New Member Looking for some help/ hope

[Jane]

Hello from BC, Canada.
I've had CC for probably about 15 years. It was diagnosed 5 years ago, and mostly I've just tried to live with it. I'm having a really hard time right now though and finally decided to look for someone else out there who might know what it's like. Happily, I just found this forum. Thank you for being here! I've just started reading through some of the discussions but there are so many and I feel years behind. I thought I'd take a big jump for me and post my story. I've never done anything like this, either talking much about my D problems, or posting anything online. Here goes and thanks to anyone who takes the time to listen and hopefully, reply with some suggestions or hope!
I first had explosive D when I was 18 and it became a more frequent problem through my early twenties. Doctors told me it was Irritable BD over and over again. Finally, after trying every homeopathic remedy, acupuncture, etc… it got really bad when I was in Guatemala, teaching. It was actually there that I was diagnosed with CC by a gastroenterologist (if you have money there, the health care is amazing). He put me on high dose Pepto Bismol, which worked relatively well to control symptoms and I used it for a few years without any apparent side effects. However, last year, at 34 years old, I wanted to start a family and read that Pepto was not safe for pregnancy. I tried to go drug free, but after a terrible bout of 20+ times a day, I miscarried. So I found a new GI doctor here in Canada and after another colonoscopy, and lots of antibiotics, I went on Entocort. It worked really well for me at first, but after a while I needed to be at the highest dose of 9 mg. a day to keep things under control. The good news is that I now have a wonderful daughter who is 6 months old.
The problem is that my doctor does not think it’s safe for me to be on Entocort any longer. I’d been on it at high dose for a year and a half, and it wasn’t even working that well anymore. He says the side effects of long term use are terrible, including osteoporosis, etc…. So , a month ago, he took me off it. We’ve since tried Prednisone with the hope of putting me into remission, but it didn’t work at all and he thinks I’ve become steroid resistant. Now I’m trying Salofalk and Cholestyramine together, but after 3 weeks, nothing. I’m sick 8 -12 times a day and losing weight. My big concern is that I’m breastfeeding my daughter and want to continue to do so, but I’m really worried about the quality of my milk, and absorption of nutrients, vitamins, electrolytes, etc… for both of us. Also, I want to get pregnant again in the next year so I need to be well, but I seem to just be getting sicker here. If I can’t resort to Entocort again, I don’t know what to do. My doctor seems to have run out of ideas and says I’m one of his toughest cases because MC is so rare.
I did try going gluten free once years ago, though only for a few weeks, and it didn’t seem to make a difference. I also tried an elimination diet but could not identify any foods. All the doctors I’ve had seem to think the gluten connection is nonsense when I ask about the Dr. Fine theory I read about online years ago. I see a lot of talk about gluten on this site though. Does anyone think its worth trying again and for how long? How hard is it?
If anyone has any other ideas or suggestions, I’d really appreciate hearing them as I’m feeling defeated by this curse that never goes away. We’re about to leave on a big vacation and I’m afraid my D is going to wreck it between embarrassment, exhaustion, having to constantly keep track of where the public washrooms are, and my worries about my baby’s health too. I’m desperate for hope, and happy I found this forum. Thanks for listening! Jane.

[sunny]

Oh, Jane....my heart goes out to you with all you have struggled with and to be nursing and needing strength must be really tough. I am fairly new here myself, and have gained much knowledge and strength by hanging out here and reading past posts. There is indeed a gluten connection; un-fortunately Dr. Fine is not recognized by most in the med. establishment but by the patients themselves who follow his test results and eliminate gluten. But it does take longer than a few weeks to see results for most folks. I tried following the Specific Carbohydrate gluten free plan for about 6 or 9 months but didn't have a LC diagnosis...many here have used entocort for long periods of time, but they will have to post & talk to you aobut that. Hope you feel welcome and keep coming back..

[tex]

Hi Jane,

Welcome to our online family. I'm sorry to hear that you've been having to deal with this for so long, especially since the longer it goes untreated, the more difficult it seems to be to achieve remission and maintain it.

Long term use of Entocort is not as bad as most doctors seem to think it is, because budesonide is not a systemic corticosteroid, the way that Prednisone is. I'm amazed that your doctor would in one breath say that you need to stop using Entocort, and in the next breath, prescribe Prednisone. Prednisone is a far, far riskier drug than Entocort. That said, most people who take Entocort for long-term use, do so at a 6 mg per day dose, or less, and at the low levels, it is a low risk medication. Actually, Entocort has been shown to be safe at twice the normal full dose, (18 mg per day), but it might not be a good idea to take that amount on a long-term basis. I suspect that most doctors don't recognize the huge difference between the side effect risks of Encocort, when compared with Prednisone. Entocort is not absorbed until it reaches the lower third of the small intestine, and the colon. Therefore, only about 10 % of it, (more or less), is absorbed into the blood stream. It is a very target-specific medication, (the lower intestinal tract), and it does not "take over" the entire body, the way that most corticosteroids do, and it is not likely to cause adrenal problems, the way that most other corticosteroids do.

With pregnancy, and breastfeeding, you obviously have to be very careful with your medications, and as you realize, the malabsorption and malnutrition that can come with severe MC symptoms, may cause risks for the health of a fetus or an infant, especially regarding the development of their immune system. Most often, MC symptoms go into remission during pregnancy, and don't return until after the baby is born, and sometimes even until the return of menses. This is thought to be due to hormonal changes, (most likely due to the elevated progesterone levels during pregnancy). If you didn't experience that temporary relief from symptoms during pregnancy, then your case is somewhat atypical

Anyway, the point is, if you are considering becoming pregnant again, controlling your symptoms by diet would be a far safer route than using high doses of meds of any type. If you can afford the cost of the tests, the stool tests done at Enterolab will eliminate any questions that you might have about the most common food intolerances, (such as gluten, dairy, soy, etc,). This can be done by food elimination trials, but it can take a while, and it can be difficult to interpret the results, sometimes.

As far as results from a GF diet goes, some of us find relief in a matter of weeks or months, while it may take as long as a year, for some of us. The degree of your sensitivities, the number of food intolerances that you have, and the difficulty that you have in pinpointing them, can make the process rather long and drawn out, in some cases. The Enterolab tests will give you definitive results in about two weeks, and unlike the blood tests, the stool tests are extremely accurate and reliable.

Some of the more difficult cases, especially where the symptoms have gone uncontrolled for many years, can require both meds and diet, in order to get the symptoms under control. We are all different, and we all have to work out a treatment plan that fits our lifestyle, and works for us. There is a plan that will allow you to find relief, too - you just have to decide how you want to go about it, and try it. If something doesn't work, we try something else, and then we fine-tune it.

The diet can be tough, until you get used to it, but it eventually becomes second nature. It can be time consuming, because you have to do almost all your own cooking, (using simple, unprocessed foods), but given a choice between the diet, and the miserable existence that I was leading before I began the diet, it was a no-brainer for me. To my way of thinking, the diet is a cheap price to pay, if it allows me to break the shackles that previously tied me to the bathroom.

I hope I've addressed most of your questions, and if I haven't, please feel free to ask anything. We've all been through the misery, humiliation, the "accidents", and all the other unpleasant effects of this disease, so nothing grosses us out, and the chances are very good that someone here can answer just about any question that you might have about living with this disease, and what you can do to get your life back.

Again, welcome to the group.

Tex

[mini]

Hi Jane and

I think Tex has given you a huge amount of advise to start off with and I just wanted to say how much we all understand what you have and are still going through. Most of us it seems were told we had IBS, my GP was the same and would not accept it could be anything else so I had 3 years of the dreaded 'D'. When they finally did give me a DX I was put on predisone for 6 weeks however, after I stopped the medication 4 days later the 'D' returned. Since January 18th this year I have been on Entocort at the moment I seem to be doing well on 3mgs every other day, it really has been a life saver not worrying about public bathrooms etc. I hope you manage to get the problem sorted soon and the one piece of advise I would give is challenge your GI if you believe the treatment is not right for you!

[barbaranoela]

to our family Jane----

Yes---Tex said it all ---and I knew he would pop in to let U know there is HELP---and Xplain issues so easy to understand---

and being that we are all so different---meds work in Querky ways-- as was said *TIS a CRAP SHOOT* with meds.

Pepto was not for me---Entocort caused me problems--Cholestyramine was also a waste---and in the earlier stages my first GI was not INFORMED as to what my condition was---but due to the fact that we were making a trip of a lifetime he started me on Vanco+Flagyle--which eased the *mad dashes*---BUT was the WRONG meds. to give me--yet what did I know---NOTHING--so I took them---

I finally found a great GI,in New York City, and again due to the wasting of time with GI #1 --I had to be treated aggressively---with Pred.+ Colazal (which got me back on my feet) and gave me back a *life*

I was maintained on Colazal for a few years---am OK now--
Several *ingrediants* were my enemies---- which I now can handle!!
I have said---I am very fortunate compared to what many of the peoples here still go thru and suffer with---
There is hope--
Dont give up--
Keep popping in --always someone here that can *answer questions or direct U to articles to read----etc.
And never feel embarrassed to ask/say anything of your issues--we have all been there and said it---

My diagnosis is MCC---


Barbara

[jillian357]

Hi Jane,
I just wanted to say Hello to you as well! I myself recently joined this group too, and I was amazed at all the helpful info I have learned in a short amount of time.

I too am doing the gluten/dairy free route in hopes to be able to get off the meds. At first it was very overwhelming, but in a short amount of time I adapted once I realized all the things I CAN eat.

Like Tex said, yes, it does take more time, and I have resigned myself to the fact that eating out will not be an option for some time--but it's so worth it to feel better.

Dee has posted a TON of recipes on the recipe forum.....I learned a lot from her posts too. Check them out when you have time.

Good luck, and take heart that you are not alone with this!!

Jill

[JJ]

Hi Jane and welcome!

I have been on Entocort for several years and my GI didn't seem concerned to leave me on it. I take 6mg/day. Before stress came back in to my life, I was down to 3mg every other day. My heart goes out to you as you struggle with this!

Take care kiddo....JJ

[starfire]

Welcome, Jane

I surely hope you can find your path to controlling your symptoms/reaching remission. You have been on the powerhouse drugs already so you may as well give the diet a try, or perhaps (provided your GI will agree) diet + Entocort might work where Entocort alone did not. I do pray you will find something to help you.

Don't give up, and keep posting please.

Shirley

[Reggie]

Jane, I also didn't have any reaction to going gluten free, and elimination diets showed my nothing. I did Fine's tests anyway and when it said I had problems with gluten and dairy, I stopped them.

I'm not free and clear, but the colitis is the least of my problems now.

I am one who responds well to cholestyramine granules and I wonder if you have tried that.

I also feel best when I am eating enough raw vegetables and taking good probiotics. It isn't just what you DON'T eat.

Stick around and hopefully you will find the combination that is right for you.

Welcome, Reggie.

[annie oakley]

Hi Jane......Glad you found us. There is hope dear. It may take awhile or it may be a short time but there is hope. This is a great place here. Everyone gets along so well and everyone is so helpful and someone always has an answer. Welcome to our family Jane

[Becky]

Hi Jane,
I just wanted to say welcome too. I'm in the middle of my journey, experimenting with diet and meds. I feel to new to offer advise except to say, "Keep coming back here". There is a huge wealth of knowledge!
Take care ~it can get better!

[Dee]

Welcome Jane!!
Ditto to what everyone before me has stated!!
You have found the right place where there is a wealth of information, on diets, meds, etc....
Keeping my fingers crossed that your doctor will work with you to get you on the right track to better health!

Dee~~~

[Gloria]

Welcome Jane!

My heart goes out to you as a new mother breast-feeding your baby. I'm a big believer in breast-feeding and hope that you'll be able to continue.

I was diagnosed with LC 11 months ago. I've been on Entocort for the past 9 months. I've tried a couple of times to reduce the Entocort below 6 mg/day, only to find my symptoms return. I have multiple food intolerences and am still trying to determine all of them. The past several months, I've found that Entocort alone was not relieving my symptoms and I've had to focus even more on my diet.

It helped me a great deal to get the Enterolab test results and immediately eliminate those verified food intolerances. I eliminated gluten even before I got the test results, based on the information I read here.

This past week I've begun tapering my Entocort dosage from 6mg to 3 mg every other day, and I'm having success so far. I think the difference this time is that I have narrowed down my acceptable food list considerably and am trying to eat only those foods. My diet seems to be picking up where the Entocort left off. It can be hard to determine which foods bother you, but once you find out, you've unlocked the secret to your remission.