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My Story
- Thread starter Rejhan15
- Start date
Angrybird
Moderator
- Location
- Hertfordshire
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?
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 monthReally pleased that you can be going home tomorrow
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:
:dance:
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:
- Location
- Missouri
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!
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!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
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:
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:
Angrybird
Moderator
- Location
- Hertfordshire
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?
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
Lisa
- Location
- Michigan, USA
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!
I hope it clears up soon and sorry your still feeling bad. Keep moving!
- Location
- Michigan, USA
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.
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.
How are you doing today, Rejhan? Any improvement?
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!
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:
Angrybird
Moderator
- Location
- Hertfordshire
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.
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.
Angrybird
Moderator
- Location
- Hertfordshire
Yay! :dance:
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
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
Artisan105
Yondaime
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.
Angrybird
Moderator
- Location
- Hertfordshire
So pleased to hear you are doing so well! Long may it continue :ybiggrin:
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!!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!
Now, get out there and have some FUN!!
Lisa. :smile:
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
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
Artisan105
Yondaime
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.
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:
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?
Angrybird
Moderator
- Location
- Hertfordshire
Sorry to hear you are feeling down at the moment :hug: out of interest did the docs do any checks on your vitamin levels?
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:
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:
Angrybird
Moderator
- Location
- Hertfordshire
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.
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:
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:
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
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.
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 happensYou 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.
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?
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?
Artisan105
Yondaime
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.
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.
lol the worst team in the league sadly the charlotte bobcats lol
Artisan105
Yondaime
I liked it when they were the Charlotte Hornets with Larry Johnson and Alonzo Mourning :]
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!
Haha! True ... And their victory will be that much sweeter!!:yfaint:
Hi Rejhan:
Was this week better for you than last week? I hope so.
Lisa :soledance:
Was this week better for you than last week? I hope so.
Lisa :soledance:
i shouldnt be worried though right?...i mean its supposed to be a little sore still...even though my surgery was a month ago?
Angrybird
Moderator
- Location
- Hertfordshire
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
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.
- Location
- Michigan, USA
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.
- Location
- Middlesbrough
Great news feeling better.
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?
Angrybird
Moderator
- Location
- Hertfordshire
Glad things are still going well, pls continue to keep us updated on how you are getting on.
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
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.
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!
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!
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:
Angrybird
Moderator
- Location
- Hertfordshire
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.
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...
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.
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!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!
:ghug:
Glad your first infusion went so well! It's gonna be a great summer!! :rosette1:
Hi Rejhan:
Just checking in to see how you are doing. Are you in remission now, I hope?
Lisa
Just checking in to see how you are doing. Are you in remission now, I hope?
Lisa
- Location
- New Zealand
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
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
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:
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:
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
Hopefully, you will get some good news after the scope.
I hope you are continuing to do well, Rejhan!