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02-12-2013, 10:10 PM   #1
Rejhan15
 
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My Story

Hello....my name is Rejhan and i'm an 18 year old guy with crohns disease....diagnosed in september of 2012 after i had a ton of stomach pain and wasn't eating and lost about 12 pounds within a week....so i was in the hospital for about 3 days and was diagnosed with crohns disease...and when they told me there was no cure i didnt know what to do....so i've had this disease since then..or maybe even before because a year before that i was hospitalized with an inflamed colon...so they started me on prendisone and that didnt really help so i began humira in october and have injected every 2 weeks till this day and last week i went to the doctors because i've had a lot of pain like my stomach feels bruised when i touch it..everytime i urinate i have a ton of pain in my stomach i get cramps constantly....and the ct scan showed there has been no improvements from september till now...this really got me depressed....so my doctor changed my treatmens to humira every 10 days and wants me to do imuran as well....i wonder when would i need surgery?....i'm kind of scared of doing imuran and humira because the cancer risks...but idk im just so stressed about this problem because seeing my mom cry because of me..it kills me...so thanks for reading my story sorry that it's so long
02-12-2013, 11:51 PM   #2
Trysha
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Hello Rejhan
Sorry to hear you are having such a bad time but hopefully the medication will soon click in and help you.
We are always concerned about the bad side effects but have to keep it in perspective.
There are many success stories after treatment with biologicals such as Humira and immuno-supressants such as Imuran.
I have had concerns, like you, and I have just started Remicade with some good effects.
It does give back some life to us.
With the treatment it can be possible to avoid surgery so choose to be optimistic, hard I know with all the pain and discomfort.But it can get better with the right treatment.,and go into remission.
There are some promising treatments in clinical trials right now so look to the future.
Maybe your GI would consider Remicade if Humira, is not working for you.
All mums worry a lot but I am sorry you are subject to her emotions just when you need support.
You will find plenty of support on this forum and there is lots of information that you can access.
Please keep in touch with us and let us know how things work out for you.
Feel better soon
Hugs and best wishes
Trysha
02-14-2013, 07:17 AM   #3
Angrybird
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Hello and welcome to the forum.

I am sorry to hear that the tum has not yet settled for you, as mentioned it is possible with the right treatment for the tum to settle down, I have been on the Imuran myself and it did a great job at settling things. When it comes to potential side effects with meds it is best to think that these are things that may never ever happen and the risks of untreated crohn's is a definite especially when it is known to be active. Out of interest have any type of dietary changes been discussed with you? What are you currently able to eat? Do you know whether any of your vitamin levels have been checked?

There is a lot of helpful info and support here for you so do have a good look around.

AB
xx
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Angrybird

DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
Current Meds: 6-MP 75mg,B12 injections every 3 months
Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
02-14-2013, 07:26 AM   #4
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I am new to this site too. I got diagnosed with crohn's over 2 years ago. I had almost one year of trying to find a drug which helped me and lost 2.5 stones in weight during the process. Eventually my doctor sent me to the local hospital for IV treatment and after 2 visits my flare started to ease. I got 6 lots of IV and the it had to stop as the side effects were pretty huge, but it was enough to help me cope with maintaining my illness. I am now only on Asacol and it sees to do the trick as I now only have some "bad days" during the month which I can cope with. The illness itself is life changing in my opinion, I cant eat if I am going out anywhere. The worst feeling is when you are on the phone either in a meeting or to a stranger and you have to go..... Rejhan I like you thought I was never going to get better, but you will believe me the doctors will find something that works for you.
02-14-2013, 08:08 AM   #5
Angrybird
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Hi Martha and welcome to the forum.

What symptoms do you get when you are having the bad days? Are you still seeing your doc for routine check ups?

AB
xx
02-14-2013, 08:22 AM   #6
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Hi Angrybird

I see my doctor every 3 months now, I was there every other week for a while. I used to sit in the waiting room at the hospital looking at all the other patients and thinking "why cant I look like that?" I seriously thought they would never find anything to help me, but the infliximab done the trick. My bad days are roughly 3-4 times a month. I have bloods checked every month and I have a support nurse to call for when I need advice. I feel actually really well and my weight is now normal. I looked like I had an eating disorder for a long time, but apart from being tired looking most of the time, I feel like im on maintenance mode, in between the feeling sick days :-)
02-14-2013, 08:39 AM   #7
Angrybird
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It may be worth having your vitamin levels checked,it is common with crohn's to have deficiences in this area and could contribute to how you are feeling. Do you notice whether certain foods set off those sick days?
02-14-2013, 08:54 AM   #8
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I get my vitamins checked and at times need to get a boost injection for them. Thankfully I work from home, I really honestly do not know how some people can go out and do a 9-5 job with this illness. I know certain foods will make me ill so I keep away from them as much as possible ie anything creamy or oily. Apart from that I can sometime eat a packet of crisps and it can be enough to keep me in doors. I can handle the pain and the toilet, but the sick feeling I get I hate :-(
02-14-2013, 11:02 PM   #9
***Lisa***
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It may be worth having your vitamin levels checked,it is common with crohn's to have deficiences in this area and could contribute to how you are feeling. Do you notice whether certain foods set off those sick days?
Great advice. What is your Vitamin D level? If you don't know, you need to ask your GI what it was the last time they did your labs. If they didn't test for it last time, next time ask them to test your D level, too, along with the other vitamins they generally monitor like B12, Iron, etc.
02-14-2013, 11:44 PM   #10
Rejhan15
 
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Hello and welcome to the forum.

I am sorry to hear that the tum has not yet settled for you, as mentioned it is possible with the right treatment for the tum to settle down, I have been on the Imuran myself and it did a great job at settling things. When it comes to potential side effects with meds it is best to think that these are things that may never ever happen and the risks of untreated crohn's is a definite especially when it is known to be active. Out of interest have any type of dietary changes been discussed with you? What are you currently able to eat? Do you know whether any of your vitamin levels have been checked?

There is a lot of helpful info and support here for you so do have a good look around.

AB
xx
i haven't had soda or anything like that since my diagnosis...i don't eat a lot of like lettuce...soup bread all of those make my stomach flare up a bit, not sure about my vitamin levels i will have to ask my GI when i go for my labs next time
02-15-2013, 03:10 AM   #11
Angrybird
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Please keep us updated on how you are getting on.
02-15-2013, 04:02 PM   #12
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Doctor got me back on 40 MG of prendisone....still on humira every 10 days and he wants me to go on imuran as well....he doesn't want me to get surgery because i'm so young...but would surgery be the better option? anyone with experience
02-15-2013, 04:19 PM   #13
Angrybird
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I would only say to take the surgery route if you have scarring inside causing the problem, if it is inflammation then it is worth seeing if the Imuran can help. I say this because an op will not stop the crohn's from coming back either at the incision site or elsewhere so it is a lot to go through to then potentially been back to square one.
02-15-2013, 06:19 PM   #14
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well i have a severe case i guess the GI said or near a severe case....i had a ton of ulcers and inflamation and apparently humira helped with none of that from when itook it till now...i had the actualy colonoscopy pictures and info from when i was in the hospital but i seemed to have lost them....what a shame :/ but i love all the support here...so much easier when you know there's other people out there with this disease who are there for you and care to hear about how you are doing..thanks EVERYONE...really mean it
02-15-2013, 08:29 PM   #15
Farmwife
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Hi and welcome,
I'm so sorry you have to go through all this. It just breaks my heart for and your mom. I don't have IBD but my girl does. Tell your dear mom that we have a wonderful forum for parents here. It's a great place of support and knowledge. Our children are all ages.
Keep your chin up and know that you WILL get into remission...in time.
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
02-25-2013, 02:45 PM   #16
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Heres an update...well i was still in a ton of pain still depressed about it so i talked to my GI and he told me go to the ER which i did....had an ultrasound..ctscan all that and apparently my pancreas became inflamed as well and i had a really bad crohns flare up they said...still a ton of pain when i urinate so i called him again and he said if you dont do imuran the disease will NEVER get better..this kind of angered me because he's not willing to try anything else? considering getting a 2nd opinion what do you guys think? have you ever switched GI's?
02-25-2013, 03:03 PM   #17
Angrybird
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I have seen others here who have gotten a 2nd opinion because of their docs attitude so don't feel bad for doing this. What was done though to sort the problem with your pancreas? If your crohn's is still very active despite being on the steroids then I think this does need to be looked into further - when was testing last done to check on things inside?
02-25-2013, 03:13 PM   #18
Rejhan15
 
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I have seen others here who have gotten a 2nd opinion because of their docs attitude so don't feel bad for doing this. What was done though to sort the problem with your pancreas? If your crohn's is still very active despite being on the steroids then I think this does need to be looked into further - when was testing last done to check on things inside?
they did nothing honestly...just sent me home with more pain meds...and it's still active even after being on humira since like october/november...and changing it to every 10 days...an prendisone every day...im at 35 mg now...my last ctscan was like 2 weeks ago i believe and showed no improvement at all, i got an appt tmrw with my doctor to discuss my options whether its possibly surgery or what to do my doctor doesn't want to do remicade because he says its the same as humira so idk
02-25-2013, 04:27 PM   #19
Angrybird
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I think tests need to be done to confirm whether the problem is now down to scarring or inflammation, also ask about perhaps going onto a liquid only diet - you can get special shakes with the required calories or nutrients - to see if this helps ease your symptoms at least. They also need to check and see what is going on with your pancreas.
02-25-2013, 04:43 PM   #20
Rejhan15
 
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I think tests need to be done to confirm whether the problem is now down to scarring or inflammation, also ask about perhaps going onto a liquid only diet - you can get special shakes with the required calories or nutrients - to see if this helps ease your symptoms at least. They also need to check and see what is going on with your pancreas.
so what should i tell him tmrw?...what kind of tests how would i know if i would need surgery or not?....after the ultrasound they said something in my pancreas was in higher numbers than normal i believe the normal was 40 and i had 56..no clue
02-25-2013, 05:21 PM   #21
Jim (POPS)
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Rejhan, Thank you for youe story. I too get depressed sometimes, I was DX with crohns right after I retired at age 62, thinking it was now my time to have fun in life. It slammed me down. I had 3 operations in the first year, but I had it for a long time and just lived with it. I also take Imuran and for the first month I also had 2nd thoughts about it but as time went on it didn't bug me as much. I can tell you this. No one can tell if or when you may need a operation, but I find that if I keep my head up I enjoy life alot more than thinking I will never get better. Even when I'm in a flair if I keep my head up I go through it and still enjoy life. I'm new to this like you and we both don't know what crohns has in store for us. I know that things can change for the better in just one day. I try not to think about "what if" because I don't want to go through life thinking that I will be sick forever because that is not true. We WILL get better. Trust me. WE WILL.
02-26-2013, 09:34 AM   #22
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just back from the GI office....they want me to start on imuran as wel and she examined my stomach and its so damn tender and swollen that shes so concerned that im going to the hospital asap....meet with a surgeon....get a colonoscopy and ct scan....man i am stressed out..will keep you all updated thanks for the support
02-26-2013, 09:52 AM   #23
***Lisa***
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Rejhan:

I'm glad they are taking immediate action and will do the colonoscopy and CT scan today. That is the only way they will be able to determine exactly what is going on and can then decide on the best course of action.

Don't forget to ask them what your Vitamin D level is. If it is dangerously low, they may want you to take Vitamin D3 supplements, as well.

Please let us know the results of your tests today. I'm sending you and your Mom a big hug! Just remember ... You WILL get better!

Lisa
02-26-2013, 04:44 PM   #24
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sooooo getting a catscan and met with the surgeon assistant i believe and the GI assistant...CTscan tonight probably....possibly colonoscapy tmrw...they said i will probably be here till monday...looking like i need surgery the inflammation is so bad...did not ask about the Vitamin D yet but will do once the GI comes visit....and then once that is done possibly do remicade plus imuran...for now im on morphine....saline...got an IV so i can only have liquids tonight...
02-26-2013, 08:04 PM   #25
***Lisa***
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After the colonoscopy tomorrow, please let us know what they recommend. What kind of surgery are they considering? Will they put you on steroids (prednisone) for a few weeks before starting the Remicade? Just take it one step at a time and weigh all of your options carefully before deciding what to do. There is always more than one option so ask them to go through all of them with you in detail before making any decisions.

Try to get some rest tonight.
02-26-2013, 08:44 PM   #26
Rejhan15
 
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After the colonoscopy tomorrow, please let us know what they recommend. What kind of surgery are they considering? Will they put you on steroids (prednisone) for a few weeks before starting the Remicade? Just take it one step at a time and weigh all of your options carefully before deciding what to do. There is always more than one option so ask them to go through all of them with you in detail before making any decisions.

Try to get some rest tonight.
actually just talked to the GI said catscan literally an hour from now...and i will have the surgery in all likeleyhood and he will discuss it with the surgeons tmrw....he fears the worst about my stomach and the inflammation i'm probably having the surgery where they cut where the large and small intestens meet and some more starts with an L....very common he said....and once i do that i will stay here till monday and recovery will be 3-4 weeks....and then 2 months agfter that probably start imuran with remicade....thank you to everyone who's been following my situation and giving support God bless you all
02-26-2013, 08:48 PM   #27
***Lisa***
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Sounds like you have a good GI. I will keep you in my prayers.
02-27-2013, 01:17 PM   #28
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Well my gi said no surgery...even tho last night he aaid id prob getone...im still here till monday because im in a ton of pain...they want me on remicade and imuran asap....im on an inly liquid diet....broth for lunch just awful...still feeling depressed even more noe because i felt the surgeey wouldve helped alot and then start imuran and remicade after....angry and depressed...
02-27-2013, 02:11 PM   #29
***Lisa***
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Rejhan:

Surgery is not always the answer. You could have had the surgery and then not get the relief that you wanted so don't be too upset about not having surgery.

I know you are tired of me talking about vitamins, but they really can help with your pain and can help with your depression, too. I just read a note from a man with Crohns just today who said that although the Vitamin D did not help his Crohns, it helped a lot with his depression. Please check out the link below and look at the comments from "CrohnsDaddy"
at the end of the string:

http://www.crohnsforum.com/showthrea...=23826&page=12

It can't hurt, and can only help, if you start taking 5,000 IUs of Vitamin D3 and 400 MCGs of Folic Acid everyday.
03-01-2013, 01:35 AM   #30
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well started imuran and had some reactions to it im sure....nausea...white blood cell count was at around 18...just didnt feel good...haven't had a bowel movement since sunday then tonight just explosive diarrheahh....so embaressing...all over the floor...and some blood in it and when i wiped...i broke down in tears when i told the nurse...this is just ruining my life...and then the pain is just so bad....i'm gonna be in the hospital for a while it looks like and i'd rather be here being monitered than at home i guess...
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