# My Story



## Rejhan15

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


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## Trysha

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


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## Angrybird

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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## Martha

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.


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## Angrybird

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


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## Martha

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


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## Angrybird

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?


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## Martha

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 :-(


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## ***Lisa***

Angrybird said:


> 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.


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## Rejhan15

Angrybird said:


> 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


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## Angrybird

Please keep us updated on how you are getting on.


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## Rejhan15

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


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## Angrybird

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.


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## Rejhan15

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


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## Farmwife

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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## Rejhan15

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?


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## Angrybird

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?


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## Rejhan15

Angrybird said:


> 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


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## Angrybird

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.


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## Rejhan15

Angrybird said:


> 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


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## Jim (POPS)

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.


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## Rejhan15

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


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## ***Lisa***

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


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## Rejhan15

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...


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## ***Lisa***

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.


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## Rejhan15

***Lisa*** said:


> 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


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## ***Lisa***

Sounds like you have a good GI. I will keep you in my prayers.


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## Rejhan15

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...


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## ***Lisa***

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/showthread.php?t=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.


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## Rejhan15

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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## Angrybird

Sorry for not getting back sooner - I have now had my baby.

I am sorry you are having such a horrible time of things  whilst hospital isn't great at least you can be kept an eye on. Just to confirm have the docs currently got you on IV steroids? Have they checked any of your vitamin levels?


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## Rejhan15

Angrybird said:


> Sorry for not getting back sooner - I have now had my baby.
> 
> I am sorry you are having such a horrible time of things  whilst hospital isn't great at least you can be kept an eye on. Just to confirm have the docs currently got you on IV steroids? Have they checked any of your vitamin levels?


congrats on the baby!!!  and im on iv steroids correct and antibiotics...just took a nap and woke up and i had a diarrheah accident....again...so damn embaressing just broke down in tears idk what to anymore


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## Angrybird

Oh sweetheart it is horrible when that happens :hug: When are you next due to see the docs on a ward round?


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## Rejhan15

Angrybird said:


> Oh sweetheart it is horrible when that happens :hug: When are you next due to see the docs on a ward round?


no clue yet my regular GI is gone till monday and im sure im staying here till late next week....i've been here since monday or tuesday i believe...this sucks really bad...they gave me some cymbalta for depression though hope it helps...and yeah they dont want to operate even though its very inflamed..i just feel like it would give me some relief from this pain since im 18 and i cant do ANYTHING a regular 18 yr old does...party with friends..go out on weekends...none of that maybe the small resection gives me some relief for a litle then i start imuran and remicade....im just so stressed...


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## Angrybird

Definetly speak to the docs/nurse about this, someone should still be coming round to see you over the next day or two. Please keep us updated on how you are doing.


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## Rejhan15

Angrybird said:


> Definetly speak to the docs/nurse about this, someone should still be coming round to see you over the next day or two. Please keep us updated on how you are doing.


problem is the surgeon is really stubborn and doesnt wanna listen to my point of view on this but yeah...i'll find a way to work all this out


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## ***Lisa***

Rejhan15 said:


> problem is the surgeon is really stubborn and doesnt wanna listen to my point of view on this but yeah...i'll find a way to work all this out


You just have to tell your GI and your nurses what is going on with how severe the pain is. I know those accidents can be very hard to handle. My daughter called me many times from college (4 hours away) upset because she just had an accident, but she learned where to go out where she could be close to a bathroom and she found a way to live with it and still be happy. She got so good that she never actually had an accident in front of her friends. She is 20 years old and has flares now and then, but they eventually pass and yours will too once you are on the right treatment program. 

So, for right now just try to relax and let people pamper you for a little while and remember, you will not feel this bad for very long. You just need to give yourself a few weeks to get a handle on this and with each passing day, you will feel better, although you will have your ups and downs. Just lean on your Mom and the rest of your family when you are feeling down. Your Mom is there for you so just talk to her when you need to talk and please keep posting notes here, too.

My daughter and I are sending lots & lots of hugs to you and your Mom! 

:ghug:

Lisa


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## Mistybear

Rejhan, hang in there. I know first hand when you think the worst has or is happening, something else goes wrong! Take advantage of being in the hospital, rest up and try not to stress out. It's a emotional roller coaster, a ride no one understands unless you've been there! Prayers coming your way


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## ***Lisa***

Hi Rejhan::

Just checking in to see how things went for you today? I hope it was a little better.

Lisa :ghug:


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## Trysha

Hello Rejhan
Sorry you are having such a bad time.
It does not help to have to deal with anunsympathetic surgeon.
Where is your GI, they should visit you regardless of it being a weekend.
Hopefully you will have a medical visit, perhaps you could ask the nurses to see a doctor. There should be a resident on duty,usually is.
Feel better soon
Hugs and best wishes
Trysha


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## Rejhan15

well i keep having diarrheahh and everytime i wake up i wake up to it all over the bed and my pants...accidents so damn embaressing....anyway they gave me these pullup diaper things hahaha and the cymbalta for depression is helping a little i guess...i moved up from  a all clear liquid diet to a full liquid diet so ican drink gatorade...some oatmeal...protein shakes...but no lactose...hopefully i can eat solid foods on monday and get out of here they want to check how the imuran is working..how my stomach reacts to solid foods, if im still in pain and having diarrheah....thanks for all the support everyone! im ready to go home lol


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## ***Lisa***

Hi Rejhan:

It sounds like things are progressing for you and, yeah, sometimes, like today, you will have to wear an adult diaper but that is okay, too. My 20 year old daughter has been wearing one on and off for a few months now, just in case, and none of her friends at college have any idea that she does. Once the meds take full affect, you will be able to ditch them but, for now, they are necessity. 

Keep taking it one day at a time. I do hope you can go home Monday or Tuesday. You will feel even better once you are at home eating your Mom's cooking.

Have a good night.

Lisa :getwell:


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## Angrybird

It could even be the liquids that are contributing to the problem, when I first go onto the liquid shakes I found I had bad diarrhoea and I was told this was my body adjusting to not having solid good,hopefully things will improve once you can add some substance do your diet.


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## Martha

Hi Rejhan.  I felt like that my life would never get back on track when I was really ill too, but believe me it will.  Dont get me wrong, you will have the bad days in between the feel good days, but that im afraid is what we have to live with now.  You will have to make some changes in your daily life, but its nothing like what you are going through now and I know exactly how that feels.  Keep strong and dont get upset over accidents as we have mostly all been there.  Think about when you feel better and what is the first thing you are going to do, because you will be able to do it you just need to get past this stage in finding what meds or diet helps you get there.  Also surgery is not always the answer and it isnt a quick fix as you can and will still get flares even after surgery so try to be positive on not getiing surgery rather than thinking it will fix you.  Again, I felt the same I used to cry when I went to see my consultant asking why he wasnt fixing me, but he knew what he was doing...hugs


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## Rejhan15

GI came in and the full liquid diet made my stomach hurt again....so they're gonna try a soft food/ lactose free diet and see if it hurts...probably will...anyway they're calling the surgeon in tmrw to check me out again because i've been here for a week and am not getting any better...damn shame he feels bad for me...even this morphine isnt helping the pain completely....my parents and i appreciate the support...will update you guys with the surgeons decision tmrw...God bless


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## Tuff

Hi Rejhan,
I'm so sorry you are going through this at your age. It does get better. I've done the blood and stool all over the floor bit, it's hard but just hang in there until the drugs kick in. Imuran is working for me, the diarrhea is much better. It's scary when you read the side effects of all the stuff you take, but even tylenol has a list of possible side effects. I'll probably have to start on remicade for my fistulas.


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## Angrybird

Sending lots of hugs your way hun :hug:


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## ***Lisa***

Yes, please do let us know what the surgeon has to say tomorrow. We are all pulling for you, Rejhan. God bless you and your Mom & Dad, too.

Lisa :hang:


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## ***Lisa***

Hi Rejhan:

How did things go today? What did your surgeon have to say?

Lisa


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## Rejhan15

***Lisa*** said:


> Hi Rejhan:
> 
> How did things go today? What did your surgeon have to say?
> 
> Lisa


they took me off of my solid food diet back to liquid  and they wont call a surgeon just yet...im probably here this whole week they dont want to send me home early then have pain and back in the hospital ya know?...so im here till it hurts and if im here next week they want to start remicade in here asap...and if that doesnt work then a surgeon would be called probably....this sucks constant pain but atleast the diarrheah is gone


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## Angrybird

It seems to be that perhaps the more solid diet helped with the diahrroea? I will keep fingers crossed that the liquids only will not put you back a step in this dept. Is there a reason they could not perhaps start the Remi this week for you?


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## ***Lisa***

Rejhan:

With this disease you have to celebrate the little things and no diarrhea is definitely a step in the right direction!  Next, they will do what they need to get your pain under control. Sounds like they are going to try everything else before resorting to surgery and that is good, too. I know that being in the hospital is not fun, but they need to monitor you closely right now so that they can be sure to give you the right treatment plan that will restore your health for a good, long time.

If you don't mind, please keep posting daily updates. I will keep you & your family in my prayers.

Lisa :basketball:


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## Rejhan15

doctor just came in and told me they want me to try and wane off the IV pain meds but i dont know if im ready for it...because the oral pain meds dont give me that much relief...he wants to start remicade maybe this week im not sure though but yeah the dilaudin helps a lot with pain because im constantly grumbling and some sharp pains and the norco doesnt do too much even with 2....they want me to try as long as i can w/o iv pain meds...what do you guys think....i still feel pain with the oral pain meds...should i lie and say i dont feel much so i can go home?.....i feel like they dont want me in here


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## Angrybird

Whilst I can understand the need to get home I don't feel you are at the stage where you can be stuck trying to get things sorted on an out patient basis if you then go home. If the docs are insistent try coming off the IV meds but let the nurses know if/when things get too much for you straight away.


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## Martha

Look on it as good news regarding coming off IV pain relief as it means once your off them you might get home quicker.  Maybe they could give you co-codomal that works for me most of the time and helps to bind you so less running to the toilet.  You may be amazed at how well you will start feeling when you get remicade, I really hope it does work for you.  Hang in there, let them get your meds right, your in the right place


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## ***Lisa***

Hi Rejhan:

I agree with Angrybird. Try weaning yourself off the IV pain meds, but be 100% honest with them about your pain level as things progress. Do not suffer in silence. If your pain increases significantly, tell your nurse immediately. Don't wait for them to ask you.  Just remember, if your pain starts to get really severe, they can always startup the IV right away which will give you quick relief. Give it a good try as your body is in constant change and the oral meds may keep you relatively comfortable now. 

Lisa


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## Rejhan15

they said my Discharge date is probably 3/6 or 3/7....if i need the iv pain meds again today which i think i might....then they would up the oral dosage to 3 pills which should do the trick....then i could go home


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## Rejhan15

they fooled me...i thought i was on a full liquid diet which i was but they put fries on my lunch....so i ate it and when i ate it i became nauseas...got diarrheah and got stomach pain again....after that i found out i wasnt supposed to eat it...so my dad went off on the kitchen people yelled at them lol....anyway i developed some rash type thing on my leg ever since i started imuran....will ask the GI about it tmrw...anyway i needed the IV pain meds this pain really hurt i went 5 hours w/o it but sorry people i had to...too much pain...anyway if im here next week they'll prob start remicade here and i think i might be here b/c they want to monitor my first remicade session possibly...im thinking im getting out FRI or MON..


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## ***Lisa***

I am glad your Dad gave the kitchen staff a piece of his mind as that is ridiculous! They need to put better safeguards in place to ensure that they never give the another parient's lunch to wrong person ever again. Sorry you got sick because of their mistake. 

No need to apologize for taking IV meds again after only five hours. It happened. The next time you go off them, I'll bet you will be able to stay off them much longer. I understand that getting a rash as a result of Imuran is not unusual. Hopefully, you can stop the Imuran once they start your Remicade infusions.

Everyday you are getting that much closer to going home!

Lisa :yoshijumpjoy:


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## Rejhan15

nothing is helping so the GI told me i cant start remicade for another 6 weeks....so either i need to be tube fed for 6 weeks with a cathater or possibly have surgery and the surgeon will check up on me tmrw.....depressed to the max...more than ever....no food only clear liquids for 6 weeks then.....te risk of blood clots and infections is high and scary.....just dont know what to do anymore...feel like it would be better off for my parents if i wasnt here im putting them through so much damn stress....


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## Angrybird

I am sorry you are having to go through all this, you cannot help it and I am sure your parents would much prefer to be there with you. I think when the docs comes round tomorrow it needs to be made very clear to them that they have to stop messing you around with what the plan is and get something sorted for you asap.


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## ***Lisa***

Rejhan:

Oh no ... Your parents are going through this with you not because they have to, but because they love you and just want you to get better. No one, especially your parents, are not blaming you for having Crohns. This time that you are going through now, at the beginning when you are first diagnosed and are trying to figure the best way to treat it, is the hardest time. Always remember that you will get through this and when you do, you and your parents will be so happy and thankful to have you home. It is not fun, that's for sure, but you will make it through this.

One thing I have learned when dealing with doctors is they always tell you the worst case scenario so if they are telling you that you will be on a liquid diet for six weeks, it is very unlikely that you will be on it for the full six weeks. They just tell you that so that you can prepare yourself for it, but you probably won't have to be on a liquid diet, or even be in the hospital for that long. 

Just remember this is a temporary situation. The liquid diet is temporary; your hospital stay is only temporary. When you go home, you will appreciate so much more all of the little things you do everyday at home, like eat dinner at home or hang out with your friends and you will go back to doing all of those things again and more.

Don't feel bad about relying on your parents and your doctors & nurses right now. They know that you are doing the best you can to deal with your pain and they are not mad at you because you are sick right now. Just try to think about how great it will be when you get all this behind you.

Do you live in the northeast of the US? That's where I live and spring is coming soon so by the time you start feeling good, the weather will be getting warmer so that you can really get out and have some fun when you get home!

It's okay to let yourself feel a little down sometimes, but you have to promise yourself that you won't think about those sad feelings for more than five minutes at a time. You need to stay as positive as possible. There is always a reason for everything that happens in our lives so keep your chin up and you will get better soon. You will. Just hang in there.

Lisa :sun:


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## JennyT

Hi Rehjan, Im so sorry you are having such a rotten time of it right now. Youre not alone - many of us have been there and felt exactly like you do - but it gets better. Crohns takes time to come right but once you are on the right meds regime you life will become livable again like mine has. Its not surprising you feel so bad so dont beat yourself up - you have just found out you have a real rubbish disease but it does go into remission so hold onto that if you can and just keep breathing in and out - we're all with you!


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## REDHEAD

Hi Rehjan, sorry to hear you are having a hard time finding a drug that works.  I know your pain, i was diagnosed 4 years ago, and we are still working things out. The pain is certainly better then when i was diagnosed.  We are all here for each other.  Keep your chin up.


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## ***Lisa***

His did things go today, Rejhan?


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## Rejhan15

had my MRI just now...tmrw i will get the decision if i'll get the surgery or tube feeding for 5-6 weeks...will let you guys know asap


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## ***Lisa***

Okay ... Sending you lots of thoughts & prayers hoping for good results tomorrow.
:dog:


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## JennyT

Wishing you the best result!


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## Luckystar715

Hi Rejhan, 
    First of best wishes to you tommorrow! I have had surgery/bowel ressection on the area that your doctors are considering having surgery for you. I know that the determining factor for my surgery was the fact that i was having frequent hospitalizations and my mom stepped in and told ask the surgeron what are you going to do for my daughter because this is not a good quality of life. Which sounds like you are going through the same. Keep in mind that they waited until i was stable to perform the surgery, so i think maybe a week or so in the hospital. Do you know if that is the plan for the dr's are having for you as well? Are they wanting to have the feeding tube to calm the inflammation down and then complete the surgery? My other concern was when the doctor mentioned a feeding tube did he mean a feeding tube through your stomach or artificial feeding through a pic line? I had a pic line which they threaded a tiny catheter through my arm into an artery or vein in my neck. It was a fairly painless procedure and the completed it in my hospital room. 

and always, always, always.... seek a second opinion if you and your family are uncertain of one doctors medical decisions!There is never any harm in seeking a second opinion to find the best medical treatment for yourself! I once had a surgeon tell me when I was 16 i needed my entire colon removed and he schedule me fore surgery in two days. I was devistated and my dad cried. My mom called my GI immediately and she said no way! I went to Clevland Clinic and the doctor said, no way would he do surgery now, I had little scaring. 5 years I had surgery, on the part where large meets small. 

Stay strong and celebrate little victories (like no diarhhea for a day! or having less diarhhea). I hope this helps some!


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## T.A.R.D.I.S.girl

Good Luck! Lots of people are pulling for you! And the waiting is brutal, I understand that!


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## Rejhan15

MRI showed some inflammation went down and they still dont know if they will tube feed me through the catheter or surgery.....they moved me from clear liquid diet to a full liquid now so thats good but i keep having accidents and diarrheah and constant pain...which sucks.....to anyone who has been tube fed i need to do it for 5 weeks..would i stay in the hospital or could i be home


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## Luckystar715

I think you can be tube feed at home. They will have a nurse come to your home and show you and your parents how to do it. I had antibiotics thru a pic line for a few weeks and I went home and a nurse came. I was fed artificially thru the same pic line at the hospital. So I would imagine you will be able to go home. Fingers crossed and prayers sent your way!


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## Mistybear

Stay strong & keep the faith! Thinking about you


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## ***Lisa***

I would think they could send you home. I hope so!


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## Rejhan15

the GI came in and said the inflammation has not gone down according to the MRI and theres now scarring..so i have no clue what they're going to do


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## Rejhan15

and it's mainly all in my terminal ileum i believe


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## Angrybird

I am wondering if an op may now be something that has to be done given that you have scarring and inflammation that is not being sorted by the current meds. When are the docs next due to come and see you to discuss things?


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## Rejhan15

Angrybird said:


> I am wondering if an op may now be something that has to be done given that you have scarring and inflammation that is not being sorted by the current meds. When are the docs next due to come and see you to discuss things?


yeah surgeons coming in tmrw.....they took me off the dilaudid IV pain meds hoping to send me home and have given me only oral pain meds and my stomach pain is up to an 8.5-9....so terrible i feel awful i'll probably tell them i cant be in here w/o that stuff its that bad especially b/c of the scarring...so surgery is the best option for scarring?


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## ***Lisa***

My daughter's CD is in her terminal ileum, too, but they wanted to avoid surgery if at all possible. Having your inflammation level go down is a good step in the right direction.


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## Rejhan15

***Lisa*** said:


> My daughter's CD is in her terminal ileum, too, but they wanted to avoid surgery if at all possible. Having your inflammation level go down is a good step in the right direction.


no they read it wrong the inflammation is still there PLUS scarring so im screwed...this sucks


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## ***Lisa***

Rejhan: Vitamin D has been shown to reduce inflammation. Did you ever find out what your level of Vitamin D was? If they haven't tested your level, you need to insist that they do. Please let us know what the surgeon recommends today.


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## Rejhan15

i will let you guys know and they said they didnt need to check my vitamin D level


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## Rejhan15

just talked to the surgeon....i will be having surgery this week....since im not gettin nutrients they want me nutrient fed through a catheter until the surgery.....and if they cant re connect the parts they cut theres a chance id need a bag for 3 months.....just great.....the one thing i wanted to avoid and theres a chance i might need one...


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## ***Lisa***

There is only a chance you might need a bag for a few months, but there is a bigger chance that you will not. Even if you do, it will only be for a very short time. Others on this forum who have had one for a short time or have one now can tell you that you can get through that, if it does turn out that you need one. If it gets you out of pain and back home, it will be worth it. You have to think positive. Having a positive outlook when faced with battling a chronic illness is an absolute must! You are stronger than you give yourself credit for, Rejhan. You will get through this and will be healthy again. Don't ever forget that, even if it seems like it is so far away.


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## Angrybird

Sorry to hear that surgery is needed hun, as mentioned above they may be able to avoid giving you a bag - they did with my op - but always have to warn that this is a possibility. Hopefully this will then get you on the road to feeling better.


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## Rejhan15

so surgery is wednesday and they're transferring me to a diff hospital tmrw...hopefully i'll be home by monday...right now im on TBN until the surgery so almost done with this


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## Rejhan15

they'll take out the scarred part of my small intesnite and some of my colon....and my appendix....only a 15% chance for a bag so please pray for me


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## Angrybird

Sending lots of hugs and best wishes your way hun, please keep us updated as and when you can on how you are getting on.

AB
xx


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## ***Lisa***

Rejhan: I sending you lots and lots of prayers. The odds are most definitely in your favor for not having a bag so I will keep the positive thoughts and prayers coming your way. Please let us know when you get to the other hospital.

Lisa

:ghug:


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## JennyT

Praying for you Rejhan and wishing you the best outcome!!


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## Rejhan15

God bless you all!


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## Tesscorm

Just catching up on your story!  My son is also 18, was diagnosed when he was 16.

You have an amazing attitude at dealing with all these issues!  It's hard to believe you're only 18! :thumright: Your parents must be very proud and you should also take some pride at how much you've had to overcome!  You're already on your way to recovery!!!  From what I've read, many, many people have great results after their surgery!

DustyKat has two children who had surgery in their teens.  She posted how the surgery went and recovery, day by day, for the first week or so.  I thought you might find it helpful to know what you might expect, I've copied it below for you.

_Both of my children have had ileocaecal resections, also known as right hemicolectomies. They had very different journey's but the outcome was the same, surgery. Following the surgery they have both done wonderfully well, they have grown in both height and weight and it put both of them straight into remission and they have stayed there. So 6.5 years and 22 months respectively. My son was also 17 when he had his surgery. The following is copied from another post. It is an old post hence the differing remission times to what I have stated earlier. They both had open procedures due to complications so if your boy has laparoscopic surgery his recovery time will be quicker:

Sarah: 
had a right hemicolectomy 5 years ago and has been in remission since that time. Her surgery was an emergency, she was undiagnosed, and so was performed as an open procedure. This is an outline of her post op recovery...

Surgery day - She was in theatre for approx 4 hours. When she returned to recovery she had oxygen, two IV's, two drains, an NG tube and an IDC (urinary catheter). She was in ICU overnight. She asked to go back to the ward the next morning. I think the surgeon wanted her to stay another day but she couldn't get out fast enough! Oxygen therapy ceased. 

Day 1 post op - Moved to the ward and spent the day on bedrest. IDC removed. NG tube on free drainage and morphine IV remained on PCA (patient controlled analgesia).

Day 2 post op - No change with drains and tubes. Physiotherapy commenced. Up out of bed and gentle ambulation commenced twice a day. Although Roo refused to use a pan so started walking to the toilet that day.
Started eating ice chips. 

Day 3 post op - One IV removed and condensed IV morphine and fluids into one. NG tube removed. Increasing mobilisation. Ice chips.

Day 4 - Bowels open. Commenced on clear fluids. Mobilising.

Day 5 - Tolerated fluids from previous day and throughout this day so commenced on light diet at tea time. Both drains removed and IV removed. Oral analgesia and antibiotics commenced.

Day 6 - Discharged home.

I don't know if being paediatric made a difference but each day she was visted by the surgical team twice, the physiotherapist twice, the pain management team once and the dietician once. 

Sarah was in very poor condition prior to surgery so I felt that she didn't truly recover for a number of months. I would say she was running on about 80% for the first few months and reached full recovery after about 6 months. She returned to school 3 weeks after the operation and has now been in remission for 5 1/2 years.

Matt: 
had a right hemicolectomy in April. It was planned surgery that was required due to an existing fistula and abscess. He had a pigtail drain in for 3 months prior to surgery. 

Surgery day - He was in theatre for about 4 hours and recovery for 2 hours. When he arrived back on the ward he had one IV that consisted of the PCA (patient controlled analgaesia) and other IV fluids for hydration and IV medication. He also had one wound drain, a urinary catheter and oxygen.

Day 1 post op - No change with IV's or tubes and drains. Started mobilising and about an hour sitting in the chair. 

Day 2 post op - Still no change with the tubes and lines. Commenced on clear fluids and continued with gentle mobilisation. 

Day 3 post op - Urinary catheter removed, still on clear fluids, mobilising well.

Day 4 post op - PCA removed and started on oral analgaesia, remains on clear fluids, started farting, only one IV now left. 

Day 5 post op - Last IV removed, commenced on free fluids, bowels open.

Day 6 post op - Commenced of light diet.

Day 7 post op - Commenced on full diet, drain out.

Day 8 post op - Discharged!

Matt had no issues post op and I feel that the start of week 4 post op was the real turn around in his recovery. It was at this point that he really started to move freely and shades of his old self started to appear. His recovery has been much quicker than Sarah's. He returned to school 3 weeks after surgery, was allowed to drive short distances after 3 weeks and long distances after 6 weeks but he was driving longer distances at 5 weeks. Started soccer training at about 5 weeks as well. He is also in remission.

The life savers in hospital for them were...TV, mobile phone, iPod, laptop with DVD's, ear plugs, comfortable loose fitting pyjamas/clothes, footwear that is easy to slip on an off, like slippers, magazines/books and short visits from friends when they were up to it. 

They have both been on maintenance meds (Imuran) following surgery._



If you need to do the liquid diet afterwards and you have questions, let me know...  my son did it for six weeks using an NG tube.  He inserted it every day and removed it in the morning - it's different for everyone but the tube really wasn't a big deal for him (the not eating for six weeks was a bit tougher :ack.  He's still using it as maintenance (with a regular diet!) until now, he's just started remicade, but will continue with it for the time being.

I'll be watching for your updates and sending lots of prayers that all goes well on Wednesday!


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## ***Lisa***

Rejhan: We were all thinking of you today, praying that your surgery went well. Once you feel up to it, please let us know how you are doing.

Lisa :hug:


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## JennyT

In our prayers and thoughts X


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## Rejhan15

surgery went well...im just super sore......took my appendix oiut and 8 inches of mu small  intestint and some of my colon....so im real sore.....thanks for the prayers


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## ***Lisa***

Hi Rejhan - Sounds like it went really well ... and you don't have a bag, which is something I know you were worried about. So happy to hear it! Just take it slow the next few days and concentrate on getting your strength back. You are truly on the road to recovery now!

Take care.

Lisa


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## Tesscorm

So glad to hear the surgery went well!!!    Don't try to rush to recover, take care of yourself!!!

:ghug:


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## Angrybird

Glad the op went well and you didn't need a bag,as mentioned go slow and take things one day at a time.


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## ***Lisa***

Hope your first day post-op went well.


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## Karen

praying for your full recovery !!!


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## Hope345

glad to hear it went well for you.
Sending lots of support.


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## Rejhan15

phew i am out of here tmrw at noon....walked 5 times today and had a soft diet...making a lot of progress but still really sore..now im gonna rest at home for a WHILE....thanks for all the support...


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## Angrybird

Really pleased that you can be going home tomorrow  Please keep us updated on how you are doing - have the docs said anything about if/when you will start the Remicade?


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## Rejhan15

Angrybird said:


> Really pleased that you can be going home tomorrow  Please keep us updated on how you are doing - have the docs said anything about if/when you will start the Remicade?


probably start remicade and imuran again in about a month


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## ***Lisa***

YAY!!! So happy you are going home in a few hours and no more liquid diet! Today is a wonderful day! Enjoy your Mom's home cooking! Just so happy for you, Rejhan! Please keep the updates coming.

:dance:


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## Tesscorm

WOOHOO!!! :banana:  So glad you're going home!!!


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## Rejhan15

lol love seeing these dancing bananas


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## Mistybear

Hi Rejhan 15, hope your doing well today!!


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## ***Lisa***

Enjoy your first night at home in a while. There is nothing better than sleeping in your own bed after a long stay in the hospital! :smile:


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## Luckystar715

Glad to hear the surgery and your recovery are going well!  sending more prayers your way in that you soon reach a happy place of stability with your health! It appears you are on your way!


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## Rejhan15

well i was back in the hospital on sunday with intense pain on my lower right side.....got out on tuesday...apparently i had a bowel obstruction...ileus?....and was super constipated so they gave me a laxative and cleared me out....and now im home feeling better but still constipated...even after using a couple types of laxatives


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## Tesscorm

Sorry you're having to deal with this now!  Did your GI tell you what to expect? ie is constipation related to the surgery or meds?  will it gradually alleviate?  etc.

I hope this can correct itself fairly soon for you!!!


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## Rejhan15

no clue just keep having this pain and still constipated....i dont wanna go back to the hospital


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## Tesscorm

Don't blame you for not wanting to go back!  But, I'm sorry you're still in pain. 

I know when my son's had minor constipation issues, prune juice and yoghurt help him, HOWEVER, this was not after surgery, so I don't know if that would help you (or if you have any food restrictions!).  I would check with your GI's office if you're not sure.

I'm going to tag QueenGothel - her daughter is much younger than you but she had surgery and had some problems with constipation/ileus...  she might have some advice for you.

Hope you're feeling better soon!!! :ghug:


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## Angrybird

After my resection I was put on a mild laxative called Milpar so my stools wouldn't be too solid going through the healing join inside and strain it, I was also advised on foods to eat for the first few weeks - has anything like this been done for you? When are you next due to see your GI?


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## ***Lisa***

So sorry to hear that you had to make another trip to the hospital, Rejhan. You have gone from one extreme to the other during the past few weeks. In addition to eating foods recommended by your GI, be sure to drink plenty of water as that should help with the constipation, as well. I hope they can get you back on track soon.

Lisa


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## QueenGothel

Hi Rejhan, my daugther had constipation and and ileus numerous times. There can be a couple of different things happening.  Ileus is usually caused by pain meds like morphine, hydrocodone, vicodine. When ever a surgeon touches the intestines your at risk for getting an ileus. So I wouldn't take anything but Tylenol, as it will make the pain much worse.  For Constipation I would drink Welches Grape juice warmed and use a heating pad as well.  Warm foods like soups (broth not cream). Adhesions can form rather quickly after surgery so it is very important to be up and moving adhesions can also cause a psuedo ileus. Leaving you thinking it is constipation or something you ate but could also be scar tissue adhesions forming.  Basically this is the prognosis when they are unsure of the cause.  I would stick with fluids for a bit and even for a while after having surgery you don't want anything causing you to spring a leak which is not good ever. So no raw vegetables, peanuts, popcorn, melons, mushrooms are the bigger offenders for blockages.  Maybe trying ginger teas to help with digesting as well. The warmth is always good for constipation.  Avoid apples, applesauce, potatoes, peanut butter, white bread, mashmallows and bananas for constipation.  Coffee, sugar and fried foods cause constipation as well though many think it is the opposite. Dark chocolate is a natural laxative.  So yum get some and enjoy it. 

I hope it clears up soon and sorry your still feeling bad.  Keep moving!


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## QueenGothel

Things I would recommend eating to avoid constipation are...

Yogurt lots of it for the calcium and potassium
Breyers makes a lactose free ice cream 
Soups
Whole grain breads
Poultry 
Fish
Kefir
Strawberries
Blueberries
Hummus
Eggs
Salads
Dark chocolate 

Avoid steak and pork chops bc they are hard to digest!  If you have red meat I would only use ground varieties for adding into meals like spaghetti. Cheese is also constipating so if you like cheese stick with fermented cheese like Parmesan or Munster.


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## ***Lisa***

How are you doing today, Rejhan? Any improvement?


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## Rejhan15

yes i have had bowel movements every day when i woke up...not a huge amount but a decent amount...hey its better than nothing...ive been using miralax as reccomended by my surgeon so i used it....i am doing better with the stomach pain from it as well....i WILL get better...thank you people!


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## ***Lisa***

Yes, indeed! You definitely WILL get better! You are a strong guy, Rejhan. You have been through a lot, but you did it! :smile: You have to take small steps to accomplish big things and you are well on your way now. Just keep take things slow with your recovery and you'll be going places and hanging out with your friends soon! :medal1:


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## Angrybird

I am so pleased to hear that things are improving for you  I agree that baby steps are the key to a good recovery so do not rush things and please keep us updated on how you are doing.


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## Rejhan15

feeling good having normal bowel movements now...still some soreness from the surgery but im eating regular food and feeling good!


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## ***Lisa***

Rejhan15 said:


> feeling good having normal bowel movements now...still some soreness from the surgery but im eating regular food and feeling good!


Woo hoo!!

:yoshijumpjoy:


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## Angrybird

Yay! :dance:


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## Rejhan15

just wanted to update anyone if anyone is still interested in how im doing lol....anyway im doing great!...my scars are getting better, im eating normal food regulary, having normal bowel movements...no stomach pain at all....nothing like how it used to be with an inflamed intestine...thank God!....driving my car today for the first time since february 24...so excited! when my friends and family visit me it helps my mood and my mood has improved a ton! no longer depressed and always laughin and smiling...back to being my old self!  once again thank you everyone for the support during this tough time couldn't have made it through all this without your support and thats the dead honest truth


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## Artisan105

Rejhan15 said:


> 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...


I totally understand your feelings... but I had Crohn's since I was a elementary child so I got over it a while ago. 3 years ago I had internal bleeding so everytime I went to the bathroom I would bleed heavily. Everything was covered in blood. I fainted because I was low on blood :[ so the nurses rushed in. They thought I was still in pain because my face so they gave me another shot of Dilaudid 8mg when the previous nurse already gave me Dilaudid 8mg like 10 min prior. I started to lose consciousness so they gave me Narcan... I was still unresponsive then I woke up in the ICU after 3 days. 

All I am saying is that you are now on a difficult road. You have to change the way you live, think, and you will find out who your real friends are also how important your family really is. I hope you get through this in a positive way. You can do it. :] Praying for you.


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## Angrybird

So pleased to hear you are doing so well! Long may it continue :ybiggrin:


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## ***Lisa***

Rejhan15 said:


> just wanted to update anyone if anyone is still interested in how im doing lol....anyway im doing great!...my scars are getting better, im eating normal food regulary, having normal bowel movements...no stomach pain at all....nothing like how it used to be with an inflamed intestine...thank God!....driving my car today for the first time since february 24...so excited! when my friends and family visit me it helps my mood and my mood has improved a ton! no longer depressed and always laughin and smiling...back to being my old self!  once again thank you everyone for the support during this tough time couldn't have made it through all this without your support and thats the dead honest truth


Hi Rejhan - I was wondering how you were doing!! Soooooo excited to hear you are back to your old, healthy, self!!! I KNEW this day would come! It's so wonderful! Please keep us updated from time-to-time! I love success stories!!

Now, get out there and have some FUN!!

Lisa. :smile:


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## ***Lisa***

Hi Rejhan:

Have you felt well enough to return to school? Have you been able to keep up with your class work while you have been out of class? I hope so. 

Lisa


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## Rejhan15

***Lisa*** said:


> Hi Rejhan:
> 
> Have you felt well enough to return to school? Have you been able to keep up with your class work while you have been out of class? I hope so.
> 
> Lisa


i had to drop out of college in the fall because of my disease...so i'm probably gonna find a job hopefully save up money and start again part time in the fall and have no student loans...take only a couple classes at a time


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## Artisan105

Rejhan15 said:


> i had to drop out of college in the fall because of my disease...so i'm probably gonna find a job hopefully save up money and start again part time in the fall and have no student loans...take only a couple classes at a time


Yea take it slow. Work part-time. Go to school part-time. Take it easy for a year. After your body heals then try full-time at school. Don't try to over do things. Don't stress. You will be fine :] Oh watch what you eat. It's super important. Most foods served at school is not good for you. You might have to bring your own meals. Go to the diet section of the forum. Try out some of the meals described by other members. Take care. God bless.


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## ***Lisa***

Rejhan15 said:


> i had to drop out of college in the fall because of my disease...so i'm probably gonna find a job hopefully save up money and start again part time in the fall and have no student loans...take only a couple classes at a time


Rejhan - Your situation is very similar to my daughters as she had to drop out of college, too, just a couple of months ago due to a severe flare she is trying to get under control now, so I definitely can relate to what you are going through with trying to get your academic career back on track. My daughter never thought in a million years that she would ever have to drop out of college, but, like you, she simply had no choice. She has already enrolled for the fall semester and her college is giving her a studio apartment on campus next semester, so she can't wait to start feeling better so that she can hit the books again in the fall. 

Getting a job so that you can do some saving and then returning to classes on a part-time basis sounds like a good plan. My daughter may end up following your lead on that. Time will tell as we just cannot predict what the future has in store for any of us.

I will pray that your good health continues for a very long time!

Lisa :emot-dance:


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## Tesscorm

Great news!!!  So glad you're feeling so much better!  :banana:

Hope it continues for a long, long time! :thumright:


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## Rejhan15

hey guys well my depression is kinda creeping back on me....some days i feel fine and msot days i feel fatigued..lazy...unmotivated to do anything...i feel sad...gloomy...sometimes i cry a little as well...it sucks...i've been off cymbalta for a week now i believe...i keep having bad insomnia, mood swings...one second im good the next im angry..got an appt with my surgeon tmrw...just wanted to update you guys...lol i feel like a puppy or dog would help the depression out...b/c its someone thats always there for you will love you unconditionaly, wont judge you and you can just forget about your problems when you're with them..anyone else have any help with an animal companion helping their mood out?


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## Angrybird

Sorry to hear you are feeling down at the moment :hug: out of interest did the docs do any checks on your vitamin levels?


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## Rejhan15

nope just got back from the surgeons and on the 29th i find out what im gonna start either remicade or imuran or a combo of both...so we'll see and no they didnt do any vitamin checks


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## Mistybear

I can't imagine not finding peace and comfort in the eyes of a four legged companion. Nothing heals pain more, go to your local shelter! Adopt


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## ***Lisa***

Hi Rejhan:

Sorry to hear you are feeling down, but I'm glad that you saw your doctor today and will start on a new treatment plan soon. 

Two things - First, to help control the rollar coaster of emotions you are having these days, you really should consider taking Vitamin D3 and Folic Acid everyday. Vitamin D is a wonderful, natural mood enhancer and can, often times, take away depression.  My daughter is going through a rough flare right now but because she is taking Vitamin D3 and Folic Acid everyday, she does not suffer from depression, ever, which is amazing considering that she had to drop out of college and sits home five days a week while I am at work and never vets to see her friends because they are hundreds of miles away. So, you really should consider taking 5,000 IUs of Vitamin D3 and 400 MCGs of Folic Acid together everyday. It really works so give it a try. It definitely will not hurt you but can really help you.

The second thing is about a dog. Oh my gosh ... Animal companionship, in my opinion, is so wonderful, especially when you are home a lot not feeling well. We have a four year old yellow lab and he is the best company for my daughter when she's home alone, and she is home alone alot. She just told me the other day that she never feels lonely whenever she stays home because he is such good company and is always there for her, even when she just lays on the couch all day. So, yes, if your parents will let you get a dog, I highly recommend that you go to your local shelter and go pick out your new best friend. Don't get a puppy as they are a lot of work. There are lots of dogs out there that need good homes so you would not only get a new best friend, but you would also be giving a dog a good, loving home.

Please continue with your posts, Rejhan. I think of you often, hoping you and your parents are doing well.

Take care.

Lisa :rosette1:


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## Angrybird

I would ask your GP to get these levels checked, especially your B12, this is one of the common areas for people with crohn's to have a deficiency and could explain in part how you are feeling if you have a low level. I couldn't agree more about getting a dog though, they do make wonderful company and are always happy to see you.


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## Rejhan15

yeah just gonna be tough to convince my parents about a dog... :/ anyway where could i get folic acid and Vitamin d


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## Tuff

Hi Rejhan,
Unfortunately fatigue seems to be part of this disease. I try to get a good night's sleep, and have a short nap in the afternoon if I need one. If your depression continues, talk to your doctor. I was on antidepressants for a year after my hospitalization, and that helped. I have my vitamin levels tested every three months. Imuran is working well for me, I'm thinking that I'm finally in remission. My avatar is my cat Dax, she insists on sleeping on my bed every night. She knows a lot of tricks, she will sit pretty and play fetch. If your parents don't want a dog, how about a cute cat. :bigwave:


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## ***Lisa***

Rejhan15 said:


> yeah just gonna be tough to convince my parents about a dog... :/ anyway where could i get folic acid and Vitamin d


Hi Rejhan:

I agree that you most definately should have all of your vitamin levels checked, but the problem I have with my daughter's GI is that they refuse to test them more than once a year.  She just had blood drawn on Tuesday and before the test was ordered I asked them to also test her vitamin levels and they refused saying that there is no reason to test them for another year. What? They are running labs tests anyway and I want to ensure her vitamin levels are where they need to be, but, no, they won't do it.  So, what I am trying to say is you don't have to wait for them as taking 5,000 IUs of Vitamin D3 and 400 MCGs of Folic Acid will not hurt you and can only help you. Check out the Vitamin D Councils website or FaceBook page for more info on how important it is for everyone to take Vitamin D3 (not just Crohns patients) everyday.  I take 5,000 IUs of Vitamin D3 and 400 MCGs of Folic Acid everyday and it has done wonders for my mood.  Anyway, to answer your question, you can can buy Vitamin D3 and Folic Acid vitamins at any of your local drug stores or at a vitamin store like GNC or the Vitamin Shoppe, as they are very common vitamins and you do not need a prescription to buy them.

Good luck, Rajhan!

Lisa


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## Rejhan15

played basketball today....played my worst game ever....absolutely ruined my confidence...mood...everything...im tired of these damn mood swings...i also had a scare i jumped and stretched for a ball and had a real sharp pain around the area where they operated on....had me in tears...i could only jump not even a foot...and when i ran it felt like i was running in quicksand... *sigh*


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## ***Lisa***

Rejhan15 said:


> played basketball today....played my worst game ever....absolutely ruined my confidence...mood...everything...im tired of these damn mood swings...i also had a scare i jumped and stretched for a ball and had a real sharp pain around the area where they operated on....had me in tears...i could only jump not even a foot...and when i ran it felt like i was running in quicksand... *sigh*


You had a fairly serious operation just a few short weeks ago, Rejhan, so your body just isn't healed enough for you to go out all playing your favorite sport. This isn't forever, but if you check with your GI I can I guess that they would tell you that you need to hold off in playing a competitive game of basketball with yor friends for a while longer. Even though your incision might look pretty good, it takes longer what you can't see on the inside of your body to heal. I know it is hard to sit back and watch everyone else play when you miss playing so much because it has been so long since you have been able to join in, but you just have to take it easy and wait a while longer before you get back on the basketball court. You will be able to get back out there, just not right now. The last thing you want is to end up back in the hospital because your stitches inside have popped open, so please don't risk hurting yourself playing basketball or any other sport right now. I know it is hard to be a spectator, but you just have to listen to your body and not risk having a set back.

Just take it slow for now. You don't have to sit on the sidelines forever, just for now. Try not to feel down about it. Just remember this is not forever. It's just for now.


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## Rejhan15

***Lisa*** said:


> You had a fairly serious operation just a few short weeks ago, Rejhan, so your body just isn't healed enough for you to go out all playing your favorite sport. This isn't forever, but if you check with your GI I can I guess that they would tell you that you need to hold off in playing a competitive game of basketball with yor friends for a while longer. Even though your incision might look pretty good, it takes longer what you can't see on the inside of your body to heal. I know it is hard to sit back and watch everyone else play when you miss playing so much because it has been so long since you have been able to join in, but you just have to take it easy and wait a while longer before you get back on the basketball court. You will be able to get back out there, just not right now. The last thing you want is to end up back in the hospital because your stitches inside have popped open, so please don't risk hurting yourself playing basketball or any other sport right now. I know it is hard to be a spectator, but you just have to listen to your body and not risk having a set back.
> 
> Just take it slow for now. You don't have to sit on the sidelines forever, just for now. Try not to feel down about it. Just remember this is not forever. It's just for now.


see thats the thing my surgeon told me yesterday  that i could play basketball at my normal level just like i was before the operation...and then this happens


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## ***Lisa***

Rejhan15 said:


> see thats the thing my surgeon told me yesterday  that i could play basketball at my normal level just like i was before the operation...and then this happens


And this just goes to prove that doctors don't know everything. From the experience you had today, you know that your body isn't 100% back to normal, so listen to your body first and to your surgeon second. :ghug:


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## Rejhan15

***Lisa*** said:


> And this just goes to prove that doctors don't know everything. From the experience you had today, you know that your body isn't 100% back to normal, so listen to your body first and to your surgeon second. :ghug:


yeah prob not gonna play again for a while....idek if i wanna play anymore...that was embaressing as heck...i felt so weak out there, whats a way i can get my legs back to normal?


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## ***Lisa***

Rejhan15 said:


> yeah prob not gonna play again for a while....idek if i wanna play anymore...that was embaressing as heck...i felt so weak out there, whats a way i can get my legs back to normal?


When you have been in bed either at home or in the hospital for a long period of time, like you have been recently, your legs are going to be week. You should try to slowly get yourself back into shape by taking walks as that will not jar your intestines the way playing basketball would. You do not have to give up basketball forever, so don't think that will happen. You are young and have many healthy years ahead of you when you will be able to play again. What is your favorite basketball team?


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## Artisan105

Rejhan...

I am going tell you something someone should have told me when I was first diagnosed with Crohn's. 

Learn to adapt... learn to change your life... learn to find new things to love... because your life will never be the same as before. You will not be a normal healthy person like everyone else. You will go through many hardships. You will not be able to go on random trips. You will have to watch what you eat very carefully. And you will have relationships that fail because of this disease. 

I know it is a hard pill to swallow right before college when all your dreams are just starting but it doesn't have to be a dead end road. You just have to adjust to the hardships present and in the future. If you live in denial and pretend everything will be ok, then you will always be depressed. 

I played a lot of basketball, football, and tennis in high school but I realized quickly that my disease made my body to have limits compared to my friends. So I focused on my school instead of sports. After college, I knew I wouldn't graduate on time like everyone else so I adjusted my graduation time to 6 years instead of 4. I gave my body time to adjust with less stress. I played sports when I was healthy. I sucked because I haven't played in a while but you will be happy just to play, trust me. :] 

Just be real with yourself. Take care of yourself. No one else will do it for you. Life is hard. Nothing will be given to you on a plate, and just because you were dealt an unfair hand doesn't mean you just give up or get depressed. Make this into a motivation to do better. I know you can do it. You are a competitor! Think of someone telling you that you suck at basketball... what would you do next? Wouldn't you practice more? Wouldn't you train more? Wouldn't you watch training videos? 

Now is your time to find out your other talents. Strengthen them! And conquer your enemies. Be strong.


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## Rejhan15

***Lisa*** said:


> When you have been in bed either at home or in the hospital for a long period of time, like you have been recently, your legs are going to be week. You should try to slowly get yourself back into shape by taking walks as that will not jar your intestines the way playing basketball would. You do not have to give up basketball forever, so don't think that will happen. You are young and have many healthy years ahead of you when you will be able to play again. What is your favorite basketball team?


lol the worst team in the league sadly the charlotte bobcats lol


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## Artisan105

Rejhan15 said:


> lol the worst team in the league sadly the charlotte bobcats lol


I liked it when they were the Charlotte Hornets with Larry Johnson and Alonzo Mourning :]


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## ***Lisa***

Rejhan15 said:


> lol the worst team in the league sadly the charlotte bobcats lol


I always cheer for the underdog, too! The teams that are almost always on top are so conceited that I just can't stand it!


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## Rejhan15

yeah once they're good i can say ive always been a fan lol


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## ***Lisa***

Rejhan15 said:


> yeah once they're good i can say ive always been a fan lol


Haha! True ... And their victory will be that much sweeter!!:yfaint:


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## ***Lisa***

Hi Rejhan:

Was this week better for you than last week? I hope so. 

Lisa :soledance:


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## Rejhan15

been good no problems at all...just a little tender on the spot where my appendix used to be and near the resected area llike when theres any pressure applied....nothing like before though feeling good


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## ***Lisa***

Rejhan15 said:


> been good no problems at all...just a little tender on the spot where my appendix used to be and near the resected area llike when theres any pressure applied....nothing like before though feeling good


So glad to hear it!

:congratualtions:


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## Rejhan15

***Lisa*** said:


> So glad to hear it!
> 
> :congratualtions:


i shouldnt be worried though right?...i mean its supposed to be a little sore still...even though my surgery was a month ago?


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## Angrybird

It's definitely normal to feel tender, there is a lot of repair work still going on inside with muscles etc.  I am pleased you are feeling so well now


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## ***Lisa***

Rejhan15 said:


> i shouldnt be worried though right?...i mean its supposed to be a little sore still...even though my surgery was a month ago?


Oh yes, for sure. Although I have never had IBD surgery of any kind, I have had various other surgeries and it takes several months for your body to completely heal so the tenderness you have is completely normal.


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## QueenGothel

Idk what they use to close you up, but when Rowan had her surgeries they used dissolvable stitches.  They would poke at her in places on the inside, then I could actually feel them like little lumps.  When I showed her surgeon she said the stitches she used take 6 months to completely dissolve, that discomfort from them was normal.  Wondering if this could be for you as well.


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## Rejhan15

Well Monday i have an appt with my GI to i guess check up....and decide what my next steps are to hopefully get into remission, im guessing remicade and imuran we will see though...and Thank God for health insurance...my bills were HUGE...insanely high


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## Josephine

Great news feeling better.


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## Tesscorm

Glad things are going well!!!


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## ***Lisa***

Rejhan15 said:


> Well Monday i have an appt with my GI to i guess check up....and decide what my next steps are to hopefully get into remission, im guessing remicade and imuran we will see though...and Thank God for health insurance...my bills were HUGE...insanely high


Hi Rejhan:

Thanks so much for keeping us updated as it is so good to hear you are doing so well. On Monday, listen to all that your GI as to say and make sure to ask him to give you all of your options as there is always more than one way to try and achieve long-term remission. The choice is yours so make sure you and your parents are comfortable with your choice. Please let us know how it goes on Monday.

Yes, thank God for health insurance and for all of the other wonderful blessings that our Lord as yet to grant you.

Lisa :rosette1:

P.S. Nice pic! In the second pic, is that your Dad sitting at the table with you? Family means so much when we are going through rough times, don't they?


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## Rejhan15

lol no thats my grandpa pic was taken last summer in bosnia


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## Angrybird

Glad things are still going well, pls continue to keep us updated on how you are getting on.


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## ***Lisa***

Rejhan15 said:


> lol no thats my grandpa pic was taken last summer in bosnia


Ohhhhh. A trip to Bosnia last summer? Wow! How cool! Are you going back for another trip this summer?


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## Rejhan15

***Lisa*** said:


> Ohhhhh. A trip to Bosnia last summer? Wow! How cool! Are you going back for another trip this summer?


i hope...gotta be ready with this crohns and stuff though, be prepared i guess....really hope i can bc i usually go every 4 yrs and thats he only time i see my grand parents


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## ***Lisa***

Rejhan15 said:


> i hope...gotta be ready with this crohns and stuff though, be prepared i guess....really hope i can bc i usually go every 4 yrs and thats he only time i see my grand parents


You're right. It's all about planning ahead and being prepared. That's another topic you can ask your GI about on Monday. Before I brought my daughter on a trip to Hawaii last year, her GI gave her Cipro & Flagyl to take while we were on vacation. Maybe your GI can prescribe something like that, too.


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## Rejhan15

so im gonna go on remicade asap....and in 8 week if that hasn't worked i'll be getting a colonoscopy and will prob be on imuran as well as remicade..and if that doesn't work i have no clue what will happen


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## mccindy

Hi Rejhan,
I am new to the forum but I couldn't help feeling for you when reading your posts.  I have two sons who are just a couple of years older than you, so I can certainly appreciate what you and your mother are going through.  I hope so much that now that you've had surgery and are back on the meds that you go into remission for years and years.  You deserve a break from all of this!


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## ***Lisa***

Rejhan15 said:


> so im gonna go on remicade asap....and in 8 week if that hasn't worked i'll be getting a colonoscopy and will prob be on imuran as well as remicade..and if that doesn't work i have no clue what will happen


My daughter was on Remicade for just under three years. For many people it works great so I hope it works well for you, Rejhan. Don't worry about what might happen if or doesn't work as well as you hope. Just take it one day at a time and enjoy remission. I hope and pray your remission lasts your entire lifetime. Hey - It can happen!! :soledance:


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## Angrybird

Will be keeping fingers crossed the Remi will do the trick for you hun, it may take a couple of doses though before you can tell it is going to work or not.


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## Rejhan15

still no word on when im going to start remicade :/ in pain and they want me to go back on prednisone :/


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## ***Lisa***

Rejhan15 said:


> still no word on when im going to start remicade :/ in pain and they want me to go back on prednisone :/


Hi Rejhan:

Why are they delaying starting the Remicade if you are in pain? Where are you having the pain? Did you GI say it was normal to have this kind of pain this long after your surgery? Why prednisone rather than Remicade? I don't get it? Sorry for the fifty questions, but sometimes I just don't understand the decisions that GIs make, know what I mean?

Hang in there!

Lisa :ghug:


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## Rejhan15

***Lisa*** said:


> Hi Rejhan:
> 
> Why are they delaying starting the Remicade if you are in pain? Where are you having the pain? Did you GI say it was normal to have this kind of pain this long after your surgery? Why prednisone rather than Remicade? I don't get it? Sorry for the fifty questions, but sometimes I just don't understand the decisions that GIs make, know what I mean?
> 
> Hang in there!
> 
> Lisa :ghug:


guess the insurance company is being dumb or something...pain is kinda the same basically when i touch it a little bit it feels bruise..stomach is kind of hard...having a lot more diarrheah lately and dont have as much of an appetite lately...


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## ***Lisa***

Rejhan15 said:


> guess the insurance company is being dumb or something...pain is kinda the same basically when i touch it a little bit it feels bruise..stomach is kind of hard...having a lot more diarrheah lately and dont have as much of an appetite lately...


Hmmmm... L-Glutamine has helped my daughter's diarrheah so you could check that out at your local healthy living store. She takes 20-40 grams of it a day. Insurance companies are not always easy to deal with so that definately can be frustrating.


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## Rejhan15

Hey guys little update...the prednisone is in full effect...non stop insomnia...weight gain all that...not really helping with the pain...but good news starting remicade tmrw at 10 AM....wish me luck!


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## ***Lisa***

Rejhan15 said:


> Hey guys little update...the prednisone is in full effect...non stop insomnia...weight gain all that...not really helping with the pain...but good news starting remicade tmrw at 10 AM....wish me luck!


Good luck tomorrow! Once you start the Remicade, you can taper off the prednisone and then you will be able to sleep again. Let us know how your first infusion goes!

:ghug:


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## mccindy

:smile:Good luck with the Remicade!  It seems like a lot of people do get relief from it.  I hope it works very well for you and you're able to feel better.


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## Ki3

Hey, im glad to here that your going on remicade, I was going to but when they did the tb test they said it didnt work for some reason? They tried again but still inconclusive... so had an ng tube up and went on a liquid diet I would ha e preffered remi more..good luck!


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## Rejhan15

Infusion went good...took 2 and a half hours...glad i had a laptop with me...anyway i feel fine after it just was tired...really tired so i took a really long nap after...next infusion in 2 weeks


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## ***Lisa***

Rejhan15 said:


> Infusion went good...took 2 and a half hours...glad i had a laptop with me...anyway i feel fine after it just was tired...really tired so i took a really long nap after...next infusion in 2 weeks


Glad your first infusion went so well! It's gonna be a great summer!! :rosette1:


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## ***Lisa***

Hi Rejhan:

Just checking in to see how you are doing. Are you in remission now, I hope?

Lisa


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## JennyT

OMGosh I just see you were not talking to me I think - oh well, this is for free then hahahaha

 Well, I had an MRI and they said there was no sign of the disease, but my body isnt saying that. From the time I was at the end of the nasty steroid and went onto a kinder one I have gotten slowly worse and the MRI was during that time. 

Thats the kicker cos I sure didnt FEEL like there were no signs of the disease. At that time I was on a gluten free/sugar free/lactose free/paleo diet and I was still experienceing regular flares of pain at about 60% of full noise, and yellow water or baby food stools 5 - 15 times a day and sometimes uninvited. I was getting spasms 2-3 times a week and all the mouth problems, swollen bum bumps and painful thumbs and wrists had returned.

This has gotten worse now and about 4 months ago I began to experience really bad pain in my shoulders and elbows and the hand pain became worse, bad headaches often, pain in ankles/heels again and at times in my knees, hips and lower spine, This pain is terrible and leaves me unable to do the most simple things some days and sleep is really hard to achieve. It does wax and wain which is weird - and the right side is always a little worse than the left. (Mostly it waxes!!)

Also - my tum seems to slowly be unravelling its wellness - food was becoming a trigger more often to deep aching pain 24-48 hours and then last week I got a full on 100% pain OMG flare over 5 days - still not quite right now over a week later. 

I was away from home and contracted the worst pain (you know what Im saying!) couldnt move, was semi sort of concious only, started vomitting bile over an over, sweated, then got the major shivers teeth chattering uncontrollably for several hours and then it slowly slowly abated to severe squeak making spasms about every 30-45mins. This happened over 5 days, 2 of them I barely remember, all I had to eat was 1/2 a lemonade iceblock over that time.

I dont think that is a one off - something to look forward to again Im picking.

QUESTION - is that normal when an MRI shows no signs of the disease? Im diarrhea ridden always, have constant low grade pain off and on, tired tired tired and then the joint pain (Is that crohns?????) which has turned me into a cripple as well as a poopy pants. Not to mention the escalating occurances ending in what happened this week.

Strangely your contact is very timely - my gastro specialist appointment is tomorrow! So I will tell him this stuff. 

Thanks for your contact - I really appreciate it.  HUGXX


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## Rejhan15

***Lisa*** said:


> Hi Rejhan:
> 
> Just checking in to see how you are doing. Are you in remission now, I hope?
> 
> Lisa


ehhhhhh still getting pains....diarrheah all that...still gotta take prednisone and what not


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## ***Lisa***

Rejhan15 said:


> ehhhhhh still getting pains....diarrheah all that...still gotta take prednisone and what not


Oh geesh. You've had two Remicade treatments so far, right? When will you have your next infusion? Maybe the third infusion will turn things around for you. But you are feeling better than you did before your surgery, I hope? Usually GIs will take patients off prednisone when they start Remicade, at least that is what they did before my daughter started her first Remicade treatment. Please keep us updated on your progress.

Sending lots of thoughts & prayers your way.

Lisa :hippy:


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## Rejhan15

***Lisa*** said:


> Oh geesh. You've had two Remicade treatments so far, right? When will you have your next infusion? Maybe the third infusion will turn things around for you. But you are feeling better than you did before your surgery, I hope? Usually GIs will take patients off prednisone when they start Remicade, at least that is what they did before my daughter started her first Remicade treatment. Please keep us updated on your progress.
> 
> Sending lots of thoughts & prayers your way.
> 
> Lisa :hippy:


thanks! and yeah this was my 2nd my 3rd is at the end of june...yepp feels better than before the surgery


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## ***Lisa***

Rejhan15 said:


> thanks! and yeah this was my 2nd my 3rd is at the end of june...yepp feels better than before the surgery


It takes a while to get into a good remission that will stick around for a while, but you will get there. :smile:


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## ***Lisa***

Hi Rejhan - How have you been feeling these days?


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## Rejhan15

***Lisa*** said:


> Hi Rejhan - How have you been feeling these days?


nahh not really got a doctors appt today though so hopefully i get some sort of update on this


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## Rejhan15

Colonoscopy July 23rd...finally i get some kind of update!


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## ***Lisa***

Rejhan15 said:


> Colonoscopy July 23rd...finally i get some kind of update!


Hopefully, you will get some good news after the scope.


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## Rejhan15

BASICALLY IN remission!!!!! YESSSSSSS either none or almost no inflammation left!!!! can't remember what the doc said cuz the medication lol.....Remicade has helped me feel better the last few weeks after the 3rd time


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## Tesscorm

Amazing news!!!! :banana:

Hope it lasts forever!!!


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## ***Lisa***

Rejhan15 said:


> BASICALLY IN remission!!!!! YESSSSSSS either none or almost no inflammation left!!!! can't remember what the doc said cuz the medication lol.....Remicade has helped me feel better the last few weeks after the 3rd time


Yahooooo!! Such awesome news!!! Congrats!

:dusty:


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## ***Lisa***

I hope you are continuing to do well, Rejhan!


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## Ki3

Ha ha I just got the email and I read through this all again, I even read my own comment, yet I never remember posting it! My brain fog gets worse ha ha, but I hope your doing ok! xx


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## Rejhan15

Yes I have been doing pretty good the remicade has been working but i still get diarrheah...stomach pains on occasion and i've lost 20 pounds but i attribute that more to me playing a ton of sports went from like 184 to 164...i eat twice a day usually so that's good....I got a full time job and trying to save money up to go back to college in August....and at 19 i finally got chicken pox lol...what a terrible week lol but i'm all good now thanks for still caring!!! really appreciate it


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## ***Lisa***

So glad to hear you have survived the chicken pox, Rejhan, and that you have found a treatment plan that works for you! You have been through a lot and proven yourself to be a strong & resilent person! I hope you stay happy & healthy for a very long time!


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