Share Facebook


04-29-2012, 09:39 PM   #1
KLBlakley
New Member
 
Join Date: Apr 2012
Location: Pittsburgh, Pennsylvania
Newly Diagnosed Spouse

Hi Everyone,

Normally I just read the posts on this forum, but I am in need of some support and advice so I've decided to write one myself. My husband was diagnosed with CD about 5 months ago after having almost constant diarrhea and losing weight rapidly. His gastro said that he had a mild to moderate condition to he started him on Apriso and Prilosec. He seemed to be improving, but now it just feels like he is at a stand still and is stuck in a cycle. He will be okay for two weeks (no diarrhea but still very tired) and then on the third week he will get diarrhea again for about a week. This has been happening for a few months now and it's like clockwork happening every third week on the dot. His doctor doesnt think it's a "flare up" because its not a return of the original symptoms/condition. When he has this episode he will have diarrhea about 2x a day (before he was diagnosed it was 10-15x a day) but the main symptom is the major fatigue. He is so low on energy that he can barely get off the couch or take a shower otherwise he gets dizzy. Even though he isn't constantly running to the BR, he still loses weight and misses work during these episodes. He was also tested for anemia about 2 months ago and started on an iron supplement. He was on ferrous fumerate for a few weeks but that gave give exremely bad stomach cramps and made him vomit. He was sick like this for about a week and during a dr. appt was told to go to the ER due to major dehydration and some other complications. He was in the hospital for a few days and they switched him to Ferrous Sulfate thinking it might be easier on his stomach. He has been taking it with food so far to let his body get used to it to make sure he doesnt get sick from it. He is now going through one of his episodes again now and I am just at a complete loss. He has lost 60lbs in the last 6 months and our lives have just completely turned upside down. Every aspect of our lives is suffering because of it. Not only the obvious of his health, but also our relationship, and his career (he is a part time police officer).
Sorry to ramble on so much. I dont have any close friends or family who are supportive. I pretty much only have my husband who I cant really talk to about it because he is depressed enough as it is and doesnt need my worries on top of it.
My main two questions for all of you are these.
1) Does anyone have any suggestions/advise for what may be causing or how to help these episodes with my husband? Anyone ever experience something like this?
2) I know Crohn's is a lifelong illness, but will it always be like this? How long does remission usually take to achieve?
P.S.-I should also add that while he was in the hospital he had a CT scan which his gastro said was really good. No inflammation or visible ulcers. From the looks of it he was in remission. So why is he still getting sick like this every couple weeks?

Thanks so much in advance for your help. Most of all thanks for listening!

Kara
04-30-2012, 11:17 AM   #2
mickey
Senior Member
 
Join Date: Dec 2011
Location: Illinois
Hopefully your doc has you writing down EVERYTHING he drinks and eats? Log the day, time, any other symptoms and their times,etc. and after a week see if anything adds up. Remember, it might not be the food in particular, but an ingredient within in that may cause a symptom (i.e., he can have tilapia, but when a sauce (usually with corn starch) is added, he gets diarrhea). That may help you see if there is any relation to a food or medicine he is taking (i.e., gets lightheaded within an hour after a med, or something like that). I hope he is taking vitamin supplements? Beer has wheat/barley,etc. in it and that may be a trigger, for example. Diet drinks have ingredients that can also trigger "d" - we are all different, so it is near impossible to guess, but you can log and find a pattern. It may take a month or more, but it will help you figure out the problem.

His body sounds like it is fighting something; but the puzzle is that you have to figure out what he is fighting....low immune system, bug, food sensitivities.. good luck
04-30-2012, 07:34 PM   #3
Jennifer
Adminstrator
 
Jennifer's Avatar
How does his blood work look and when's the last time he had it done? Many different vitamin deficiencies can cause fatigue and dizziness and a variety of other symptoms like being low on B12, vit D, Zinc Iron etc. With IBD we tend to absorb less nutrients. Even if he started a supplement for the iron doesn't mean he's taking enough of it. I get the 325mg tabs and take 2 once a day. That keeps me in the normal range (actually we'll see about that in a couple weeks when I get my blood work done again). One tablet just didn't do anything. He has to get his blood tested again to see if the Iron supplement is doing anything at all. If not he'll need more and if that doesn't work there are iron infusions. I have to get a B12 shot because I simply don't absorb it that much (also because of my resection).

It sounds like it could be vitamin and disease related. The meds he's on sound like they aren't enough and he's slowly going out of remission. It can take months to years to achieve remission with the right meds and it can take that long to go out of remission. Nothing happens over night.

Welcome to the forum by the way!
__________________
Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
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, 17 years and counting.
05-09-2012, 08:02 PM   #4
KLBlakley
New Member
 
Join Date: Apr 2012
Location: Pittsburgh, Pennsylvania
Thanks to you both for the suggestions!
In the past few weeks my husbands doctor has decided to put him on the next level of medicines, biologics. Right now he is just waiting to see which one will be approved by the insurance for the self injections. So far, Humira has been denied due to my husband only trying 1 other form of therapy but we are still waiting to hear about Remicade and one other which I cant remember the name of.

Have either of you had any experience with any of these medications? We are both very nervous! Thanks again! Hope you both are doing well!
05-09-2012, 08:09 PM   #5
Jennifer
Adminstrator
 
Jennifer's Avatar
Check out the subforums on Humira and Remicade in the Treatment section of the forum. There are other meds in there too. I haven't had either one just 6MP, Asacol, Prednisone, Entocort and Azulfidine.

Humira: http://www.crohnsforum.com/forumdisplay.php?f=59
Remicade: http://www.crohnsforum.com/forumdisplay.php?f=58
Treatment: http://www.crohnsforum.com/forumdisplay.php?f=16 You'll see the subforums listed above the threads.
05-09-2012, 10:04 PM   #6
mickey
Senior Member
 
Join Date: Dec 2011
Location: Illinois
No, I have not been on those meds.
07-21-2012, 06:13 PM   #7
marjaw
 
marjaw's Avatar
 
Join Date: Apr 2012
Location: muskego, Wisconsin
It's been a couple months, so how are things going? I am on Pentasa and Humira and will still get bouts of D every week or so that just leave me exhausted. No warning, no particular food eaten, it just happens. Even while I was on pridnisone. They last about 1/2 hour and I completely empty out to the point that I'm hungry! They make me very depressed because up to that point I feel good. Then it all comes crashing down.
It's affecting my relationship as well. It's very hard for me to explain to my husband how bad I feel emotionally and it's hard for him to accept that this is not going away. We are going to start going to a support group next month. We've been married alomost 30 years and will adjust. This one just happens to be a really tough adjustment
__________________
Crohn's Ileitis diagnosed Dec 2011
SBO 12/2011, 3/2012, 8/2012
Psoriasis since 1961
Psoriatic arthritis since 1988
Currently on Predinsone 40mg starting step down 9/5/12
Started Humira 4/25/12
07-22-2012, 06:05 PM   #8
KLBlakley
New Member
 
Join Date: Apr 2012
Location: Pittsburgh, Pennsylvania
I am so sorry to hear that and I hope that things get better very soon!!
My husband ended up being approved for Remicade and was also put on IV iron, so he has to go to the hospital once a week for the iron and is up to once every 8 weeks with Remicade. So far he has been responded very well. The remicade/iron pretty much worked immediately, so he has had no symptoms for almost 3 months now! It is such a relief that he can actually live life again. It's amazing what people take for granted (myself included) when you are healthy. When he was sick even going to dinner or somedays getting out of bed seemed near impossible. In these last 3 months has gained all 60lbs back that he had lost since getting diagnosed. Having said all of that...we are still constantly anxious wondering how long this will last as I know it will eventually hit again. But we are just trying to enjoy life as much as possible while he is feeling good. Trying to make sure he paces himself with the workload and gets enough rest for sure though.

I know its only a matter of time before things start looking up for you as well. And I know exactly how much of any impact it can have on a relationship. There were days when (and sometimes still do) wonder if we will ever have a real life (kids, house, him have a full time job). How long have you been on the Pentasa and Humira? And are you working? Full time? Just curious how it has affected you in that way too. When my husband was sick he could barely work part time let alone full time which makes me nervous for the future. I am actually considering going to grad school or getting a different degree to raise my income in case something were to happen in the future where he cant work full time so I can support us still. Sorry to ramble...Take care and try to stay positive!! Things will get better!
07-22-2012, 06:24 PM   #9
marjaw
 
marjaw's Avatar
 
Join Date: Apr 2012
Location: muskego, Wisconsin
I've been on Humira just over 3 months. My GI feels I am heading in the right direction and I do feel better but the anticipation of something happening is driving me nuts. Any little twinge and I tense up expecting the worst. I am calling my family doc tomorrow to get on anti depressants/anxiety. That combined with the support group will help.

I do work full time, about 45 hours/week running a hardware store. I've had days when I spent a lot of time in the bathroom and have recently been thinking about stepping down from management (less stress). Not sure if we can handle the pay cut though :-/. Maybe the anti depressants will stop all that silly talk!
Reply

Thread Tools


All times are GMT -5. The time now is 12:26 AM.
Copyright 2006-2017 Crohnsforum.com