that I "used to be" ....I would tell my doctor about this and I really did not think he believe me, but he sent me to get a CT scan. The day of my Ct Scan I was walking back with nurse and got that "I am in so much pain that I am going to faint feeling". She looked at me and asked it I was ok..."UH NO". She said are you going to throw up..."UH NO". Then next thing I know, I was waking on a stretcher. They rushed me into my ct scan and then rushed me to the hospital with appendicitis. I get to the hospital and they do a GI Series and say ---nope we "THINK" you have crohns. It is in the Ileum. Terminal Ileum. Spent 7 days in the hospital. Predisone and sent home. Then 1 month later - stomach distended, can not eat, drink, pas gas, have bowel movements and down 35lbs since July. Rushed to emergency, given IV Fluids, steroids, antibiotics,Ct scan w/barium, GI Series, colonoscopy- abdominal abscess found. Drain was inserted by radiology and abscess was drained. I was in the hospital for 8 days. This they said came from crohns. I was sent home on steroids, antibiotics, and asacol. A month later - now November. I was back in emergency for abdominal pain. CT Scan and GI Series revealed everything looked great except the same Inflammation in terminal Ileum. I was sent home after 5 days. This time I felt really good and was getting my energy back but the surgeon that was working with my GI team kept asking about a cyst on my right ovary. She pushed me to see my GYNO. So I made and appointment to see my gyno that performed my ablation and told him my story. He is with a different hospital than my family phys and my GI doctors. He suggested a level 2 ultrasound. Called me after business hours on my cell phone and said "Bethany-you and your husband need to come in to see me tomorrow morning". I had surgery Dec 20. Total Abdominal Hysterectomy, Ovaries removed, tubes removed, appendix removed. He told me and my husband that I was the worst case he had seen and he has been a highly recommend doctor for 32 years. My appendix was attached to the back of my Uterus and was hard and strange color. I had several adhesions that was connecting all of my female organs together. WOW. He sat down next to me and said he was so sorry that I was suffering so long, and that he was sure this was causing all of the inflammation. Three months after the surgery I was still not recovering well and so he sent me to his GI doctor that he works with for a second opinion on the crohns. She got the results of my CT Scan from the week before that my gyno suggested so that i would be prepared for the GI visit along with he colonoscopy report from October. I still have severe inflammation in my ileum, but bowel, gall bladder, kidneys all look exceptional is what it read. My colonoscopy showed no poylps or cancer but inflammation in my ileum due to terminal ileitis possibly due to crohns. This is my diagnosis and my story -----it has been 3 weeks since my visit with my GI doctor that put me on Entocort. I had some improvement the first week but then a stand still. My symptoms are severe abdominal pain in the right lower side in the early mornings lasting until mid-day, no push sensation for bowel movements (but the nurse says this is from the liquid/soft food diet that I have been on for 4 weeks). I am not distended and I pass gas "OK"....not easily but OK. I was started on prednisone 20MG one time a day just this morning.

I know this was long- but I am frustrated and need suggestions from the experts which are the people that have been and are suffering from this disease.

This is my daily menu (I eat the same thing every day) ---- Breakfast - Yoplait whipped yogurt; Lunch- Tuna in water with light mayo and crackers(not wheat); Dinner - Broiled fish (catfish, tuna, or salmon) or Ramen noodles with only a small amount of the seasoning. I drink apple juice and gatorade and lots of water this is what I limit my beverages too. I take a premarin hormone before I go to bed and maybe two tylenol extra strength a day.

Suggestions please.

Becky · Post by **Becky** » Fri Apr 18, 2008 3:19 pm

Hi Bethany,
You poor thing! What an ordeal you have been through.
I'm relatively new to this forum but assure you that other here will have some great advice for you.
The dairy in the yogurt and wheat in the ramen noodle pop out to me as suspicious. A lot of people here are on a dairy free and glutten free diet. Maybe if you switched from yogurt to glutten free toast and from ramen to mashed potatoes, you might feel better. Enterolab testing is recommended here to check for those sensitivities. I still need to to it myself. I was on Entocort for 6 months, weaned off but I'm having some symptoms again. A diet that you will read about here is called the Paleo Diet. I got the book at Barnes and Noble.
I've learned so much from this forum over the last 6 months. Mainly, that everyone is different, what works for one may or may not work for the other. AND that it is a roller coaster ride. I'm sorry you've had way more than your share of dangerous rides!
So, welcome. I know you will get help here.

JJ · Post by JJ » Fri Apr 18, 2008 5:37 pm

Hi Bethany! Welcome to the group! You have had quite a time of it....I have CC and take Entocort, and have found that stress is my enemy! As Becky mentioned, others here are GF and DF, but I haven't tried that yet.
I'm sure others will jump in soon to welcome you! Take Care, JJ

annie oakley · Post by **annie oakley** » Fri Apr 18, 2008 5:46 pm

Hi there! Wow you have had a time of it haven't you? I hope you get better soon. I drink green tea after every meal and it settles my stomach alot. When I feel a flare comin on I eat banana's yogurt and apple sauce. Welcome to our family
Love Oma

Polly · Post by **Polly** » Fri Apr 18, 2008 7:19 pm

Hi Bethany and

What a rough time you have had!

Have you heard about the SCD (specific carbohydrate diet)? It has been particularly helpful for folks with Crohn's and ulcerative colitis. The best book on it is called "Breaking the Viscious Cycle" by Elaine Gottshall.

Hang in there...........we all know how miserable it is until we can get our IBD (inflammatory bowel disease) under control.

Hugs,

Polly

Post by **tex** » Fri Apr 18, 2008 9:53 pm

Hi Bethany,

Wow! You've had a lot of issues gang up on you in a short amount of time. As Becky mentioned, many of us find that if we eliminate all gluten and dairy products from our diets, we are more likely to be able to achieve remission.

The SCD, that Polly recommended, is much more beneficial for Crohn's and UC patients, than just removing gluten and dairy from the diet. If you are interested in trying the SCD, this site provides some information on it, and includes lists of foods to eat, and foods to avoid, and these lists can serve as guidelines until you are able to obtain a copy of "Breaking the Vicious Cycle".

http://www.healingcrow.com/dietsmain/scd/scd.html

Sometimes, even medications as potent as Prednisone are not adequate for achieving remission, and a diet such as the SCD can make the difference. In fact, many of us have found that diet alone is sufficient for maintaining remission, so long as we diligently follow a diet that avoids any of the foods to which we are intolerant.

Please feel free to ask anything.

Tex

mini · Post by **mini** » Sat Apr 19, 2008 5:40 am

Hi Bethany and welcome

Sorry to hear you have been having such a bad time, hope things get better for you soon.

starfire · Post by **starfire** » Sat Apr 19, 2008 6:44 am

Welcome to the site and I surely hope you can find something here that helps. You have really been through the wringer.

Shirley

crranch · Post by **crranch** » Sat Apr 19, 2008 8:54 am

Welcome to the site, I'm so sorry that you have had such a rough time...hopefully a change in diet might help.

Carrie

Mars · Post by **Mars** » Sat Apr 19, 2008 9:50 am

Hi Bethany! Welcome to our on-line family. I think everyone seems to have given you good advice. What a time you have had. Many of us here have experienced multiple problems, one right after the other. I sure hope the doctors you are seeing are up-to-date on the newer treatments of your problems.

Hang in there and read, read, read this forum. There are many helpful ideas and experiences to share. Ask any question you have and we will try our best to help or at least share our expereinces!

Again - Welcome!

Mars

barbaranoela · Post by **barbaranoela** » Sat Apr 19, 2008 3:05 pm

Greetings Bethany------I was *aching* for U as I read your post---

As many have said-----keep checking back---hang in---dont give up--and read all the info here---there is a way to that *wellness road*

:bigbighug:

Barbara--

MaggieRedwings · Post by **MaggieRedwings** » Mon Apr 21, 2008 5:52 am

Welcome Becky,

You sure have had a hard road and I do hope that things will settle out for you very soon. There is great advise here and I do agree with Polly & Tex on the SCD diet being a good move. I have also found that the tuna packed in water at times does have some veg. broth and it is not toally GF. For some of us GF is a real lifesaver but it does not apply in all cases and with Chrons the SCD diet may work so much better. Again welcome and stick around.

Maggie