Newbie

motheroftwins · Post by **motheroftwins** » Fri Sep 21, 2012 1:39 pm

Hi, my name is Suzie, and I am diagnosed with Collagenous Colitis on September 18. I have so much to learn, and I am hoping for suggestions. Currently, I am on Prednisone... Then for maintenance Salaflazine. I also have a fissure, so I have been in pain, and I am taking Proctofoam HC for that.

tlras · Post by **tlras** » Fri Sep 21, 2012 3:28 pm

Welcome!! I'm a newbie as well as was diagnosed with Lymphocytic colitis in July. You will learn a lot from this forum.

I'm currently doing the Pepto treatment which is working well for me. Others have done short term Prednisone, but most seem to be doing well on Entocort. It all has to do with the diet. Have you gone gluten-free yet? I think a lot of us have found some relief going GF, dairy free, soy free and egg free. I've only gone GF/DF for the most part and have seen big improvements. I don't know what your symptoms are but if you are having watery D, it's best to cut out the raw fruits and veggies....I overcook everything....fiber is not our friend right now. I have also given up Legumes for the time being but hopefully can reintroduce it later. From what I've learned so far it's all about tweaking your diet. It's hard and you have to have patience, but if I can do it anybody can. I'm was still having some D so have cut out the nightshade veggies...(potatoes, peppers, tomatoes, eggplant), just to see how I do.

Many people will give you very good advice, especially Tex. He's written a book about it and I can't wait to buy it. He's very knowledgeable about this nasty disease.

Wishing you the best of luck and welcome to our family!

Terri

cjbndtsn · Post by **cjbndtsn** » Fri Sep 21, 2012 3:54 pm

Welcome aboard!!! I'm fairly new to this too but have learned ssssoooo much from this forum and taking their advice. I as well was dx CC in July. My GI doc put me on fiber tabs, pepto and immodium for 8 weeks. No luck with that!!This forum said NOWAY to fiber and go GF and once I started GF diet.........huge relief. I did cut out raw fruits for now but have continued with fresh tomotoes and cooked veggies with no problems. Have now been on Entocort for 3 weeks and my life is now back to normal between GF and Entocort. Follow their advice and the GF diet is NOT hard to follow. You panic at first but you will find that it is probably the easiest of all the GF, DF, EF, SF diets to follow. Feel free to ask them anything and lose all your modesty on this site because you will find that we all discuss our Poo here. LOL It took me a bit but thats why I haven't attached my pic yet......LOL just kidding. It did take me some time to warm up to that and everyone here has a great sense of humor about the topic so just relax and feel free to ask away. Happy reading because you will find yourself engrossed in this forum for hours reading all the history.

motheroftwins · Post by **motheroftwins** » Fri Sep 21, 2012 4:47 pm

tlras wrote:Welcome!! I'm a newbie as well as was diagnosed with Lymphocytic colitis in July. You will learn a lot from this forum.

I'm currently doing the Pepto treatment which is working well for me. Others have done short term Prednisone, but most seem to be doing well on Entocort. It all has to do with the diet. Have you gone gluten-free yet? I think a lot of us have found some relief going GF, dairy free, soy free and egg free. I've only gone GF/DF for the most part and have seen big improvements. I don't know what your symptoms are but if you are having watery D, it's best to cut out the raw fruits and veggies....I overcook everything....fiber is not our friend right now. I have also given up Legumes for the time being but hopefully can reintroduce it later. From what I've learned so far it's all about tweaking your diet. It's hard and you have to have patience, but if I can do it anybody can. I'm was still having some D so have cut out the nightshade veggies...(potatoes, peppers, tomatoes, eggplant), just to see how I do.

Many people will give you very good advice, especially Tex. He's written a book about it and I can't wait to buy it. He's very knowledgeable about this nasty disease.

Wishing you the best of luck and welcome to our family!

Terri

Thank you Terri, for the sweet welcome!

My GI doctor wanted to put me on Entocort but it was $1200. bucks and I couldn't afford it.

So, we both decided prednisone was the best way to go. I am on a clear diet this week. Next week I will start introducing new foods to my diet and keep a food diary. I was already gluten free before I was diagnosed.:)

motheroftwins · Post by **motheroftwins** » Fri Sep 21, 2012 4:54 pm

cjbndtsn wrote:Welcome aboard!!! I'm fairly new to this too but have learned ssssoooo much from this forum and taking their advice. I as well was dx CC in July. My GI doc put me on fiber tabs, pepto and immodium for 8 weeks. No luck with that!!This forum said NOWAY to fiber and go GF and once I started GF diet.........huge relief. I did cut out raw fruits for now but have continued with fresh tomotoes and cooked veggies with no problems. Have now been on Entocort for 3 weeks and my life is now back to normal between GF and Entocort. Follow their advice and the GF diet is NOT hard to follow. You panic at first but you will find that it is probably the easiest of all the GF, DF, EF, SF diets to follow. Feel free to ask them anything and lose all your modesty on this site because you will find that we all discuss our Poo here. LOL It took me a bit but thats why I haven't attached my pic yet......LOL just kidding. It did take me some time to warm up to that and everyone here has a great sense of humor about the topic so just relax and feel free to ask away. Happy reading because you will find yourself engrossed in this forum for hours reading all the history.

Thank you for the warm welcome, Cathy. Yes, it does seem modesty kind of runs away with this stuff we have. I was already Gluten Free before diagnosed. At the moment I am on a clear diet for a week. I am will be keeping track of the food I eat as I slowly introduce them.

Leah · Post by **Leah** » Fri Sep 21, 2012 5:45 pm

welcome to our family! It's too bad you couldn't afford Entocort, but prednisone should do the trick... at least for a while. if you figure out the diet thing, you will be well on your way to healing.
It's great that you are not eating much now. This is a good time to leave out all the major inflammatory foods ( gluten, dairy, soy, and eggs). Meat seems to be our friend. It's good to start with meat and cooked veggies. We all tolerate different foods and people here have already given you great advice about Raw fruits and veggies and nightshades. I'm proud of some of the "newbies" :) I did well with white rice, apple sauce, and sweet potatoes also when I first was trying to get a grip on this thing. Take it slow and only add or "test" one thing in at a time. It's the best way to figure out what is truly giving you problems.
Read a lot on this forum and if you can, buy Tex's book. It's full of great information.

Good luck and keep us posted as to your progress
Leah

Post by **tex** » Fri Sep 21, 2012 6:04 pm

Hi Suzie,

Welcome to our internet family. Entocort (budesonide) is a much safer drug than Prednisone. FYI you can order generic budesonide from a pharmacy in India (no prescription needed) for approximately $121.50 plus shipping, for a 3-month supply. Many members here get their supply there, because it works just as well as the domestic procuct, only it's affordable.

https://www.alldaychemist.com/1447-budez-cr-3mg.html

Don't order more than a 3-month supply at one time, or Customs will confiscate the shipment (they don't allow dealers to order from overseas without an import license).

Also, sulfasalazine is a very inexpensive drug (because it's a very old drug), but many people these days react to sulfa drugs, so it's hardly ever prescribed to treat IBDs anymore. IOW, if your symptoms become worse when you begin taking it, you might not be able to tolerate it.

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

Tex (Wayne)

maestraz · Post by **maestraz** » Sat Sep 22, 2012 6:17 am

Hi Suzie,
I got (generic Entocort) right at my local pharmacy.

Post by **tex** » Sat Sep 22, 2012 9:48 am

Suze,

There are two different brands of generic budesonide available in this country, but they cost almost as much as Entocort EC. They cost roughly 30 times as much as the Indian generic, and the manufacturer who makes it (Sun Pharma, in India), manufactures most of the generic drugs for the big name drug companies in this country. Big Pharma makes a killing reselling it here.

Tex

motheroftwins · Post by **motheroftwins** » Tue Oct 02, 2012 5:52 pm

Thank you all for the amazing welcome! I am so excited about the book on MC... I hope I can read it soon. At the moment I can't afford the book it is kinda sad. Thank you for all the information on Entocort. Its seems the Prednisone is working and I haven't had many side effects, only insomnia. So, I feel pretty lucky in that way. I definitely will be talking to you all about my treatment as I move forward. I am still tapering from Prednisone and tomorrow I'll be on 20mg for the next two weeks. Thanks again!!

patc73 · Post by **patc73** » Wed Oct 03, 2012 8:32 am

Hi, Suzie! Like Tex said, I am one that was put on sulfasalazine and reacted to it. They had me ease into taking four tablets a day, but quickly my blood tests showed a low white cell count, so they took me down to three tabs daily. Then one morning about a month ago, I took my two AM tablets, and my mouth went numb, and my tongue swelled up to twice the normal size! I called the Dr., and he advised me to take Claritin before taking the sulfasalazine, to see if it would help. I backed myself down to one tab in the morning and one at bedtime, and even went to an allergist to see if I have a sulfa allergy, but the testing was negative. My mouth and tongue were still numb, so I took myself off the drug last weekend, and now my mouth is fine! Doctors don't seem to listen to the patient at all, but we know what is helping and what isn't.

Welcome to the forum. You'll learn, like I have, that usually the great information here beats anything you'll hear from the medical profession.

Pat

motheroftwins · Post by **motheroftwins** » Wed Oct 03, 2012 8:53 am

Hi Pat, thank you for letting me know your experience with Sulfasalazine. Now, from what you said I am a bit leery taking the medication. I am learning so much here. Pat how are you taking care of yourself? I realize a diet is the main course for our IBD treatment no matter which one we have. :)

So far, my course of treatment has been Prednisone (Tapering), Diet and exercise (Yoga and Ballet).

patc73 · Post by **patc73** » Wed Oct 03, 2012 10:45 am

Suzie, about a year ago after being diagnosed with CC (collagenous colitis), I went to a local gastroenterologist, who didn't listen well, so I didn't go back to him. I have been referred to another GI doc, and have an appointment next week, so we'll see what he says...I'm not currently taking anything for CC other than Questran (which helps bind bile and reduce D). I have no prescription insurance, so entocort is out of my ballpark. I've been pretty lucky lately just controlling the D with diet. It helps that I've just been diagnosed with three definite food allergies, soy, crab, and shrimp, so I know to avoid those for sure, along with gluten, dairy (except butter, which I tolerate), high fiber and high histamine foods. I'm always fine-tuning the diet, depending on my reaction to any particular food. It helps to do an elimination diet at first, basically starting with what you know is safe, then adding foods back in one at a time. I do yoga and I meditate, too, which also helps. You'll get better, you'll see!

Pat

motheroftwins · Post by **motheroftwins** » Wed Oct 03, 2012 10:57 am

Thanks Pat