Follow me on my healing journey

[Kiddo]

Hello everyone,

yes I'm still here, working on my recovery.
It has been a while since my last post. Since then a lot and at the same time not so much has happened.
In March my new GI discovered that my Elastase levels were down at 5 (if you're healthy it should be above 200). I wasn't really that much upset about his findings. My elastase levels have been low for many years. Still it is somehow curious to me because one would think that with an Elastase level this low I would also have other symptoms. But if I take good care of my diet (no gluten, no lactose, low histamine, low sugar) my bowel movements are fine, no gas, no stomach pain, no eczema, no heartburn. Interestingly I found some studies about this exact topic that confirm: if you suffer from some sort of IBD, coelic disease etc. your elastase levels can be low! You might want to read it yourself: https://www.mdpi.com/2077-0383/8/7/916/htm
(Btw encyme replacement therapy didn't show any positive effect.)
Also the new GI found out that I have very low vitamine D levels. So I'm supplementing vitamine D since a few months now.
And he also asked his colleague, who is an expert in the field of coelic disease, to check thoroughly if I really don't have coelic disease. Which is confirmed now, really no coelic disease.
This GI helped me a bit further on my way. Still I feel there is a lot more I can do. So in November I have an appointment with another GI in another city, and he is an actual expert in the field of microscopic colitis.
I'm doing OK with my diet. Still I'm not consistent and need to be more strict about it. If I'm taking good care of my diet I have very good days. Interestingly when I start to eat food again that usually triggers my symptoms, my body lets me know with full force (sometimes delayed for a few days, sometime immediately). I would have expected that I might get a bit of a grace period so to say. Like I have been on the diet for some weeks, the healing process active. So I thought my body would be able to handle some bites of gluten or food high in histamine. But no, it's as if my body would say: No, after this long, relaxing break I'm not ready anymore to work with this harmful food.
Sadly a new symptom has been added to my list. I've developed a perianal eczema and this one can be very painful. I don't know if any of you have experience with this? I already went to the proctologist because I thought I had hemorrhoids. The doc prescribed some sort of cortisone ointment which I'm not willing to use at this point. Right now I'm searching for alternative ointments, maybe one of you has an idea?
A few months ago I supplemented zinc in a low dosage for 2 or 3 weeks (I didn't want to take zinc any longer since I already have low iron levels.). This helped me extremely well with my eczema. This and leaving out high level histamine foods made my eczema almost disappear. :)

Alright, so moch for my update. I will try and post more often with shorter breaks in between.

As always thanks so much for reading and contributing!

I hope you are all in good health. Take care.

[rcchild@gpcom.net]

Thank you for that update. I always enjoy hearing how people are doing after some time of healing. It sounds like you are really doing quite well. Good luck getting that eczema under control.

I've had WD for 3 years. Started a strict diet about a year ago - it has evolved some, but basically meat and rice. I did add meat broth 7 months ago and think that is healing. My progress has been very slow, but I'll try to practice patience and just keep trying to move forward.

Look forward to continued updates.
Carol C

[Charlene]

Hi, Paul Here, Sorry to bust in on your journal, but it is the best topic I could find and I just need to vent to people who understand. Charlene took a really bad fall about 3 weeks ago. She Broke 4 ribs and bruised a lung that then filled with fluid. They transferred her to a level 1 trauma hospital for treatment. That hospital was very, very good when I explained the diet specifications that she had to adhere to. Then after 10 days, she was was transferred to rehab hospital. These people are trying very hard to take care of her dietary needs, but they just don't have the facility or knowledge to do it right. I even bought them the right groceries for her meals. But, She's been glutened and dairy'd very badly and is having a bad flare up. Just as I was getting her to where she had frequent visits from Norman!
I have finally forbidden them to feed her and am preparing her meals at home and taking them to her. They won't discharge her to home health care (nursing, PT/OT) because they say "they can get her better", HAH! If I take her out of that place "AMA" (Against Medical Advice) then Medicare and the insurance won't pay the bill and I won't be able to get the home health care and oxygen equipment because they won't order.
I'm at my wit's end!

[JFR]

I am so sorry Paul. I have an elderly friend who spent a month in a rehab facility earlier this year and when I visited her and saw what she was given to eat I thought how if it were me in rehab I wouldn't be able to eat anything. Once when I talked with my doctor about what I could do about food if I were ever hospitalized, she said that the best thing for me to do would be to have someone bring me food from the outside. I have even talked to my daughter-in-law about her doing this if it were ever necessary. It is certainly a lot of work for you but no doubt you are following the best course of action you can by cooking her food and bringing it too her. Our medical system leaves a lot to be desired. I am sorry for what has happened to Charlene. She is fortunate that she has you to take such good care of her.

Jean

[rcchild@gpcom.net]

Paul -
I'm so sorry you and Charlene are going through this very difficult time.

My parents are both 89 and going through something similar. Mom has dementia. Dad was taking wonderful care of her, but I could see that he was getting very tired. Then one morning he missed a step when going downstairs. He fell down the entire flight of stairs and ended up in the hospital with a broken arm. I moved Mom to our local nursing home at that time because I felt that, even after Dad had recovered from the arm, he was not going to be able to carry on as her caregiver. It has been a rough 7 months. Mom had one UTI after another and her mental state got worse. Finally her doctor put her on a mild antidepressant and the home started her on a nutritional drink. They did other things also, but, with those two, she started coming around and really is doing quite well at this point in time. She has always had IBS and many food intolerances, but had reached some type of remission before she went into home so that helped. I don't like what they serve her, but I finally just decided to let it be. She knows she doesn't want gravy (milk) or corn so she just doesn't eat that. She loves dessert and I'm not going to deprive her of that at this point.

Sorry for the long story, but there is a point! Charlene is in P/T and hopefully they are doing a good job with that. She probably really needs help with physical rehab. You aren't happy with what they are feeding her (and I'm sure I would agree with you), but is there any way you could just be there at meal time to monitor what they served her and maybe have a replacement (such as gluten free bread for instance) when necessary. If you would continue to work with them, maybe they would get a little better at understanding her needs. It wouldn't be perfect, but possibly better than going without PT. Also, I do wonder if the flare is all from the food or could it be partly the stress her mind and body have been under with the fall, a hospital stay and now a move to the rehab facility?

I hope you won't be offended by what I've said, but Charlene needs you and she needs you to be strong. You have done so much for her and I worry that you may be getting very weary. There comes a time when we all reach a limit and just have to let some things go. I'm not sure where your limit is, but I know my wonderful father was very weary. So Paul you please take care of yourself also.

I wish you both the very best and please keep us posted on Charlene's recovery.
Carol C

[brandy]

Hi, Paul Here, Sorry to bust in on your journal, but it is the best topic I could find and I just need to vent to people who understand. Charlene took a really bad fall about 3 weeks ago. She Broke 4 ribs and bruised a lung that then filled with fluid. They transferred her to a level 1 trauma hospital for treatment. That hospital was very, very good when I explained the diet specifications that she had to adhere to. Then after 10 days, she was was transferred to rehab hospital. These people are trying very hard to take care of her dietary needs, but they just don't have the facility or knowledge to do it right. I even bought them the right groceries for her meals. But, She's been glutened and dairy'd very badly and is having a bad flare up. Just as I was getting her to where she had frequent visits from Norman!
I have finally forbidden them to feed her and am preparing her meals at home and taking them to her. They won't discharge her to home health care (nursing, PT/OT) because they say "they can get her better", HAH! If I take her out of that place "AMA" (Against Medical Advice) then Medicare and the insurance won't pay the bill and I won't be able to get the home health care and oxygen equipment because they won't order.
I'm at my wit's end!

Hi Paul,

Yes, keep taking her foods. Do you have someone who can be with you when you talk to her doctor?
A friend or a family member? I'd press the Doctor at the rehab place on timeline to get her
legally discharged and sent back to your home. See if the Doctor says 2 weeks? 4 weeks? 6 weeks etc. Tell the Doctor you want to get her legally discharged when she is up for it and find out
what kind of timetable the Doctor is talking. Since you are being hassled about this I'd
have a family member with you or friend with you.
Once she is legally discharged make sure you get home health care and PT/OT prescribed at the
house.