My pattern returned and I think I screwed up.

[carolm]

HI All,
On March 19th I had posted and asked if anyone else had a pattern where every 9 days or they seem to have an overly aggressive bowel and have 5 or so BMs in a relatively short amount of time (a 2-4 hours, roughly). At the time I posted that the consensus was that I was reacting to something I ate and to check my food log. (And I still think that could be the case. I blame soy additives for this).

I had done very well and didn't have this again until last Weds-- and it was particularly aggressive. 8 BM over the course of about 4 hours. I was glad I had been routinely taken stool softeners, because I think it could have been worse. Typically when I know I'm in that pattern I've taken a couple of Zofran for the nausea and 2 Immodium, not because I'm having D at the time but things are usually very gurgly and I have the feeling that D is coming when the formed BM are gone. Usually things calm down within a couple of hours. No doubt the Imodium slows the motility and that may be the key to coping with this.

Weds I decided that I was going to let it run it's course and try a different approach. After 8 BMs the cramping set in so I took a Zofran but no Imodium. I decided that this time I would wait until I got home and take Hyoscyamine that my GI had prescribed. I took 2 of them when I got home, slept some then took one more at bedtime. The next day I felt rough in the morning (more nausea and a cranky gut) and had one trip to the bathroom with some pencil thin BM's. I made it to work in the afternoon but took Zofran and Hyoscyamine again in the evening. Friday came, still not feeling great but went to work and became ill-- lightheadedness on top of the nausea and again the aggressive bowel reactions- 3 BMs in a couple of hours (BMs=little broken pieces). At this point I decided to call my GI and felt I was in a flare because never before had I had something last for 3 days. Now I took 2 Imodium along with my Zofran and in a couple of hours things were finally calming down. My GI told me to get back on the Entocort, going with 9mg for a couple of weeks then call her and we will discuss a taper.
I started that on Friday, yesterday I was much better, today I'm feeling like I may be having side effects from the Entocort- a little groggy, slightly lightheaded, etc.

Today I am second guessing myself. Did I really need the Entocort? And could I have avoided all this by just doing my usual 2 Zofran and 2 Imodium on Weds when the aggressive BMs started? I can tell you that the next time that happens I am definitely going Zofran and Imodium (even though I tend to have C rather than D). If I can cut it off then would it have plagued me for another 2 days?

Does anyone else have anything similar to this?

Carol

[brandy]

Hi Carol,

I saw your post and I really don't have too much to add I just wanted to say I had my "almost get back on Entocort" moment also. I had 1 day of WD (totally stress related...no change in diet). It truly panicked me. (I actually had forgotten how bad the WD is.) I popped pepto like candy pulled out a meditation CD that was still factory sealed and on my book shelf from 10 years ago when I took a meditation class. I did 20 minutes of meditation about every two hours for about two days. Somehow I got through it.

The entocort thing is an extremely tough call to make. Hope you are doing better. Brandy

[carolm]

Thanks Brandy.
The fact that no one responded, although many read it, makes me think that this is not a common thing in LC/MC and I'd better figure out why this is happening to me. In hindsight I guess my plan to 'let it run it's course' and see if the antispasmodics could relieve it illustrates a couple of things. One is that I was WRONG. , secondly that my earlier handling using Immodium to change the pace of the motility was a good move and thirdly, I apparently do not have as much anxiety as I used to because I was calm about trying a different course of management. I wonder if I'd hung in there longer and not started the Entocort if I would have recovered ok. I am feeling good now and am planning on being on Entocort only a couple of weeks. I'm also thinking it may be time to get the MRT testing done. There is probably something I'm missing re: my diet. And it has been a stressful month of April-- that was probably a contributing factor as well. I'll be back in the groove very soon.
Keep up the good work. It's a pleasure to hear from you.

In friendship,
Carol

[Lesley]

Carol,
I just wanted to tell you - hang in there. You were doing well before, you can again.
You seem to be lucky with your doctor. Mine is/are hopeless.

Given the severity of the attack and the speed with which you felt better your doctor was probably right. Don't second guess. It just causes stress. Just let yourself get better.

[raemckee]

Could you try a regular course of imodium? I am hoping that the liquid dosage I'm taking 4 x a day will keep help deliver me to a point where I can start easing off the budesonide. I've started at 1/4 tsp but GI said I should increase it by 1/4 tsps. up to 1 tsp. 4 x a day until my stool becomes norman but before I become C.

[brandy]

Hi Carol,

It sounds like you are doing well and have a plan in place so you can move forward. Keep us posted on how things go. I'm finding my gut is more "sensitive" since getting off of Entocort, i.e. on Entocourt I could have 4 GF cookies with no problems but off of Entocort I get extreme mushiness with 4 GF cookies. Interestingly I also trend towards constipation since getting off of Entocort, saw you post @ prunes and have some of them daily. Still had constipation issues so I'm adding a 1/2, then a whole then 1-1/2 magnesium citrates at night. I can probably go up to 2 per day but one thing I've learned is to make baby steps in changing supplement/medication dosages.

Anyways, keep us posted and wish you the best! Brandy

[carolm]

Thank you, Ladies. I appreciate your comments and support. Lesley, you are right, I need to look forward and it's probably too late for me to second guess the move, but I am definitely planning on getting off of the Entocort ASAP. Rae, You've given me something to think about. I had not considered a daily dose of Immodium, although I have heard Polly and others say that often the bowel peristalsis and motility must be retrained and Immodium helps with that. I tend toward C but when I have to use Immodium to slow down aggressive contractions, I just continue to use my stool softeners and they don't seem to be at cross purposes. Brandy, I was taking Phillips Magnesium tablets but switched to the Phillips Ducosate sodium and seem to get better more predictable results. Two every night.

So the decision I've made is that it's time for me to pursue MRT testing I think. I checked with Polly (bless her) and she said she felt histamine reactions can definitely cause overly aggressive contractions, especially in an already damaged gut. I had planned on getting it sooner or later but I'm thinking now is best. There must be more to my picture and MRT will give me a lot more information to act on. Reading the MRT posts on this site, it sounds like Mary Beth, Gloria, Kari, Polly and others felt they made significant progress once they had their MRT results. I definitely doing it.

Thanks again to all of you,
Carol

[Sheila]

I didn't see your March 19th post and my experience is quite different from yours in several respects. I take 1 entocort a day because more than that causes C and discomfort. I don't have D but do have multiple BMs, mostly normans, in the morning usually starting between 5:30 a.m. and 7:30 a.m. There can be as many as 5-6 or as few as 2-3. This has been unvarying since I started taking entocort a year ago. I take the entocort after breakfast and the BMs stop.

I also get occasional gas and gurgling, usually from dairy that I should not have consumed. I did discover that I was contaminating myself with soy contained in cranberry capsules and CoQ10 gels. I had a flare that was probably caused by those and the gluten in Caltrate. I stopped those, got off Celebrex, began a very strict diet and the pattern of multiple early morning BMs continues. There is usually no discomfort involved, just lots of visits to the reading room.

I can live with this. I should probably be proactive and elminate foods and try different diets but I just don't want to do it.
If I felt really ill, I'd be forced to do something and I can understand why you need to get to the bottom of what is causing your "pattern".
Sheila W

[carolm]

Hi Sheila,
I could also live with 1 Entocort per day if it comes down to that. It sounds like to me you did a good job finding hidden soy and gluten in your vitamins and supplements. I can tell you that my motivation is in direct proportion to the amount of nausea, cramping, and life-limiting symptoms I have. If you are managing this well without major diet or life changes, then my hat's off to you. Glad you found a system so quickly that works for you. I hope I'm right behind you.

take care,
Carol

[Sheila]

I am grateful that one entocort works so well for me. Very occasionally I will have to take 2 and that happens when I have accidentally eaten gluten. I have not intentionally eaten any gluten in over a year and I hated having to give up my favorite foods. I learned I had to give up all soy after intentionally eating tofutti ice cream and thinking I could get away with it. A massive migraine plus nausea, pain etc put an end to that little experiment. These days I do get gas and gurgling and suspect sugar from the delicious brownies that I eat every day, a reward for eating a very boring meal. I don't want to think about giving them up so I'm ignoring the gurgling.

My diet is very boring and very repetitive, something most of us have to get used to. I tried to add bananas and found that was a surprising disaster. We learn to be extra careful adding anything new because of the fear of WD. Because I'm retired I don't have to be concerned about eating at work, gas or gurgling while surrounded by coworkers, or a convenient bathroom within sprinting distance. When my DH passed away my pantry got even smaller because I didn't have to cook a big meal for him. My path to normans has been easier than a lot of others and I'm really grateful for that. At this point, I don't even want to think about stopping entocort and I suppose that is cowardly. When things are going along pretty well, why rock the boat and end up really sick again. I'm sure you will figure out your pattern eventually and please let us know what you found out. Who knows, any one of us could find ourselves in a similar situation down the road. This disease is always changing, unfortunately.
Sheila W

[brandy]

Hi Sheila and Carol,

I still get random gurgling here and there kind of from almost everything. Twice I"ve had the nausea, dry vomiting (nothing comes up only perhaps some liquid) coupled with a 1-3 day migraine type headache. I'm not even sure if it is a gluten or soy reaction but it is definitely severe enough that I'm a lot more careful of what I eat. Prior to this disease I hadn't had a headache in 30 years.

Carol, thanks for the Phillips tablets info.

Brandy

[carolm]

Brandy, although I get better results with the Ducosate sodium, the Phillips tablets have many dyes which are not good for us. So I'll be on the hunt to find one without all the dyes and inactive ingredients. Hopefully someday I'll be able to eat enough fiber again that I can reduce them.
Why is it necessary to have so many dyes? Do we care what color our meds are?

Carol