Going through a bad time... hoping to find and give strength here.

[nomad]

going through a bad time... hoping to find and give strength here.

Hello

44 y.o. male here. I have had crohn's since 1984. Diarrhea, fistulae, abscesses... septicaemia in 1996, controlled at the eleventh hour. Intestinal stenoses that got more and more aggressive until I could no longer eat and had to have 80 cm of intestine removed in 2006. Now more (and more complex) fistulae are threatening to force doctors to simply chop off the whole anal area. In the meantime, after two further surgeries and a piling amount of exams, a seton has been inserted - very painful and uncomfortable, every hour, every minute of the day.

I am single: two previous relationships were partially destroyed by the constant stress of my condition. Now, with the seton and such evident signs of serious illness, I see the possibility of a relationship becoming more and more distant... I used to engage in casual sex as a way of alleviating the loneliness and make up for the pain I otherwise feel... Now I feel even the possibility of casual sex and intimacy is being taken away from me: the pain wipes out any sex drive I could possibly have, and besides I feel extremely embarrassed by the string that now hangs from my a**. As far as erections go, I no longer know if their relative absence is due to this whole trauma, or further complications in the area.

Doctors have not been particularly supportive, and I'm beginning to feel they haven't been paying much attention either: it seems they only wake up when the situation is nearing catastrophe. But I live in a country where doctors are kings (you do not ever dare question them), and social solidarity networks are nonexistent: they are simply not part of our culture. The individual is expected to suffer in silence and place his/her fate in the hands of the experts, no questions asked, no patient involvement in decision-making.

I have always been optimistic, hard working, reliable, affectionate and compassionate towards others. Now I am simply running out of faith: I feel angry, lonely and indifferent, as if life is no longer worth living.

Hoping to find comfort and be able to find new meaning through comforting others in this forum.

 

[DustyKat]

Hi nomad and :welcome:

Holy cow, you sure have been through the wringer! One thing for sure is you have found a fab place for support and info and you will certainly be an asset here so please stick around.

I'm so sorry to hear about your personal issues. I would imagine your erectile problems would most likely be a combination of your chronic pain and physical issues intertwined with the emotional trauma that accompanies it. What medications have you been on and what are you currently taking??

That's awful about the doctors, I don't know what to say about that. I can't imagine what it must be like for you to have Crohns and not be able to make yourself heard and be validated by the very people that hold your life in their hands. I don't imagine it's an option to go elsewhere for treatment or assessment?

I hope more than anything you can find some peace and friendship here. you will certainly find many others have had the same surgeries and those that are dealing or have dealt with the same issues you are now facing with personal relationships and sexual problems. If you stay around, once you have reached 50 posts and one months membership, you can ask to join the zone and there you can discuss personal issues in much more detail.

Browse through the forums and if you have any questions please don't hesitate to ask. Good luck and welcome aboard!

Take care,
Dusty

 

[nomad]

Dear Dusty,

Thank you so much for your kind words. It makes a world of difference to know we are heard out there, and heard from people who share this burden. I am fortunate in that I belong to a circle of close friends where love flows abundantly, but it is hard to feel understood by people who have not gone through crohn's. I feel their compassion, but also their inability to understand, to connect.

I am in the process of requesting copies of all my exams and go ask for a second opinion. Feel that I have placed myself in this dire situation, for fear of challenging the system I described, but I now understand that I cannot be hostage of such an outdated model of doctor-patient relationship.

In reply to your question, I am on 2g/day of Salazopirine, 100mg/day of Imuran, and 2g/day of Flagyl. The doctor is considering moving on to Remicade, or a more recent variation of it.

I look forward to reaching the 50 posts and being able to discuss the "other issues". Sharing intimacy and compassion in a sexual environment has been a very important part of my faith and happiness, pleasure an antidote to all this pain... and I am at the moment very angry that even that seems to have been taken away from me. Or maybe I just need to overcome my embarrassment. I have always believed (and said) that intimacy is about opening up to our vulnerabilities... maybe now its the time to prove that I mean what I say.

Sorry I sound so self-centered at the moment... I will open up in due time. It's just that I have run out of inner strength... temporarily, I hope.

 

[DustyKat]

We have a Humira and Remicade Club, take some time and have a browse through them. Everyone is different but many have had very positive outcomes with these treatments......................

http://www.crohnsforum.com/showthread.php?t=6500

http://www.crohnsforum.com/showthread.php?t=4544

Seek out that second opinion and a third or a fourth if need be. Even in countries where it is acceptable to yell, kick and scream it doesn't necessarily happen that you find a good GI first go!

Dusty.

 

[nomad]

Thanks Dusty. Will follow these threads.

 

[Astra]

Hi Nomad
and welcome

I hope you can find comfort here with us, we know how you feel!
It's a shame that you can't question the 'Gods' but in your country that would be frowned upon, yeah? Why not just do it, suffer the consequences later, what's the worse case scenario? Will they imprison you? no. Shot at Dawn? no.
This is the modern world, they're out of date. Hope you find the courage to seek further answers and start by keeping a journal. Document everything, all your questions, and all their answers, if you don't get any joy, ask for a second opinion.
We've had a lot of discussions about intimacy and sex, we know where you're coming from! Very difficult for most of us!
Glad you found us, lots of friends here for you, all paddling in the same boat!
Lotsa luv
Joan xxx

 

[Brindle]

Hi Nomad,

Welcome to the forum. I am 40 and a year ago I had a proctocolectomy with perm ileostomy. Or as you referred to it as "chopping the how anal area off" LOL. It was the best move I ever made in regards to dealing with pain and discomfort from Crohn's. I do not mind having a stoma at all for the most part. Every once in awhile I will have a day that my pouch gets in the way or rubs me the wrong way, but it seriously has really been a positive for me. No more fistula's, tons less discomfort. And as for sexual relations, has improved beyond belief. I am not saying it is the right choice for all, but for me, without a doubt, one of the best things i ever done to lessen the impact of Crohn's and give me the most "normal" life i have had since DX in 1996. I really wish that the option would have been given to me years earlier.

Glad you found the forum, I think that you will really be amazed at all of the understanding and support that is available here. 99% of the time, there is always an answer or input to any question or concern. As far as support and understanding, I would rate that as 100% from the forum.
Hang in there,
Brindle

 

[nomad]

Dear Joan, Dear Brindle... again, many thanks for your words! Yes, I see very clearly that I have to take charge. It won't be easy, as I can already picture the doctor becoming angry when I tell her I often feel neglected and want/need more information, and want a saying in the decision process - but my health cannot come in second to the doctor's feelings. The thing is, these are very good doctors as far as their knowledge goes - top researchers, up to date... but there is just no human touch, no feeling that "we're in this together", if you know what I mean. My appointment is Oct. 28 AM. I'll report. Also seeing a psychologist Tuesday, in order to try to improve my mood (been feeling very very low for the last month).

Brindle, I am positively surprised (and oddly encouraged?) by your statement that the proctocolectomy was the best thing that happened to you. I've always regarded this prospect as a potential tragedy... Would like to find out more - how it works in daily life, how the perianal area ends up looking... is it very obvious? visible? (this is a major issue for me, for the reasons explained above - probably no big deal for patients in a marriage or stable relationship with a supportive partner, but a huge source of anxiety for someone who, like me, is currently looking for a relationship).

Will keep reading and familiarizing myself with this forum. In the meantime, I can truly say that finding it has already been a blessing. The loneliness and anger are still here, but I feel heard. Thank you so much for your support.

 

[Brindle]

Nope not obvious at all (proctocolectomy). Butt cheeks completely conceal where you are sewn up, Obviously you can see my pouch /stoma from the Ileostomy but I personally just wear a cloth belt to completely cover it. I just took a tee shirt that was snug fitting around my pouch area, cut it so that it looks like a tubetop, (which also works great) and all is concealed. I know that they make articles that you can buy but this is what i do. Feel free to send me a personal message if you have more direct questions.

 

[CDDad]

Hi Nomad,
I had a seton for a while so I know how that feels. Now, with my rectum and anus removed (colon too), I am doing so well. Sometimes, you just gotta remove the diseased parts that are too far gone.

Life is good again for me, and it can be for you too! Don't give up.
I had my surgery in April 2010, and now I training to run a 1/2 marathon in Dec. I'm up to 8 miles runs.

Good luck - I hope things work out well for you!

 

[nomad]

Many many thanks guys. It is reassuring to hear there is joy after such major procedures. My problem remains, though... if I am to be subjected to an ostomy (and doctors have certainly hinted at the possibility), I can't help feeling my chances of finding my other half will just vanish...

I may be completely wrong, but I keep picturing myself going on a date and then.... "ewwww, what happened to you?".... Sorry to sound a bit obsessed by this, it's just that I do need intimacy and love (like everyone else), and at the moment have none, and neither do I have any idea how it will come back into my life. I'm usually very easy-going in social environments, but this whole seton situation and possible ostomy have just done my head in.

I may pester you guys privately for a bit more info....

Thanks again - all the best!

 

[rottengut91]

I understand your concerns, especially because it has been discussed between my doctors and my husband and I that there may be a need to remove my colon or at least do a temp. ileostomy. My husband is a complete germophobe. I can't imagine how he will feel about his wife having her poop hanging in a bag around her waste. Back in Aug. I developed a perianal abscess/fistula. The abscess was surgically drained and a seton was put in. Nothing like fishing line hanging out your butt to put you in the mood. I don't really think my husband feels any differently about me sexually at this point. I definitely have not been in the mood. It is difficult, I don't know, I just don't feel the least bit sexy. Having the seton keeps the tract open, as I'm sure you already know. That means poopy juice leaks, I have no control over when and how much. I don't ever feel clean, I just feel disgusting. Now, today, I had poopy looking discharge from my vagina. I've suspected something was going on down there for a while. Now I'm convinced I've developed a fistula tract into my vagina as well. I just can't win with this stupid disease. I've already had three resections since being diagnosed in 1991. I'm only 35, most days I feel like I'm 85. I can't tell you how sick of this I am. I don't know, if it means not having to deal with these fistulas anymore and to have some pain-free days, maybe having an ostomy won't be so bad. I did have a temp. ileostomy after my first resection when I was 16. Believe me, it was not easy, but I was able to live my life as a teenager. I was a cheerleader and continued to do so, even with a bag. In fact, we competed and made it to Nationals in Jacksonville, FL that year. I even met and started a relationship with a really great guy. He was with me when I had the ostomy and after I had the reversal. I really know it's not impossible to find someone accepting of your situation. Love is an awesome thing. We all have our issues to deal with. Most of feel inadequate, you know, like we're not good enough for someone else. You will find someone who both loves and deserves you. I, myself, would have no problem marrying a guy who has an ostomy. When you love somebody, you love somebody, smelly poo and all. She's out there man, you just gotta believe your good enough. And you are.

 

[Brindle]

Nomad, I bet you will gain so much confidence once feeling good and not worrying about fistulas, setons and drainage. Not to mention the lack of pain and urgency in general. You will be a love machine, like it or not. .. Or who knows maybe you will fined another Crohnie on hear and hit it off, you never know...

If you do not have to have all of your Colon out and they perform a colostomy, i hear that if you irrigate then you only need to wear a stoma cap. No pouch. You can have total control of when you empty your colon. It was not an option or me, so i do not know all the details about it, but an sure that their are others that would have that answer.

Julie so sorry to hear about more issues in the lady region. That is just one more positive bonus of life with a pouch. I use to always worry that I would get a fistula involving my vagina. But not going to happen now. As i have no worries of Colon cancer as I have no colon to get cancer in. My husband is a true gem, it does not phase him one bit. I feel so much better physically after getting the pouch, I have been more frisky in this last year since surgery then the previous 3 years combined. (even with the new dx of Lupus and the body pains I have from that) lol

This was the perfect option for me, but i can only speak for me. It is truly a decision that only the person dealing with the issue can make. (unless it is an emer. and then I guess you just have to deal with it.)

Brindle

 

[SwtNdSpcy]

(this is a major issue for me, for the reasons explained above - probably no big deal for patients in a marriage or stable relationship with a supportive partner, but a huge source of anxiety for someone who, like me, is currently looking for a relationship).

If you are looking for "the Right One" then I suggest being honest. I have been through a few relationships since I was diagnosed. Some could handle it, or thought they could. Some couldn't. I was already diagnosed when I met my husband. I was honest with him, no matter how embarrassing it was. I figure if he runs the other way it wasn't meant to be anyway! Instead, he has incredibly supportive, understanding and loving. Staying with me in the hospital, helping me bathe myself after surgeries. Not even getting upset if I am too sick to cook dinner. There is someone out there for you who will love you no matter what!

 

[SwtNdSpcy]

When you love somebody, you love somebody, smelly poo and all. She's out there man, you just gotta believe your good enough. And you are.

LMAO! Too funny, but so very, very true.

 

[Astra]

Hiya Nomad,
I agree!
When I met my new partner 16 months ago It was the first thing I told him! Then I waited for him to run off with smoke coming from his ankles! But he didn't flinch!
I've only ever had one partner for 28 years, so it was a difficult thing to confess to, but it paid off, when you meet a new girl, be honest with her, if she legs it then it wasn't meant to be! She won't be The One!
You might even meet another Crohnie!
And, remember this always, no one is perfect, most peeps have some sort of baggage!
Hope you get the confidence back, and we're here to help you
xxxx

 

[nomad]

Wow, I am humbled at the response... thank you for your thoughts, your time, your solidarity. One thing that becomes very clear from all your words is how diverse the situations are, yet how we all seem to be going through similar feelings. I feel like I'm learning to remain optimistic thanks to your encouragement, and likewise I am sending my solidarity to all who have so far replied and shared their own difficult experiences. God bless and hope you feel better every day!

 

[Arby]

Wow... and I thought I had it bad...

Nomad, I feel for you. To have the pain and discomfort for all these years. I'm a 52 year old man. I've only had Crohn's for 1 1/2 years but it's been one continuous flare up.

Yep, Fistulas are the worse. I've had 3 so far. 2 small ones that closed up by themselves and a large one I've had for the last 6 months. Real fun...

At least with this website I know I'm not alone. I hope it helps you too.