Discouraged..

[ErinD]

So, i have been on Entocort for 2 1/2 weeks now and for the past two weeks i had been feeling great! Solid BM's, normal frequency, no more abdominal pain or nausea and it was wonderful to feel i may FINALLY be getting my old life back and i could start enjoying my friends and family again.

Well, thursday night i woke up in the middle of the night with my old MC attack. I figured it may just be a fluke thing but i didn't feel right on Friday either. Saturday morning i woke up feeling better but had to work for a big project we were implementing. It was only supposed to be for a couple of hours and of course lasted all day. They ordered out for lunch to a place where i could not order anything (Pizza Place) and i didn't get to eat until i got home at 4:30. I ate a small meal and then another small meal at my regular dinner time. My husband and i went grocery shopping and about half way through i got bad cramps and had to rush to the bathroom with the dreaded D. I didn't go again last night but still didn't feel 'right'. Slept ok and woke up this morning feeling ok. Had a somewhat normal BM (soft but not D). We had breakfast and about an hour after cramps again and D. I haven't gone again but i still don't feel 'right'.

I of course am thinking the worst in that the Entocort is not working and i will be back to square one again, but Hubby seems to think that it is more due to my stressful week at work (we worked 12 hour days all week as well as saturday), as well as a bad fight between my ex-husband over our daughter and not eating right yesterday. He felt it was too sudden for it to be the Entocort not working...

I see the doctor again on 2/11, but i am feeling discouraged about this. Has anyone else gone through this? I am currently taking 9mg of Entocort daily.

[kate_ce1995]

Don't get too discouraged. This kind of thing happens. Especially early in the path to wellness as it takes time for your system to go back to normal.

Stress is certainly a trigger. And it's possible that you had a bit of a stomach bug. I remember in the early stages freaking out when I got a bug, only to later find out it wasn't the MC but other people at work or around town were also suffering with some stomach ailment.

Hang in there, eat simply today, but make sure you eat...lack of food can cause D too. And hopefully the old gut will settle down.

Katy

[annie oakley]

Hi, Kate is right, it happens. I have been off meds for about 3.5 yrs and I still have an occassional flare. None of us are perfect with our diets and even weaken and eat something we shouldn't Besides it's early on for you isn't it? Don't give up hope. I thought I'd never get off Asacol and it took me 4 tries and finally it happened, We are here for you. Love Oma

[CAMary]

Erin-

Don't get discouraged! This whole thing is "two steps forward, one step back" type of thing. The positive to focus on is that you are seeing positive results with Entocort - maybe not totally consistent, but you are seeing some benefit! More worrisome, I should think, would have been no response at all.

My stomach has become forever more sensitive/temperamental. Stress is *definitely* a factor - no doubt! About a month ago I had a full-blown "episode", but became literally "giddy" when my husband said his stomach was upset and we were both calling first dibs for the toilet! Never was I *so* happy to hear it - which meant it was either food-related or a virus - since we were both affected...

I have found an empty stomach sometimes triggers D. I've become much more of a "grazer", which works well. I also carry safe snacks in my car, since incidences such as the pizza take-out order leave those of us w/gluten issues up a creek w/o a paddle!!

Hang in there!

Mary

[tex]

Hi Erin,

I can only agree with what the others have written. Remember that having MC doesn't keep us from catching the same viruses, and having the same problems with stress, that everyone else has - it just adds more triggers, and makes our bodies more sensitive.

This is just my opinion, (I'll bet many others will agree with me, though), but I believe that MC, (or possibly the genes that trigger it), sometimes cause those other" issues", whether they be a virus, stress, or whatever, to trigger a typical MC reaction, so that it's difficult to tell exactly what is causing it. (I can remember many occasions during my recovery when that was the case. Also, I believe that many of us become much more sensitive to stress, than we were prior to the onset of MC. (The disease itself can be so debilitating, that it actually alters the way we perceive other issues, and the way we react to them).

Also, some of us either have more intestinal damage, or are more sensitive than others, and we have different genes, so that it just takes longer for some of us for the gut to heal. As the healing progresses, the occasional reactions will become shorter, and less severe. There are few things more stressful than a disagreement with an ex, and with the long work hours, and eating disruptions on top of that, it's not at all surprising that you might have a reaction.

As the others have written, in answer to your last question - yep, we've all been through that, regardless of our treatment plan. Unfortunately, the road to recovery is not paved with gold, and it has a few potholes along the way. Hopefully, you'll be back on track soon.

Tex

[barbaranoela]

Hi Erin-----adding to what the others have said--its like a see=saw=

Dont get discouraged===and YES--STRESS can really do a number on ones *inners* --STRESS can work in a flash---

I think I can say--we have all been there --

Try to relax----and remember we are aways here to pick you UP when U feel DOWN!!!

Luve Barbara

[sunny]

Hi Erin...no experience with this yet, but wanted to say Hi and offer my sympathy and some kind words. I am very impressed with the impact that stress has on my body...even good stress...like the grands come over for football with their parents and then we eat and play cards....good stress....but impactful. Then there is the stress you talked about and BINGO!! even stronger impact and resulting effect on our bodies. Be kind to yourself today and do something fun and relaxing!!
sunny

[MaggieRedwings]

HI Erin,

Everything already posted really tells the story. A seesaw explanation by Barbara is really right on. It will 8 years for me in April and sometimes it seems like I am back at ground zero. I am now doing 3 mg of Entocort every other day and I still get D when there is stress or something sneaks into the diet when it shouldn't. Also, any intestinal bug with give you a flare far worse than the "normal" person (one without MC/CC/LC)

Hang in there and you will find Entocort is the best thing since gluten free sliced bread. LOL

Love, Maggie

[ErinD]

It is so nice to have this board to talk to. My husband has been awesome with his support but sometimes it is also good to hear it from others who have been through it or are currently going through the same thing you are.

I'm trying to eat better today and get back on track to see if that helps. I am feeling better as the day is going on which is good.

Thank you for your kind words today it has helped. I find this Entocort kind of plays with my emotions which is never easy!

[mle_ii]

Stress can indeed cause this disease to take a short path off the beaten trail of wellness every once in a while.

I think that if I'm right about bacteria being the main cause for some here that stress has a role here. A few things that stress does to increase the problems in this case has to do with the following. Stress causes more production of cortisol (normally a good thing) but in our cases this increase in cortisol can cause a lowered immune response which can increase the ability of bacteria (or other bad things) to take hold while the immune system is down for the count. Stress also slows down the upper GI and limits it's bacteria cleansing waves, as well as slowing down the digestion of food giving this bacteria more food for growth, along the same lines it also increases the speed at which "stuff" moves out of the lower GI. Finally, there's something about cortisol that also increases the number of bacteria (might be related to the above) and I think this might be related to why cortisol is normally increased under stress and why it's normally a good thing for humans. This has to do with cortisols ability to bring more sugar into the blood stream under times of stress which helped to give us energy to run away from that T-Rex who thinks we are his latest snack. :) I think it also gives energy to the bacteria.

One thing I also want to say is even though I bring up bacteria a lot I don't nessesarily think that it's everyone elses cause/problem here. Mainly I see a lot of tie in with what bothers folks here, what symptoms occur, etc and has me seeing bacteria as a cause.

Thanks,
Mike

[tex]

Mike,

Good points. That may be the reason why budesonide doesn't work for everyone, and/or why it doesn't work all the time for certain individuals, (since it fights inflammation by suppressing the immune system).

I'm guessing that it's likely that some of us have a combination of two or more factors, (to varying degrees), which can cause a perpetuation of conditions favorable to MC, (i. e., an autoimmune reaction to gluten, plus SBBO, plus candida, for example), and this is why a single type of treatment by itself, isn't always effective with the most stubborn cases. IOW, this may be why some of us require both diet restrictions and meds, in order to get relief. Perhaps, as Dr. Lewey suggests, some day there may be a probiotic product available that supports and enhances both types of treatment, or possibly even replaces both of them.

Tex

[harvest_table]

I see the doctor again on 2/11, but i am feeling discouraged about this. Has anyone else gone through this? I am currently taking 9mg of Entocort daily.

Hi Erin,

I took Entocort for 6 months after a 3 month round of Pred. Also started a GF diet at the same time and now years later doing well with diet alone.

I remember having some ups and downs while taking Entocort also but as others have said, try to be patient and not stress. Hope your doing better.

Love,
Joanna