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Hi everyone, I joined a few months back and have posted a few times to express my distress over the situation and also to seek support in dealing with this disease. Everyone has been so helpful.
Upon the advice of my GI and mostly the advice of members on here I started the Entocort at 9mg a day and then got rid of the Gluten in my diet. I have my self down to 3mg a day and have been GF for a few months now. I also take 2 pepto tablets before bed each night.
I believe I was doing well. I had far more good days then bad. And for a solid month straight I was having formed BMs (sorry TMI) also I had more energy to go to work and come home and play with my 4 year old son. I was so happy with that progress.
But then about a month ago after picking my son up from daycare a drunk driver came plowing out of a side street and smashed into the side of my car. It spun the car around and completely totaled my car. THANK GOD my self and more importantly my son were completely uninjured.
The stress started while dealing with the mans insurance. So to make a long story short - They never gave me a rental car. I had to call 2 different people 4 different times a day everyday for the last month JUST TO GET ANYTHING DONE. I risked losing my job because I constantly had to walk off line to place calls or receive calls. My boyfriend and I live together but I had to borrow his car and he had to borrow his brothers truck - thank goodness he had an extra vehicle for us to use. The whole process took them a month to finally have someone come out only to assess that the car was totaled and it would have to be taken to a junk yard. I cried over that - I LOVED that car, I've had it since I was 17 it was like my second child.
But all of this stress I believe is constantly setting me back on my healing process. My anxiety has been so high every single day. I get so nervous that I literally shake and feel clammy. I've always had anxiety but typically I can manage it and live a normal life. But now with the MC it takes the anxiety to a whole new level. On the days where the anxiety is particularly high I can feel my stomach start to gargle, I get cramps and gas, and then inevitably I get D. Everytime.
So my question is does anyone know of any anxiety medicines that are MC Approved/Safe? Also if there is a better type than another I would like to know. I feel like if I could just take that edge of the anxiety that I could get back on track with my healing process. I probably should of been on a medication back in high school too because I have insomnia due to me laying in bed at night worrying and over thinking every single little thing. If I could just calm down a little bit it would such a big help.
I really appreciate any and all suggestions you guys can give me. Sorry for such a long post
I'm sorry that your life has been thrown for a loop, and you've been treated so unfairly.
Yes, stress it a major cause of MC flares, and for many of us, controlling our stress is the key to controlling our MC symptoms.
If you are sure that you cannot relieve your stress by common stress-relief techniques (yoga, meditation, etc.), then a drug may be helpful. But please be aware that drugs always come with side effects, and most drugs in this class are very difficult to wean off of, once you have taken them for a while.
That said, a few members have found that the drug Elavil (amitriptyline) has been very helpful for them, and they feel that it is a necessary part of their treatment program. However, please note that we have approximately an equal number of members who can point to taking amitriptyline as the original cause of the development of their MC.
Therefore, if you try it, be aware of your symptoms, and if it makes your MC worse, you will need to discontinue taking the drug. You might find the article called Insights and Ponderings at the following link (scroll down the page about half-way) to be helpful:
Good luck with this, and please let us know if it helps (or not).
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Anxiety sucks.
Whenever I feel jittery/anxious (and this is due to hormones/menopause), I do two things.
One is pray/read the Bible.
The second is take L-Theanine. Make sure it is in the form of Suntheanine.
L-Theanine is basically the extract of green tea.
You can buy L-Theanine at any health food store.
Pure Encapsulations makes it, but it's very expensive.
Jarrows is much cheaper and works well.
I have had no side effects with it.
It takes about 45 minutes to take effect.
Hope this helps.
Sorry for your car accident.
My car was totaled the day after Christmas, so I know where you are coming from.
Oh yes! If you can, massage/chiro is a great combo to help with stress/anxiety.
I am one of the people that ended up on Amitriptyline as part of my MC treatment. I take it because is slows down or regulates the motility of the bowel. I was having times of just erratic spasms and cramping, sometimes just because I hadn't slept well the night before or sometimes over something more serious and stressful. After about 14 months of adjusting everything diet-wise, using yoga for stress reduction, etc, my GI doc suggested trying 10 mg of Amitriptyline. What a difference! I began to have more energy because spasms and erratic motility wasn't wearing me out. I started the 10 mg last October (2012).
Then my husband began to have heart problems so that's resulted in 2 heart procedures. On my last visit to my GI I expressed my frustration at not being able to handle even 'simpler' stressors (like going with him to his Drs appts) without my gut motility getting hyperactive . She gave me permission "in times of stress" to add another 5 mg to my nightly dose. I know that doesn't sound like much but I put it to the test the next week when we went to the medical center where his specialist is (4 hours away), went through pre-op appts and the ablation the next day, and dismissal the next, and recovering for one day in a hotel until traveling home.... and I had no problems-- zero. It was the first time in almost 2 years since my diagnosis that I felt I was gaining some measure of control.
On Thursday of this week I'll drive 4 hours to go to the Kansas Autism Summit and you can bet that starting tomorrow night I'll be taking that extra 5mg and will continue the whole time I'm gone, so that being out of my routine doesn't result in any spasming.
I know taking the meds is risky and everyone has to make their own choices but for now I'm pleased with the results I've been able to get. It wasn't the first course of action but another step toward managing my LC after I'd tried everything else I could possibly control.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
I am currently on 10 mg of Elevil.I am also on the entorcort. I believe the Elevil helps because once I started taking it I was not waking up because of the D any more. I could wake up and then go.My Doctor said today that 10 mg is not going to help with depression or anxiety. I confirmed that with my pharmacist however it may help to bung us up.My anxiety is awful, however I am new at having Colitis and not eating well before I up the dose I want to try eating more.If I do not lose the anxiety by having more food I would allow them to increase my dose. I take mine in the morning as it has the opposite effect on me and wakes me up.This is just my experience, for sure talk to your doctor. I hope you are feeling better soon. : )
Collagenous colitis and lymphocytic colitis March/ 2013
Celiac Disease November/2009
Hi JessesMom, I have had a lot of stress this last year and it definitely wreaks havoc with my MC. I am also working on thyroid and adrenal issues.
I have been shaky anyways but when I get stressed I really start shaking. Rhodiola rosea (make sure it's the Siberian one) seems to help my stress/shakiness/anxiety. http://www.foxnews.com/health/2012/03/0 ... epressant/
I also like L theanine. I think I learned about it from this board. It is otc, inexpensive, like Mandy says kicks in in 45 minutes, does not make you sleepy, non addictive. No side effects.
I've been known to also take 1/4 valium but I try to take that only about once every 6 months and even that will make me sleepy.
Sorry about all your anxiety....I can totally relate as I have Generalized Anxiety Disorder and have had it since my 20's. I was first put on Limbitrol which is Amitriptyline and Librium in one pill. It worked wonders!! I now take them in separate pills. I take 5 mg of Librium every day (very low dosage) and it helps some. I probably need more of it but don't dare as they are addicting. I simply can't get off the drug...have tried but the anxiety comes back big time. I have no ill effects from it at all and it helps me function so I don't intend on ever getting off of it. It's a very old drug (Librium) and very dangerous to just stop taking. I have also tried Paxil and Xanax for anxiety both working great but definitely wouldn't recommend Paxil (antidepressant) for someone with MC. Librium is like Valium but I think it's not so strong as the other benzodiazepams. (sp?) Anyway, it works for me and I tolerate it well with my MC....along with the Amitriptyline 25 mg. Anxiety sucks and can be hard to manage. I've cut my stress level down big time but still have some anxiety. Can't even get on the freeways anymore without shaking. Exercising helps but for me it's a temporary fix....I often still go to bed nervous.
Hope you can find a drug that works for you. I thought giving up the nasty gluten would help with my anxiety/some mild depression at times, but it really hasn't. (Sigh).
Wishing you the best.
BTW...interesting about L-theanine as my cardio doctor wants me on it. But have been scared to try it. What's the dosage on that?
Terri
Diagnosed with Lymphocytic Colitis in July, 2012 then with Celiac in November, 2012.
Jesse
sorry that there is no one med that is guaranteed to work for all -
it can be a bit of a trial and error, and i hope you figure out your solution quickly
Carol -
what a great post. thanks for sharing.
I know taking the meds is risky and everyone has to make their own choices but for now I'm pleased with the results I've been able to get. It wasn't the first course of action but another step toward managing my LC after I'd tried everything else I could possibly control.
here here to this. Minimising symptoms and being well enough to live life is important.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
I've been on generic Lexapro since Dec and I have had no MC from it - zero. I don't even feel like I have MC anymore but I am still careful with what I eat.
Hi everyone. Thank you all so much for your quick responses. I was able to read them after I posted the question. Sorry it took me so long to respond , I feel like I never have time to sit down and collect my thoughts after working all day then coming home to be a housewife/mom +sigh+. Luckily we were able to purchase a new SUV using money left over from tax returns and the money from the car being totaled. This has taken a huge amount of stress off me as you never realize how much you rely on a car until you don't have one.
I've decided to not go for a prescription right now , I have enough trouble remembering to take my currents medicines. And I don't want to risk a new medicine causing more problems for me. I've gotten my symptoms back under control by continuing to take one Entocort every other day, 2 peptos at bed time and my pro-biotic. But I think I will look into purchasing the OTC medicine that a few of you mentioned because I feel like I can't control my anxiety all on my own. And I'm all for trying any natural remedies. I drink either Camomile/Peppermint tea everyday to calm my stomach and help my nausea.
Although I do have one more question...?
Although I've been doing relatively well for the last few weeks and my stools have been formed - there has been a lot of mucus in my stool. I haven't changed my eating habits or medications. And I'm 100% gluten free. The thing that concerns me the most is that today I had a formed stool in the morning but then in the late afternoon I felt the urge to go and when I did it was ONLY mucus, no stool or color what so ever. I called the Dr on call from the GI office I go to. But he called me back and was an absolute a**. He was rude and acted like I was stupid for calling on the weekend for this. He basically told me to take Immodium and call my regular GI on Monday. I was just wondering if this is cause for concern or if its going to be one of those things I have to deal with because I have MC......?
Again thank you all for your prompt responses, I really appreciate it.
A normal bowel movement in the morning, followed by mucus or D later in the day is usually a sign that you are healing, but still in a transition stage. The mucus is a sign that you still have a lot of inflammation that needs to heal.
I'm sorry that the doctor on call was a rude ass. If he's a GI doc, what kind of phone calls did he expect to get on weekends? No one is likely to call a GI doc asking for a weather report.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
JM - just wanted to chime in here and say that the anxiety you're experiencing is very normal for what you just went through. Two things might really help: trying passionflower tincture to help with the anxiety. I've had chronic anxiety since I was a little girl and have been taking this for a couple of weeks to help with insomnia. It works incredibly well for me. Also, see if you can find a somatic experiencing practitioner. This is a form of trauma therapy that should be able to help you resolve your anxiety from the accident very quickly - just a couple of sessions, I believe. I'm doing SE right now for long-term PTSD, and I'm quite impressed with it. Wishing you peace.
Really Tex, that is good news about a sort if solid poop and then mucus and D. I am still on entorcort but that is what is happening to me. I still go often and it's urgent when I do. I have not introduced new foods at all though , except a gluten free, dairy free pancake in the morning , plain of course.
Collagenous colitis and lymphocytic colitis March/ 2013
Celiac Disease November/2009
I have no way of knowing whether you are sensitive to soy, tapioca flour, and /or xanthan gum at this point, but remember that if you are eating Van's Gluten Free Pancakes, they do contain soy, xanthan gum, and tapioca flour, 3 ingredients that cause many of us to react. Fortunately I seem to be able to tolerate xathan gum and tapioca flour, so I use King Arthur Flour Gluten Free Pancake mix, which is free of soy (but does contain xanthan gum and tapoica flour).
Anyway, my point is that if/when we find ourselves stuck in a recovery stage, unable to make further progress, quite often we can get back on track by eliminating processed foods that contain long ingredient lists, especially those that contain ingredients that cause many other members to react.
Often we may be able to tolerate those foods after we have been in remission for a while, but while we are still recovering, they can delay our recovery, and in some cases they can prevent us from being able to reach remission. When I was recovering, I found it necessary to avoid virtually all processed foods, because they all seemed to cause me to react. Now that I have been in remission for years, I can tolerate many of them without any problems.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
