Not the ideal first post.

[markymarc1979]

As my title suggests this is not my ideal first post. I was pointed to this forum by a user on Meet an Ostomate.

I was diagnosed with Crohns about 10 years ago, I had my first operation about 9 years ago, and since then i'm well into double figures. The past 3 years have been particularly bad. At the moment I have had about half of my small bowel removed and colon has gone completely. I had a proctectomy and resection at the end of last year. Over the past 4 months I have been in steady decline and am waiting for yet another resection and hernia repair.

For some reason the past 3 months have been my worst ever. Two weeks ago I had immense pain and became so desperate I deliberately overdosed on oramorph.

At the time of writing this post I have been sectioned to a mental health ward for my own protection. Having to hear what I was like when I was brought in is really frightening. I don't find talking to psychiatrists very helpful, it's as if they be-little me saying they know what it"s like to have a stoma and what it"s like when the bag leaks in public and people stare and laugh at you.

It's a bit of a shock to be here and I feel this place is making me worse, I don't really sleep yet when I doze off and wake I don't know where I am and panic.

I'm not even supposed to have my phone to write this post from let alone my belt.

Sorry, as I said this is not the ideal first post.

 

[Clash]

I have no advice but just wanted you to know that someone was listening. This is a wonderfully supportive forum. You may want to check out the stoma sub forum as we have many members with a stoma. I wish you the best and hope you find relief from the pain soon.

 

[Jimena]

You have had such a hard time I dont wonder that you feel like you feel. Sometimes it feels like there is no way out, when you are sick and there is no hope for the better. I just want to say, hang in there, it will be better, i promise. :hug: Crohn's is beast, who infects your body and soul.

:ghug:

 

[markymarc1979]

Thank you for you posts guys, I had a reasonably good day with the psychiatrist after a difficult night where I became so confused that I didn't know where I was half the time.

 

[mcate238]

I don't know if you are religious, but please know that I am praying for you. I am going through a very rough time with Crohn's right now and decided to finally reach out and join the forum (this is my first post). Please know that your courage to share encouraged me to finally engage in such an important discussion. I hope every day is a little easier for you.

 

[smallfry]

Hugs for you. I go through some emotional times too and go on and off antidepressants. I'm so glad you are here talking with us about it. It's is much harder to do alone. Talking is one of the best things you can do so you are already taking the right steps.
I am new to my temp. stoma - Angus the Anus! It is quite a life change, feeling like people are looking at you, always worrying about leaks and smell. Not to mention all your physical pain too. We have been delt some ****** hands but we gotta deal with what's delt and they way we deal with it is how we come out on top. You will come out stronger than ever! I'm so glad you did not succeed in your attempt! You are brave to tell your story and I think in the future you will be able to use your voice to help others feeling the same. Stay strong and educate the world with me and all the others online about IBD. Ostomies save lives and are not gross! There are some pages on facebook that I love and have great support as well as this site. Inflamed and Untamed, My doctor knows me best from behind/fullfrontal ostomy and undercover ostomy are my favs. Inflamed and Untamed/agirlwithguts has a great group of vlogs that helped me out.
Best of luck!

 

[happy]

marky, I am hearing you say how low you are feeling, but I just want to be sure that someone is taking care of the physical side of things. There are many things that can contribute to feeling really low with IBD in general, never mind all of the extra difficulties that you have had. Is someone watching your vitamin levels, iron levels, inflammation levels etc. Are you a candidate for any new meds that you haven't tried? I don't know if Enteral/Elemental Nutrition could be helpful to you or even TPN for a bit just to get some good nutrition in you to help the fatigue and mood. Even different pain meds could help.

Please make sure that they remember that you have some serious physical problems that they need to help you with as well. :hug:

 

[markymarc1979]

Thanks for the kind words guys/girls. I am feeling a little better by being in here, although last night I lost it when I had a leak and ended up being sedated as I took it out on my stoma.

I had the psychiatrist going through what the plan with me is. He thinks I'll be allowed home maybe next weekend. They are arranging a head MRI and to see a neuropsychologist as my memory problems are getting worse and could be dangerous. As an example a couple of days before I was admitted to the psyche ward, I found myself standing in a car park 5 miles from my house at 3 in the morning wearing just PJ bottoms. I have no idea how I got there!!

When I initially go home they insist that someone is there at night and I only have a few days of meds in the house at one time. I was made aware there is no set time or magic cure, but I think I am doing the right thing.

Once again, thank you so much for your support.

 

[markymarc1979]

marky, I am hearing you say how low you are feeling, but I just want to be sure that someone is taking care of the physical side of things. There are many things that can contribute to feeling really low with IBD in general, never mind all of the extra difficulties that you have had. Is someone watching your vitamin levels, iron levels, inflammation levels etc. Are you a candidate for any new meds that you haven't tried? I don't know if Enteral/Elemental Nutrition could be helpful to you or even TPN for a bit just to get some good nutrition in you to help the fatigue and mood. Even different pain meds could help.

Please make sure that they remember that you have some serious physical problems that they need to help you with as well. :hug:

Hey Happy, love the name

The physical side has been awful for the past 6 months, well really since my last operation to be honest. I have 3 section of my small bowel that need re-sectioning, also my stoma has a bad hernia as well.

I have been to see the nutritionist quite a few time, I have a probiotic that they customised. I have been on a liquid only diet for two months now, even eating bread become so painful in the bowel, but I have got used to it now. I've been on TPN before, usually as an in-patient.

Thanks for you kind words though and thoughts.

 

[UnXmas]

I just came across this thread and wondered how you're doing now.

I felt so low when my illness first reached a point where it got out of hand. It was the embarrassment that was worst for me coupled with the fact no one really believed me or could tell me what was going on. I was so confused and disgusted by my body, and yet everyone was telling me there was something wrong with my mind and my body was "normal". It took me a long time to come to terms with it, and I was lucky that I managed to keep my own convictions and know that I was correct in my interpretation of reality and what was happening to me, no matter what anyone else said.

I felt like ending it all at that time. It did get better though. If you've been through a lot recently and things are declining, it's understandable you'd reach a point where it is difficult to see things improving again. But my experience is we adapt to everything eventually. Even if it's not the same as having our problems solved, they can start to lessen in their intensity with enough time.

When physical problems get really bad, they completely overwhelm everything else. It's natural that phsyical pain and stuff just demands all our attention, and we have to be at least reasonably comfortable before we can think past it. Are you doctors helping and being supportive? Have they got a plan in mind about where to go from here and which problems might be able to be dealt with?
Is it just the illness that is getting you so down, or are there other factors (you don't have to answer if you don't want to)? Hope things have began to ease a little for you. xx

 

[CLynn]

Marky, how are you doing now? Sending hugs and prayers your way.

 

[afidz]

I don't have advice for you but I hope that all will work out for you soon. Try to stay positive and keep us updated on how things go.

 

[CLynn]

Marky, I wish you'd post something, I am worried about how you are doing.

 

[marcysmummy]

Marky, I wish you'd post something, I am worried about how you are doing.

hi, I came accross this site by accident, and decided to join up. I havnt got crohns but my dear son Marc (markymarc1979] did, I say did because he died last October. I know how he suffered terribly for the last 3 years of his life. miss him very very much hope you are feeling ok, will chat in the future if you want to. best wishes lyn

 

[happy]

:hug:Oh Marckysmummy, I am so sorry to hear about the loss of your son.

Thank you so much for letting us know. I am so sorry that you, your son and your family had to live with the worst side of this disease.

We have a Candle Room that you may wish to post in. It is a place for prayers, a place to care for someone that you are concerned about and a place for memorium:http://www.crohnsforum.com/showthread.php?t=14193

:hug:

 

[n00b]

OMG!
That is horrible news.

I hate to ask but how did he pass?

 

[Dragonfly72]

May he rest in peace, my heart goes out to mark and his family<3

Michele