Dealing with "muscular skeletal breakdown", colitis, depression, etc

Posted by tammy64 @tammy64, Aug 14, 2018

My son is only 23. He use to be a huge advocate of the gym and ate very healthy (fish, chicken, steamed veggies, brown rice, yams, etc… no butters, sugars or processed foods etc.) The last 3 years he's gone from a 205 lb muscle bound man (no steriods) to a 155 lb man that has had nothing but issues affecting his entire body. He's been diagnosed with colitis, muscular skeletal breakdown, IBS, has symptoms of auto-immune disease but none of the tests have been conclusive. He has tried every doctor imaginable to help with his intestinal issues as well as total body aches and pains. He has done food sensitivity tests and did elimination of the highly sensitive foods and slowly added some back. He is now on The Low FODMAP Diet along with supplements such as anti-oxidants, enzymes and probiotics. Now a GI doctor has him on antibiotics for his IBS (but I'm afraid that's going to cause even more stress on his body)…. He's in so much pain, daily, that has been going on for years and he's beginning to think there is no help. He has been in physical therapy for over a year now and is religious with the stretches and exercises to home given by the pt. He gets massages, had acupuncture, does trigger point release, rolls, and recently did a float spa. I hate to admit that he has mentioned he'd rather die than continue in this pain! I'm searching for HELP, a direction to turn him to to get a complete diagnosis and stop getting the run around. Where do we go from here? Sounds like his body is rejecting everything. Please help

@lioness

@tammy64 As a retired nurse. You need to get him into a clinic if not Mayo there,s Cleveland clinic, John Hopkins but he needs to be seen by other Dr,s not just one till you fi nd out what is going on and he can get help for this.I wish you luck

What part of the country are you in?

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Yes, in MN it’s at either St. Mary’s Hospital or at Methodist hospital. In AZ you’d need to know which hospital is the Mayo affiliate and visit that hospitals ER.

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@lioness

@tammy64 As a retired nurse. You need to get him into a clinic if not Mayo there,s Cleveland clinic, John Hopkins but he needs to be seen by other Dr,s not just one till you fi nd out what is going on and he can get help for this.I wish you luck

What part of the country are you in?

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@tammy 64 I cant answer that but you can contact Office of Patient Experience to find out Im tagging @gailb ,@Colleen Young for there help

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Hi @tammy64
Members here have given you wise advice. As @gailb suggested, your son might wish to ask his doctor for the details of the referral that s/he sent to Mayo Clinic. It is usually helpful to have a doctor referral since they can send a medical history and test history. However, if his doctor did not provide this information, he can contact Mayo Clinic AZ directly and self-refer. If possible have copies of tests he has done and details about the past medical history since his deterioration began.

Here is the contact information for Mayo Clinic: mayocl.in/1mtmR63

You may also be interested in following the discussions in the Digestive Health group: https://connect.mayoclinic.org/group/digestive-gastrointestinal-problems/

It is hard to watch our children suffer, even when they are adults. Please keep us posted.

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Hi @tammy64
I am also a volunteer mentor on the site and I agree with Colleen that you have already received some very good advice. I have lived with chronic pain as the result of chronic pancreatitis for about 12 yrs. and I would add one further thing. Based on your report of him suggesting that he would not want to live if this was to continue, I would suggest a psychiatric eval. and I imagine they will discover depression. It is rare that anyone can endure pain and "not knowing" for the time you stated without experiencing depression and, in my case, severe depressive disorder. Treating the mind will not make the pain go away, but it does help one to cope and not be hopeless about the future. At least that is what I have discovered and mental health treatment is about more than just a drug(s).
You are both in my prayers and please stay in touch,
Gary

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@lioness

@tammy64 As a retired nurse. You need to get him into a clinic if not Mayo there,s Cleveland clinic, John Hopkins but he needs to be seen by other Dr,s not just one till you fi nd out what is going on and he can get help for this.I wish you luck

What part of the country are you in?

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Mayo Hospital in Phoenix has an ER.

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@tammy64

Please let us know if you are, or are not able to get an appointment at the Mayo Hospital in Phoenix. I'm thinking about you and your son this weekend and I hope you are able to secure an appointment soon.

– Is he finding any relief at this point?
– Has he tried the peppermint capsules or BRAT diet and if so, have they helped?
– Does your son know you are searching for help on Mayo Connect?
– Is there a reason he doesn't write about his situation here?

I'm asking the questions above because I know my husband and other males in my family are highly resistant to my trying to help them or recommend they seek medical attention for their problems. I also know that sometimes it's too difficult to write and ask for help. I'm hoping your son is listening to your recommendations and will continue to participate in his recovery. I concur with Gman007 about your son seeking emotional counseling. I have been through counseling and now take an antidepressant that allows me to function in a healthy way. My fears of asking for help when I was 25 years old were huge. He will probably need encouragement that he's not "crazy," but is probably depressed due to his pain and worrying about the unknown diagnosis.

I hope your son's doctors will supply his records to the Mayo Hospital, and if not, that you are able to get an appointment for him. There is an answer out there, so keep pushing for it. You're a good, loving and strong mother; your son is fortunate to have you in his life.

Gail
Volunteer Mentor

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@gailb

@tammy64

Please let us know if you are, or are not able to get an appointment at the Mayo Hospital in Phoenix. I'm thinking about you and your son this weekend and I hope you are able to secure an appointment soon.

– Is he finding any relief at this point?
– Has he tried the peppermint capsules or BRAT diet and if so, have they helped?
– Does your son know you are searching for help on Mayo Connect?
– Is there a reason he doesn't write about his situation here?

I'm asking the questions above because I know my husband and other males in my family are highly resistant to my trying to help them or recommend they seek medical attention for their problems. I also know that sometimes it's too difficult to write and ask for help. I'm hoping your son is listening to your recommendations and will continue to participate in his recovery. I concur with Gman007 about your son seeking emotional counseling. I have been through counseling and now take an antidepressant that allows me to function in a healthy way. My fears of asking for help when I was 25 years old were huge. He will probably need encouragement that he's not "crazy," but is probably depressed due to his pain and worrying about the unknown diagnosis.

I hope your son's doctors will supply his records to the Mayo Hospital, and if not, that you are able to get an appointment for him. There is an answer out there, so keep pushing for it. You're a good, loving and strong mother; your son is fortunate to have you in his life.

Gail
Volunteer Mentor

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@tammy64 Yes as gailb said please let us know if your son gets help he,s to young to have these problems but its hard to tell a young person I know have a son at that age couldn't tell him anything.Praying for you .

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@gailb

@tammy64

Please let us know if you are, or are not able to get an appointment at the Mayo Hospital in Phoenix. I'm thinking about you and your son this weekend and I hope you are able to secure an appointment soon.

– Is he finding any relief at this point?
– Has he tried the peppermint capsules or BRAT diet and if so, have they helped?
– Does your son know you are searching for help on Mayo Connect?
– Is there a reason he doesn't write about his situation here?

I'm asking the questions above because I know my husband and other males in my family are highly resistant to my trying to help them or recommend they seek medical attention for their problems. I also know that sometimes it's too difficult to write and ask for help. I'm hoping your son is listening to your recommendations and will continue to participate in his recovery. I concur with Gman007 about your son seeking emotional counseling. I have been through counseling and now take an antidepressant that allows me to function in a healthy way. My fears of asking for help when I was 25 years old were huge. He will probably need encouragement that he's not "crazy," but is probably depressed due to his pain and worrying about the unknown diagnosis.

I hope your son's doctors will supply his records to the Mayo Hospital, and if not, that you are able to get an appointment for him. There is an answer out there, so keep pushing for it. You're a good, loving and strong mother; your son is fortunate to have you in his life.

Gail
Volunteer Mentor

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I really appreciate everyone's input and good advice. He FINALLY was able to get an appointment at Mayo but not until October. It's a start. To answer some of your questions, Gail, he does have relief at times. He does a lot of physical therapy on his own and meditates. He is taking a lot of 'natural' anti-oxidants, anti-inflammatories, and Omegas, etc. He has over the years been diagnosed with so many different things that I sometimes think these doctors are just grasping for anything. He has not had success with the BRAT diet especially since his food sensitivities include bananas, white rice, and bread (although he can to gluten-free).. his diet is a true struggle. He always ate so 'clean' and healthy but find out later he had strong sensitivities to the chicken and veggies etc that he was eating. I promise it's like a dog chasing it's tail… danged if you do and danged if you don't.

He does know I'm reaching out for help and is thankful for my intervention. One of the many aches and pains he has is in his hands so to write and/or type causes a lot more pain so he is not wanting to do it himself. This is a 23-year old man that is so frustrated with his aches and pains and the lack of help he is getting. For example, one diet he was to follow for 6-weeks told him not to eat: apples, bananas, barley, bean, beef, beer, carrots, celery, cheese, chicken, egg, lemon, lettuce, milk, oat, peas, peanuts, potato, tomato, tuna, turkey, wheat, whey, yeast….. plus more (you get the point) WHAT was he suppose to eat? How do you pack food for work for the day? No answers. I love to cook and try new things but I couldn't even figure out simple things for him to take to work and be satiated. Not to mention other diets eliminated what the first one allowed.

My son is frustrated and has done so much on his own to get answers to all the things going on in his body. I am proud that he has taken charge but also frustrated for him not finding any true answers. He has gone to a psychiatrist for help to only be prescribed medication that he is learning is NOT what he needs and is getting off of them now… just one more misdiagnosis…. FRUSTRATING.

I appreciate your encouragement and understanding what he is going through. I am happy to say he is at least telling me everything and when he gets at that 'low' point he is now calling me and we are able to talk through it. Depressed or frustrated? One needs meds the other? I think it needs time and a good doctor (or team of) to really figure this out. I am hopeful and everyone here has been wonderful.. Thank you!

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@gman007

Hi @tammy64
I am also a volunteer mentor on the site and I agree with Colleen that you have already received some very good advice. I have lived with chronic pain as the result of chronic pancreatitis for about 12 yrs. and I would add one further thing. Based on your report of him suggesting that he would not want to live if this was to continue, I would suggest a psychiatric eval. and I imagine they will discover depression. It is rare that anyone can endure pain and "not knowing" for the time you stated without experiencing depression and, in my case, severe depressive disorder. Treating the mind will not make the pain go away, but it does help one to cope and not be hopeless about the future. At least that is what I have discovered and mental health treatment is about more than just a drug(s).
You are both in my prayers and please stay in touch,
Gary

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Thank you Gary… Everyone's prayers, input and advice is greatly appreciated!

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@gailb

@tammy64

Please let us know if you are, or are not able to get an appointment at the Mayo Hospital in Phoenix. I'm thinking about you and your son this weekend and I hope you are able to secure an appointment soon.

– Is he finding any relief at this point?
– Has he tried the peppermint capsules or BRAT diet and if so, have they helped?
– Does your son know you are searching for help on Mayo Connect?
– Is there a reason he doesn't write about his situation here?

I'm asking the questions above because I know my husband and other males in my family are highly resistant to my trying to help them or recommend they seek medical attention for their problems. I also know that sometimes it's too difficult to write and ask for help. I'm hoping your son is listening to your recommendations and will continue to participate in his recovery. I concur with Gman007 about your son seeking emotional counseling. I have been through counseling and now take an antidepressant that allows me to function in a healthy way. My fears of asking for help when I was 25 years old were huge. He will probably need encouragement that he's not "crazy," but is probably depressed due to his pain and worrying about the unknown diagnosis.

I hope your son's doctors will supply his records to the Mayo Hospital, and if not, that you are able to get an appointment for him. There is an answer out there, so keep pushing for it. You're a good, loving and strong mother; your son is fortunate to have you in his life.

Gail
Volunteer Mentor

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@tammy64 wow poor guy hang in there till Oct What is your sons name I,ll put him on our prayer list ?

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@gailb

@tammy64

Please let us know if you are, or are not able to get an appointment at the Mayo Hospital in Phoenix. I'm thinking about you and your son this weekend and I hope you are able to secure an appointment soon.

– Is he finding any relief at this point?
– Has he tried the peppermint capsules or BRAT diet and if so, have they helped?
– Does your son know you are searching for help on Mayo Connect?
– Is there a reason he doesn't write about his situation here?

I'm asking the questions above because I know my husband and other males in my family are highly resistant to my trying to help them or recommend they seek medical attention for their problems. I also know that sometimes it's too difficult to write and ask for help. I'm hoping your son is listening to your recommendations and will continue to participate in his recovery. I concur with Gman007 about your son seeking emotional counseling. I have been through counseling and now take an antidepressant that allows me to function in a healthy way. My fears of asking for help when I was 25 years old were huge. He will probably need encouragement that he's not "crazy," but is probably depressed due to his pain and worrying about the unknown diagnosis.

I hope your son's doctors will supply his records to the Mayo Hospital, and if not, that you are able to get an appointment for him. There is an answer out there, so keep pushing for it. You're a good, loving and strong mother; your son is fortunate to have you in his life.

Gail
Volunteer Mentor

Jump to this post

@tammy64

Thank you for your helping me to understand your son's situation better. I'm so sorry that he and you are going through this experience. I can understand his frustration with the diets and different ways his physicians have used to try to narrow down his problems. Obviously, it hasn't worked. I also relate as a mother of an adult son who has had physical and mental problems. It's so hard to see your child in pain and suffering; I wanted to take his place but of course could not.

I urge you to keep trying to get your appointment moved up. Have you supplied Mayo with all of his medical records yet? If not, I recommend doing so, and after that seeing if they can move him to a sooner appointment. It has happened for others at times. I'm happy your son has such an active advocate in you. It sounds like you have a great trusting relationship. That is a comfort for him I'm sure.

I'm holding you in peace and love during your wait.

Gail
Volunteer Mentor

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