NEWBY NEWBY PLEASE HELP ME

[lisa15601]

So it all started in September after having the worst sore throat and cold ever. Took amoxicillin 875mg. 2 x day without food because I couldn't swallow. Took the amoxi even though doc said it was viral he said take it anyway. Well, at this point I was also trying to get pregnant and took clomid 50mg as well. D id not get pregnant which is prob a good thing now, but anyway, about 2 days after finishing the amox i got bad diarhea and 2 days after that there was mucus in the stools, well actually just mucus in the toilet. I was getting up all night every ten minutes to poo and and pee. So I panicked as I also have anxiety. Went to my obgyn and he gave me flagyl because he thought I may have CDIFF, which after stool culture was dont it was negative. Well I took the flagyl anyway, bad move. Ended up in ER and they did CT scan and found nothing. Bloodwork fine, etc. That was Oct. 14. Went to my gastro on the 21st and he told me to take align and eat yogurt. FABULOUS. Well anyway back to ER two days later and of course all they want to give is pain meds. Well anyway, I decided to call a new gastro and got an appt. the next day. Did bloodwork and stool samples and it was fine. She was wonderful and gave me a script for desipramine and levsin, which helped somewhat but I still had bouts of loose stools 10 times a day and major insomnia. I called her and she scheduled a colonoscopy and on Nov. 4th I had a colonoscopy and she called me a few days later and said I had MC. She told me to keep taking the desipramine and see how it went. I kept getting worse. Last week there was tons of mucus and a little blood which came to find out was from an internal hemorroid. Then she had me take 9 peptos a day. I tried for 2 days and got worse. Called her back, and she prescribed entocort, which I started yesterday. I just want to speak to people with the same experiences. I have and have had so much pelvic and abdominal back pain I hope the entocort works. I have lost 22 lbs in less than 2 months. PLEASE SOMEONE HELP!

[Joefnh]

Hi Lisa, first take a deep breath and relax. As unsettling as all of this is, there is a path forward that with some information from the group you will find out what works best for you.

You have already taken the first steps in getting the diagnosis. Now you know what you are dealing with and can properly address both the diet and any medicine that will help your particular case.

For the most part people with MC are reacting to dietary elements including gluten (wheat) which can be found in bread, cookies, pastries etc... All the good stuff. I would highly recommend cutting out gluten first. Additionally more than half of us react to soy and dairy as well. With Thanksgiving coming up be careful of the gravies and desert and stuffing.

As far as the medications you are on I am not familiar with them, but I'm sure others will respond shortly.

Most doctors do not address the dietary aspect of MC, they usually try medications for irritable bowel first, which really do not help too much. One of the popular meds is Entocort EC which is a steroid that stays mostly in your GI tract, minimizing the steroid effects on the rest of your system.

The reason Entocort works so well, is that MC is a inflammatory disease and that inflammation needs to be brought under control. The inflammation in most cases is due to a dietary aggravant. For many of us the process was kicked off by a strange cold or flu.

As far as treatments, there are a number of us that can treat this disease by diet alone or with very minimal meds.

Lisa welcome to the group and please don't hesitate to ask anything, you are among a group of people that have gone through exactly what you are dealing with now.

For me I was diagnosed in April with MC (CC). I was having a lot of D and pain in my lower back, joints and muscles. With the help of this group I got my diet under control by eliminating gluten, soy and dairy. That coupled with the use of Entocort has gotten me to the point that I am more or less symptom free. Like you I also lost weight, before stabilizing i have lost about 40 pounds.

Again relax and work with us to become informed. With that you will be able to find your way to the treatments that work best for you.

Welcome to the group Lisa.

--Joe

[Celie]

Hi Lisa,
Your experience sounds a lot like mine. But, I got to a good GI doc a little quicker. She started the Entocort as soon as the pathology report came back. I have not heard of Enterol. Are you sure that is the name of the medicine?

For many people here the Entocort is magic. I got significant relief from D in 24 hours and compete relief in 48 hours. If that is the drug you are taking, I suspect you will have good results. Once you get enough relief to catch your breath, you will find that you have come to the perfect place. I am new here, too and I am amazed at the depth of knowledge available here.

Those wiser than I will come along and point you in the right direction.

This condition is a pain in the #%*, but with patience and determination, you will be able to get your life back. Each person is different, but there is so much good info here, you will be able to find out what works for you. I am still in the process of figuring it out. But, this group has given me the confidence to try! I hope it will be the same for you.

Welcome aboard!

Celie

[Martha]

Welcome, Lisa. So sorry that you have MC, but you are fortunate to have found this group so soon. There is lots of good information and encouragement here.

I found that Entorcort EC helped me right away. Not everyone gets immediate relief from it, but some do. I also find that eating coconut helps the diarrhea. I was on Entocort for 3 months, then started eating coconut, and have been able to remain in remission from that I have also been gluten-free for 5 weeks, and decided to do that based on the information that I found on this site, saying that food intolerances are likely at the base of the problem.

Anyway, welcome, and as Joe said, here you can ask anything and say anything. It's a good place to let off steam if you need to!

[lisa15601]

Sorry everyone it is entocort, I got into writing so fast I messed up. It is 9mg a day. I am also 34 yrs. old and no children.

[lisa15601]

I want to cry because everyone seems so nice on here. I am just so sick of the pain and suffering, I battled anxiety for the last 5 years and thats has been a struggle, and now this, but hopefully with ur help I will get through this. Please stick with me.

[Joefnh]

OK Lisa that's a good start with the Entocort. Next and just as important is the diet. As mentioned above you should cut out all gluten and probably soy and dairy to start with.

Another good diagnostic tool would be to have food tolerance and genetic testing by a company called Enterolab. They can be found at https://www.enterolab.com/

This testing is unique and may not be covered by insurance but can help you quickly determine what you are reacting to.

The other method that I did, was to go back to basics with no processed or prepared foods. Additionally I cut out all gluten soy and dairy. From there I slowly added one food type back at a time while keeping a food diary. Even with the Enterolab testing you may want to take this approach to determine what foods are causing you issues. This can seem like a lot but just remember take it slow, one new food at a time while staying consistent with the Entocort.

It seems that for most the medication combined with the diet has produced the best results. But remember the diet is as, if not more important than the medications. The combination of the 2 for most is required to this disease under control.

--Joe

[Joefnh]

Lisa don't worry we will stick with you. Just as you will be learning from us, we will be learning from you.

Just relax and take a deep breath.

Keep in mind that it can take a 2 -3 weeks for the Entocort to fully kick in , just be faithful in taking it. Some do see benefits sooner. For me within the first week I started to experience relief.

That coupled with the diet will give you the best path to relief.

Hang in there we will be here whenever you need to talk.

I forgot to mention above that it is generally accepted that you should not take any NSAIDs such as ibuprofen (Motrin), aspirin, Aleve or other related products as these medication can not only cause MC in some, but will also aggravate existing MC symptoms. Tylenol is fine, beyond that you should check with your GI or GP doctors for recommendations if you need anything different.

--Joe

[Kari]

Hi Lisa,

WELCOME to this internet family of "caring and sharing". It has been a lifesaver for so many of us here, including myself. I'm so happy for you that you found this site early on in your diagnosis (I had D for close to 11 years before discovering the diet connection, along with this forum).

I know all of the information here will seem somewhat overwhelming at first, but if you keep reading and stick with it, you will discover a wealth of useful information in dealing with MC. You are already well on your way to figure all this out, since you have had the proper diagnosis and are on the same medication that is helping so many here.

Joe has given you a lot of good advice, so I just wanted to welcome you and wish you the best of luck in finding your way to achieve remission. Even though your may feel horrible at this point in time, keep in mind that this is not a life threatening disease, and with diligence and patience, you will eventually feel much better.

Love,
Kari

P.S. This forum has been here for many years, and the administrators are amazing people, so I have no doubt that it will be here for many years to come.

[lisa15601]

I did buy gluten free stuff last week and I haven't had dairy in a month. The worst part of this all is the intestinal pain, pelvic and back pain, its horrible. And then the gurgles are annoying. Have any of you had this,

[tex]

Hi Lisa,

Welcome to our internet family. We consider ourselves a family because no one truly understands this disease unless they have it. We don't all have exactly the same symptoms, but most of us have enough of the primary symptoms that we understand exactly what you are going through, and we certainly empathize with you.

C. diff is notorious for false negative culture test results. Sometimes it takes as many as 3 of 4 culture tests in a row, to get a positive result. From the description of your symptoms, IMO, it is very likely that you had pseudomembranous colitis, otherwise known as C. diff. It would be very unusual for MC to generate that much mucus in only 2 days, but C. diff bacteria can certainly do that, and amoxicillin is notorious for causing C. diff infections. It is the number one antibiotic to cause that problem. IMO, doctors shouldn't be prescribing it, for that reason, but unfortunately, they prescribe it anyway.

Drug-induced colitis is a also a common cause of MC. IOW, the antibiotic probably caused an infection from C. diff, and the C. diff caused your MC. It's also possible for antibiotics to cause MC by other mechanisms, though it usually involves upsetting the bacterial balance of the gut, (such as allowing C. diff to multiply unrestrained).

You are on the right path to gain control of your symptoms. Entocort is the most practical medication for treating MC. As the other members have already mentioned, you will have better results if you modify your diet, also, but with any luck at all, you should start seeing some benefits from the Entocort soon.

Again, welcome aboard, and please don't hesitate to ask any questions about any issues that concern you. MC can be a very debilitating disease, and there is no cure, but we have found that by fine-tuning our personal treatment program, we can effectively control our symptoms, and as Celie pointed out, "with patience and determination, you will be able to get your life back."

Tex (Wayne)

P. S.

The worst part of this all is the intestinal pain, pelvic and back pain, its horrible. And then the gurgles are annoying. Have any of you had this,

Yes, most of us have had to deal with all that, some of us have had to live with it for years. The good news is that the Entocort will help to relieve it relatively quickly, and the diet will help to prevent it from happening again.

[Joefnh]

Hello again Lisa. Yes I know that many here have discussed similar pains. For myself I went through 10 years of lower back, hip, knee and various muscle pains, lots of pain meds & no diagnosis. It was not until this diagnosis last April, along with the diet and medications that these pains have FINALLY settled down. Its great you are starting a GF lifestyle. Just be sure to avoid at least for now anything that is factory made, its so hard to really know whats in that stuff. If its in a plastic wrapper or has a shelf life longer than we do LOL.. avoid it - at least for now.

The best bet is to prepare your own foods to be sure of the contents. Check each ingredient label when shopping. I found that starting with simple ingredients like chicken, white rice and well cooked carrots made a great meal that settled quite well. I also did find that some spices would cause problems, so to help out there I initially stuck to salt and pepper and then added more slowly.

I know for me and few others, high fat and high fiber foods can also cause some aggravation. Just last week I had made some chicken and decided to also have some of the tasty skin, that was a mistake. The fat content did not help things, oh well lesson learned. I normally would stick to skinless chicken.

This is one of those things that just will require patience. For me that was the tough part initially, I was used to taking a pill and feeling better within an hour... not so with MC. I am so glad that I found this group of people.

It can take a few weeks to start to see the benefits of eating GF/SF & DF depending on what you are reacting to. Don't expect results overnight, but if you stick to the diet and meds you will see results.

Thanks so much for sharing your journey so far Lisa.

--Joe

[lisa15601]

Thank you so much Joe, you are great. You are making me have faith that things will get better. I'm new to this and I will be asking alot of questions and will be keeping everyone posted, so I hope I'm not going to be a pain.

[lisa15601]

Thanks Tex for the info. My stools were tested twice for Cdiff and both negative. The doc is the one after the colonoscopy dx me with the MC. I still believe it was from the amoxi and then the flagyl. Gastro also thought that the prilosec i took for a while could have had something to do with it also

[Gloria]

WELCOME LISA!!!

I thought I'd mention that I didn't find relief from my symptoms until I was on Entocort for 3-4 weeks. As you've read, others respond sooner. Just be aware that it may take a little longer. Be patient - it should eventually let you get back to living a normal life. But also be forewarned: if you go off of it without sufficiently modifying your diet, you will end up right where you began. Entocort treats the symptoms, but diet treats the disease.

We're happy to have you on board and hope you will find answers to your questions here. I'm sure you are reading and learning as much as you can.

Gloria