elusive remission & questions re: stress

[seeljanerun]

So this is a combined musing/rant with questions.

Has anyone been on both uceris, 9mg, for 6 months, and now lialda (1 wk so far), and not experienced remission even on a very restricted diet?

I feel like I often answer this question for myself, but I just want to hear other people's perspectives:

how many people feel that stress is the number one factor in their symptoms?

I have had a number of things in my life happen in the past couple of years (and prior): eating disorder, moving, marriage, loss of mother, etc. I am naturally an anxious person and have also entered a second degree program to become an RD since the fall (I hope to help others with digestive issues/chronic health conditions in a much more open and understanding way than many RDs - relying on current science & not dogma), which I am enjoying but is stressful. Other stresses include commuting 2 hours each way and lots of extracurriculars to build up my resume for a competitive internship application process.

I also enjoy running and have been trying to add carbohydrates back into my diet to support this, as I had HPA axis dysregulation (adrenal burn out) from exercising too much and, I believe, not eating enough carbohydrate to sustain it was a contributing factor (also thyroid was downregulated). However, I am now having more body pain and I am still having diarrhea, although number of episodes is controlled, on 9mg uceris and lialda (have only been on lialda for 1 wk). I know the exercise is a "stress" but it is one of the few activities that brings me joy, even if I have to know where every bathroom is on my route...

I don't really know what I am asking here, haha. I feel like my intuition is telling me I need to make more time for deep breathing, meditiation, etc., cut back on some of the activities, and stop running so much to just accept that right now my body can only handle cooked winter squash as a carb source... but I just love running. Again, perhaps I have answered my own question

Does anyone feel like they have to be more gentle, place more limitations on themselves than those around them? not just with food, but with life activities? I think this is the most frustrating/sticking point for me...I don't even mind being restrictive with the food anymore, but feeling like I have to not do certain things I love or not be as high-achieving/live up to my full potential really gets me somehow...

Thanks if you took the time to read this :)

[Vanessa]

I too was a marathon runner and had to give up my long distance running. The problem, as I'm sure you are aware, is that running (away from a bear or for training) raises the cortisol level and your body doesn't know the difference. It was tough for me too. Now I'm happy to do a 3 mile jog, get outside & enjoy nature. Now I can do one 6 miler every two weeks.... IF I'm feeling up to it. Give yourself a break, be gentle with yourself. You don't want to burn out you adrenals so badly that your body has no reserve for healing. It is extremely hard mentally but you can do it. I'm not trying to scare you but you might not have a choice at this juncture. You have A LOT going on. Be good to yourself and take the pressure off....you don't need it. Breathe and heal. A common worry for athletes ( I went through this many times) is that they will lose all of their fitness if they take an extended break. Not true. I had no choice and I found switching up my routine when I was well enough made me stronger than just plugging away long miles on the roads. I did 20 minutes of HIIT training and concentrated more on weight lifting with a little mixed in cardio to keep the blood pumping and the mind going. I'm more fit now than I was as a marathoner (I'm sure 90% of that is the diet change) Hope this helps...I have definitely been in your shoes. Oh... and there's a reason they have the term "the runner's trots"

[seeljanerun]

Vanessa,

Thanks for your response - it's what I needed to hear <3.

I have always been attracted to extremes, and with running it is no different. Last summer, I stopped exercising completely beyond walking for 2 months to heal from the adrenal burn out, but as soon as I started running again it gradually became more and more. I love the long races too :) I even registered for an ultra.. (thank god I didn't do it haha).

I used to do crossfit and I know that is not what my body needs right now either, but I know you are right in terms of weight lifting, mixing it up - I feel stronger and more well rounded when I lift and run less than when I am running high mileage.

Now I just have to sit on myself to get myself to stop

I think part of the problem is that, despite battling fatigue, I am still very motivated and young and the medicine has made me even more functional, so unlike probably a lot of people on this board, I am actually able to exercise quite a bit without severe repercussions...but clearly, it is a bad move on my part to wait until something worse happens to change my behaviors that are likely contributing to my inability to achieve remission..I'm sure adrenal burnout is again on the horizon.

Do you have any strategies that helped you make the mental transition to exercising less/less intensely?

[Vanessa]

My strategy was not having a choice.....it got to the point that the payoff did not outweigh the misery, either from extreme fatigue to not enjoying my run because of pooping my shorts or having a stomach ache the entire time. I went through an identity crisis when I had to leave the races behind. My love affair was over and it was like a death to me. It will take time to get to the acceptance stage but when you feel better it becomes a lot easier. I am still not out of the woods. My hormonal connection to this disease is still something I don't think I'll figure out. I just do the best I can and learn that hey maybe I won't be able to exercise today or when I had planned. eegh thats ok...Like Gabes says some days are diamonds some stone. But OH those diamond days with a trouble free run...pure joy. My love came back to me just in a different way this time.This disease forces you to take it one minute at a time if necessary. I do a lot of breath work and meditation before bed. I don't go a day without it. I will get made fun of for this but hey you guys are my family. I have this device that Deepok Chopra sells called the dream weaver. It uses sound and light technology to change your brain waves. Check it out on the web. It is an mp3 type device that has glasses and ear buds plugged in with like a hundred some programs on it. I put it on before bed and wake up with the cords choking me. It takes some getting used to. Finding a program that you like plus the lights stimulate your eye muscles in a different way. Well worth the money IMO. I also do a lot of energy work on my own and with a healer. It is very beneficial for me to have techniques to go to when I have a particularly bad day. Exercising your brain is important too! On a side note, if I really trusted someone and they told me to eat three white dog turds a day to get full remission. Guess who would be first in line........(as I'm looking around the room)

[UkuleleLady]

I stiill can't break the 3 mile mark, and I'm ok with that.

Something has got to give here, because at 6 mos of budesonide and diet restriction, I feel you should be doing better. That is not to say you should be hard on yourself (don't follow a bad thought with a bad thought) but all over, be kinder and gentler with yourself.

There will (or will not) be a time for a rigorous fitness program.

The commute sounds extremely stressful, and I understand the competitive nature of grad school, internships, etc. Try to approach it in a way that isn't competitive, when you find an opportunity that speaks to you, apply and then let go of the outcome.

I think you would benefit from slowing down, mindfulness, letting go of a lot. What is important right now? Ask yourself that. It takes time to recover from this. I learned patience from this disease. Going in, I was always on the go, meeting goals, achieving a lot but thinking I was in control. This disease taught me humility and patience. Very Little is under my control. I've made peace with that and accepted things aren't perfect. That was when I had a healing shift.

[tex]

Jane,

Vanessa and Nancy are right on target of course. Our body only has a finite amount of energy available. Healing our intestines from the damage done by the inflammation requires much more energy than almost everyone realizes (especially including most GI specialists). If we burn up 90 % of our energy every day on athletic pursuits, we will never heal. It's that simple.

One of the additional problems is the typical athlete's diet. Ever wonder why so many of the members here were extremely healthy athletes before falling victim to MC? It's the combination of the artificially-created stress and the carbs. A high-protein diet is required to heal intestinal damage caused by inflammation (and as we all know, as far as our body is concerned,stress is equivalent to inflammation, for all practical purposes). So what do athletes do? They continually maintain a high (physical) stress level (typically with increasingly-higher goals than they are actually capable of), and then they try to fuel their body on a high-carb diet that is great for supplying energy, but very poor for healing internal damage. And yet they realize that they are creating muscle damage every time they go out because they continue to try to push themselves beyond their limits.

It isn't simply muscles used in running that become damaged. Look up what happens to the intestines of runners who push themselves beyond their limits. Ischemic colitis is a much more common problem than is usually recognized, and ischemic colitis is a very serious problem. The body tends to restrict blood flow to the intestines during intense running episodes, and this of course precludes any healing possibilities until the condition is alleviated, which can take many hours or days. If someone runs every day, how can they heal?

It simply won't work in the long run, at least not for many people. The body slowly falls behind on it's ability to heal itself because it simply doesn't have the protein and the energy available to continue to maintain and repair itself as fast as the damage is occurring. So it slowly falls behind until . . . one day MC happens. And of course that magnifies the problem, so if the athlete doesn't shift down at least a gear or 2 at that point, then their odds of a satisfactory recovery are rather bleak, IMO.

At least that's my take on why so many extremely health-conscious, hard-working athletes (especially runners — intense running is especially hard on the intestines) end up with MC, and then have such a tough time getting their life back.

Tex

[Gabes-Apg]

Jane,
Stress, adrenalin, cortisol has been and still is one of my major triggers...

The combo this week of starting new job and flooding natural disaster event, my near perfect digestion is totally haywire...

There are some where a colonscopy confirms remission, then shortly after, a stress event, death or major illness in family can cause major major flare.

There are some discussions in the 'methylation circles' that excess adrenalin/cortisol does impact absorption of some nutrients and this affects the methylation cycle. Thus far, there is not enough research to be able to provide you with a way to prevent or minimise the reaction you are having.
If you want to try, having extra molybdenum, Vit E, Vit C, magnesium will help clear excess toxins and hopefully minimise the reaction.

I have been struggling to follow my supplement protocol with the flooding and post flooding chaos... Which is probably why my digestion has faltered.

The other aspect, is that long periods of exercise increases stomach acid. Which would make BM loose etc. there are powder drinks potassium/magnesium based that help with this. You may need to sip these while running etc.

Hope this helps .

[seeljanerun]

Thank you everyone for the feedback, thoughts, strategies & encouragement :)

I find that I am my own worst enemy at times - I get in the way of my own recovery more often than anything else.

Ironically, a lot of this information I already know to a certain extent but I seem to have selective hearing to my own inner wisdom...

I'm feeling more motivated now to work on cutting back on the stress and the exercise, so thank you all! I know that running all on its own causes impaired digestion and increased gut permeability...so why I have persisted for so long is only due to my dog-headedness and the fact that it is tied up in my identity/self-perceptions in a lot of ways..

I'm sure I am not alone in this, but I have a tendency to put my health on the back burner so to speak when life gets busy... but time and time again I have learned that it is at these times when it is most critical to pay attention and take care of one's self.