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Rejhan15

Rejhan15

Joined
Feb 12, 2013
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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
 
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
 
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 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.
 
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
 
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 :)
 
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?
 
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 :-(
 
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?
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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.
 
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
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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
 
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
 
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.
 
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
 
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.
 
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?
 
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?
 
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?
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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
 
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.
 
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.
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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
 
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.
 
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
 
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
 
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...
 
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.
 
***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.
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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
 
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...
 
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.
 
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...
 
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?
 
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?
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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
 
Angrybird said:
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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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...
 
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.
 
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.
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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
 
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
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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
 
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:)
 
Hi Rejhan::

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

Lisa :ghug:
 
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
 
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
 
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:
 
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.
 
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
 
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
 
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.
 
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:
 
***Lisa*** said:
Hi Rejhan:

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

Lisa
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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
 
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?
 
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:
 
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
 
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.
 
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
 
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
 
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
 
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..
 
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:
 
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....
 
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.
 
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:
 
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!
 
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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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
 
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! :)
 
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
 
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!
 
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
 
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?
 
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?
Click to expand...

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?
 
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.
 
***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.
Click to expand...

no they read it wrong the inflammation is still there PLUS scarring so im screwed...this sucks
 
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.
 
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...
 
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.
 
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.
 
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
 
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
 
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:
 
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! :)
 
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:
 
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
 
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
 
So glad to hear the surgery went well!!! :D Don't try to rush to recover, take care of yourself!!!

:ghug:
 

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