New here. Just wanted to say hi

OttawaGrl · Post by **OttawaGrl** » Thu Jan 31, 2013 5:03 pm

Hi! My name is Tracy. I am 32 and from Ottawa, Canada. It was sooooo nice to find this board! It sounds bad, I apologize, but it was nice to see that I was not alone in the world!
I have always suffered from bowel issues growing up. I was always told it was in my head or that I had a dairy sensitivity. I always seemed to be constipated with no relief. Then two years ago, in october, I went to the hospital in extreme pain. They thought I had appendicitis but after many hours of imaging they could not find my appendix. Long story short, they did surgery and found my appendix wrapped around my bowel. They removed it.
Things seemed to be ok for the next bit. Not good, but manageable. I was always afraid of going out overnight places or even to restaurants or friends houses to hangout. I could never predict what "surprise" my body was going to have for me. My new family doctor was great tho and believed me when I said something was still wrong and help me with trying to find out if I had food intolerances, putting me on gluten free diets, sending me for CT scans and so forth.
Then this past October, it started getting really bad. I went to the hospital cause I lost so much weight (was down to 80lbs) and could not stay off the toilet. They did a lot of test. I started to feel like I lived in the hospital. They said I had to wait until January for the results. My life until then was absolute hell.
When I finally met my specialist in January for the results I was told I had LC, right sided diverticulitis and a intussusception. The doctor actually said my body hated me. YAY ME!
So they started me on entocort for the LC for the next three months. On April 15th, they will see if it is under control, if so, then they will deal with the intussusception. Which probably will be surgery to remove a piece of my intestine. (I am keeping my fingers crossed it doesn't come to that)
I am happy I finally have some answers. I am hoping the entocort works for me. I have been on it two weeks and have not noticed much difference yet. I am still in a lot of a pain. But then again I don't know if it is from the LC or one of the other issues. I was told to not take pain meds so I don't know what to do about the pain.
Anyways that's my story.
I was wondering if anyone had suggestions on how to deal with the pain and what foods to avoid? I would appreciated all suggestions you are willing to share

Leah · Post by **Leah** » Thu Jan 31, 2013 7:10 pm

Welcome Tracy. Wow, you have been through a lot. You should read as much as you can from this forum. It's a wealth of information. Sorry to hear that the Entocort isn't work ing yet for you, but it also sounds like you have a lot of inflammation and it may take a while.

Okay, now for the nutritional info. .... What you eat makes a HUGE difference in healing ( even though doctors will tell you otherwise). There are four main inflammatory foods that you may be intolerant to. They are gluten, dairy, soy, and egg. You may want to take out at least gluten and dairy for now. If you want to know for sure, there is a lab called Enterolab that you can send a stool sample to and the results come back in about a month. Check out their web site.

The other thing is that when we are at our worst or in a flare, it's smart to stay away from fiber foods. It's just too much for our gut to handle right now. That means raw fruits and veggies ( salad), and beans and legumes. Acid foods may be out for now also. Like citrus, tomato products, coffee, black tea.

I know this is alot to take in right now, but the most healing diet for you right now is meats, well cooked veggies, rice and it's products, applesauce, maybe some Chex cereal with almond milk...etc.

You might want to buy Tex's book ( Microscopic colitis) from Amazon . it's very informative.
Good luck, ask as many questions as you need, and keep us posted
Leah

Post by **tex** » Thu Jan 31, 2013 8:56 pm

Hi Tracy,

Welcome to the board. I am amazed that your doctors are so inconsiderate that they made you wait from October until January to receive your results. That's absolutely ridiculous.

Your pain may be associated with diverticulitis. Diverticulitis at your age is rare. Of course, an intussusception is rare at any age. MC is not rare, though your doctors may think it is. Their suggestion about not using painkillers applies to NSAIDs, because NSAIDs can cause LC. You should be able to safely take tramadol for pain, however, or any form of acetaminophen.

So are you avoiding gluten, or any other foods, at the moment?

Again, welcome aboard, and please feel free to ask anything.

Tex

OttawaGrl · Post by **OttawaGrl** » Thu Jan 31, 2013 10:03 pm

Thank you both for the information. I have tried a gluten free diet for about six months and I didn't find it helped any. I do however stay away from dairy, eggs and all veggies (thats really hard). Actually the only thing I do eat on a regular basis is chicken, red meat, rice and potatoes. Last time I ate beans I thought I was going to die.. I will not be doing that again! The doctors always seem to be pushing fiber on me but I never have seemed to listen to that advice. I will admit I get frustrated sometimes and give up and eat what I want. I know I shouldn't but that was before I got the results two weeks ago.

The doctors did make me wait till January for my results. But between October and mid December I was doing constant test. I never heard any result though until January.

I honestly can't tell what the pain is from. I am constantly in pain. Just depends on the severity of it at any one time. Most of the time the pain is on my left hand side which makes me think it is the intussusception. The diverticulitis is on the right side of my body I was told and is suppose to feel like appendicitis. I do not know what type of pain is contributed to the LC. All I know, is most days I can't even get out of bed without assistance. I can't bend to pick things up most of the time. Reaching for something on a shelf ends with me on the floor screaming in pain. A few times I have been taken to the hospital for the pain and they have given me morphine. But will that cause more problems for the LC? I will definitely try the acetaminophen and she how it helps.

Thank you again for taking the time and responding to my post. I will definitely try to get my hands on that book! I want to learn as much as I can so I can get a handle on my life again.

Tracy

Leah · Post by **Leah** » Thu Jan 31, 2013 10:18 pm

You poor thing. That pain sounds absolutely awful. I can't believe that they just don't know what is causing it. It sounds like they need to take care of that intussusception ( what is that?) even if your MC symptoms are still present.

When it comes to getting your MC symptoms under control.... Do you take any other drugs? There are a number of drugs that can get in the way of remission and they can even be the cause of getting Bowel diseases in the first place. Some people have seen great results by stopping the offending drug.

If it turns out that Budesonide doesn't help, you may want to try the Pepto Bismul treatment. I haven't used it myself, but many here have with great success. I believe it starts with 8 tablets a day and you slowly wean down within a three month period of time. It is over the counter, so that makes it nice.

Good luck. Hope you get some relief soon
Leah

Post by **tex** » Thu Jan 31, 2013 11:15 pm

Leah,

An intussusception is a condition where part of the intestine telescopes into another section.

Tex

tlras · Post by **tlras** » Fri Feb 01, 2013 9:07 am

Hi Tracy,

Sorry you are having so much pain! I don't have anything to add really except that I had a friend who had diverticulitis and he had lots of pain with it. He finally had surgery done and he's 100% better. I've never experienced much pain from my LC other than bloating pain from Gluten (I'm Celiac). Once I removed gluten, the pain went away. I did the Pepto treatment but only because I had the D as it can cause constipation. Entocort can cause constipation as well and that's usually a marker to wean down slightly.

Best of luck to you and I do hope you find relief soon!

Keep us updated.

Terri

jgivens · Post by **jgivens** » Fri Feb 01, 2013 10:08 am

Hi Tracy,
I am so sorry to hear about your difficulties. Sounds pretty unbearable. If I were the doctor, I would have a hard time telling whether your pain was from the diverticulitis or the intussusception and perhaps the Dr. is waiting to see if the intussusception will resolve without surgery? Seems like if just ONE of your conditions would heal, the rest might be bearable.

Hang in and know that we all can sympathize with the "fogginess" of not knowing exactly what causes what and what we have to avoid eating.

Mrs Turtle · Post by **Mrs Turtle** » Fri Feb 01, 2013 4:48 pm

Hi Tracy,
Your experience with your appendix sounds like mine from my childhood. The surgeon found mine up near my liver.

Three years ago, I had a volvulus, which is a twisted colon. Mine was twisted shut. It was incredibly painful, coming in waves. In the ER, I watched my blood pressure spike every time I had a pain wave from peristalsis. I would imagine that intussusception could feel much the same. I know that the tissue of my colon was in danger of dying due to my volvulus, so it needed to be fixed right away. Luckily, the doctor got it untwisted with a scope. I wonder if your intussusception could be endangering your intestinal tissue. The surgeon on standby for my volvulus recommended I have a colon resection to help prevent a reoccurrence because my colon was so extremely long. I went ahead and did it within a month.

I wonder if the handling of my colon in that surgery and my childhood appendectomy could have contributed to my collagenous colitis today, but I would still have the surgery today in order to prevent another volvulus. You have a lot to consider when presented with the option of colon surgery. I wish you luck in dealing with all your many problems.

Marion

mzh · Post by **mzh** » Sun Feb 03, 2013 7:14 pm

Oh, Tracy, that is so awful. I hope the pain ends soon for you. The tramadol and the acetaminophen sounds like the next things to try.

Marion, I had a cecal volvulus with a carcinoid on my appendix in 2008. I never heard of anyone else who had a volvulus so I had to post.

I had MC since 2002 and it was actually under control when the volvulus happened. Without the surgery, I'd be dead today, so I'm glad the surgery was done. They couldn't get mine untwisted and it did get gangrenous so I lost some of my colon. It was a close call.

OttawaGrl · Post by **OttawaGrl** » Mon Feb 04, 2013 10:23 am

Thank you all for you comments :) I will definitely try tramadol and acetaminophen. I have had two good days in a row so I am hoping the entocort is finally working!?!?
I am sorry to hear about the cecal volvulus for both of you. I am happy for you that they found it quickly and were able to resolve it. I am hoping they can resolve my intussusception soon!

Thanks again for all the help! :)

Zizzle · Post by **Zizzle** » Mon Feb 04, 2013 3:57 pm

Welcome Tracy!
So sorry you are dealing with so much pain. I'm one of the lucky ones here who experiences almost no pain from MC (LC).

I wonder if smoothies might help get some veggies into you without aggravating the system too much. I make smoothies with kale or other greens, coconut or almond milk, some fruit (blueberries, pineapple, apples, cranberries, oranges, avocado or bananas, etc), flax meal (you might omit that one), and occasionally some rice protein. I find my system has an easier time digesting the liquified fiber, and it helps bulk up the stool somewhat.

Mrs Turtle · Post by **Mrs Turtle** » Mon Feb 04, 2013 4:47 pm

MHz,

I was told by the GI doc that untwisted my volvulus that it was very unusual for somebody as young as I was. I certainly didn't think I was young at the age of 60. Apparently, this is a condition that happens more to elderly people in nursing homes. I can't imagine that happening to somebody with something like dementia, trying to get someone to understand that a serious problem is happening.

I'm sorry you had such serious tissue damage from your volvulus. Your surgery could not have been easy, since your colon was not cleansed before surgery. After mine was resolved, I got to thinking that in the pioneer days, I would have died from that. Thank goodness for medical technology and knowledge that helped us so much.

Ottawa Girl, I'm glad to hear you have had some good days. Hopefully, you will have more ahead.

JeanIrene, I, like you, have learned so much from this site. Fortunately for me, my doctor suggested budesonide right away to reduce the inflammation. I think that it, along with dietary changes, are helping me get better. Even though my test results from Enterolab did not reflect gluten or dairy sensitivities, I decided to eliminate them from my diet anyway. Last week, I met with an enlightened nutritionist for two hours. She understood my goals and helped me figure out how to eat. I also would like to lose a little weight, so she included that in her planning for me.

Marion

mzh · Post by **mzh** » Mon Feb 04, 2013 4:48 pm

You're on the right track about being leery of adding fiber. That's the first thing GI docs recommend and it's wrong!

Everything else you're doing is right though. Stick with us.

mzh · Post by **mzh** » Mon Feb 04, 2013 6:21 pm

Mrs Turtle wrote:MHz,

I was told by the GI doc that untwisted my volvulus that it was very unusual for somebody as young as I was. I certainly didn't think I was young at the age of 60. Apparently, this is a condition that happens more to elderly people in nursing homes. I can't imagine that happening to somebody with something like dementia, trying to get someone to understand that a serious problem is happening.

I'm sorry you had such serious tissue damage from your volvulus. Your surgery could not have been easy, since your colon was not cleansed before surgery. After mine was resolved, I got to thinking that in the pioneer days, I would have died from that. Thank goodness for medical technology and knowledge that helped us so much.

Marion

Hi Marion,

Interesting. I was 64 when it happened. One of my docs told me - or maybe I read it somewhere - that a cecal volvulus is actually a birth defect. That part of the intestine near where the appendix is is supposed to be attached to the abdominal wall. If it is, it won't twist. Mine sure wasn't attached. No, it wasn't easy. It took me a good 4 months before I felt pretty good and the area was tender for years. I got a nasty infection the the incision too. The only good thing about it is I lost 15+ pounds. Got it back unfortunately. Yep, we both would have died without surgery. Scary. I never heard that it was something that older people get. Learn something new every day. :)