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Is it common to have extreme relapses in symptoms while healing?
I've been taking entocort since February and have tapered myself to 3mg/day which leaves me with normans sometimes and a range of loose to D BMs 2-3x a day. I am satified with that in regards to the D but for over a week now my previous issues with my eyes burning/pain and skin issues have returned along with extreme fatigue. It has never gone away but wasn't as severe as it is now and I now also have knee joint aches and a tight feeling in my leg muscles which is very bothersome. Is this normal? I've been tempted several times to just eat some comfort fooods since I'm already feeling crappy (but didn't).
Tex- I know you've mentioned several times about thyroid issues so I am hesistant to keep whining when I haven't done anything- yet. I see my GI's nurse next month and hopefully if I beg and mind my manners, she'll help me along with the more in-depth blood test. It's so frustrating especially now that the weather is getting more outdoor friendly. I feel that food issues can't possibly be causing me this degree of fatigue, although I've been very wrong so many times in the past. It seems like I only have a couple hours each day of productive energy and after that I'm ready for a nap. I'm used to sun-up to sun-down activity and I simply don't have it in me right now. By the time I finish running errands or doing housework, I'm spent for the day and am frustrated I don't have the get up and go to enjoy my hobbies.
Work has been horribly stressful for me but it isn't something I ancticipate changing. I know I have to deal with it but have felt the added strain on my body.
I'm sticking with the diet and hoping I find thyroid answers soon. It's hard to tell if I'm healing or not because I've been at a standstill for a bit over a month with the entocort and diet. I could be much worse so I figure I need to remain patient.
It sounds as though your leaky gut is getting worse, because that's the main source of the knee pain and fatigue, and probably the other symptoms as well. Stress and/or mast cells can have a significant effect on the thyroid, also.
It could be something in your diet, but since you are more prone to mast cell issues than some of us, I would guess that the extra stress may be at least partially responsible for the increased intestinal permeability.
To get things under control, you may have to either increase your Entocort dosage, or be more aggressive in treating the stress/mast cell issues, (unless you can spot something in your diet that may be causing the problem).
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.
That's the frustrating part about the diet- there isn't anything that is noticably the problem. I'm pretty much on a diet of rice, potatoes, meat, olive oil, chex cereal, almond milk- regular & chocolate, coconut milk, decaf coffe, almonds, pecans, and corn tortilla chips. I eat limited fruits & veggies (well cooked & no skins). I have also have limited consumption of tomatoes, dates, and natural PB taken with histame. The high histamine foods add a little variety so I was hoping they'd work in the diet if I used histame, although each time I eat items from that catogory I wonder if I'm making the right choice.
Does the entocort help with the non-D problems too? I thought it was just for the D (but I know little about drug) except that it saved me from the continued use of prednisone. As I've told you before, I did a rather quick taper but thought the results were ok. Maybe that's my determination of controlling the MC by diet alone taken too quickly. On my list of complaints the D is at the bottom. I can tell there's still a lot of inflammation because the hemorrhoids are still there internally and I can feel the pressure.
I'm fortunate to have a good RX drug plan. Do you think I should up it to 6mg/day until I have my appt next month? I already have my list of issues to discuss in hopes of convincing them to test my thyroid again but the mast cell issue isn't worth bringing up to them- it will only make me angry.
Well, Entocort has less than an 20% systemic effect, but still, it should help with the joint pain to some extent. Corticosteroids are sometimes prescribed for back pain, and similar issues. It should help with the 'roids, for sure, and it will probably help with the fatigue, also.
Your diet sounds pretty safe, unless you're sensitive to almonds, peanuts, or chocolate.
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.
If you've tapered to 3 mg Entocort after two months, I'd say you've tapered too quickly. You shouldn't be having loose to D BMs 2-3x a day when your Entocort dosage is the correct amount. If I were you, I'd increase the dosage back to where you are having Normans and sometimes softer stools. That will allow you to better determine which foods are causing you problems. Maintaining a food diary can be very helpful in determining which foods are causing reactions.
Deb wrote:I'm pretty much on a diet of rice, potatoes, meat, olive oil, chex cereal, almond milk- regular & chocolate, coconut milk, decaf coffe, almonds, pecans, and corn tortilla chips. I eat limited fruits & veggies (well cooked & no skins). I have also have limited consumption of tomatoes, dates, and natural PB taken with histame. The high histamine foods add a little variety so I was hoping they'd work in the diet if I used histame, although each time I eat items from that catogory I wonder if I'm making the right choice.
I couldn't understand why I wasn't getting Normans quite a while back. Once I stopped eating tomatoes and chocolate, Norman appeared. I had always drawn the line at them both, but I knew if I wanted Norman as a regular visitor, they had to go.
We're always sticking our neck out when we list what we eat because for any food we list, there will be someone on the board who will write that it bothers them. I can't remember if you've found you're intolerant to legumes. Some people with a soy intolerance find that they're intolerant to all legumes as well. Peanut butter is a legume, so it may be causing problems for you. It was the first legume that I noticed caused me reactions. Then I noticed green beans did, too, so I eventually gave up all legumes. Many people don't realize that peanuts and green beans are legumes. The nuts are very rough on an inflammed gut. Perhaps you can try nut butters instead, if you're not already. I hope you can figure this out. It can be very frustrating.
Gloria
You never know what you can do until you have to do it.
Thanks again for the suggestions. I'll try increasing the entorcort to 6mg/day and see what happens.
I'm confused about identifying problems foods while on entorcort. Can you or can't you? Or will it just make it a bit harder to find all of them until I'm off?
I don't know if I have problems with legumes or not. Tex pointed that out to me a while ago so I removed them from my diet. Recently, I started eating PB again only a few times a week along with eating peas once in a while. I can't tell either way if it helps. I also recall numerous comments about the nuts but was hoping that it didn't apply to me - I don't have any discomfort after eating them and I didn't see a pattern with the D so I figured they were ok. Maybe I should rethink that one.
1) I'd be less suspicious of nuts than of the peanut butter. Many of us on PP survive mainly on nuts - almonds, coconut, walnuts, pecans, hazelnuts (which we consume not just as nuts but as flours, oils, and butters) - along with meat and well-cooked veggies. Almond butter makes a good substitute for peanut butter and is much less likely to cause trouble.
2) My thyroid improved significantly when I stopped eating iodized salt (which contains sugar) and switched to sea salt, along with 150 mcg of iodine from kelp (available as drops from your local health food store - one drop per day is all you need). If you switch to sea salt, you do have to supplement the iodine because our bodies need it and we don't manufacture it ourselves. But my TSH levels had been over 3 - generally hovering around 3.5 - for years, and they dropped to 2.8 when I did that.
It is good to hear from you. Keep us updated on how your doctor visit goes.
To respond to some of your questions.
Yes, I had extreme relapses during healing. (Not WD) but in many ways I felt like I was getting worse before I got better. Typically the relapses seemed not to be tied out to anything. Example...Dec and Jan fatigue was better, first week of Feb slammed with fatigue again.
Eyes---mine are way better now that I'm fairly far along in healing. 2011 was a killer year for my eyes w/ redness and dryness. I think as your gut better you should see some improvement with your eyes.
Joint pain--got significantly better with Entocort use. If you kick back up to 2 for a little while I think you'll see a reduction of pain here. Don't expect it to be immediate but pain should go down over a several week period...maybe less maybe more.
Fatigue--it will get better with time. Mine was rough but I'm now back up to about 80% energy level which is a huge improvement over last year. If you think you can tolerate a supplement a B complex with folic acid might help.
Identifying problem foods with entocort---I could only identify one problem food while on Entocort. I didn't even understand the concept or what everyone was talking about. It was only after taking my last entocort and having 2 week time period elapse that I could identify grains as a problem for me so I've eliminated them for now and am eating sweet potatoes and white potatoes. I'm planning on retesting grains in about 6 months.
Comments on your diet----I'm with Tex on this and think your diet is pretty stellar for moving foward. Plus I agree with Gloria that it takes some guts to post your diet. At some point along the way I swapped out PB with almond butter. I never saw any issues with PB but just from the comments on this forum that PB comes from a legume which is closer to soy. To be safe I thought well I'll swap out PB with almond butter. Raw nuts--even now when I eat them I get pencil poop. If I don't eat nuts I have Normans. I restest nuts about every 8 weeks. Consider perhaps stepping away from nuts for say 6-8 weeks. If you eliminate them for a little while it is not a forever thing....you can add them back when you are a little further along in healing. Again overall I think your diet is stellar for going forward.
General comments on fatigue....in many ways fatigue was the toughest thing for me to deal with last year. It was much, much worse than the WD. I think my energy level now is about 80% of what it was pre CC but improving every week. Last week I went salsa dancing two nights after work, worked out in the gym one night after work and went out to a play with friends one night. Never could have done any of this in 2011 so I'm definitely getting the spring in my step back.
Deanna- I think I'll put the PB aside again and the whole nuts too. I'm waiting for my doc appt to bring up thyroid testing. Hopefully, I find more answers then.
Brandy- Reading your comments made me feel a lot better today. I was wondering the timeframe for testing foods. I'm incredibly impatient so even a week seems long to give up foods on an already limited diet. Although, I do plan to take your advise. I'm also trying the 6mg dose for now to see what happens. The fatigue is absolutely crazy but at least I can keep it in my mind that it is also temporary as long as I continue to make the effort.
I thank God for everyone here- I'd be lost without all of you.
It sounds as though your leaky gut is getting worse, because that's the main source of the knee pain and fatigue, and probably the other symptoms as well. Stress and/or mast cells can have a significant effect on the thyroid, also.
It could be something in your diet, but since you are more prone to mast cell issues than some of us, I would guess that the extra stress may be at least partially responsible for the increased intestinal permeability.
To get things under control, you may have to either increase your Entocort dosage, or be more aggressive in treating the stress/mast cell issues, (unless you can spot something in your diet that may be causing the problem).
Tex
This is a meaningful, light bulb lighting moment for me. I've not understood why every so often and sometimes for days my knees hurt so bad I have trouble getting up and down stairs and the knee that hurts switches. I just think that's so bizarre. Leaky gut and stress!! Wholly Cow...
You're most welcome. Remember that a lot of this is not accepted by most gastroenterologists, (yet), but I'm convinced that eventually, they will see the light, as researchers get around to proving what we've known for years.
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.
Visit the Microscopic Colitis Foundation Website
- I don't have any discomfort after eating them and I didn't see a pattern with the D so I figured they were ok. Maybe I should rethink that one.
