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tdavis · Post by **tdavis** » Thu May 14, 2009 8:30 am

Hi everyone. I have had LC for three years. I have done all the routine meds, except entercort. I took prednisone for about two weeks. I hated the side effects. I can't even remember being normal. I take 2 Lomotil, and 2 Levabid every morning to control the symptoms. This time of year is the hardest for me. VACATIONS. This weekend I am going on a boat trip with other couples, and I am already worried that my meds. will not hold, or there are no bathrooms available. I guess we all worry about that. So, all of you who pray, please pray for me this weekend. I am happy I am not alone, with my worries.

starfire · Post by **starfire** » Thu May 14, 2009 8:49 am

I want to welcome you to our "family" but so sorry you needed to find us. This site has been a true Godsend to most of us.

I do hope you will be able to get through the boat trip and any other activities without embarrasing accidents (or any kind for that matter). They sure aren't any fun.

I totally understand about not liking prednisone but I would take Entocort again if needed. I wish I'd had Entocort from the start instead of being started on pred first although some have needed a short treatment on pred to get the ball rolling.

I'm one of those maintaining on Asacol but slowly working on my diet. According to Enterolab, I'm intollerant to gluten and soy. I feel quite fortunate that dairy is not included. My "list" is quite short compared to so many others.

Please don't be hesitant about asking questions (of any kind). There is a lot of information spread over this site so please explore..........

Shirley

Post by **tex** » Thu May 14, 2009 9:27 am

Hi,

Welcome to our internet family. I'm sorry to see that you have been having to deal with this for so long without relief. The meds you are taking are for IBS, (Lomotil slows down motility, and Levbid is an anti-spasmotic), but unfortunately, they do nothing to control the inflammation caused by LC.

Since you didn't mention any interest in trying to control your symptoms by diet, I won't waste your time by posting any information on that possibility.

I realize that you are probably very concerned about trying a drug such as Entocort, but if you would like to get your symptoms under control, (by stopping the inflammation), I urge you to ask your doctor for a prescription for Entocort EC. Yes, it is a corticosteroid, but unlike all the other corticosteroids, it is encapsulated, so that it does not become activated by your digestive system, until it reaches the lower third of your small intestine, and your colon, where it is needed to control the inflammation. Only about 10 to 15% of it is absorbed into the bloodstream, and because of that, the risk of the side effects so common with the other corticosteroids, is similarly reduced. A few people cannot take budesonide, (the active ingredient in Entocort EC), because they are intolerant of it, but for those who are not intolerant of it, it can be a miracle worker. The benefits far outweigh any possible risks. If it adversely affects you, you can easily stop taking it, and if it doesn't adversely affect you, there is a very good chance that it will bring you remission. What more could you ask?

Entocort is by far the most popular med for treating MC, among the members of this board, and it is especially helpful for the most difficult cases, where a diet alone, does not bring remission. It can be used with or without diet changes, depending on the severity of symptoms. Few users on this board have reported any significant problems with side effects. We are all different, of course, so everyone has to find what works best for them, but Entocort is the most reliable, "safe" med, available, for not just treating the symptoms, but actually controlling LC.

Like most treatments, of course, it will normally take Entocort a few weeks to begin to control the symptoms, though some people see improvement in a few days, while others may require several months. At any rate, it is too late for Entocort to bring relief before your trip this weekend, but for the long run, I would suggest that you either ask your doctor about Entocort, or try the diet, (on your own, because most GI docs will argue that diet has nothing to do with LC), to control your inflammation. There is a long-term risk of permanent damage to your body, if the inflammation remains untreated indefinitely, in addition to the inconvenience of having to deal with the constant problems that you mentioned.

Also, taking 2,000 to 4,000 IU of vitamin D3 daily, (the current, updated recommendations), will help to keep you healthier, (most of us are deficient in vitamin D3), and many of us are short of vitamin B-12, and possibly other vitamins, due to the malabsorption problem that LC can cause for many of us. lf you are having occasional problems with leg or foot cramps, (primarily at night), that can be an indication that a malabsorption problem is causing you to have vitamin and mineral deficiencies. This doesn't happen to all of us, but it is quite common.

Good luck with your trip this weekend. Surely the boat will have adequate bathroom facilities. Some of us have found that if Lomotil does not work as well as it should, the OTC version, Imodium, can sometimes bring better results. Sometimes meds just stop working as well for us, and a change might help. Anyway, that's another option, in case you need it this weekend. Please don't hesitate to ask any questions that come to mind, and let us know how you're doing. And above all, please try to fully enjoy the trip.

Tex (Wayne)

jodibelle352 · Post by **jodibelle352** » Thu May 14, 2009 10:48 am

If it's an consulation; you are very right we all suffer from "Will there be a bathroom?" syndrome. Even though I've been on Entocort since Oct. and am doing quite well I still have periods where I find myself in a very disheartening situation where I need a bathroom and have NO IDEA where it's at.
At the onset of my diagnosis I found it hard but very important to be honest with my friends and family. Some were understanding and others just didn't quite understand or "get it"!
If it were me I would make sure you took some protection (Depends) and make sure you wear them especially if you're going to be going somewhere that access to a bathroom is just too far away for comfort.
I know with myself, when I do have a flare that sometimes going to the bathroom isn't a 1 trip. Usually, even though I think I'm finished I find that within just a few minutes I have to go again. My best advise is take precautions and if you happen to be uneasy and uncomfortable then don't place yourself in a position where you may become embarrassed. Like I pointed out earlier, confine in your friends so they are aware. If they chose not to understand then it's their loss of a very caring friendship with. This is not an easy thing to do but it sure weeds out the non-caring so called friendships.
We have a disease which is a rare form of colitis that needs us to be especially careful, cautious and to be unguard.
I do believe in prayer and will keep you on my prayer list while you go on your outing asking God to watchover, protect and guide while you are on your trip.
Love and God Bless:
:angelpraying:

Jodi

barbaranoela · Post by **barbaranoela** » Thu May 14, 2009 3:53 pm

TDavis --pleasure to meet U--and I am wishing U the BEST weekend ever--
Sometimes---it gets to the point where U just have to enlighten peoples that U HAVE a medical problem and might need to *push* anyone- hogging the bathroom too long --away----well not Xactly *shove* but kinda *PLEASE!!!!

Let us know how the weekend went---

As I often say---the *wellness* road meets to greet each of us in time~~~~~

:butterfliesonrose:

Barbara

Gloria · Post by **Gloria** » Thu May 14, 2009 9:46 pm

Welcome TDavis!!!

I also had a bad experience with Prednisone and was very reluctant to take another corticosteroid. I finally decided to fill my Entocort prescription. I've had no side effects from using it and it brought me relief from LC within 4 weeks. I call it a miracle drug for MCers. Some do have side effects, but the majority of us don't. I also found it necessary to change my diet in order to be completely free of LC problems. Maintaining a food/elimination journal helped me see a relationship between what I ate and subsequent reactions.

Vacations are indeed a problem for those of us with this disease, especially if it's not under control. I used to take Immodium. When I flew, I would make sure my seat was near the bathroom. I think I would make sure that a bathroom was available before I'd go on a boat trip. I would also let them know that I might need to make a mad dash to it.

Good luck on your trip! If you have any other questions, please feel free to ask. We are here to help and support you.

Gloria

tdavis · Post by **tdavis** » Tue May 19, 2009 11:05 am

Thank you so much for your prayers!!! I did survive my boat trip without any problems. I do think it is time for the Entercort. It is so expensive, and it seems like it is a forever illness we all have. I am a respiratory therapist, and have seen so many people that would give anything to live. I feel terrible when I complain about my illness. It is nice to find a place to vent our problems and everyone understands. I would be interested in any diet sugestions. I did have food allergies as a child, and was treated with injections to reduce sensitivity. I was able to resume eating what I want for years. I do tend to eat the same foods, oatmeal, cheese, salad, crackers, and any vegie. I thought I would also ask, does anyone have anxiety with this illness? On my boat trip I had a couple of melt downs in private. My poor husband had not seem me like that since I was first diagnosed. I told him I was tired of just getting through life. I want to enjoy life again. I am only 37, and have a wonderful little girl, and husband. Thank you all for letting we vent. God bless you all.

Post by **tex** » Tue May 19, 2009 12:40 pm

Well, That's good news that you made it through the trip without any "accidents". You certainly don't have to feel guilty about venting about this disease. That's one of the reasons this site is here. As we all know, MC can be a very debilitating disease. Most doctors don't seem to realize that, because it is usually not a fatal disease, but the stress of dealing with MC can be devastating.

Yes, anxiety, and depression are very common with this disease, because the symptoms, and the feeling of hopelessness, can cause us to feel isolated. Even our families don't really understand what we are going through, and if a G I doctor tells you that he or she knows how you feel, you can bet he or she is lying, unless they have the disease themselves.

Many members find it necessary to use anti-anxiety meds, or anti-depressants, if those issues seem overwhelming. Unfortunately, that is somewhat common with this disease. As we sometimes say, "If this disease doesn't depress you, nothing will".

For some of us, Entocort will control our symptoms no matter what is eaten, while others find it necessary to carefully control their diet, even while taking Entocort. We are all different, and which category you are in will depend on how sensitive you are to various foods. One way or another, though, you can get your life back, and we will help you in any way we can, so that you can fine tune a treatment program that is right for you. Most members find that after they have been using Entocort for roughly six months or so, they can begin reducing the dosage, and eventually discontinue it completely, or at least get it down to only 1 pill a day, or less.

Many of us here, control our symptoms by diet alone, and quite a few use both diet and Entocort. If you want to try diet control, gluten has to be totally avoided, (even tiny traces). That includes wheat, rye, barley, and for all but a few of us, oats. All but a few of us also have to avoid all dairy products, because we are intolerant of the main protein in milk, casein, and casein is in all dairy products, and all dairy derivatives. About half of us are intolerant of soy. Some of us are also intolerant of egg whites, and a few other food items.

Until our intestines heal, (from the physical damage that the disease causes), most of us have to avoid many other food items that we call "irritants". We're not really intolerant of them, (and they can be slowly added back into the diet after healing is complete), but until our gut heals, they tend to irritate it, and prevent it from healing. Irritants include things such as fiber, (which makes a lot of fruit off limits, and some vegetables), nuts, (for some people, but not for everyone), sugar alcohols, (sorbitol, mannitol, etc.), and especially things such as lettuce, cilantro, and parsley. We can usually still eat vegetables such as potatoes, squash, green beans, and broccoli, so long as they are well cooked. Any raw fruit or vegetables are definitely off limits, until healing is complete, or nearly complete. I'm sure I'm forgetting some things, but that covers a lot of it. I lived on meat, (mostly pork and poultry), potatoes, rice, and a few veggies, such as green beans, squash, and broccoli, while I was recovering. You have to be careful that the meat is not injected with some kind of broth, because often that broth can contain gluten, or who-knows-what. Sanderson Farms, for example, sells non-injected chicken, but most of what Tyson sells, is injected. You have to remember to always check the labels on everything you buy.

We have various forums here, where information on the diet is listed, and we have forums where diet foods and menus are discussed, and "Dee's Kitchen" contains hundreds of safe, gourmet-class recipes.

Never hesitate to ask any questions that come to mind, and please keep us posted on your progress.

Tex

barbaranoela · Post by **barbaranoela** » Tue May 19, 2009 2:41 pm

TD---good news that U did enjoy the boat trip--and of course the anxiety is always *lurking* ---
Oh yes, and U must go and look at Dee's receipes---she is some cooker---

The thoughts of never getting better can weighs us down so much -- please do know there is help and U WILL get there--

Venting--heck thats a good thing to do----get it outta ya system--we all pop in and *lay* out our issues so dont feel badly about that---
Keep in touch with your *body* and keeps us informed as to how U are progressing

barbara

tdavis · Post by **tdavis** » Tue May 26, 2009 12:18 pm

Thanks so much, you are all very kind.I made a appt. to see my regular GP about my anxiety. I am also going to call my GI doc. and get a script for the entercort. I have found so much great info. on your site. Has anyone had their gallbladder removed. Mine is considered low functioning, without gall stones. So it is up to me when and if I get it out. I was just wandering how this might affect my LC. Has anyone else had problems with their gallbladder?

Post by **tex** » Tue May 26, 2009 1:14 pm

Hi,

Personally, unless it were bothering me significantly, I don't believe that I would have it removed. Many people who have that surgery, have problems with diarrhea, afterward, due to the bile-dumping syndrome. Please read the posts in this thread:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=7226

Note that in the poll, about 21% of us have had the surgery, and about 12% more, have had gallbladder problems, but have not had the surgery. I don't know what the prevalence of gallbladder disease might be, in the general population, but this seems to be a fairly high rate, so it may be connected with MC, in some way.

Tex

jodibelle352 · Post by **jodibelle352** » Tue May 26, 2009 1:21 pm

Hi T:

Believe it our not I had my gallbladder removed 1 yr. ago this past Jan. 8th even before my dx. of CC.

My gallbladder was low functioning but I had no gall stones. I did however have severe pain that started in front just below my breast bone which progressed to my back between my shoulder blades. These gallbladder attacks at times took me to my knees. Even after my gallbladder was removed I still continued to have these symptoms for a few months after surger which is not uncommon with alot of people who have their gallbladder removed.

I haven't been plagued with anymore attacks in a very long time now and do not regret making the choice to have it removed when I did. Even though I had no idea at the time that I had CC. My gallbladder was not working properly and was filled with what they "sludge" which usually happens before gall stones develope.

I can not make your decission for you I can only say that I chose to have mine removed before my symptoms became unbareable. I think it would be a very good idea to see if any other members have had to make similar choices and even talking with both your GP & GI would be excellent advise in making a more informative decission.

Love and God Bless:
Jodi

Rose · Post by **Rose** » Tue May 26, 2009 3:46 pm

T,

I had my gallbladder removed 3 years ago for the same reasons that you have except I was having burning and pain on my upper right side under my breast bone. I was nauseated too. This was b/f I was diagnosed with cc, but I was having explosive d prior to having my gallbladder removed and still have it today. I also have anxiety/depression and take effexor for it.

I am glad that your boat trip was d-free. I am sure that entocort will work for you. It worked for me, but I could not handle the s/e and had to go off them, so now I am back to where I started.

Rose

Bifcus16 · Post by **Bifcus16** » Wed May 27, 2009 7:25 pm

I had to wait six months for my gall bladder removal. During that time my naturopath told me to limit myself to 35g fat per day absolute max. That meant keeping a food diary and counting fat grams as you normally do calories. It worked. The only times I had attacks was when I ate too much fat.

Kept it up for about nine months after the operation too, as it caused D until my body got used to regulating bile flow without a gallbladder Too much fat can still cause me short term D, but much less common now.

Lyn