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11-14-2013, 02:12 PM   #1
amber_griffin
 
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Flare Question....

My husband was Dx about 2 months ago after a 4 day stint in the hospital with a partial blockage. (We think he had been having them pretty much every two weeks, like clockwork for about three months prior, we just didn't know what they were). We actually thought he was getting morning sickness, since we had just found out I was pregnant. (I'm now 26 weeks).

I've read just about everything I can get my hands on, apart from scaring me half to death, its raised several questions.

1.I've read several places, that the first flare-up is usually the worst. Does that seem to be the case for any of you?

2. Does the disease get progressively worse? Or stay about the same?

3. If you could give advice to yourself, when you first got diagnosed what you it be?

4. How many have went into remission after your first flare?


Thanks in advance for all your answers..
Just a scared, Pregnant wife here...
11-14-2013, 02:28 PM   #2
SarahBear
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Hi, Amber! Welcome to the forum.

Unfortunately, I wouldn't count on the first flare being the worst. There's just no way to predict these things - even if it's true for many people (which I'm really not sure about), it may not be for him, and counting on that could just lead to disappointment and denial. However, if he's properly treated, his Crohn's may flare only slightly in the future - or even (fingers crossed) never again. I'm assuming he has Crohn's and not ulcerative colitis - is that correct?

The disease is not degenerative. It's too unpredictable. Like I said before, he may have a worse flare in the future, or he may never flare again. I'd think the most common thing is for flares to be about the same severity any time they occur - but once again, there's no standard.

Hmmm, advice. First off, make use of the resources you have, such as the forum (this is a great place for information, advice, and just an understanding ear) and internet research. If you're uncomfortable with your doctor for any reason, don't hesitate to find a new one who makes you feel at ease. Absolutely do not get hung up on a medication's side effects and become too worried to take it - side effects are potential complications and most of them are very rare; the risks and symptoms associated with untreated or improperly treated IBD are much worse. However, closely monitor any side effects when starting a medication and keep your doctor informed. Keep a food journal - detail everything you eat and drink and every single symptom you experience. This can help you find parallels you wouldn't see otherwise (also keep in mind, he may be lucky and no specific foods trigger his symptoms). Your diagnosis is a low point - things do get better both physically and emotionally.

Also, congratulations on your pregnancy!
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Diagnosed with Crohn's disease 12/6/08.
Have taken: Prednisone, 6mp, methotrexate, Pentasa.
Currently waiting for a new medication!

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Last edited by SarahBear; 11-14-2013 at 08:07 PM.
11-14-2013, 08:01 PM   #3
amber_griffin
 
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Thank you for your reply. Yes, he was dx' with Crohn's in the Terminal Ileum.
I guess right now, its just more of the fear of the unknown and all the horror stories, I've read over the last few months. And the pregnancy hormones aren't helping any either. HA!
11-14-2013, 10:58 PM   #4
Crohn's gal since 1989
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The first flare may seem like the worst because he has never experienced a flare before. Soon living with Crohn's will become "the new normal" and flares while a pain in the a** (pun intended) won't be such a big deal. Use this forum for info, it is a great resource!
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Bonnie

Diagnosed 1989
Asacol,Pentasa and Entocort (didn't work in 2005 and didn't work now)
Done with Prednisone 09/07/13
Azathioprine (Imuran)150mg no longer working
Developed allergic reaction to Humira injection!
Currently trying Remicade with Methotrexate
Still trying to get into remission!

Ileocecol resection surgery
September 14th, 2013.
55cm small bowel removed!
11-14-2013, 11:18 PM   #5
long time crohnie
 
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Glad I saw this and you Crohn's gal! I thought I was the only one on here whos been diagnosed that long! Fear is normal, especially when first diagnosed. An old friend of mine who has Crohn's helped me to learn to live each day for what it is. To focus on what I got done, not what I didn't. I was once someone who was always on the go, never planned just went. That all ended when I got sick. I lost a lot of friends, that was the hardest, they didn't understand that I was not doing this on purpose. Even my family still has a hard time understanding where I'm at and why I cannot do everything. My biggest fears when first dx were the what ifs, and that is completely normal. Read as much as you can and learn from others w the disease or those living with those w the disease. That's your best defense, at least for me it was, sure wish this site was around in '88 when they really had no idea what they were doing! Also, everyone is different!!! What happens with some may not for others etc... Hang in there, its a challenge, but if you are already this interested w his first flare, you will be a great support for him! I don't know where I'd be without the support of my parents and my wonderful husband!
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diagnosed: Crohn's desease 1988, Hiatal hernia, reflux, chronic pain syndrome
surgeries: 2 bowel resections(removed ilium; approx 2 1/2-3ft of small bowel and some of colon) 4-5 rectal fistula repairs; gallbladder and appendix removed
Current medications: Immuran(azathioprine)100mg, nexium 40mg, alprazolam, wellbutrin, lexapro, lomotal, donnatol, monthly B12 injection

In the midst of my first flare in 13yrs
11-15-2013, 01:41 AM   #6
Crohn's gal since 1989
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You're forgetting Long time Crohnie...in 1988 the internet wasn't invented yet.
11-15-2013, 12:41 PM   #7
long time crohnie
 
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I know! Scary isn't it
11-15-2013, 12:51 PM   #8
sarahk
 
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The first flare may seem like the worst because he has never experienced a flare before. Soon living with Crohn's will become "the new normal" and flares while a pain in the a** (pun intended) won't be such a big deal. Use this forum for info, it is a great resource!
Hi bonnie
Just wondering ....the cholestyramine isn't for crohns is it?
11-15-2013, 01:01 PM   #9
ronroush7
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I second the opinion about keeping a food diary. It will help if you know what foods might trigger trouble with the disease.

2
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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
11-15-2013, 02:54 PM   #10
SN8888
 
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You could do a search on the Specific Carbohydrate Diet (and others like that) and read up on that.
If there's a chance that the disease can be controlled by a careful diet, I believe that it's worth it to try that as early as possible. It's not easy and it might not work for everyone...
11-15-2013, 09:15 PM   #11
Crohn's gal since 1989
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Hi bonnie
Just wondering ....the cholestyramine isn't for crohns is it?
During my resection they removed 50cm of small bowel. My gall bladder is still producing the regular amount of bile salt, but now I have less intestine resulting in watery stools. Cholestyramine (Questran) is an anti diarrheal that helps the body re absorb the bile salt. Hopefully this normalizes soon.
11-16-2013, 12:19 PM   #12
long time crohnie
 
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I have the same problems w watery stool due to 2 resections and gall bladder removal. My GI doc put me on questran as well. It was originally used to help control those w high cholesteral, but they also found it can help those who may be excreting to much bile salts. Anyway, I hated it, and it didn't help slow my bowel down. I just couldn't stand the grittiness of the powder. I gaged every time! I hope it works for you though. I have tried everything out there to help my chronic D and bowel spasm and haven't found the right combo yet, diet or med wise. Frustrating!
11-16-2013, 12:50 PM   #13
Crohn's gal since 1989
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I have the same problems w watery stool due to 2 resections and gall bladder removal. My GI doc put me on questran as well. It was originally used to help control those w high cholesteral, but they also found it can help those who may be excreting to much bile salts. Anyway, I hated it, and it didn't help slow my bowel down. I just couldn't stand the grittiness of the powder. I gaged every time! I hope it works for you though. I have tried everything out there to help my chronic D and bowel spasm and haven't found the right combo yet, diet or med wise. Frustrating!
It's only been a week, but I have seen a huge improvement. I'm cautiously optimistic.
11-16-2013, 01:18 PM   #14
ronroush7
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I have the same problems w watery stool due to 2 resections and gall bladder removal. My GI doc put me on questran as well. It was originally used to help control those w high cholesteral, but they also found it can help those who may be excreting to much bile salts. Anyway, I hated it, and it didn't help slow my bowel down. I just couldn't stand the grittiness of the powder. I gaged every time! I hope it works for you though. I have tried everything out there to help my chronic D and bowel spasm and haven't found the right combo yet, diet or med wise. Frustrating!
You said you had your gall bladder removed. Sometimes, I see green when I go to the bathroom. I have been told that it could be gallbladder.

2
11-16-2013, 02:20 PM   #15
long time crohnie
 
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It took them several different tests to find that my gallbladder was not functioning properly. When they finally found that it was bad I was so excited. I thought that maybe that was the cause of my pain and abdominal problems. Unfortunately that wasn't the case. Pain and sx all returned. I was so disappointed. I was told Ive been in remission. No active disease. But recently had inflammation in the colon and put on prednisone only to find out 3 wks later, when he scoped me, that he found no active crohn's, microscopic or otherwise. Man i was pissed! To be put on that horrible drug for no reason. Im a medical mystery to them.
11-16-2013, 02:27 PM   #16
long time crohnie
 
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Thank God for this forum because I don't feel like Im such a mystery here. Lots of people it appears have a lot of symptoms w no apparent reason. I think that due to all the surgeries that causes the problems. Who knows...
11-17-2013, 09:40 AM   #17
sarahk
 
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Hi guys

I'm the same had really bad flare last week bad back ache and tummy ache but hi up in the diaphragm area which is where my crohns has returned but consultant seems to think that it was not a flare and nothing to do with my crohns. I am now wondering if it's anything to do with my gallery bladder. Waiting on bloods to see if inflammatory markers show anything. I'm confused and worried. Such a horrible disease .
11-17-2013, 02:39 PM   #18
long time crohnie
 
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SarahK..
Could be your gallbladder. Don't just rely on the blood work tho. Like I said, it took like 3-4 different tests, xrays included, for them to find that mine was not working. Hang in there and be persistent. You're your biggest advocate!
11-18-2013, 01:41 PM   #19
sarahk
 
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Bloods should be back by Thursday and I will take it from there. If there normal tho don't think they will do xray as Gi doesn't think it's Crohn's. I'll just go to my doctor and explain and ask for test for gallbladder and see what happens from there. I'll keep you informed. Thanks
11-18-2013, 04:13 PM   #20
long time crohnie
 
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Hang in there! I'll be awaiting your update. Hope all goes well
11-18-2013, 04:20 PM   #21
sarahk
 
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[U][/thanks feel terrible at the moment so think I will go docs tomorrow as dihydracodi not touching the tummy or back ache
11-19-2013, 08:03 AM   #22
sarahk
 
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hi there

called the hospital this morning . CRP 11 and im aneamic.nurse said crp not that hi but higher than should be so sounds like i was right it is a flare even tho GI adamant it wasnt. thyve got me a bed and im going in in the next hour to have IV steroids as the 1s ive been taken still not kicked in and told them i cant go another nite with this pain!! hope your ok and ill keep you updated
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