What next?? Seems like progress is non-existant

[DebE13]

I really shouldn't be asking what's next because in my experience something worse comes down the road. I've attempted 19 acupuncture appointments and like going but am questioning if it's helping. I feel just as bad today as when I started at the end of December. D is unchanged, although I wasn't really going there with hopes of an answer- I know I just have to keep at it with limiting my diet. I'm back to a 1-0-0 pattern with 3mg of entocort. Norman still turns a cold shoulder to me. My eyes continue to burn and ache and now my acupuncturist told me I look jaundice. I've heard it from various people for years- I don't notice it much. I was told to stop all supplements I was taking from the acupuncture office and to make an appointment with my GI. She immediately knew I did not want to but giving her credit for being responsible I called for lab tests. It has been six months since my last round (all which show I am in excellent health ) so they sent the order to have my blood drawn and I have to see them on Tuesday. The GI's office was a bit snotty with me and gave a mini lecture that my symptoms have changed and I have to be seen. I can understand that and wasn't going to argue that point- I realize they can't just treat me over the phone but that immediate attitude when I mentioned alternative medicine made me want to reach through the phone line and strangle the person on the other end. I have absolutely no energy and feel crappy. Now that I gave up the digestive enzymes and Tri 40 thyroid supplement I feel even worse. They weren't by any means the total solution to my woes but I noticed some improvements. Now the nausea and dull stomach ache is back. Last week I was able to go five days with eating meat and vegetables only. That actually made me feel worse too and there was no change in the WD. I was hoping that eliminating corn, rice, potatoes, and whole nuts would have made some difference. ( I do know whole nuts are hard on MC but I ate them sparingly). It may not be enough time but I wasn't able to continue eating almost nothing. It also doesn't help that I'm temporarily filling a vacant PT position at work in addition to my regular job duties, have some family issues, and have a big dilemma with my son trying to fund college. It's always something and today I'd like to bury my head in the sand and hide from the world.

I'm confident my labs will be absolutely "normal" (which I know is a good thing) but I almost wish they weren't because I'm at a loss of what to do next.

[dfpowell]

I am rather new to the board, but have been working with diet changes and meds for the past several years. I found when I was in a flare and diet changes were not helping, I needed to go to the full dose of Entocort 9mg, which I only needed to take for several days, and then tapered as symptoms resolved. Everyone responds different, so your low dose may work for you.

[DebE13]

Thanks Donna,

It's hard to tell what does I should be taking because my desire to not be on it at all is so strong. I've been on it since February of 2012 so it's really much longer than I had hoped. At 9mg I still have D but get cramping too. I may very well be one of those people that will have to take it for life because the damage is so severe but I'm not willing to say that for sure.

It's been around a year and a half since I started restricting my diet- GF, SF, DF, EF and have cut out legumes as much as I can but occasionally indulge in a moderate portion but not often. My 3-4 D to WD each day is tolerable for me but now it's creeping to to 5-8x/day with lots of non-D complications which I've complained, whined, and vented about before. If I only had to deal with D alone it would seem manageable. My new issues are incredible tenseness in my neck and pains in my shoulder blade which make it difficult to sit still. I'm always stretching and squirming to find a comfortable position. it must look like i have nervous ticks. Everything else is simply making life to hard to deal with- but there's not much choice in that now is there? Today is a "when it rains, it pours day" for me. I know it will pass, along with the wintery weather that won't seem to leave but I appreciate your comments. It gives me reminders that I have made progress.

[tex]

DebeE,

I'm sorry that the acupuncture wasn't helpful. I have a hunch that all the stress in your life may be trumping all your hard work to treat the disease. For example, the new tenseness and pain in your neck and shoulder blade are probably due to a combination of stress and MC. I know exactly how it makes you feel, because I had that same problem when I was still reacting. I was never able to find a comfortable position, and it kept me from sleeping at night, which just made everything worse the next day.

Tylenol was helpful for me for reducing the neck/back pains/tension/stiffness, but not everyone finds it to be helpful.

FWIW, IMO, allopathic practitioners are doing to have to get over their snotty holier-than-thou attitude about alternative medicine, and learn to work with homeopathic practitioners, if they intend to survive and prosper in the medical arena in the future. Too many patients are beginning to notice that allopathic medicine no longer fits their needs because it only treats symptoms.

Tex

[Gabes-Apg]

maybe this is part of your answer

It's hard to tell what does I should be taking because my desire to not be on it at all is so strong. I've been on it since February of 2012 so it's really much longer than I had hoped. At 9mg I still have D but get cramping too. I may very well be one of those people that will have to take it for life because the damage is so severe but I'm not willing to say that for sure.

medications and acupuncture and diet changes do help, their ability to help is limited by our thoughts, feelings etc.
I know that the MC Dx and the process of having to throw away what we believed about eating for ? 20 years, 30 years is hard.
added to that, there is no one answer and treatment protocol that within ? months will give you your life back. so many of us spend so much time trying to figure out what works for us
IT'S CRAPPY.!!

the healing side of things comes from within us, generated by us. how we think, how we live our days, how we nurture our bodies, acceptance of who we are and the circumstances that are there, embracing the changes needed, accepting the limitations that have become part of our lives, grieve things we have 'lost' or given up.
having realistic expectations on things that we do, not banking a symptom free life on a medication or acupuncture.

[DebE13]

Tex- it's one big shrug from me... I really don know what to do so I will just keep doing the same. I seem to be a magnet for odd situations. I tend to end up smack dab in the middle of things without even trying. I do have a better sense of how things come and go and find I handle situations better than I used to. Everything is not a crisis or the end of the world- often times not very fun to deal with but knowing it will pass brings me comfort. On the other hand, the constant stream of one issue ending and three more starting makes me want to give up. Add MC in the mix and I can be quite unpleasant. It wouldn't be so bad if it were just me but the MC effects my family in a bad way.

Tylenol rarely helps me. I dont take it most the time because it doesn't seem worth it. The heating pad and sleep seem to be my options.

Gabes- I absolutely agree. It's so nice to hear from someone else how crappy this is. Its such an odd feeling to understand how food can be our enemy when others are oblivious to the whole idea. I worry so much about what my family eats and they laugh because I'm the sick one.

I spent a long time grieving and have an acceptance now of what I will never be able to eat again. I didn't think I would ever feel that way and still have my down days. It is hard to accept the other limitations though. I used to run like the energizer bunny. Guess its my time to be a turtle.

[Gabes-Apg]

Deb
IMO - one thing in MC world - things don't have to be so starkly contrasted ie turtle versus energizer bunny...
there is such a wide variety of levels inbetween - it wont always be this way.
(NB -most breeds of dogs sleep 12-16 hours a day... they can be super active when awake and then take the time to nurture their bodies)
right now - I am happy to be frank the pug!

It wont always be crappy! the improvement can be so gradual, we don't realise it is happening. Only when we reflect back over 3 -6 months can we see the improvement.
Life with MC is a change /transition. it is not all negative, and not about perfection "progress not perfection"

[JenniferS]

Hi, Deb,

Sorry to hear you're having such a tough time. I can relate. If you don't mind me asking, why are you on only 3mg of entercort if you are still having diarrhea? I find I have to have 6mg of entercort and 4 pepto a day to maintain (on a meat, potato/rice/mushy veg diet). My GI said there was no problem with that. I don't know why some respond so well to the meds and diet changes, but it is what it is. But then, I haven't tried acupuncture yet, though.

[JenniferS]

Gabes, which we had a "like" button here. Love your focus on progress not perfection. :)

[JFR]

My focus now is to try to find a balance between figuring out what I need to do to get better (diet, stress reduction and the like) and learning how to accept my body and my life exactly as it is right now, regardless of what that might be. For me progress does not mean only physical progress but emotional/spiritual progress as well. Perfect physical health may not be possible. Sometimes improving physical health is not even possible (although with mc improvement is usually quite possible). "Normal" may just be a fantasy but if I work on my emotional/spiritual side along with the physical side then I figure I have all bases covered and whatever happens with my physical body, I'm just fine.

Jean

[DebE13]

Gabes- I think of your words often because it is so true. Finding that emotional balance is so important. The perfection thing gets me every time. I struggle with that everyday but it is who I am- I like everything in its place. I've always been that way since childhood and I will always be that way. The work on my part comes with letting some things just be good enough. Tonight I moved buckets of topsoil in my yard and had use half full buckets and a wagon where before I could tote around full ones with no problem. I work on being satisfied I can even do it at all but in the back of my mind its a big loss for me and hurts. I then thought of the lady up the road confined to a wheelchair and immediately felt bad. She is the most upbeat, cheerful lady who buzzes around the neighborhood. Instead of feeling sorry for herself it's obvious she gets out and focuses on what she CAN do. Maybe I'll have to ask for lessons.

Jen- the entocort never produced a Norman for me at 9mg so I'm hesitant to continue at that dose without results. It also causes cramping which I don't normally have. I've had surprise Norman's and everything in between at 3mg so I know I am able, it just doesn't happen often and sadly for me, I believe Tex is right, the stress is undoing a lot of hard work and effort. I've just been peppered lately with a gamut of issues ranging from family, personal, work.... Every aspect of my life seems to have some sort of complication. Please don't think I'm searching for sympathy because everyone has their own share of problems in their life- I've just come to expect that mine is not the easy road. That's where I think of Gabes- how will I choose to react to it all if its unavoidable? That choice is mine.

I do like the Acupunture and wish I could go more often.

Jean- how true! If I look back to 2011 and the issues with prednisone I had, I should be grinning ear to ear at the progress I've made.

[jgivens]

DebE,
I am so sorry to hear that you are feeling so bad. Seems like when I feel my worst is when I get the "opportunity" to talk to some snotty health practitioner and it just increases my stress. Sounds like the same is going on for you.
I have very little to add except to say that just when I feel I have accepted where I am with MC, something happens that will depress me for days and wish it would all just go away. I keep telling myself that it is just part of the grieving process and if I wait long enough, it passes. Talking about it and writing about it helps me work it out in my mind.

[tex]

The perfection thing gets me every time. I struggle with that everyday but it is who I am- I like everything in its place. I've always been that way since childhood and I will always be that way.

That's another thing that most of us have in common here — pre-MC, we were perfectionists.

While I still allow myself to indulge in that pursuit now and then (just to enjoy the satisfaction that comes from proving that I can still do it), for the most part, I've managed to kick the habit, and I believe that's true of most members who have been dealing with this disease for a number of years.

Acknowledging that we can eschew perfection and still live with ourselves, is a very empowering feeling, IMO. The disease seems to demand it, but rather than viewing it as "caving in" to the demands of the disease, I prefer to think of it as a better way to realign my priorities so that I can accomplish the things that I need to accomplish, in spite of the disease. In a sense, kicking the habit of perfection removes a major limitation that we have been dealing with, so that we can get on with our life. Perhaps this is another silver lining that comes with the cloud that surrounds MC.

Yes, I still like to have everything in it's proper place, but these days, it no longer has to be perfect.

Tex

[Gabes-Apg]

another ex-perfectionist here

Pre MC I was working 80 hours a week, travelling (mostly internationally), camping every 8 weeks.
my life is very very different now!!!! and I can honestly say I adore the life I have now, the inner authentic self qualities that are me are my strength!
it takes time, accepting limitations is not failure, it is success! you are gifting yourself 100% attention, you are listening to your body

I also soon learnt that denial, pushing boundaries had consequences. going with the flow of what my body can do, is way easier and far more enjoyable.
(far easier to go with the flow of the river than try and paddle against it!)

from the book 'just one thing'
Patience may seem like a superficial virtue.. but actually it embodies a deep insight into the nature of things; they're intertwining, messy, imperfectible, and usually not about you.
Patience also contains a wonderful teacher about desire; wish for something, sure, but be at peace when you cant have it. Patience knows you can't make the river flow any faster.


Imperfection
'let a broken cup be a broken cup without adding judgement, resistance, blaming or worry to it'


We live in a strongly shameful society (schooling, culture, family, career, relationships, outcomes of children, being perfectionist, over achievers etc etc)
at first it can feel that MC is a shameful condition, poop, uncontrollable poop, smelly poop, gas, etc etc. One thing I have worked on mentally, I don't feel any shame about the MC. I am transparent to my workplace about my condition, the limitations (minimal travel, restrictions on social events that involve food, location of my desk in relation to good toilet facilities) I didn't do anything wrong to end up with MC.... I am not being punished
it is ok to have some disappointment, or the occasional frustration on a bad day - so long as like the broken cup above there is no judgement, resistance, blaming or worry to a bad day occurring.

my life is one sunrise at a time, if I awake and feel great, I embrace the day, photography, chores, cooking, gardening, socialising.
If I awake and feel a bit blah, I budget out the energies to meet the priorities....
and then if awake and feel like shite, I stay in my jim jams (or have a shower and put a fresh set of jim jams on), curl up under my Baltimore ravens superbowl champions rug and read a book or watch a movie - GUILT FREE!!

[jgivens]

Gabes says well as does Tex, what I have been learning from this illness and from my Mindfulness Meditation class. Sometimes it is better to BE than to DO. And there is no value judgement to be made on either thing. It is sad when I visit my 92-year-old mother and she is a wreck because she has not felt like doing anything all day, has slept in her chair and either read a book or spent the day observing life out her front window of the retirement community she lives in. She feels that she is not "productive" enough and beats herself up for not having the energy to get up and DO all day everyday. At 92!! No wonder I struggle with it--my mother has modeled that behavior well. The best thing I can do for myself and my family is to give up that need to be productive and know that there are many definitions of it. I can contribute to society by sitting in front of my computer or not! There are days when I don't need to contribute because to do so would make me a victim/martyr/an/or resentful. I don't need to do any of that and I certainly don't need to role model that for the next generation!

Give yourself permission to be! Allow yourself the feelings and the room to feel crappy at times (pun intended).