Looking for support

[craiglaurasam]

My name is Craig and I have had Crohn's for almost 23 years since age 13. I have had 5 Crohn's surgeries and 9 overall. My last surgery was 2 years ago and involved a month-long hospital stay. I am now on disability and am a stay at home dad to my 3 year old son.

I am so lucky to have a supportive wife and family because this hasn't been easy physically or emotionally. I need to speak with those who also have Crohn's to know how you have coped with the feelings and symptoms and to give and receive some support.

Since my last surgery I have been falling into a deeper and deeper depression. I don't enjoy anything I used to other than spending quality time with my wife and son. My self esteem is shot, I have isolated myself and any social interaction seems harder each day.

I need to know how to get my self back. How do I recover and become the person I used to be?

 

[leahsmom]

Hi Craig
I wish I had advise for you. I don't know if it would help or not but please try to reach out to Kevin under the forum for low dose naltrexone (treatment). He has been thru a lot and has finally found somewhat a normal life since taking low dose naltrexone. My 15 year old daughter has felt like a normal teenager again too after starting LDN. Couldn't hurt to talk to Kevin.
I hope someday my daughter will find a supportive spouse as you have.
Hugs to you Craig I hope you feel better soon!
Sharon

 

[Higbonzo]

Craig,

I am not sure, "how you become the person you used to be? Especially in the context of having this disease. I have found your question is a bit like asking an 80 year old, "what they could do to make their life more like when the were younger?". They will tell you, "Not much, you can't go back in time, you have to make the best of what you have". As far as the mental struggles, I think it is much the same. It is really hard to undo all you have been through and become something you are not any more. It is a bit like war, you just can't undo something.

On the other hand, you can hold onto the essence that is you and you can redefine yourself. I tried everything to stay in the game but, like you, I had to finally give in when I was 30 something. I stopped working, went on disability and decided to be a stay home dad. It was a hard choice to make, and it can still be hard at times, but a very wise choice in the long run. This was in the early 90's so I was one of the first stay home dad's. You will find a lot more support out there in this day and age than I did back then. I decided to really focused on being the best father and husband I could be, it became my new job, and I found, and still find great joy in it. You have a lifetime ahead of you and no one can tell the future. But, you can use this time to take it easy as possible, which is not really that easy because being a home maker is a lot of work. But, once the kids get into school it becomes a bit more predictable. The nice thing about the kids is they will keep you social, and you will get many opportunities to meet lots of nice people and become involve with your child's life and activities. And you may find as the years pass and you don't have the stress of a 40 hour a week job, plus all the other responsibilities that fall on a fathers shoulders, you may start feeling better, which will definitely get you a bit closer to your old self.

As for the depression, a lot of the drug that are prescribed cause depression. I myself got so bad I had to get professional help (baker acted). It really help me out a ton. But, I was given more tools to deal with the depression than drugs. But, the right treatment can make all the difference in the world. You can always look into support groups in your area, I have done this before as well. Some are better than other, but they all usually have something positive to offer.

I am hoping you will find that not working will lighten your load. Having a supportive family make you a very lucky man. You just have to remember, you give so much more to people than you can imagine, and you are loved very much by those around you.

Peace and Love.

 

[afidz]

Hello Craig!
If you don't mind me asking, what kind of surgeries have you had?
I have had 14 going on 15 maybe 16, 13 (14 and 15) are either from having Crohn's or a result of it, I am applying for disability because it is unclear when I will be able to go back to work or lead a normal life. You are not alone, I know how you feel, its tough to deal with illness. I have found that being apart of this forum has really helped me come to terms with whats going on, I have made some friends on here and when I need to vent they are there to listen and can understand my feelings. Would you feel comfortable with speaking to a counselor or therapist? I know there are therapists that specialize with people that have chronic illnesses. It might be a great outlet for your depression. I look forward to haring from you and getting to know you more!

 

[Angrybird]

Hello Craig and welcome to the forum.

Out if interest what did your previous surgery entail? Are you on any meds for your Crohn's and if so what are you taking? Have the docs ever tested your vitamin levels and if so when and do you know what the specific numbers were?

It may not be possible to get back to being the person you were before due to what you have gone through already with this disease, you can however take strength from what you have experienced and maybe even become someone better.

Sending lots of best wishes your way hun.

AB
xx

 

[afidz]

AngryaBird, your last comment really said something to me, very inspiring! Thanks for putting a brighter lught on my day!

 

[craiglaurasam]

Thanks for all the support. Crohn's-wise I have had 5 surgeries. The first was in 1994 which was a bowel resection to get me off of my dependence on prednisone. That one I got over immediately.

I had 3 surgeries in 1999, which entailed an emergency surgery for a pretty bad abces for which I was told I had to be revived while on the operating table. Then I resection to cut out the diseased area followed by a final surgery that year to reverse the ostomy. I had over a month in the hospital then another 6 months with care from a nurse giving me IV meds and TPN for nutrition. Those surgeries took about a year total to return to some semblance of normalcy.

In 2010 I had a strictureplasty to open up 7 strictures and resect some more diseased bowel. It was a 6 hour procedure that left me in the hospital for a month. This stay was worth because they did not have an IV version of my antidepressant so I slowly started to lose my mind as things went along. My mind and body still haven't fully recovered from this one.

For me the cumulative effects of over 50 hospitalizations, countless procedures, the everyday symptoms and of course the surgeries have worn me down and eroded my fight. I feel like a boxer who has been concussed. The first few concussions you recover but slowly as time goes on you aren't the same. This is probably just me not being able to think clearly because I am in a dark place right now.

As for meds I am currently on 6MP for maintenance, Entocort, Cipro and Flagyl for flares. The biologics haven't worked for me personally I have had a really bad reaction each time I have tried Remicade. Humira is $900/shot under my insurance so that is out.

 

[craiglaurasam]

I am currently in therapy now and trying to work things through. I am on Lexapro and Xanax right now for anxiety.

I know I can't be completely the same anymore but I would like to recognize the person I used to see in the mirror.

 

[Angrybird]

Do you know whether your vitamin levels are being monitored? Given the amount of bowel you have had resected I would think you may suffer from malabsorbtion and a low B12 for example would contribute towards how you are feeling. How are things tummy wise?

 

[craiglaurasam]

Thank you so much for taking an interest! I really appreciate it. My vitamins are monitored every quarter. I get B-12 shots when I am low and have been on and off of Iron supplements being borderline anemic.

Right now I am going through a flare. My appetite has slowly decreased to nothing with a lot of nausea interspersed with some pain. I got put on Cipro first and now on Entocort. My CT scan showed nothing thankfully but I know my body and am not so sure. In 2010 the CT showed nothing but the GI Series showed the strictures.

 

[Angrybird]

I agree that a CT is not really enough to base things on, when are you next due to see your doc to perhaps ask about doing some further testing? Also with the B12 shots due you only have these every now and then or on a routine basis? Have you ever been told what your specific level is?

 

[craiglaurasam]

I don't know my specific level of B12 just when it is low for the range so I don't get them regularly only when my level is deemed low.

My doctor and I left our last conversation with her having me do a stool sample to rule out infection. I am probably going to get a second opinion at the start of the year.

 

[Angrybird]

I would also suggest that your B12 be checked again and to get the specific level from the doc. These shots should be given on a regular basis so you don't get to a low level, also the level range is pretty big, from what I have read here a reading of 450 plus would be ideal. Please keep us updated on how you are getting on.

 

[craiglaurasam]

Thank you! I certainly will provide updates and look into more regular B12 shots.

 

[Tenacity]

Hi there and welcome to the forum

I think you are far more braver and stronger than you give yourself credit for!

You have walked a very long and hard road, and you would have to be a super human being to not feel defeated at times. But, you cannot give up. The fact that you are seeking help for the way you feel, shows me that you are not going to accept this lying down. You are on the right path. I think that if you are well enough, you should force yourself to get out and take you son to the park or fairgrounds or someplace fun, and start building some precious memories with him.

Also, perhaps think about bringing some more arsenal to the table for the Crohns. If you have already tried the biologics, perhaps consider LDN - Low Dose Naltrexone. We have a section in our treatment forum that can provide you with a lot of information. The only reason I suggest this med is because the dose is so low when taken for IBD (approx. 4.5mg instead of 50mg), that there are hardly no side effects at all. I personally believe that there is more than one illness that is being put under the umbrella of Crohns. That is why one treatment will be a miracle drug for one, and not the other, and why there are different presentations of IBD. With LDN, its almost as though you have nothing to lose in trying it really. It is extremely cheap even without insurance, and without all the side effects and risks - it has been around for decades.

For the nausea, would it be legal in your state for your doctor to prescribe to you medicinal marijuana? Many members say that it is a great relief for nausea, pain and poor appetite and swear by the herb.

Hang in there - I think one day you are going to look back and realize that you are a survivor, not a victim. To go through all that you have, and come out on the other side still fighting, you have to be an incredibly strong person.

 

[craiglaurasam]

Tenacity, thank you very much for your support and information. No matter how bad I feel thankfully I am usually able to take my son to the playground, outside to ride his bike, to the library or bowling alley. Having these times give me tremendous joy.

I will certainly research Low Dose Naltrexone. Since I have nothing to lose as you said I will ask my gastroenterologist to let me try it to see how I handle it. I'm not looking for a miracle drug just some relief.

I am a little concerned bringing medical marijuana into the house with my son. I must admit I am woefully uneducated on the subject and don't know if medicinal marijuana can be given in ways other than inhalation.

Deep down I know I am a survivor and have had to be very strong for a long period of time. I am just in a dark place that I have to find the strength to fight out of and I will definitely draw some of that strength from people here who have been there and gone through this. It helps to not feel alone.

 

[Higbonzo]

Craig,

You are on a lot of meds. I would think all those meds alone would cause some issues. Do you get any benefit from the drugs? I really do understand trying, and wanting to be your old self again. For me, after 20 years of going down that rabbit hole, the doctors and I finally realized that was not going to happen for me. I finally told them quality of life over quantity. This was in my late 30's, and you are right, the fight gets tougher as you get older. I told them I wouldn't take anything they had to offer because it always made me worse. I told them to just give me prednisone because it was the only thing that has ever given me any relieve. They said no, but said some crohns patient have had good results with Budesonide. So, now, I just take budesonide, (steroidal), lansprozole, calcium, vitamin d, and tramadol. I also suffer from a pretty severe case of crohn's arthritis and that is why I have the tramadol. Quiet honestly, I have to be careful with the vitamins and the pain killers because they start tearing up my gut. So, I don't take them all the time. I really watch my diet and just do the best I can to care for myself at home. It has worked out pretty well so far, I have not been hospitalized in 10 years. I have an ileostomy, and have lost all my colon and rectum to surgeries in the late 80's, and I was constantly in and of the hospitals until 2002. I still see GI doctors, and the last time I saw the GI doctors we talked about all the new meds again, but they even agreed, I am between a rock and a hard place, so we just continue what is keeping me out of the hospitals. I should be scoped, but we all agree it always makes things worse. You know what they say," if it ain't broke don't fix it". I am not saying this is a path for you. But, I believe for some of us the more they throw at us the worse we gets. And it gets to a point where you just don't know what is really working anymore.

My heart goes out to you. I think taking it easy and being a stay home dad is a wonderful idea.

Enjoy the Holidays with your family.

Peace and love..

 

[spencer2012]

Extremely hard to say how youd ever get back to being the same person because lets face it, your really not the same person anymore. All you can do is remain the best father you can be, keep feeling blessed for the support from your wonderful wife and keep your chin up. With a bit of luck all them good things will out weigh the bad stuff and youll soon feel better about who you are today. God bless

 

[Tenacity]

Craig,

If you do go ahead and talk to your gastroenterologist about LDN, please don't be surprised if he has barely any knowledge about it. If you read our section about LDN, you will see how people have had to provide study results to convince the doctors to give it a shot.

I am so happy to hear that you are able to go out and enjoy time with your son. Its amazing how our kids can give us strength to endure more than we ever thought we could.

The medicinal marijuana - you can get it in pill form - it is called Marinol. Just like any other prescription, it comes in different doses. I agree - not a good idea to smoke - ever! I have heard that some people rather use a vaporiser if they go that other route in states where it is legal. I have seen this being prescribed in hospital settings and the effect it has on some people and the relief it brings - really amazing!

I am happy to hear that, in reading this forum, you can see that you are not alone. Unfortunately, I know all about strictures, fistulas, surgeries, long periods on TPN, but please know there are better days ahead! There are so many ups and downs, I know its hard to make the most of our better days. It is very comforting to know that they are making great strides in research too.