Crohn's Disease Forum » Support Forum » Partners, Family, Friends & Caregivers » Advice for moving forward with someone with Crohn's

01-06-2014, 05:37 PM   #1
Join Date: Jan 2014
Advice for moving forward with someone with Crohn's

This is my first post...I think my family and friends have tired from my story, and I know that they, unfortunately, can't really understand. I am hoping someone here can offer me some insight on what to expect going forward in a relationship with someone who has a severe Crohn's. First, the background: (apologies for the length) I have been with my BF for a little over 4 years. He is 41, I am 36. Before we met, he had his entire colon removed. After a couple of years of wearing a colostomy bag, he opted to undergo another surgury to create an internal pouch of sorts (its called a BCIR). This has brought its own complications. We met about 9 months or so after his 2nd BCIR surgery. (complications with his 1st). He seemed relatively fine. I was so excited to finally meet a "normal" guy, but we were taking things slow. A few months in, he began experiencing pain (or at least that is when he first started letting me know about it). Since that time, he seems to only to be able to go a couple of months without having issues related primarly to the pouch as his Crohn's seemed relatively under control. However, all of the steriods and antibiotics have done a number on his body, which is doctor told him was more like that of a 70 yr old man. This passed weekend marked my 7th trip to the hospital with him (severe and agressive Crohn's inflamation inside the pouch). I've lost track of the number of times we almost went to the hospital, or the number of times I have sat up with him at night as he struggles with the pain. I know it wears on him both physically and mentally. How can it not? But (and trust me I feel very guilty for saying this) it also is VERY draining for me. Every time he says that he doesn't feel well, or doesn't want to do something, etc. I find myself thinking "what else is new?" We just got back from a cruis, our 1st vaction together in 4 years. He spent one day in the ship's ER. Before the judgment comes, let me tell you that I KNOW how incredibly horrible I sound. He is a wonderful man, and I DO love him. Over the holidays he has talked nonstop about us getting married. Instead of feeling joy about the prospect of marriage, I am anxious about it...terrified actually. I have no idea what being the wife of someone so ill means. A friend of mine (trying to be helpful) said that you don't run into a burning house, you get out. As much as I love him, I must admit that part of me just wants to run in the other direction! I was hoping to get some insight from a family's pespective on what life in general will mean. We want to have children, but again I worry that a) that won't be physically possible or b) due to his limitations, I will essentially be a single parent. I just need some advice.
01-06-2014, 08:15 PM   #2
QueenFox's Avatar
Join Date: Dec 2013
Location: Sydney, New South Wales, Australia

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A warm welcome!

Thank you for your honesty and do not feel guilty about these feelings or thoughts, reaching out and posting this shows you do care and you are trying to find what is best for the both of you.

I have an odd perspective as I have crohns and so does my brother, watching him go through what I have previously is tough and I often feel devastated about what he may to go through emotionally/physically/mentally and what it will mean for him in life. Lately I have found the best thing was to sit down and chat to him about this - open and honest. Having crohns myself I know I am not offended or annoyed when my boyfriend or brother brings concerns up with me - I feel relieved and happy to discuss, some honest truths may hurt during the conversation but I rather them said then let them stew under the surface. If me or my brother know each others concerns we can at least try to address the issue and try to fix things. Our most recent debate was over the use of our commonly shared bathroom - two people with crohns sharing one bathroom is a sitcom in making sometimes!

It is definitely tough knowing what may be the future with crohns, especially when someone is having a bad flare or other issues going on. These problems though are often temporary and can often be managed. There are many treatment options out there now and Crohns does not mean a life of constant illness. Discuss with your partner that maybe you could both (not just him) look into and research a possible returning to an external ostomy ,other medications, getting a second opinion from different doctors. The knowledge I have of BCIR's isn't much but I do know that because there are very few surgeons who do them if you have troubles with them it is hard to find a good quality doctor who understands the intricate details. Once your partner finds the treatment which works for him (and you) he should be able to go back to being happy and healthy. There may be a few hiccups along the way but if you think its worth it you can manage as a team.
01-06-2014, 08:48 PM   #3
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Join Date: Jun 2006
Location: Halifax, NS, Canada

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I believe (but it is just my gut talking) you already know what it is you are going to do. It is a difficult decision, and I wouldn't try to influence you one way or the other. Thing is, this is one nasty, unpredictable disease. And all the best intentions and well wishes are not going to influence it. There are absolutely no guarantees with this disease, EVER!

A friend celebrated his 46th birthday quietly. Didn't even have a drink. The day after, his front tire blew. They pulled the plug 2 days later. I hate going to surprise funerals. Another lady I knew went to the ER. Stubborn flu... turned out it was AML. Eight months later, another funeral. She didn't even make it to 40.

I was in hospital... AGAIN., feeling a little sorry for myself. They wheeled in this young fellow. 32.. Routine lapro GB surgery. Right? Wrong. Inoperable stage 4 cancer too big to do anything with. Doctors discussing his prognosis in the hallway like us patients were invisible. They gave him zero chance of reaching his 33rd birthday. I don't know if they were right. All I know is I stopped feeling sorry for myself.

You say this is a great guy. Then enjoy while you and he last. Nobody is guaranteed tomorrow. Not him. Not you. If things get too bad, for either of you, then walk away.

Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
01-06-2014, 09:02 PM   #4
Join Date: Nov 2013
Location: Burlington Ontario

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Very well said Kev! I have a very good friend with MS. While she was dating her BF, his father strongly discouraged their relationship due to her condition. His relationship with his father suffered, but he stayed with her and they are still over the moon in love after 10 years of marriage now. It's been a long road for both of them, and it takes a very special partner to be so supportive. You just need to decide if you can be that partner. If you have strong doubts, you may end up resenting him and the disease, but if he goes into remission soon, you may have many long years of good health! Stay positive, we may even have a cure some day?!
01-06-2014, 09:02 PM   #5
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Hi mary1995 and welcome to the forum!

Thank you for sharing your story. Being on the outside looking in really is hard and your feelings are completely normal. I have Crohn's but my husband doesn't yet he does have other health problems which sometimes makes me his caregiver for lack of a better word. He can't walk or stand for long periods of time without a lot of pain which means that we don't get out much and also means that he has a harder time controlling his weight. I'd be lying if I said that neither of those bothered me a bit. Sometimes I have to take care of him and our pets when he's sick yet many times we try to figure out who's sicker so they can relax while the other person does everything. He also seems to go to the ER more often then I do due to pain etc. I never truly knew how much it sucked going to the ER until I wasn't the patient.

All of this stuff is stressful and can easily put strain on your relationship. Luckily we have some similar interests so he is able to watch the same movies and TV shows I like and we are able to have long conversations. We take advantage of the days when we both feel well enough to do something and either go for a walk, go window shopping, go to the store together, cook meals together, be intimate with each other etc.

A couple of the most important things though is to be honest with each other and he needs to do his best to get well as mentioned. If his current doctor isn't helping him enough then you can talk to your boyfriend about seeing someone else. It can take time to get better though and its possible there will be relapses along the way but knowing that this is temporary and that things can get better will help you get through what you're dealing with now.

We're all here for you anytime.
Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 75mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel (endometriosis), Tylenol 3 (Osteoarthritis), Zantac 150mg 2/day (acid reflux), Klonopin 1mg (Panic Disorder), Imitrex 25mg (migraines), Zofran 8mg (nausea)
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 19 years and counting.
01-07-2014, 01:18 PM   #6
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Join Date: Feb 2012
Location: Hudson/Akron/Cleveland, Ohio
Hi mary1995,

First, a lot of people here understand, from both sides of the issue. I suspect we all think you are being smart to think about what you are getting in to.

I deal with both sides of it. My wife has pretty severe Crohn's. We've been married for almost 24 years and she had it well before I met her (and she had already gone through at least one surgery). Our first out-of-town trip as a couple, before we were married, she ended up in the ER; that was a very eye opening experience. But marrying her was the smartest thing I ever did.

About 10 years ago I was diagnosed with pretty moderate UC, but still, I do have to deal with many of the issues.

I can't you an answer, I don't think anyone can. I suspect there isn't "an answer".

I think you are smart to be asking these questions and to be going in with your eyes open. I have a couple of suggestions.

First, have you and your BF talked about it? Have you told him your concerns? Second, I don't suspect that will be, or should be, a single discussion. I would also suggest you consider getting some professional help with that discussion. There are actually counseling services that specialize in dealing with chronic diseases; my wife and I went to such a thing after she had to have her colon removed and get an ostomy. Third, you (or both of you) should talk to his GI doctor about your concerns. Though you can never predict completely, he might give you some insight into what the long-term will be.
01-07-2014, 04:39 PM   #7
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“Marriage is no way of life for the weak, the selfish, or the insecure.”
- To Sir With Love 1967, Sidney Poitier

I have been thinking of this statement a lot lately, from the other side ( I am the one with the Crohn's).

First, I thought oh well, then marriage is not for me if I go by that ... but then it occured to me, that its about how you see yourself. Are you considrpering yourself weak, or strong enough to deal with this ? Do you think you are considerate of your partner or being selfish ? and so on ...

Betweeb your lines, I sense you are a strong woman; you are fortunate to find someone you love who loves you back.
What could possibly happen ?

But hey, this is so individual. You will have to dig deep into your heart to find out your way.

Best wishes !

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