HealingWell
Search Close Search
☰

for the people who are in good, long-term relationships

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 6/25/2010 11:42 PM (GMT 0)
What were the signs that let you know that your partner loved you, Crohn's and all, and would be there for you no matter how sick you got?

And, conversely, what are the warning signs that lets you know that a partner will *not* be supportive in illness?


We've had a lot of stories about good and bad relationships here, but I thought maybe it might be helpful to find some general rules of thumb?

Ivy.
Posted 6/26/2010 12:01 AM (GMT 0)
I've been with my boyfriend for a year and a half.  I met him online, and at the time that we met in person I was one week off prednisone (HORRIBLE MOONFACE!!) and I had an abdominal fistula.  I hid the fistula from him for months, until I ended up having to have surgery to repair it, then I explained it to him.  He was there with me in the hospital and stayed with me for 4 days.  He's been with me through the good and the bad.  He's extremely supportive and caring. 

He got heavily involved at this years Take Steps for Crohn's and Colitis walk.  He made us team t-shirts, and his whole family donated money.  I've told him my fears about the future, having kids, money issues because of medical bills ect ect...nothing seems to scare him away. We are both only 23 years old, and for him to be so mature and take on so much with me blows my mind.  He is truly ment to be in my life.

Here's a couple pics of us at the walk. =P

http://www.facebook.com/mgebhardt#!/photo.php?pid=5557255&id=500407007

http://www.facebook.com/photo.php?pid=5557254&id=500407007

Posted 6/26/2010 12:04 AM (GMT 0)
I'm not sure there was a "sign". But: My husband worked with a woman who had Crohn's and was single and looking for a mate. Every guy she met would run the other way when he found out how sick she had been. She actually had some pretty bad spells of extra-intestinal manifestations, to the point that she needed to be in a wheel chair at times. This prompted a serious talk for us about how he really felt about my having Crohn's and would he have married me if we had known before we got married. He said he probably would have walked away, but it would have been the biggest mistake of his life. To this day, I think that probably is the sweetest thing he ever said to me, because I know he is in this no matter what. When things are bad, I don't have to worry that he will walk away or give up. We have been together for 30 years and as of August we will have been married for 25. Not many people make it that long and even less make it when there are such obstacles in their way.

I truly believe that if you find the right person you will make it through anything, and if it isn't the right person then anything can tear you apart. And you should never settle for less than the perfect person. If you haven't guessed by now, I am a romantic at heart.
Posted 6/26/2010 12:13 AM (GMT 0)
My poor husband - I was fine while we dated and then literally got sick the day we married. I had a fever when we left our wedding reception and promptly started the worst flare up I've had in my history. In the first 6 months of our marriage I was in the hospital 3 times and was sicker than I've ever been. I don't know how he handled it, but we both have the same goals as far as our faith/religion goes and as far as marriage/family goes. So, I'm sure that was an anchor for him. I know he was stressed out terribly, but he was so good to me. One thing that really stands out to me is how he would prepare my food. I know that sounds ridiculous, but I HATE food when I am sick. I don't want to cook or even go to the effort of making a sandwich. I just can't do it. I'd rather starve. When I was at my worst I would have to get up in the middle of the night to eat, knowing that it would make me sick, but that I would be sicker if I didn't eat. So that I wouldn't have to stress about making food, he would make 3 or 4 things for me every night - a sandwich, some cut up fruit, whatever, so that when I woke up I could choose whatever I felt would go down easiest. It may sound like "so what", but to me it was HUGE because I just couldn't bring myself to do those little tasks, and he made my life so much easier for it. He has literally seen me at my WORST and he's still here. This year we'll celebrate our 9 year anniversary. He's been through hell with me, but he keeps hanging in there. I can't seem to gross him out or stress him out enough - thank the Lord for that and for him.
Posted 6/26/2010 12:19 AM (GMT 0)
These stories are a tonic for the soul.

Please do keep them coming...

Thanks.

Ivy.
Posted 6/26/2010 1:14 AM (GMT 0)
I have been with my boyfriend for 7 years now. When we first started dating I didn't tell him about my Crohn's because I was in remission at the time. Only 6 weeks into our relationship I had my 2nd all time worst flare and ended up in the hospital for a week. The day I was checked out of the hospital was the day I was moving apartments, my lease was up and everything had to be out and moved by the following day. Needless to say I hadn't packed or done anything because I had been so ill and in the hospital. At this point he hadn't met my family yet either. He packed and moved my entire apartment with my parents and brother in 90 degree heat. I never even had to ask he just started making sure everything was getting done and that I was resting in the air conditioning not worrying about anything.
To this day whenever I am sick, he takes care of everything and makes sure I am taking care of myself. He always acts like what he is doing is no big deal. To me all the things he does when I am sick is a big deal, because I usually can't do it myself!

I think we are all very lucky people who have found the right person who understands and steps up when we are down. You will know when you have found the right person because even though Crohn's disease is a very serious and debilitating disease at times, the right person makes life easier for you when you aren't at your best and it doesn't change how they feel about you.

On the contrary, the person I dated before him I knew he wasn't the right person because he didn't want to talk about it, acknowledge it, or learn about it.
Posted 6/26/2010 1:52 AM (GMT 0)
I can't speak for the Crohns dx as I am only one month out for my dx---------

But, as for my husband, Tom, it will be 25 years on July 13 this year....married to my LOVE of my LIFE.

One month after marriage, I had a huge ovarian cyst that was torqueing the ovary, I needed emergency surgery and had a bikini line scar (no lap)-- he was a total care giver. Thru the years, GYN issues, infertility, he went through all the testing... gave me the shots, etc, went thru the miscarriages, never did have a viable pregnancy. He followed me into therapy and we went to counseling over the infertility issue, he resolved faster then I did, and I continued counseling with his support for 2 years...... again, total caregiver/counselor.

I then, ruptured  3 c spine discs... 5 years of epidurals, pain management, and then, the dx of "you have to have surgery", the disc calcified and was half way thru the spinal cord. That was THE SCARIEST thing I THOUGHT could ever happen. I had C spine fusion surgery... Jan 14, 2009. Again, he never left my hospital bed, learned the art of catching vomit in a tub, while I am in a c spine collar, emptied the bedpan so many times, I lost count.  I remember telling his sister, "I would never be able to be a caregiver like your brother...." How will I ever be qualified to help him as he helped me?

On April 1, 2009, I am just out of my collar, my c spine surgery was a huge success! ROAD TO RECOVERY! And little did I know the worst April Fools joke is about to occur.

Tom thinks he has a kidney stone.... CT scan shows... CANCER. Renal Cell Carcinoma. AND Now I realize, THIS IS THE SCARIEST THING! He has lost two siblings to Cancer. I turned into a BULLDOG with his care, managed all of it, he was so sick. Used my resources at University of Miami and got him into THE BEST Urologist/oncologist 4 days after dx!  He needed surgery immediately, insurance FOUGHT IT for 2 MOS! I was on the phone every day, I spoke to supervisor after supervisor, the Dr got involved, I pulled out my durable power of atty-  On May 27, 2009...Tom goes in for surgery, a few complications, 5 hours later and he is in ICU. He spent 5 days in the hospital and I NEVER left his side, bathed him, literally slept on a cot next to him, measured his output, etc. HIS FAMILY WAS ALSO THERE--- especially his Brother. We came home from Miami and his brother was here in 2 hours and stayed for 3 days to make sure we were OK... Tom needed total caregiving, as he had to have the incision that literally cut his body in half. I was there, I was able to do it, I had to. I WANTED TO..... Now, I continue to manage all of his follow ups... and attend every doctor visit with him, as he attends every visit with me. His Urologist/Oncologist was actually very instrumental in helping ME get a dx and a second opinion on the Crohns. We email regularly with him. he saw me once in Miami- alone, and said, WHERE IS TOM, You only TRAVEL IN PAIRS!?

Today- Tom had a colonoscopy/endoscope, the GI (mine) did the procedure, and felt very good about the findings... small things here and there, but she felt confident --- and she checked in on me, while there.

So--- I know Tom will be there for the Crohns... as I will be there for him...and, I have to say, His brother is also there. He was the ONLY person I allowed to come to the hospital this past Month... the BROTHERS advocated for me-- and straightened things out with some nursing issues! His brother has recently been dx with parkinsons... THE THREE of US... will BE THERE... for each other.

Kim in FL

Posted 6/26/2010 9:27 AM (GMT 0)
There are no signs as such when you are dating I dont think. But be honest with them and let them know you have crohns.I did and still after 2 years I am with the same person,we are now engaged to be married as well.
He is very good, it is usually him that points out all the toilets where ever we go, its him that usually tells me to sit down and relax as he can now tell when I'm having a bad day without me telling him, and he knows if I have to go to the hospital and things like that.
I am lucky to find such an understanding guy but it doesnt always happen. My ex husband was not supportive at all and he just used to make comments like, you got stomach ache again! and when I was flaring badly and off work he used to always comment about me being off and I still ended up doing all the housework and cooking etc regardless.
But now I am blessed and am thankful for what I have now and wouldnt change these past 2 years,except for maybe not having crohns to contend with at all!
Posted 6/26/2010 11:29 AM (GMT 0)
I have been married for 26 years. I made a decision to love this women and be married no matter what a long time ago. She did the same. So, even if I am a pain or even if she does some things that makes me crazy, I know we will be together. I am blessed. It is a very different perspective when you enter into hard times, to never approach the issue with divorce as an option. Given we are going to married forever, what are we going to do about it? That is our approach and perspective and it really works for us. Truth be told I did not have a clue about this when I was married but learned this along the way. I am sharing this cause I really believe in it and I have a fantastic wife, 3 kids and life David
Posted 6/26/2010 3:28 PM (GMT 0)
I have known my husband for 34 years as we were first together as teenagers for 3 years off and on. I met him after I had recovered from my 1st flare of CD. In fact my oldest daughter is his child. We were very young and once I had our daughter I realized that her happiness and wellbeing needed to come first. At that time he was in no way ready to be a father, he was too busy partying and have a good time. So I made the decision to leave him.

Anyways I later met my ex husband and married him and he adopted my daughter. We were married for almost 13 years and had 2 other girls but ended up divorcing as he couldn't handle having a sick wife. While I was in remission I was dealing with other issues, specifically bad joint issues. I was single for about 7 years by my choice as I felt I needed to take care of my kids at the time. Luckily I was in remission in those years. My oldest daughter married and ended up moving to Chicago. To get her drivers license there she had to prove she was the same person with maiden name and married name. So she went the Soc Sec office to get a print to show the maiden name and married name were one and the same. I had never told her of her birth father. When she got the print out it showed two fathers names. Basically thru this print out I had to tell her the truth that my ex was not her father and that someone else was. Well she wanted to know her birth father, so I went to find him and in finding eachother again we reunited.

My husband now is the most amazing man in the world. He has been with me my worst years with Crohns, even been there doing wet/dry packings after I got an infection in my incision after my last resection. He loves me for me, not my illness. I feel like the luckiest person in the world. He is so gentle and caring with me. He understands there are days when we just have to stay home and watch movies as I feel bad. He never complains. This man massages some part of my aching body every DAY. I believe the success of our marriage stems from unconditional love. I love him in good times and bad and he feels the same for me. I am very spoiled and very blessed. We have been back together for almost 12 years and now married for almost 11.

Hugs,
Gail*Nanners*
Posted 6/26/2010 8:40 PM (GMT 0)
Neat story Nanners!

Kim in FL
Posted 6/26/2010 10:30 PM (GMT 0)
Well, I thought I was happily married; dated/lived together for 5 years, married for 25, two great kids now in their 20's.  In past 3 years went from perfectly normal colonoscopy to fistulizing Crohn's. Been through mesalamine and hydrocort enemas, oral mesalamine, Lialda, ER visits, Flagyl, Cipro, Pred, abcess, week's hospital stay, Imuran, now Remicade.  Extra-intestinal manifestations

stomatitis, reflux, nausea, fever, iritis, abcess.  Now the Remicade is controlling most of it, but still tired, can't eat much fiber, and don't think I will ever have the energy I did pre-Crohn's.  Funny thing is I only complain when things are really bad; like when I need to go to ER!  He was very unsympathetic, barely visited me in hospital, made snide comments about running to doctor for every little thing.  I felt like he thought I was faking it.  4 months ago, he tells me he doesn't want to be married anymore, and leaves..  I feel like after I stuck with him through thick and thin, and gave him best years of my life, he wants out as soon as I can't take care of everyone else anymore...  it hurts.

Posted 6/26/2010 11:22 PM (GMT 0)
Great thread idea Ivy
mine left
with a woman he worked with after yrs of being together
i dont think he really did get the support end of it all
but its okay i hurt n so does cait
we shall carry on
good thread n stories
keep em coming

lyn
Posted 6/26/2010 11:33 PM (GMT 0)
All the stories make me want to cry but in a good way if that makes sense. It is nice to know that people have support in this. I have been with my boyfriend for 8 years. Thought I had IBS when I met him and he was ok with that. Now I find out I really have crohns and he still here. He helps me through a lot of things and outs up with my sometimes witchiness that I can inflict on those around me when I don't feel well. (I am usually really nice though..I promise!!)
Posted 6/27/2010 12:00 AM (GMT 0)
I hope everyone with CD has someone to support them.  I was diagnosed 20 years ago, had three surgeries and multiple hospitalizations just from CD.  Also had ovarian cysts removed, hysterectomy and gall bladder removed - through it all my husband was my helper and advocate.  We'll be married 50 years this September and he's never complained during my bad times.  I can't imagine going through all these years without him.  He was able to take over with cleaning, cooking and caring for our home without a problem.  He's a real inspiration to our children and the rest of our family.

After many different meds - been on Humira for 2-1/2 years with no side effects or flares.

 

Posted 6/27/2010 12:55 AM (GMT 0)
Hmmm...my DH and I met at work...we both had similar beliefs...and he knew that I was ill before we became involved (heck, our first date was postponed because I was in hospital, not due to crohn's but still pretty darn sick, super high fever)even then he still wanted to go out with me...we went out for 2 years before marrying (but it only took less than 4 months to know we were right for each other)...during these 2 years my crohn's came totally out of remission and I visited the hospital more than I care to admit...and he was there holding my hand the entire time...

We have now been married for 7 years...and I am thankful that he actually LOVES cooking...even when I am feeling better, he wants to be the one in the kitchen...if only he felt the same way about the cleaning(but at least he does the bathrooms without complaint when I ask...Worth a million bucks right there! smilewinkgrin )

He was kinda introverted...so I kinda had to start up the conversation, but after that...no problem...and I just have a thing for IT guys! 2 nerds fell in love (I was a lab nerd when we met) cool
Posted 6/27/2010 9:10 AM (GMT 0)
When I met my wife, we both worked together. I was pretty up front with the health issues with her, and she did the same for me. She has RA and seems to be allergic to everything under the sun.
She was there with me through kidney stones before we got married, as well as a number of minor flares.
After getting married, she was there through a couple of major Crohn's flares, more kidney stones, a broken hip, and most recently, Guillian Barre' Syndrome. She's wiped my rear more times than I'd care to admit. She's cleaned up some nasty messes, and driven me to the ER more than a few times in the middle of the night. She's given me showers when I can't do it myself. She knelt next to me on the side of a mountain, in the dirt and prayed for me when I broke my hip. She's visited me nearly every single day I was in the hospital since we've been married. She's studied up on the Crohn's and Guillian-Barre' Syndrome so she can understand what I'm going through.

Worst part is that when she is suffering, I'm good for about a day or two, then I completely loose it. I don't look after her as well as I should, I run out of compassion really quick, and I don't help out when I should. Yet through 11 years of that she's continued to stick by my side.

When I met her I knew that if she could deal with severe RA, she must be pretty strong. She is. I always figured I'd be the one looking after her, but the roles have been completely reversed. She has always looked after me, and I've done a terrible job looking after her.

These posts have made me realize that I really need to do better.
Posted 6/27/2010 7:35 PM (GMT 0)
I've been with my fiance for just under 6 years now. We met while we were both in undergrad and living in the same dorm. I was very upfront with him before we started dating about my Crohn's and he understood a lot of what I go through with the disease because his sister (sadly) also has Crohn's.

He's a great person and is my rock through the bad times. He helps keep me laughing when things aren't so great. He listens to me talk for hours about medications and alternatives to treatment and things I have to do to keep myself going. He always helps me vent when I get stressed out (which gives me break-through flares.) He rubs my stomach for hours when my tummy is bothering me. I've spent so much time lamenting about this awful disease and being diagnosed ith it and I've been lucky enough to have him just listen through my tirades. I've been fortunate enough not to be extremely sick yet, but I have no doubt in my mind that my fiance would stick by me through all of that.

I really do think he's the main reason I've managed to keep my sanity and my health for as long as I have...
Posted 6/27/2010 8:33 PM (GMT 0)
I have been with my fiance for over two years now and engaged for several months. He is so supportive, even to the point of checking on me when I have to spend a lot of time in the bathroom. We met through a mutual friend and I couldn't be happier. He knows that I might get sicker one day and he tells me he will be there for me. When we met, I was in remission, but steadily getting worse. He has been with me through a pred phase, where I gained 50 lbs in 3 months. He is now dieting with me and we both are doing well. He never complains if I have to cancel an appointment or social event and I'm sure he will be like this forever.
Posted 6/27/2010 10:39 PM (GMT 0)
I found out I had crohn's when I was married to my first husband. He was clearly not

going to be there for me.  When I was sick and went into the hospital he bascially never

even came up to see me. He then finally told me that he didn't want to be with me

because I was sick.  That was fine because I would rather know now then later.

He was a jerk all around and glad I got away from him. 

Fast foward to current husband.. when I started dating again I would

tell the guy on first date because hey, if you can't deal with it I want to

know NOW or there is no reason for us to continue dating.  It is a part

of life and I can't make it go away right? 

So current husband I gave him an ear full of it our first date.  lol 

He is still here.  July 4th will be 7 years and 8 that we have been

together. I love him more than life and he would do anything and

does anything I need.  I have been fortunit  that my Crohn's is not

as bad as most, but I do know if I should ever get real sick again

he will be right by my side.

Posted 6/28/2010 10:47 AM (GMT 0)
I never have had anybody, don't have anybody, and never will have anybody.
Posted 6/28/2010 1:16 PM (GMT 0)
Yes you will Tea!! There will be someone special just for you.
Posted 6/28/2010 10:57 PM (GMT 0)
Hey, the whole point of the thread is to encourage those of us who haven't found a special someone yet, NCOT.

Please don't give up hope.
Posted 6/28/2010 11:03 PM (GMT 0)
I got sick 2 weeks after I met my husband, almost 3 years ago. He took me to my first colonoscopy. Even though I expressly told the nurse not to mention anything embarassing in front of him and to wait for my mom to get there, she decided to explain to my new boyfriend that I will experience "anal leakage" as I was waking up from anesthesia. We got married on May 15, 2010. He's been so incredibly supportive during this entire ordeal and understood when I just couldn't be "intimate".
Posted 6/29/2010 4:18 AM (GMT 0)
This is a great topic for those of us who feel like we'll be alone forever!

My "best friend" used to always say that he was never bothered by me being sick, until recently...I had surgery to remove my colon, was so sick I almost died, recovered, and then had surgery for a blockage. Obviously it's been a very trying 3 months. The night I had my emergency surgery for the blockage he told me over the phone that I am always in the mindset of  the patient, am a hypochondriac, complain too much to keep the focus on me, and remind people that I'm sick just for attention. Of course he is one of those people who never get sick, and he has become less supportive as time goes on. It's devastating, as he is the most important person in my life. I realize that these are signs that I need to be done with him, but at the same time, if my best friend can't deal with it, it makes it even harder to feel like I'll ever find a husband (who will see a whole lot more of me) who can.

Thanks for a thread to celebrate the good ones :) It strengthens my resolve to find someone who can love me no matter what.

✚ New Topic ✚ Reply
12