Another newbie!

[Island Raised]

Hi everyone. I'm so glad to have found this discussion board!

I have been suffering from collagenous colitis for about 28 years. Although I was diagnosed in 2000, I believe the symptoms started when I was in high school (not yesterday! ). I was suffering from urgent diarrhea and gas. I also developed eczema/psoriasis of the scalp at that time. Oh yeah, and I have had hypothyroidism since age 7. I know - a rarity.

For many years, I did nothing. It was uncomfortable and embarassing at times, however it was manageable. I had mentioned the 'D' to my GP and was put on Motilium for a while, but my symptoms did not get any better or worse.

That all changed after I had my first child at age 27. In addition to my symptoms becoming worse (terrible bloating, explosive diarrhea, horrible smell, and cramps like labour pain), I also developed postpartum depression which evolved into clinical depression. Wow - that sounds so depressing. I never realized I was in such bad shape!

At that time, I changed GP's and she sent me to an internist regarding my symptoms. I finally was diagnosed. There really was something wrong with me! I had collagenous colitis, was somewhat lactose intolerant, and also had IBD.

I was put on Trental 400 mg twice a day, Dicetel 50 mg three times a day, and high fiber diet. After about six months the symptoms seemed to reducing in severity. However, I never could keep up with the high fiber diet. My Dr. could not understand how I could have undigested food in my stool. I didn't know either, but it was there!

So, as the symptoms were lessening and seemed to be stable, I stopped taking the medication. No problem.

Until, in the matter of 2 years I had changed jobs, moved, and learned my mom had stage 4 lung cancer. Well, the symptoms returned with a vengence.

I was put on Entocort for 2 months (starting at 9 mg, then 6, then finally 3 mg). It was the best 2 months I ever remember having. I was like a miracle. All of the symptoms vanished. But, within 2 weeks of being off of the Entocort, I was right back where I started. My Dr. told me that the Entocort would heal my bowel and then the Trental and Dicetel should be all that I needed to keep the symptoms at bay. Wrong.

I asked at that time if I should consider changing my diet (gluten free). I was told that diet had nothing to do with it. 'Okay' I said. So I tried the meds and high fiber diet for another 4 months. By this time I was in agony. I couldn't stand any pressure at all on my stomach. Not only was it bloated, but painful to the touch as well.
I was put back on Entocort again in addition to my other meds.

Again - a miracle. This time for 3 1/2 months. But I was told that I can't stay on it. Darn!

So here I am, still suffering with terrible bloating, explosive diarrhea, horrible smell, and cramps like labour pains only twice as bad.

What a negative Nelly! It sounds really depressing, but I am a very happy person! I love my life even if it is kind of crappy! (pun intended)

On the bright side, I have found this board and after reading some of the posts, I know I am finally in the right place! I am ready to take my health into my own hands and start taking a bigger part in my treatment decisions.

I am thinking about going back on the Entocort to heal my bowel and going Gluten free at the same time. What are your thoughts? Will that speed up the healing process versus just going GF?

What about Kefir and other probitics? Could I take them as well or just take it one step at a time?

I am so tired of being sick and tired that I want to do everything that I can to finally feel 'normal', what ever that might be like.

Can't wait to hear back from someone - anyone at all!

-Norma

[Bama12]

Norma,

I am also a newbie, Dec 2012
I have tried Kefir almost 2 cups per day for the last 2 weeks.
I have yet to try entocort, currently using Asacol.

From what I have read here, the kefir may not help right now
You gut is not healed enough to handle probiotics, plus it is
Dairy and many of us can not tolerate.

Gluten free seems like the best first step.
I have been GF for 2 weeks but have not seen any real improvement
Tomorrow starting dairy free and soy free.

Entocort seems to be the "miracle" drug for this group
I think it allows you to control symptoms so you have the strength
And courage to start the road to recovery.

Diet is key, but I will admit I have NO WILL POWER!!!!!
And trying to eat for my Heath is a new lifestyle .

Good luck, I'm sure Tex will have info for you as well.

[Sheila]

Welcome, Norma. Yes, you came to the right place. I have found more good information here than I ever got from any doctor. With this disease you have to be proactive and responsible for yourself. The people here are all dealing with pretty much the same thing you are dealing with. You will find compassion, advice, humor and really good information.

I was diagnosed with CC first and found out I also had celiac by having genetic testing done. There are tests you can take (Entero Lab and MRT testing) that will tell you what your primary food triggers are. You are probably reactive to gluten as are most of us on the Board. Living without gluten isn't as hard as you may think. I am on a maintenance dose of budesinide (generic entocort) 1 capsule every other day. Your doctor is obviously uninformed about MC and you need a new doc or you can try to educate him. Good luck with that.

Again, welcome Norma. Tex and others will give you the best advice you will ever get.

Sheila W

[tex]

Hi Norma,

Welcome to our internet family. I'm sorry that you've wasted so many years with doctors who obviously don't understand how to properly treat this disease, and I hope that as you take control of your own health, you will soon have your life back.

As Lynn and Sheila pointed out, changing your diet to eliminate the foods that are causing the inflammation is the key to healing. The Entocort will mask your symptoms as long as you are taking it, to help make life easier while the diet changes are healing your gut, but corticosteroids do not actually contribute to healing — they merely suppress inflammation. In fact, according to research, corticosteroids retard healing. If they actually promoted healing, relapses would not occur so soon after they are discontinued.

While it's possible that you might respond relatively quickly to the proper diet changes, please don't be discouraged if recovery takes longer than you expect. In many cases, for those of us who have accumulated intestinal damage for many years, it can take a longer than average period of time to recover, and while kids heal quickly, as our age increases, so does the time it takes for us to heal. The good news is that after we get our diet sorted out, we can achieve remission long before healing is completed. In fact, as is the case with celiac disease, many adults never completely heal, but that does not prevent us from attaining and maintaining remission from our symptoms, because we will have enough healing to allow normal bowel function (as long as we avoid the foods that cause inflammation in our particular case).

Most of us have to avoid gluten, dairy, and soy, and quite a few of us are also sensitive to eggs, but some members also have other food sensitivities. Avoiding gluten and dairy is a good place to start, and if that doesn't do the trick, then you may have to add soy and possibly other foods to the list. We fine-tune our diet as we go, whenever the need arises.

Again, welcome aboard and please feel free to ask anything. And good luck with your treatment program. Please keep us posted on your progress.

Tex

[jgivens]

Norma,
Welcome! In reading your post I felt like there were many similarities that you and I had! I started taking Armour Thyroid at the age of 10. I also was diagnosed w/ IBS in adolescence. It wasn't until I was diagnosed with CC in December that some pieces fell into place (& they still are) regarding my past medical history and why I've had such "odd" symptoms (strange rashes, odd reactions to foods like tree nuts, diarrhea whenever stressed) for years that nobody could understand or correct.
Your post sounds like many of us who've had this disease for awhile (or the majority of our lives) and you've gotten some wonderful advice from many members. If I can give you nothing else, I'd like to give you hope, because things really can and do get better. The whole lifestyle change of learning what we can safely eat is without a doubt, soul-zapping, but once you've figured it out, you will be on your way!
My D stopped after 15 days of Pepto Bismol, 2 tabs 4 x a day. Many gastroenterologists have their patients take Pepto for 8 weeks. It can be toxic so you need to be cautious about side effects. During the time I was on it, I cut out dairy from my diet. I had already gotten rid of gluten the year before.
The other thing that has been helpful in my recovery is doing things that will help me handle my stressors differently. I quit a difficult job. I enrolled in a Mindfulness Meditation class and I get regular acupuncture treatments. I also became a member of this forum and it has been invaluable for ideas about how to heal. I hope you find it as helpful to you as it has been to us.
Finally one last thing: You live in a place I have vowed to visit one day. I was an avid Anne of Green Gables reader as a child and my own daughter loved her as well. :-)

[Zizzle]

Welcome Norma!
I'm one of the lucky ones who experienced vast improvement just days after going gluten free, dairy free and soy free. I did Enterolab.com testing before I started the diet. You might want to start the diet before going back to Entocort, just so you can experience how the diet change is affecting you. It might not curb the D right away, but you may experience less bloating, less stomach gurgles, less cramping, etc, and know that you are doing the right thing.

[ladyathome]

Don't worry about being a negative Nelly here! We have all felt the way you describe yourself at some point! This has been a long road for you, and I'm so happy you found this group! I'm relatively new here as well (about 8 weeks). When I found this group, I was desperate! I tried to read everything I could and was like a sponge soaking up their experiences and wise encouraging words! I also think just knowing there were others who understood and cared meant so much to me!

My doctor did advise me that removing gluten and sugar could help, but just removing gluten had not been enough for me (plus, I'm not sure I fully understood what removing gluten meant...I had to read labels and never cheat)...Once I found this site, I just immediately went for the full deal and cut out dairy, beef, eggs, soy, rice/potatoes/corn, and sugar. I also did the pepto-bismol protocol for about 3 weeks, and started becoming constipated and cut back slowly and stopped taking it. I was able to begin feel better rather quickly! I'm still not sure which of the foods I cut are my offenders, but it was worth removing all of them to feel well. I have had moments where I cheated and learned really quickly that it's not worth it!

I've been doing the Paleo diet, which consists of mainly protein and veggies (well cooked). Eating out is challenging, but when I feel well, it's all worth it! I have learned to shop the perimeter of the grocery store ... the outer isles or perimeter of the grocery store is where you will find food that is fresh and healthy.

Stress really is a major factor with CC. Doing what you can to remove stress and taking time for yourself is really important! I started exercising and making little changes in life that I know have helped with my depression. I also do acupuncture.
You will also read about Entrolab on here, which I just did last week, waiting for my results.

I know that with finding this site, you are on the right road to feeling better soon! Wishing you the best!

[Island Raised]

Thank you all for such a warm welcome! I am feeling at home already.

I think I may do as you suggest and change my diet before going back on the Entocort. It would be interesting to see how my digestive system will react.
I'm sure it will be a challenge to go gluten-free, but I am ready. So ready.

I would think cutting out sugar would be more difficult than giving up gluten?

~Norma

[jgivens]

You will be surprised at how easy it is to cut any one of the things you have to cut out, as you begin to feel better. Every once in awhile I have a craving for something that I shouldn't have, but those times are fewer and further between. You have already been through a lot; this will be much easier than some of the other things you have had to endure.
We are all in this together. Whenever, you feel like you can't do it any more, just send out a post and you will get more support than you ever imagined.