Someone give us some hope...

[minorfall]

Just as a starter: I don't have colitis or crohn's... my fiancée does.
He was diagnosed with ulcerative colitis 3 years ago (before we met) and things have been relatively fine since (a flare here and there, but fine). Well, recently he was admitted to the hospital with a fistula. And they think he has crohn's.

Well, this is scary for both of us (obviously!). They still don't know what course of treatment they're going to do for him... surgery, medication, both... they aren't sure and he doesn't have another consult until next month.

It's just been so hard. And I don't really know what to do. I've researched the hell out of this. I've read articles, talked to doctors, talked to friends.

It just seems like there are so many HORROR stories out there. Someone give us some hope. Someone tell me everything is going to be okay. Someone tell us he can have a relatively normal life and he won't be bedridden most of the time. Just anything. He's terrified (and I'm trying to be optimistic when we speak) and he's really gotten me terrified. Is going to be able to hold down a job? Is our life going to be miserable? Are we going to constantly struggle and is he going to be in and out of the hospital all the time? Can he live a normal life and have a job, a family, a "happy" life or are we just in for a lifetime of struggles, depression, and stress? We're so scared. And I want to stay optimistic because he needs that. But it's really getting to me.

 

[silveyk]

Okay...there is some hope, Humira. In a recent study, Humira was shown to be highly effective in Crohn's with fistulas. Go to your local medical school's library and see if they have a subscription to IBD (Inflammatory Bowel Diseases journal). That has the latest and greatest articles on Crohn's treatment.

Dr. S (spouse of Crohn's sufferer)

Inflamm Bowel Dis. 2011 Jan;17(1):141-51. doi: 10.1002/ibd.21328.
Dosage adjustment during long-term adalimumab treatment for Crohn's disease: clinical efficacy and pharmacoeconomics.Sandborn WJ, Colombel JF, Schreiber S, Plevy SE, Pollack PF, Robinson AM, Chao J, Mulani P.
Division of Gastroenterology and Hepatology, Mayo Clinic, Rochester, Minnesota, USA. [email protected]
AbstractBACKGROUND: Data from CHARM, a 56-week, randomized controlled trial of adalimumab for patients with moderately to severely active Crohn's disease (CD), were used to evaluate outcomes of adalimumab dosage adjustment.
METHODS: Patients randomized to blinded adalimumab 40 mg every other week (EOW) in CHARM were the focus of the analysis. At ≥12 weeks, patients with flares or lack of response versus baseline (including patients who responded and then lost response) could move sequentially to open-label (OL) adalimumab EOW and then to OL adalimumab weekly.
RESULTS: Of 260 patients randomized to adalimumab EOW, 140 (54%) continued blinded EOW therapy and 120 (46%) moved to OL therapy. Of patients on OL therapy, 49 (19%) continued EOW therapy and 71 (27%) moved to weekly therapy; 36 (14%) completed the trial on weekly therapy. Of 71 patients on weekly therapy, 37% achieved clinical remission (Crohn's Disease Activity Index [CDAI] <150), 58% achieved CR-100 (CDAI decreased ≥100 points), and 63% achieved CR-70 (CDAI decreased ≥70 points). Of the 49 patients who remained on OL EOW therapy, 39% achieved clinical remission, 59% achieved CR-100, and 63% achieved CR-70. In a logistic regression, greater baseline CDAI predicted changing to weekly therapy. A model of dosage-adjustment cost indicated a modest per-patient drug-acquisition cost increase ($574 over yearly EOW dosing cost [$22,518]).
CONCLUSIONS: Of patients randomized to blinded EOW therapy, 19% moved to OL EOW therapy and 27% moved to OL weekly therapy for flares or lack of response versus baseline. Weekly therapy was associated with clear clinical benefits and a small cost increase.

 

[Crohn's 35]

:welcome: minorfall! I fully understand your fears, but until your fiance has a definate diagnosis and locations of his disease, it can be controlled. Everyone is different in the disease and it is not a misery in total life. Many people have flares and then they get the medication and nutrition suited for them. My whole family has a form of IBD, I have Crohns and my older sister has Crohns colitis and my brother UC and others IBS and stomach ailments. Stress is a culprit in this disease, it dosent cause it but aggrivates and can lead to flares. As the doc above me mentions Humira, there is also Remicade and Cimzia (if you are anywhere but Canada, no Cimzia yet). It would help us help you to know what country you are in and someone in your area can help you both get the help he needs. Try not to worry, take it one day at a time. Hugs to you both, everyone is here to help you. Welcome aboard! Hang in there!

 

[minorfall]

I'm actually in Canada.
I just don't know what day to day life is like. And I don't know if he's gonna be in constant pain/discomfort if he's going to be able to have a decent quality of life. Anything.

Thanks a lot for your response.

 

[Crohn's 35]

Has he doctor prescribed anything or at the very least pain meds? It is hard to get new doctors in Canada, not as easy to get second opinions, he needs help now. Just get the doctors to move it, he has suffered enough.

 

[Astra]

Hi minorfall
and welcome

There is always hope.
Once your fella is on the appropriate meds or pain killers, this disease can be managed, not controlled as such, but managed.
Stop reading horror stories! There are loads of success stories too, start reading them instead!
Ok, I don't have a miserable life, I hold down a full time job, I'm not in and out of hospital and I'm certainly NOT bedridden!
Struggles, depression and stress MIGHT happen, but to be honest, everyone goes thro that whether you're a Crohnie or not! That's life.
I've had a horrendous year, but it's so over! I've so moved on.
I'm now in remission and he'll get there too, honest.
Gonna be blunt here, sorry, but please stop projecting, you're seeing things that aren't even there or not even happened yet! This would trigger anyone off!
Take each day as it comes, and over time you'll see achievements and progress.
I wish you both good luck, and remember we're here if you ever need to vent.
lotsa luv
Joan xxx

 

[mizgarnet]

Morning MinorFall!
I am a Crohn's warrior since 1991. I have raised three beautiful children as a single parent for most of the time. I have a career and I am rarely out due to Crohn's. I am active and lead a normal (for me) life. I have learned what foods to avoid and what to do when stress overwhelms me.

Yes, there are some bad days and the bad days are plentiful until you get the right treatment and figure out the best foods for your body. The bad days make me appreciate the good days so much more. Bad days are now rare for me. Life is not all gloom and doom with Crohn's. It takes some getting used to and a lot of trial and error but a good life is totally possible.

Hugs!
Wendy

 

[Cat-a-Tonic]

Minorfall: I'm not yet fully diagnosed, but IBD (probably either Crohn's or microscopic colitis) is most likely. I've been ill for a year and a half.

I fully concur with what Joan has said - stop reading horror stories, those aren't indicative of what an "average" Crohnie's life is like. Yes, we flare from time to time. Yes, sometimes we get really depressed. Yes, on occassion we end up in the hospital. But my experience is that I've had zero hospital admissions, I work full-time and have only missed one day so far this year due to illness, I have friends and I have fun and I generally enjoy my life. I don't go out to eat very often due to dietary restrictions, and I am not as energetic as some of my friends & family so I sometimes need to rest more or I skip out on more strenuous activities, but I know my limits and I know what I'm capable of. I feel like I'm a stronger and wiser person because of my illness and in that way I'm thankful - so many people take their health for granted. Now, I never take the good days for granted.

Oh, and in addition to what Dr. S said about Humira, I would like to add that I believe Remicade can also help heal fistulas. So there's a couple of options for your fiance.

One more thing - if he's struggling with his illness, especially if he's feeling alone or like nobody else understands - please tell him about this forum too! We'd love to be able to support him and help him get through this rough patch.

 

[Sha0913]

Hi Minorfall,
There is plenty of hope out there. this is a disease that ca be totally unpredictable but a disease that when you are diagnosed and treated properly can managed. there will be hard times but you can't dwell on them.

I have Crohns and have since I was about 11, I have been happily married to a very understanding man( which has alot to do with my well being) for 10 years, we have four beautiful children (7,5,4,3), that have no signs of IBD (one has Celiac), We coach two soccer teams, two tball teams, and our oldest (7 yr old daughter) is a competitive ice skater, so in turn you can definitly have a semi normal life, the IBD will always be there but you can have a happy productive life. Hope this helps a bit. Shannon

 

[maxibear]

you have to hang in. you have lots of options. i have mod to severe crohns and im only using a mild drug, but i controll it with my diet. my only problem is a side effect from cipro, but i feel terrific and i was close to death from a obstructuion. try to get your hands into the most qualified gi and get a minimum of 3 opinions

 

[minorfall]

Thank you so much to everyone!
I wasn't so much reading these horror stories as having them told to me by people who would ask what he has...
Thank you all so much for your kind words and your hope. I really do appreciate it.
I have told him about these forums and he's very interested, so I'm sure he'll be joining soon too and you'll love him - he's a great guy.

It's just hard sometimes being the support when he gets almost no emotional support from his parents and we can't be together right now (physically), so they get him pretty down, he freaks out, I try to comfort him and stay strong and then we get off the phone and I freak out a little.

I guess that's to be expected, though. Can't be strong 100% of the time, everyone falters.

They'd put him on steroids to I guess keep everything in limbo while they determined what to do with him... he's seen his GP, GI, and another GI from the hospital we took him to. He's also had several consults with surgeons who specialize in this, so I think we've got a lot of opinions, but I'm still going to do my research and get as many opinions as possible.

Thanks again to everyone! I seriously feel like hearing your stories has lifted a HUGE weight off my shoulders. I always knew it would be a long road and a sometimes very difficult one (I know he had uc when we started dating), but it's just so nice to hear so many success stories! Thanks so much!

 

[minorfall]

Oh also, they're thinking of putting him on remicaide but have to wait and see what his body does off the steroids and also consult with the surgeons, GP, and several GIs.

 

[Sha0913]

I have to tell you after a really bad year, I was put on remicade 2 years ago and it has been my miracle drug:thumleft:, it is the only way I keep up with all of the activities going on in our life.

 

[Cat-a-Tonic]

Minorfall, it's wonderful that you are trying to be as supportive to him as possible, I'm sure he appreciates it. So many of us here have had issues with family/friends not understanding or not caring about what we go through, so it makes me really happy to hear from people like you who genuinely want to be supportive and to understand!

I'm sorry to hear that he gets no support from his parents, though. I had a similar problem with my father-in-law. He was very mean to me and he essentially said he simply could not imagine living what I was going through, so he chose to ignore it/deny it instead. I sent a bunch of information about IBD to my in-laws and it took some time, but my f-i-l is finally starting to understand what I go through and that this is something that I have to live with every day. He even said recently that it must be hard to not be able to eat certain foods, which is a major breakthrough for him as far as I'm concerned! So I guess what I'm saying is, even though your fiance's parents seem emotionally withdrawn from this now, things could change. I'd start by showing them some information about what your fiance's illness is all about. Here's a good place to start:
http://www.ccfa.org/frameviewer/?url=/media/pdf/livingwithcd52010.pdf

Good luck with everything and we look forward to your fiance joining the forum too!

 

[jkd1111]

Minorfall, I don't know who is telling your these horror stories, but don't listen. I got the worst information from caring friends when I was first diagnosed 30 years ago and it about put me in the nut house! Listen to the "warriors" here and you will be on the right path. Hang in there my friend, it will get better, trust me. I won't go into details, as the other posters before me have pretty much said it all and I totally concur with all of them.

As for Remicade...good choice. I have been on it for the past....wow, I guess it has been almost 7 years. My how time flies when you finally get some relief. I too have Crohn's with fistula. My first surgery removed multiple, as in over 20....yep you read that right. I have had 4 surgeries for them...All of this because I refused Remicade.

Finally, I got so fed up with with all the stuff I was going thru I went to the GI and said I was ready. He gave me a big hug and said "what took you so long?" Had my first infusion about a month later after we got all the insurance stuff handled and haven't looked back. Best thing I ever did.

I did go off it for about 2 years and tried Humira. Unfortunately, it didn't work as well for me, so I went back and was very lucky that I didn't have any reaction. So have been on it back on it now for about 18 mos.

I have to drive 250 mile round trip to this every 8 weeks, but it is so worth it.

Thoughts are with you and your fella. Keep us updated!

:hang:

 

[e13 boy]

Hi Minorfall,

All the replies on here you've had so far - i hope you feel more at ease.
Despite many horror stories their are success stories.
I had a rollercoaster ride for over 20 years with CD but thankfully i found the treatment which changed my life.
I turned the corner & i now lead a normal life.
Also on this forum is a member 'Helminthic Therapy' who like myself looked for alternative answers to combat CD - he also had fantastic success.

I wish you every success in finding the treatment which helps your partner.

Best Wishes

 

[sawdust]

minorfall, we've all asked ourselves these questions. Your fiancee is very lucky to have you.

I can't promise you anything, or even answer your questions, but I can tell you about me. I have had a Crohn's dx for 7 years. I have never been hospitalized (I have been there for tests and for one minor outpatient procedure). Even including doctor's visits, tests, and procedures, I have missed less than two weeks work all added together for Crohns in those 7 years. A "normal" and "happy" life are a bit more subjective, but I would say that I have both of these.

For me anyway, "terrified" comes from things I don't know and/or have no control over. That's why I come here and have made a concerted effort to learn about all this stuff, so to help take some of the unknowns out of the equation. Sure, there are horror stories out there -- this things isn't sunshine and lollipops -- but there are lots of success stories too. The more I read up on things, the more my point of view was able to see more positive things, better talk with my doctors, and be a better advocate for myself with my doctors.

I would stick around these forums. Good people with lots of experience to help you learn along the way. I like the patients' perspective here. It helps me understand it all a little better.

 

[denisk]

Anything is possible so just think positive and be strong that's the most you can do. The longest journey starts with the first step or something like that