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Forum Name: Gastroenterology Topics

Question: Constant Diarrhea for 2 years


 MHerring-Mitchell - Thu Oct 30, 2008 10:30 am

Hello, I am a 36 year old female who has been suffering from diarrhea (watery and then just soft but never normal anymore) for a little over 2 years now. It started when I went back to college after having my last child who will be 3 on Jan. 30th. I do suffer from severe anxiety and panic attacks which is controlled with xanax (1mg. 2-3x's a day) which I have had for about 11 years after my father passed away. When the diarrhea started I just thouht it was from anxiety about going back to school and the stress of trying to get into the nursing program. It wasn't that bad in the beginning and I'm starting to wonder if that was because I was on the Depo shot (to prevent pregnancy) and I believe it has a small amount of steroids in it from what I was told. When I stopped taking the Depo shot, and had a copper IUD placed, the diarrhea started to get worse while the Depo was wearing out of my system. It got to the point where I couldn't eat anything without having to run to the bathrrom about 1/2 hour after eating. I finally went to the doctor and they sent me to the emergency room because they felt a mass on the right side of my stomach (in the large intestines). The emergency room ran some test which included blood work and a CAT scan. The blood work came back fine but the CAT scan showed them something else which made them admit me that night. They had me in the hospital for 9 days on Flagel and Asacol and I wasnt allowed to eat or drink anything at all. They said I had Crohns disease and after a sonogram and another CAT scan they finally let me go home. While I was in the hospital I still had diarrhea but NEVER pain in my stomach which they were confused about. I had a colonoscopy done in about Feb. of this year and my GI doctor told me everything looked great (except for a lot of hemroids) and I didn't have crohns and to stop taking the asacol. Then he ordered one more test which was a small bowl series which showed there was tickening in the small bowel (where the small and large meet, I think it was the illium).

The funny thing is after the colonoscopy was done and he said I didn't have crohns, I asked him about the thickening that i still have on my right side (in the large intestines) and he told me it was nothing to worry about and was normal for some people. I wanted him to explain that to me but he doesn't liked to be asked questions so I left it alone because it sounded like good news.

Sorry to go off track, anyway....after he found out about the thickening in the small bowel he told me to start with the asacol again and that it probably was a very mild case of crohns. Another thing I don't understand is my primary care doctor did a blood test that said I do have Crohns and the GI doctor did one and told me I didn't have it.

I had to go see my primary care doctor because i was having constant irregular heart beats and she asked me about the diarrhea. I told her how bad it has got since I have been out of the hospital and the ONLY normal bowel movement I had in over 2 years was a day after the colonoscopy (1 time). I told her about the GI doctor and she told me to stop going to him and they would find me another one. She said she doesn't think it's crohns anymore because I would have had severe stomach pain (which i don't). She took some blood and did another test because she thinks it's something else that has to do with absorbtion of the small bowel or something like that.

I have lost 20 pounds since Jan. 2008 and Im really getting sick of this. I am starving but alot of times I am so scared to eat because I don't know what to eat. Sometimes I will be o.k. for about 2 weeks where I will eat pretty well (no fast food, spicy food, or anything greesy) and I will just have very soft bowel movements but then out of no where the watery diarrhea starts again. I am so week and tired from it and I would really love some advice.

Oh yes, I almost forgot, The doctor did tell me last week to try a gluten free diet but I couldn't find anything gluten free in the super market but waffles and they wasnt that great. I don't have money to go to a special place because i am on disability and can't afford it so I just feel like I am going to suffer forever or my body is just going to shut down on me. Please help me with your opinion about everything. Thank you so much.
 John Kenyon, CNA - Thu Jan 01, 2009 12:20 pm

User avatar Hi there -

You've certainly been bounced around a lot through this ordeal. I think your primary care doctor may be closest to correct about this, for reasons you've already pointed out. While the problem could be aggravated by some residual anxiety problems (you're still on the Xanax, so anxiety is likely present, just controlled or masked), and this is often confusing, the symptoms generally sound very much like celiac disease could be the explanation for everything. This can be discovered by means of a specific blood test, and while a gluten-free diet can be a real annoyance, at least at the beginning (due to the amount of research and time-consuming label reading it takes to get started), it can also make a tremendous difference, and it's not so much about buying "special" foods as simply learning which ones have low or no gluten content (there are many). Gluten also isn't just found in products made with wheat, which makes it even more of a challenge at the beginning, but if your doctor does make this the diagnosis, she can refer you to a dietician or, at the very least, provide you with some printed or on-line resources that will make it a lot easier for you to get started with the new regimen. Once it's in place (it often requires some custumization depending upon the individual patient) it's not expensive, just specific.

I hope this is helpful to you. Please follow up with us as needed. Good luck to you with this.
 MHerring-Mitchell - Thu Jan 01, 2009 3:24 pm

Hello, Thank you so much for responding. Well, since I wrote that post I have found out that I don't have celiac disease. My primary care doctor sent me to a new GI doctor who was much nicer then the last one. He looked over all my CAT scans and sono's that have been done and ran some blood test of his own. He called me a week and a half later letting me know that it definatly is crohn's disease (that was a little over a month ago). He told me to take the asacol 3 pills 3x's a day and wanted me to start on Entocort EC 3mg (3 pills every morning). Now I have another problem because I am very SCARED to take the Entocort and haven't started it yet.

I have had the pills for over a month and haven't taken them yet. Being that it is a steroid I am very worried for a number of reasons. One, is because I have 5 kids who are always getting colds from the cold weather and being in school and from what I have read about the medication it says to avoid being around people who are sick because your immune system is lower while being on steroids. The second reason, I suffer from anxiety and panic attacks and I'm so worried that the steroids will increase the anxiety because from what I read it can cause you to suffer from anxiety and you can have problems sleeping at night from feeling anxious and restless. I want to take them so I can stop running to he bathroom and feel normal again but I am so scared. I also heard that when you try to get off of entocort your symptoms come right back and sometimes can actually be worse then whe you started the pills.

I have lost so much weight that my doctor also gave me a prescription for Ensure (which is like a milk shake). The only problem with drinking them for me is that it makes my stomach hurt and I don't know why because it's lactose free and I can eat cheese and stuff without a problem. I try to eat pasta and mashed potatoes to try and gain weight but I haven't gained 1 pound because as soon as I eat I am in the bathroom. I was doing good for about 3-4 weeks, which is a first for me in over 2 years but something very stressful happened and had me in the bathroom again since (and thats been about 2 weeks now). I was running a low grade temp. for about a week and went to the emergency room. They did another CAT scan with IV contrast on Dec. 26th and the doctor told me that it showed the thickening in the illium and to follow up with my GI. The fever went away (which can also have been from a very bad cold I had developed). The doctor in the emergency room also gave me a prescription for Flagel which I am taking now.

I really want to be able to take the Entocort and not be scared so if there is any possitive information as opposed to all the negative stuff I have read I will love to hear it.
 John Kenyon, CNA - Thu Jan 01, 2009 11:10 pm

User avatar Hi there -

Well it was kind of a toss up between Celiac and Chron's (it often is), but it didn't sound as much like Chron's. I'm glad you have a firm diagnosis, though, so you can get this managed.

You can see for yourself how Chron's can affect you, and you don't want to continue to lose weight or go through all the other stuff associated with that. The Entocort should get it well under control. As for side effects, Entocort has some, but it's not nearly as bad, potentially, as your health could get without it. Let's go down your list of concerns: immune system suppression is sometimes seen to varying degrees, but it's not generally profound; you may be more prone to catch an occasional cold, but five children that's almost certain to happen anyway. People who suffer from anxiety can find it ratcheted up a notch at times (but more often what you're likely to notice is just feeling more tense or perhaps cranky, and not everyone has that happen either). If the med does seem to increase your anxiety levels, that can be countered by having your doctor prescribe a maintainance antianxiety drug like clonazepam, since Xanax isn't the best preventive for it anyway, but makes a better "rescue" drug than a therapeutic one. This would pretty much cover any problems with possible increases in anxiety. As with any medication taken for a long-term condition, the symptoms of that condition are going to come back if you stop the med (unless it is intended as a limited term of use to begin with). That's par for the course, but doesn't mean if you did stop the Entocort that you'd have worse problems than before, only that you may have them again (and probably would) and they may seem worse once you've been relieved of them for a while.

In short, the possible side effects of the Entocort should be far more than outweighed by the benefits. You'll feel so much better once this thing is being managed and you don't have to spend half your life in the bathroom, I think you'll be very happy even if you do wind up having some of the potential side effects, which are generally minimal, especially compared with what you're going through now. When you feel well in general everything else is easier to handle. Keep that in mind.

I hope you'll give the Entocort at least a trial run, and if it causes some "antsiness" for the first week or so, please try and ride it out, because it's really important that the effects of Chron's be managed, and again, you'll feel so much better I'm willing to bet you'll be able to deal with any possible side effects much better than you'd think right now. And they are only "possible." Not everyone gets all of them, and some people don't get any. Everyone is different where that's concerned.

I hope I've addressed your concerns and please stay in touch with us here. We'll look forward to an update, and if you have problems with the medication, please write us here first, before you stop it. Personally I suspect you'll feel so much better it will work out really well for you. I'm so glad you at least know what the problem is and there is a treatment for it that generally works quite well.

Please do stay in touch.
 Cass - Tue May 19, 2009 6:41 am

You could be suffering from fructose malabsorption. Fructose is in most fruits and some vegetables naturally and high fructose corn syprup added to many products. Many people who have this also cannot eat wheat. Hope you get better soon, I know how constant diarrhea affects one's life and it's not fun.
 daisyg1 - Sun Oct 25, 2009 5:18 am

i am 34 and female, i have had the same problem for years. never thought i would ever "not have loose stools". i found out in march,09 that i had type 2 diabetes, and i stoped drinking pop and eating junk food and fast foods, i was put on medicine for the diabetes and i managed my diet, no junk foods,pop,f.foods,chips etc.. i started to eat lots of frozen or fresh veggies and some fruit, only turkey or chicken, grilled or baked never fried or with breading. the chicken is alway 99% fat free and no hormones or steroids added.lots of greens,salads. portion controll is a big help.you may want to talk with a nutritionist and set up a diet plan for you. i went through all the same test, colonoscopy,blood work,glutten free etc..they all told me i was fine. until i found i was diabetic and did the whole nutrition thing, i feel great and never knew it could take so much work to have a bowel movement! what works for one may not always work for another, so good luck and hope this info was of some help.

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