New to Crohn's, any advice?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Wren12
Regular Member


Date Joined Jan 2010
Total Posts : 42
   Posted 1/29/2010 1:02 AM (GMT -7)   
Hi all,

Just recently diagnosed with Crohn's and needing a little guidance. I feel very confused by all of it at the moment. Seems silly when the basis of it is, you get stomach pains and you go to the loo alot lol.

I've been on prednisone since initial diagnosis but am starting on Imuran next week. (weaning of prednisone at the moment).

Any advice/warnings/good stories about this medication?

Thanks in advance,

Wren

teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 1/29/2010 1:49 AM (GMT -7)   
Hi Wren 12,
Welcome to Healing Well. This is the best place to learn about our illiness. The people are
very caring. Well its been awhile since I was on Imuran. The only thing I remember is
your doctor with do blood test on you.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital

in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.

My GI doctor has me on and Humira. B-12 injection once a month.
Also diagnosed with Rheumatoid Arthritis.


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 1/29/2010 5:21 AM (GMT -7)   
Hi and welcome to the forum. You should be able to get all of your questions answered here as many people have benn there or have done that.
As for Imuran, I was on it for a very short time as my body didn't really like it to much so my GI took me off of it., so I can't really give you a good answer but I'm sure someone will be along soon to help.
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications:Humira,  Asacol, FolicAcid,  Multivitamin, 1000mg Calcium, Vitamin D, Probiotics, Pepcid Complete, Questran,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/29/2010 7:35 AM (GMT -7)   
We have many folks on this forum taking Imuran or its sister med 6mp. These meds are good for helping folks reach remission and stay in remission. Be sure you do your regular blood tests as ordered by your doctor. Good luck and I hope it works for you.
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Harley Behavin
New Member


Date Joined Jan 2010
Total Posts : 11
   Posted 1/29/2010 10:33 AM (GMT -7)   
Everyone is different, but you will find we're all the same in many ways. I'm on Remicade infusions and that is all for now. See my GI doc next week, and I'm sure that will be changing. A side affect of Crohn's is Peripheral Arthritis, not everyone with Crohn's gets it, but I did. And I have to admit it is very painful. So I'm sure to be getting more meds soon. Hang in there your in the right place.

Wren12
Regular Member


Date Joined Jan 2010
Total Posts : 42
   Posted 1/29/2010 1:11 PM (GMT -7)   
THanks everyone for your welcomes and replies. Glad to be apart of this forum and also apart of a commuity that understands. I start the Imuran this morning so will see how I go. I think it's just that long list of side affects that gets quite scary and the thought of getting any of those on top of all ready not feeling well doesn't make me feel all that great. I was only diagnosed in late November but since then have only had about a week with little to no pain so really hoping these tablets do the trick. Harley I'm sorry to hear about the Arthritis, it must be awful. Was that a side effect from the meds?

Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 1/29/2010 1:20 PM (GMT -7)   
Wren
So glad you found HW! HW has been the one thing I can count on for support during rough times, or answers to questions only others in the same boat have!

I was on Imuran for a short period of time quite a while ago. It caused me constant nausea, so I had to switch meds, but as Nanners said, I'm sure others will come along who have had help from it. I hope it starts helping you so you have symptom free days ahead.
Becky

31 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D, sublingual B12, Coumadin


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/29/2010 1:21 PM (GMT -7)   
Joint pain sometimes shows up with flares. I also suffer with Osteoarthritis related to my Crohns, but I have had the disease for years before that showed up. With the Imuran, it can cause some fatigue and nausea when you first start it. You might need to switch to taking it at night to avoid some of the side effects. Also, you might get some hair shedding with it too, but by adding some additional Folic Acid and Biotin, that will help to stop it some. Hope the Imuran gets you into remission. And usually within time the side effects go away. Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8550
   Posted 1/29/2010 2:06 PM (GMT -7)   
When I took azathioprine (generic name for Imuran, basically), I had no response to it at all, not even side effects. Except that the second time I went on it, I ended up in a flare-up which took two months to end, but that could have just been a coincidence.

6-MP I did respond to, though. I got side-effects of nausea and the occasional bout of fatigue -- these were tolerable and disappeared after a few weeks. More sinisterly, in August the back of my right hand started to itch like crazy and developed a seriously frazzled appearance. I got several new moles. My frazzled hand healed, and the new moles went away, but it shook me up. If you're sensitive to the sun, be extra vigilant about sunscreen protection if you're on 6-MP/Imuran.

Another thing to remember is that 6-MP can work where Imuran didn't and vice versa, despite the similarity of the two drugs. I hope Imuran works for you, but if it doesn't its sister drug is still worth trying.

Good luck :p

Wren12
Regular Member


Date Joined Jan 2010
Total Posts : 42
   Posted 1/29/2010 3:54 PM (GMT -7)   
Hey thanks for all the advise. Greaat to hear from you all. NIceCupOfTea, I have heard that Imuran can increase the risk of melanomas. A bit scary so have loaded up on the sunscreen and have my het ready. Not going to take any chances with it. Hoping that the nausea won't be too bad. Have braced myself for it though so if it happens, it happens. I"m in the middle of a bit of a bad flare up now, though I've only had about a week of feeling 'good', so hoping that the Imuran will help out as I don't want to have to increase the Prednisone again. I only had a week and a half left and I would have been of it...

artist guy
Veteran Member


Date Joined Jan 2010
Total Posts : 1373
   Posted 1/29/2010 4:31 PM (GMT -7)   
I have been on imuran and pred going on my 5th day. so far so good, but I'm sure it's the pred. not the imuran right now, 40 yr suvivor of cd. was on entocort, good for my small bowel but not good when it started to challenge my throat and mouth, so just switched. just went for my first moutain bike ride after being out of the saddle for 1 month due to flare. a little tired but good. I need to get fit for my may 3 dayer in sedona. baby steps. let's cross our finger

artist guy


Wren12
Regular Member


Date Joined Jan 2010
Total Posts : 42
   Posted 1/29/2010 6:52 PM (GMT -7)   
Artist Guy that's great about the bike ride. Must feel good to be able to do it again. At the moment, I'm a little house bound. I try to take my daughter for a walk in the pram but usually don't get too far. Which is not good for her but hopefully things will improve soon. Day one of the Imuran and I've been very dizzy and a bit nauseous but hoping that this will get better and not worse.

artist guy
Veteran Member


Date Joined Jan 2010
Total Posts : 1373
   Posted 1/29/2010 7:30 PM (GMT -7)   
please keep us posted

artist guy


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/30/2010 9:02 AM (GMT -7)   
Remember to try taking it at night if the side effects bother you.
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

onthecan
Regular Member


Date Joined Mar 2009
Total Posts : 318
   Posted 1/30/2010 11:58 AM (GMT -7)   
Welcome 2 healing well like everyone said u questions will b answered here cause chances that some of us went through a lot of the same things well I should say most of us u will learn the ends and outs from your GI get a good one one who will listen 2 your questions and hear your concerns not someone who is a pill pusher there useless really u will need a support group this is s great place 4 support as well as family and friends but remember that they won't understand what u r going through no one does everyone is different but they can be there when u need them...Good luck keep us posted and keep on posting your questions there is always someone that is either going trough it now or has gone through it...Jenn
Had Crohns 17 years had numerous bowel resections,fistulas,fissures,hemmies,kidney problems,fibro,arthritis,dignosed at 13 had GI feeding tube,nasal feeding tube,cental lines,ports,4 ruptured bowel emergency surgeries,TMJ,depression,current meds are Hydromorphone,30 ,Hydromophome,8 ,Ketoprofen,100 ,Trazadone,50 ,Lorazepam,10 ,Zopliclone,5 ,atriplyine,75 ,Losac,50 Tylenol Athritis ,B-12 injections ,Iron injections ,Gravol,75 Predisone,5mg ,Humira,40mg once a week.Still looking for the doctor with all the answers if you find him forward him to me please.P.S my bathroom is the nicest room in my house cause i spend so much time there,i am thinking about installing the computer and maybe a hot-dog stand.


Wren12
Regular Member


Date Joined Jan 2010
Total Posts : 42
   Posted 1/30/2010 2:13 PM (GMT -7)   
Thanks Nanners, I think I will try again today taking it this morning and see how I go and if it's still not good I will switch to night time. I just get worried with the dizziness, when I'm on my own.

Thankyou for the welcome Jenn. It is good to be able to talk to people that understnad and are very knowledgable. I do have a good GI. At first he seemed reluctant to tell me too much about what was going on but I understand now that he didn't want me to get more stressed as it seems that that is one of my biggest problems and triggers. But once I started to show some signs of improvement he opened up and things started to seem brighter. (Even with the future outlook of having Crohn's). He told me that we just have to accept what we're given and do the best that we can with it. So that's what I"m going to try to do. IT's very hard some days but I think to myself that if todays a bad day, then maybe tomorrow will feel better and I"ll be able to do something fun to make up for the bad day.

I think myself lucky as compared to alot of people on here, my Crohn's is not that bad. I remember talking to a nurse one time and saying that I guess it's just one of those things and she said 'Yes but not when it happens to you'.

Toodles
Regular Member


Date Joined Oct 2006
Total Posts : 405
   Posted 2/5/2010 7:31 PM (GMT -7)   
We were and are all confused. It's a complicated disease, but we come here for help soooo WELCOME! tongue
 
New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, December 06, 2016 1:25 AM (GMT -7)
There are a total of 2,733,393 posts in 301,111 threads.
View Active Threads


Who's Online
This forum has 151251 registered members. Please welcome our newest member, Danann.
220 Guest(s), 1 Registered Member(s) are currently online.  Details
Girlie


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer