• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Our Story

H

Hana

I discovered this forum a few weeks ago when my husband told me that his doctor said that there is nothing else he can do for him but schedule him for the surgery. I will skip over how I felt at the time...I just know what I was not capable of thinking straight or to stop crying and I usually don't cry. I exchanged a few messages with Peaches and that helped a ton (I can't thank you enough Peaches). She asked me to post our story here but I knew I needed time to get back to my old self because I wanted to be able to write facts only. No drama or feelings....

A little background...

My husband was diagnosed with Crohn's about 10 yrs ago (I didn't know him at the time). He is scheduled for his first bowel resection this coming Tue (11/10). He was on all medications that most of you were on..Prednisone, Pentasa....steroids years ago...just recently they had him on Remicade. I guess the main reason why he's having the diseased part of his bowel removed is because he is in a lot of pain. He doesn't sleep many nights and then it makes it really hard to function during the day with no sleep. Fistulas are also a problem. However he doesn't go to the bathroom many times a day like a lot of you do, and he doesn't have too many foods that bother him. Pretty standard...popcorn, nuts, seeds, alcohol sometimes. And I think he hasn't had solid stool in years.

So that's our story in a nutshell.

I was hoping I can post my questions here sometimes and you guys can help me understand what you're going through, because I feel like a lot of times he just doesn't want to worry me so he hides a lot of things.
 
farm

farm

Captain Insaneo
Welcome first off.
I can understand and see that he would keep some of the pain and other things hidden from you as best he can. I still do that with my family and it is to keep them from being worried so much.

I just had bowel resection 12-31-08 and it wasn't as bad as I feared so don't be too worried about the surgery coming up. Getting the diseased bowel out will probably give him some much needed relief.
Post any questions you have and I'm sure someone on here will be able to answer them for you. And please keep us updated about his situation.

:welcome: again!!
 
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H

Hana

Thanks farm! I will be sure to do that. I hope you won't think I'm rude but I really have tons of questions for someone who has already been though this....and so recent too.

What kind of a surgery did you have? They said if he has laparoscopic surgery the recovery shouldn't be too bad. How long did it take you to heal? How soon were you able to walk? Was this your first?

@Peaches...Thank you Peaches. You just made my eyes fog again..but can't cry now. The least I can do is support him....I'm really nothing special.

You are such a caring and wonderful person. I hope for all of your sakes they find the cure for this disease soon!!!
 
G

Guestly

Good luck Hana - sometimes I think's even worse for the "better half" in a relationship. You so want to make things better but feel powerless and impotent.

I have everything crossed for things going smoothly.

Lishyloo x
 
farm

farm

Captain Insaneo
What kind of a surgery did you have? They said if he has laparoscopic surgery the recovery shouldn't be too bad. How long did it take you to heal? How soon were you able to walk? Was this your first?
Click to expand...
1. I went in for the laparoscopic but they were unable to do it that way so I had an open appendictomy and hemi-colectomy. I have about a 13 inch scar on my right side from that. The reason they had to open me up was becasue my intestines had got so bad that they collapsed.
2. It took me about 3 weeks to get back to work.
3. I was up walking the second day after surgery.
4. This was my first and only surgery to date.

Post all your questions or feel free to PM me!!
 
Nancy Lee

Nancy Lee

Welcome to the Forum Hana! :)

It's wonderful that your hubby has such a supportive spouse!

Feel free to ask questions here or just come in and vent..
we're here for you...and will be sending positive thoughts
to your husband and you next Tuesday.

Welcoming hugs~Nancy
 
imisspopcorn

imisspopcorn

Punctuation Impaired
Hi Hana and Welcome,

I had a resection August 2008. They removed 6 inches of my small bowel. I was pretty much confined to the couch due to the pain and vomting before surgery. The surgery has helped me in that the pain is pretty much gone. I did not have it done via the laproscope either. Whatever questions you have, please ask. Most everyone here is more than happy to answer them.:)
 
H

Hana

Thank you everyone for welcoming me. You are all so nice to be so kind to me, but please don't make this about me..I think all of you are so strong and amazing that I feel so little when I see how you fight this disease day after day and are still able to laugh about it, and enjoy life however hard it is at times. I applaud you for that...I really don't think I would be able to do it..so u are much bigger/better than me. :)

@imisspopcorn
He is not throwing up but he is in a lot of pain...almost every day. Fistulas are of course painful too. However, because I read about people not being able to go to the bathroom, or going too many times, or having blood in their stool, or throwing up and then having bowel resection, I thought that maybe we can prolong this resection as long as possible..but in the end I thought...who am I to influence his decision. I am not going through this hell every day, I don't know how awful it is as much as I try to understand and be supportive...so I decided to step back and let him decide for himself. I just thought...if it was just a headache you had every day for a year (let alone for as many years as he has) you would maybe be willing to do something as drastic as that to be rid of it for a little while...
 
imisspopcorn

imisspopcorn

Punctuation Impaired
Hana, I hope the surgery helps him regain some normal quality of life....I know it's not a cure, but it sounds like the best option for him at this time. My disease has come back to attack the portion where I had my resection. I am on Remicade now. I am hopeful for another 10 years before I need another surgery. Let us know how he does, and also, tell him we are pulling for him.
 
farm

farm

Captain Insaneo
Surgery and some follow up meds will probably make him a new and healthier man!!
 
Pirate

Pirate

Hana said:
Thanks farm! I will be sure to do that. I hope you won't think I'm rude but I really have tons of questions for someone who has already been though this....and so recent too.

What kind of a surgery did you have? They said if he has laparoscopic surgery the recovery shouldn't be too bad. How long did it take you to heal? How soon were you able to walk? Was this your first?

@Peaches...Thank you Peaches. You just made my eyes fog again..but can't cry now. The least I can do is support him....I'm really nothing special.

You are such a caring and wonderful person. I hope for all of your sakes they find the cure for this disease soon!!!
Click to expand...
Hana, never, ever think that your nothing special. The most important thing for a Crohnie is thier family. We can bare the pain better if we have someone to share our feelings with. My wife is my rock. We have been a united force against this monster since day one and I couldn't have done it without her. Learn to ask any question that pops into your head because no question is dumb. Never give up asking until you get the right answer and never let the Dr. brush you off. Research everything you can about this and always look for answers from people like the ones here.
Good luck with everything and we will be including you and your husband in our prayers for a speedy recovery.
 
H

Hana

Thank you so much guys!! It means a lot...I've been getting messages from a few friends that we shared this with and I really appreciate it. We're both very private so not everyone knows about the disease or the surgery.

I'm sitting here with him waiting....the case before him is taking longer than expected...so we're already 1 hr later than his scheduled time. They said the procedure should take 5 hrs...

I will keep you posted.
 
GirlFriday

GirlFriday

Welcome Hana! I have my fingers crossed for you and your husband. Once the first recovery bit is over I am sure he will be feeling fantastic.
 
H

Hana

Hi everyone...I apologize for not writing yesterday but I was trying to update his family overseas and our friends here and running around chasing him from one room to another and making sure they get him a bed before I left..but I was still there from 6:30 am to 9 pm..and by the time I got home I had to get myself ready for work.

The surgery went very well..they were able to do laparoscopic surgery and they took out 15-18 in of small intestine and 6 in of large intestine. They did not even have to do temp ileostomy. Overall I was really happy how well everything went. His surgeon said...I hate to say that he's an average, but he really is an average...considering how long he's had this disease and what we see in other patients he's doing good.

He was in a LOT of pain yesterday and as you all know the recovery will be slow but he should feel a lot better soon.

Thank you so much for your thoughts and words of encouragement...it means a lot!!!
 
C

Crohn's 35

Inactive Account
Great stuff! Having the laproscopy means that he will heal really quick, of course there is pain but rest is sooooooo important. I had the same surgery long time ago, best thing I ever did, but I was on Entocort as a maintenance drug, did they give him anything? He will be glad when he is feeling better, and should stick to a diet and avoid alcohol and he should be good for along time!Maybe for good, no one knows!
 
H

Hana

Today is a good day!! I don't know why I feel more energetic and happier but I do because I know he feels better...I know it's weird. :))

Yesterday was a not a great day..they started him on clear liquid diet and then he started feeling nautious so they said, ok, can't have anything other than ice then. They also had him walk a bit yesterday morning and they were really concerned when they saw that he was bleeding a little bit so they put him on bed rest. Last night when I was there his surgeon came to check on him. It was really late but I guess it was good that he was busy all day because I was able to talk to him some more about the surgery. He said that it's pretty common to bleed a little bit after the surgery.

But today is much better!!! He called me at 7:30 this morning and said that he walked a little bit. Later on when I called to check on him he said he walked 4 times and all by himself. They put him back on clear liquid diet in the morning, and I think advanced to full liquid (bc he said he had ice-cream and I think that counts as full liquid). Tonight the plan is to try GI Soft diet!!! They took the catheter out and he is wearing his clothes so that's a plus too. He is definitely feeling better...not taking too much pain medication so he's not as drowsy as he was the last two days.

@Jettalady
Yeah, I was really happy when I heard that he was able to have laparoscopic. They gave him an antibiotic and yes something else (I can't remember the name) that should help with the inflammation. Not sure if he'll have to take any medicine and how much until he sees his GI. For now they want him to heal before he sees Dr. A..so we'll see then.

@Peaches..I feel so special that you came to check on him. Thank you so much. :))
 
Nancy Lee

Nancy Lee

Hana this is fantastic news!!!
Next thing you know he will be home and feeling so much better.
I've been following your story and one day can and does make a
big difference sometimes!

I'm smiling here big time! :)
Hugs~Nancy
 
H

Hana

Peaches said:
Yay Hana!!! We needed some good news today and this definitely fits the bill!! I am so glad he seems to be doing so well so quickly. I will pray that this keeps up for him and that he gets home soon. I'm sure he is already missing his own bed :O) Glad you are getting the benefits of his feeling good as well. This disease can be tough for all parties of a family involved. One good day at a time!!
Click to expand...
I know I read MG's thread :((( I feel so bad that she's having such a hard time...I truly hope she recovers soon and comes to forum so I can get to know her too.


Thanks Nancy. Hugs back!!!

I want him home sooner rather than later, but I want him to get better even more. The last thing I want is for him to come home and get worse because he did not reach those milestones they want him to reach while he's here and I can't help or get help soon enough....so I'm being patient.
 
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farm

farm

Captain Insaneo
Good deal sounds like he will breeze through this. They kept telling me the most important thing was to get up and walk afterwards so it sound like he's following their orders! Great news!!
 
C

Crohn's 35

Inactive Account
Hana said:
Today is a good day!! I don't know why I feel more energetic and happier but I do because I know he feels better...I know it's weird. :))

Yesterday was a not a great day..they started him on clear liquid diet and then he started feeling nautious so they said, ok, can't have anything other than ice then. They also had him walk a bit yesterday morning and they were really concerned when they saw that he was bleeding a little bit so they put him on bed rest. Last night when I was there his surgeon came to check on him. It was really late but I guess it was good that he was busy all day because I was able to talk to him some more about the surgery. He said that it's pretty common to bleed a little bit after the surgery.

But today is much better!!! He called me at 7:30 this morning and said that he walked a little bit. Later on when I called to check on him he said he walked 4 times and all by himself. They put him back on clear liquid diet in the morning, and I think advanced to full liquid (bc he said he had ice-cream and I think that counts as full liquid). Tonight the plan is to try GI Soft diet!!! They took the catheter out and he is wearing his clothes so that's a plus too. He is definitely feeling better...not taking too much pain medication so he's not as drowsy as he was the last two days.

@Jettalady
Yeah, I was really happy when I heard that he was able to have laparoscopic. They gave him an antibiotic and yes something else (I can't remember the name) that should help with the inflammation. Not sure if he'll have to take any medicine and how much until he sees his GI. For now they want him to heal before he sees Dr. A..so we'll see then.

@Peaches..I feel so special that you came to check on him. Thank you so much. :))
Click to expand...

I am so happy for the both of you! He is well on his way, everything is pretty much on schedule. He is lucky to get ice cream, me being lactose intolerance I couldnt. Keep us posted on his progress, it must be such a relief for you too! Hugs to you both! So nice to hear good news.:)
 
H

Hana

@farm
I think the fact that he was very active before this is playing a big role in his recovery....he played sports, he's very patient and disciplined so when you tell him that he needs to watch what/how much he eats you can be sure that he will obey. Many others (present complany included) would give in to their cravings but I know he's a much better/stronger person than me. :))

@imisspopcorn
You know I meant to tell you that I was thinking of you while waiting for him to come out of the surgery...just 6 in I kept asking God (even thought I'm not even religious)...just like imisspopcorn. :)) I know silly...

@jettalady
Hugs right back at you!! (Btw I'm a "jettalady" too) :))
That's funny because I asked him about that too last night...he could always tolerate ice-cream and certain cheeses but not milk. I asked.."hm how come they brought you milk..aren't all Crohn's patients lactose intolerant"..he said that he doesn't think he is, it was just one of the foods that he could not tolerate because his Crohn's was so bad.

So update for today...he passed gas, had bowel movement and he was able to take his pain meds orally so he is coming home tomorrow!!!
 
C

Crohn's 35

Inactive Account
Funny you mention how some things we can eat with dairy, I can eat yogurt, frozen yogurt and old cheese. Maybe because it is formented and pasturized in a different form. I dunno. I can even put a bit of cream in my coffee, but give me milk and omg, pain and gas galore! Even with Lactaid, doesnt cut it.

Great news he is home tomorrow! Let us know his day to day healing!
 
H

Hana

Hello everyone!

I did not want to bore you with updates every day, but he's doing much better. I keep reminding him that he should not start moving and doing too much too soon because I read about some people getting sick even 2-3 weeks after surgery.

He ate 4 slices of toast this morning for breakfast and had solid stool for the first time in years. He walks every day for 15-20 min and just rests a lot during the day. We made a trip to a nearby library and movie store to get some things to keep him entertained and I had him put a pillow on his stomach. You don't even realize how bumpy our roads are until you have such surgery. He said it helped a lot because we were out for a 5 min ride a day before without a pillow and he said he did not think a pillow makes a difference but it did. I came up with that idea because I heard nurse tell him to put a pillow on his stomach when he needs to caugh or go to a bathroom so I figured it must help.
 
H

Hana

I know I have not been updating you as often as I would have liked but I was busy caring for him at first..then holidays rolled around...and I'm sure you understand how that goes. Partially I was also waiting to see him go in remission so I can post positive news on here because I know how much I wanted to read that someone was completely cured 4 weeks after their surgery.

Well it has been two months since he had his surgery and he is still not in remission. Solid stool once or twice in the first few weeks but still goes to the bathroom about 5 times a day on most days with D of course. Today is his first appt with his GI and I took some time off work to go with him..I'm really curious to see what he'll say.

Now why am I posting now....I have been meaning to ask if those of you that had bowel resection can tell me how long did it take before you felt you were in remission and if you did at all? Did your doctor put you on any medication after the surgery or did they wait and see if Crohn's comes back?

Over the holiday something grew on his butt about the size of a ping pong ball and it was super painful to sit or walk...I know we'd go shopping and he'd ask me to cut it short bc it hurts to walk (and he usually does not complain) but I insist he tells me all the details now so I know exactly what's going on with him.
 
farm

farm

Captain Insaneo
Hey Hana,
Hope the appointment goes well today and you guys get some positive answers.
After my surgery I wasn't on anything for 3 months. Then after my GI appointment and a colonoscopy, they found my crohns was still active so I was put on several meds; prednisone, pentasa, etc;
Well it's been over a year since my surgery and I'm still not in remission but doing much better. I'm only on Pentasa now as a maintenance drug.
 
P

Peaches

I was thinking about you just the other day Hana - wondering how you two were doing. Glad to hear from you. I am sorry he doesn't seem to be doing as well as you would have hoped. After my surgery they put me on Asacol - which IMO didn't do a whole lot - in fact, after being on it a long time my doc figured out it was actually making my worse! I also had to do several rounds of steroids before they decided to to long term immunosuppression. However I will say - that post surgery - I felt (and still feel) better than before and still think that it has helped my quality of life.

It definitely sounds like he needs to be on a form of maintenance drug and sooner rather than later. I'm am also going to tell you that it sounds like he has an abscess or fistula on his bum. This is not great news and is a sign of disease activity - but I'm sure the doc will address that today. If it does turn out to be a fistula - maybe they will decide to put him on Remicade (which is what I have been on for over 6 years now) and maybe this will get things quiet for him. It worked wonders for me for a very, very long time. They will probably put him on Cipro and Flagyl right away would be my guess. He needed to call the doc as soon as that bump came up -- just an fyi. I'm sorry - I know this is not what either of you wanted to hear :(

I hope you are holding up ok through all of this. Please keep us posted - and *always* feel free to come here to vent or for support whenever either of you need it! Good luck with the appointment - ask LOTS of questions....
 
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C

Crohn's 35

Inactive Account
HI Hana, sorry he is still having a rough time. I was put on Entocort immediately after my first resection. Because my surgery was laproscopic, I healed within 6 weeks. My Gi now says if I have a 3rd resection, the top docs in Toronto are saying an agressive Flagyl and imuran is recommended for about 3 months. However all Gi's have their own opinions and dealing with youngsters you want to have a drug that maintains without over kill.

Is your son on any meds now?

As for his ping pong sized pain, could be a fistula or abscess. Sorry I havent had either, maybe someone can come on here and elaborate.

I know you must be at your wits end too. Hugs.
 
H

Hana

Thank you guys so much for your quick response. That's what I was afraid of (that the growth might be a fistula). Poor guy he just can't catch a break. I'm glad that he decided to tell his parents about all this..he always tries to hide things from them to "protect" them..but then they don't really understand how serious his condition is. (Sorry I'm venting)

I plan to ask tons of questions that's why I took some time off work...I think I'm a lot more forward and agressive (when need be) than him. I will let you know what happens today. We have to head out but I just wanted to thank you all for responding...we'll talk more later. :)

Hugs back Jettalady :) He's my hubby..not son.
 
C

Crohn's 35

Inactive Account
Sorry got mixed up with another. Please keep us updated and always know that we are here to answer questions, keeping in mind we are not doctors but we all love to share our experiences. My husband worries about me all the time and that is why he is a keeper, I am sure your hubby feels the same. Support means alot.
 
imisspopcorn

imisspopcorn

Punctuation Impaired
Oh man, I hope he doesn't have an abscess, but that sounds like what it is.

I was on prednisone and asascol post-op. At about 10 months post-op my colonoscopy showed active disease. Although I felt so much better after the surgery, I was put on Remicade. I think I am in remission. I whisper it because I don't want to jinx it. I'm glad you updated us. Good luck at the doctor.
 
H

Hana

You guys were right..it is fistula. He knew it was fistula and purposely did not want to use that word with me bc he knew that I read about fistulas. When we were on our way to see his doctor I said, u know I posted on that forum and they all think it's a fistula..he said 'oh i know it is'. I asked..did you know that before, and he said he did. That boy..he just keeps on hiding..and even today at doctor's when they ask him he just tries to downplay his symptoms so that's why I knew before his surgery that he was suffering a lot bc he never complains.

Anyways...his doctor said that he needs to see his surgeon asap and that he will drop him a note and make sure he can see him this week because usually you have to wait longer to see him. He will then either drain that fistula right then or schedule him for a procedure. He already has something there that this surgeon did (before bowel resection) to help his fistula drain in one spot...I'm not sure what it's called, but maybe someone here knows. So I don't know how come this new fistula came up in a different spot..why is it bypassing that drain that his surgeon put in last year. Oh man this disease..it is so complex.

Also, as soon as they fix this (which he's scheduled for this coming Thurs) his doctor will put him back on Remicade.

I asked his doctor about SCD and he said he would not be opposed if he tried, but not now because he wants him to gain some weight. He's 6'4" and 185 lbs..and that's with shoes and all that clothes on him...I know if he weighed himself in the morning before he ate and put all that clothes on he'd be just below or right at 180.
 
H

Hana

@imisspopcorn
Even though he is having rough time with this right now it is still not as bad as that hell he was living before the surgery...so I am going to whisper this too...I am glad he did it. He can at least sleep at night and has no pain in his stomach. Poor baby...he's been through so much with this bastard (oh u guys didn't know..that's what i call Crohn's). :))

Also, his GI asked him about Imuran but my husband's old GI had him on Imuran 2-3 yrs ago and he literally could not get off the couch..he had pain in his joints and such.

Oh and Peaches you were right...he also gave him Cipro and Flagyl to help with D.
 
C

Crohn's 35

Inactive Account
Glad you got an answer quick so he can have treatment or sugery to help relieve his pain. Again, you are a great wife to be there for him, alot of spouses arent. He is probably sparing you emotional stress by not telling you, besides most men don't tell all.

Keep us posted, I am so glad you found us!
 
P

Peaches

Well, not the news you prolly wanted to hear - but none the less, it is news. I hope he can get it drained and back on the Remi to get those things cleared up. Poor guy - I feel for him Hana - and you too. You guys are just gonna have to take turns keeping each others chin up on this one. Praying it heals those fistulas up and his gut stays quiet!
 
tamesis

tamesis

Welcome to the forum Hana. i think it's great that you're here to support your husband.
i don't have any advice for you, as i am still waiting to get a diagnosis, but i hope for the surgery to go smoothly and offer him some relief from the pain.
 
H

Hana

Thank you guys so much for reading and replying..it means a world to me. People around us don't really know (partially bc we're both very private) and even those that do, don't really understand...so your replies mean so much.

The thing that I forgot to ask you guys yesterday is..did anyone take Remicade for some time and then stopped for a while...his doctor yesterday said that he might be at an increased risk because his last Remicade dose was 5 months ago and now that they'll re-introduce it to his body his reaction might be worse than someone that is taking it for the first time. I'm really not sure why this makes any sense and I asked him..and he said something about your body producing antibodies...but I am not really satisfied with that answer.

Does any one of you know about this?
 
H

Hana

Oh and my next stop will be Remicade club..I'm sorry if my question was already answered there and I'm repeating things.
 
C

Crohn's 35

Inactive Account
Hey dont worry how else will you gain information if you dont know where to look. sometimes the threads aren't showing in the first panel. Being new, we just want to help you.
 
imisspopcorn

imisspopcorn

Punctuation Impaired
Hey Hana...I had my first 2 doses in August of 2008. Then I had surgery and it was discontinued. I started back up around July 2009. No reactions...Did the doctor say they can test him for antibodies just to be safe?
 
H

Hana

imisspopcorn said:
Hey Hana...I had my first 2 doses in August of 2008. Then I had surgery and it was discontinued. I started back up around July 2009. No reactions...Did the doctor say they can test him for antibodies just to be safe?
Click to expand...
He did not..I wish I knew that they could test him to ask about that yesterday. His doctor just mentioned that he should maybe take some Benadryl or Zyrtec before and see how it goes.

He did send him to give blood so they can check vitamin B12 and possibly other deficiencies.
 
imisspopcorn

imisspopcorn

Punctuation Impaired
I've heard on here that there is a test. I don't know anything about it though. You really never know, I could have a reaction at my next dose.??? Try not to worry, and take the meds like he suggested. Fingers crossed for you both!!
 
H

Hana

Thanks imisspopcorn. I'm ok (I think) but I always gather all the facts...prepare myself for the worst and hope for the best...if that makes any sense.
 
H

Hana

That's kind of how it goes with me too...eventually I get to that point where I just let it go and hope everything works out the best it possibly can. I'm not there now though...

Reading about Remicade and getting really worried. Why can't they make drugs with no side-effects?
 
P

Peaches

Because...well..that would be the same as saying why can't we just get a cure ;) Almost all drugs have side effects. Try not to worry too much - the "side effect" of him taking nothing or something that isn't strong enough is worse IMO - he could get really sick. Just look at it that way.

There is a test to look for antibodies, but it is supposedly pretty expensive. They have done it several times with me. This is how I understand things, I could be off a bit - so someone correct me if I am. Remi is a mouse based antiTNF agent. If you take it continuously, you are suppressing your bodie's immune response. If you stop taking it - it gives your body a chance to figure out "hey - this stuff is FOREIGN" - and boom - it builds up antibodies to it. Similar to what your body does to other infectious type things. So, if you do build up antibodies - at some point you could set yourself up for an infusion reaction as your body will be on alert for it and react.

As for the doc saying "maybe" he should take some Benadryl or Zyrtec - Ummmm.....I think that should be a definite rather than a maybe. I've never been off Remi all the years I've been on it - and I *always* get premedicated - they make me - like the nurse watches and everything. It is just some antihistamine, no biggie. They should also give him a push of solu-medrol (steroid) at the infusion as well. Nurse told me this sort of helps put your immune system to sleep during the infusion (ok - I'm sure they would tell a 5 year old that - but it just helps assure you won't have a reaction).

Good luck with everything Hana - keep us posted ok?
 
H

Hana

Saw his doc yesterday and he scheduled him for an outpatient procedure on Tue to drain that fistula. I guess he could not do it on Thur.

I've been trying to figure out (as if this is something that can be solved..i know) why did he get another fistula? If he is disease free since he just had that surgery could this be a result of him eating sweets? When they put him on soft diet they said that he can eat graham crackers and he's been eating those every day with his tea in the morning (but that's not any different than before the surgery). He used to drink coffee in the morning and eat cookies (european habit) and since the surgery he stopped drinking coffee completely but cookies are still there. I saw post where Mazen had a link to wiki about sweets forming bacteria in your stomach lining and I'm wondering if sweets are to blame? He is not eating huge amounts of sweets but he eats them every day.

Do you guys eat sweets regularly? What does your diet consist of when you're not flaring up?
 
P

Peaches

Some people just fistulize unfortunately Hana - that is the type of Crohn's he has. Some believe that if you remove certain types of carbs from your diet and adhere to a very strict diet (look up SCD, SC Diet or Specific Carbohydrate Diet), then you can put yourself in remission. I tried this in the beginning and it did not work for me - it is a very hard diet to stick to. Honestly - I'm not sure we have had any on here that have done it "successfully" and stayed in remission, I'd love for someone to post if that is true. I wish I could say - yes, cut those things out and he won't get fistulas - but I just don't think it is the case. Many GI's will tell you diet does not help, many Crohnie's will tell you it is all about the diet. Not sure who to listen to :O) I have been absolutely....no....help on this one -sorry!! Hope the draining goes well for him.
 
H

Hana

Don't say that..you've been a huge help.

His GI said that he doesn't know of a diet that works, and he would be open to him trying SCD (I already researched this one) but not now because he wants him to put on some weight first. I dont' think he will do SCD, especially when there is no proof that it really works. I mean I know I read that some ppl swear by it, but it doesn't work for everyone. Honestly I can't blame him either, because food is one of the simplest life's pleasures and if you can't have that..then what do you have?
 
P

Peaches

It is a hard one and has been debated sooo many times. It can actually be a bit of a bugger almost like a political debate for some people. If there was overwhelming *proof* - which there is NOT, I bet every single one of us would be on it because who wants all these drug side effects? I just don't think it is that simple (well, and hard ;o) as that diet. BUT...with that said, I still would steer him away from highly refined sugar stuff (like sugared sodas) - no need to give the "bad" bacteria oodles of stuff to reproduce with!
 
H

Hana

I guess the good news is he gave up soda and cigarettes a while ago. We'll see if we can find something as satisfying (and gut friendly) as those tea cookies.
 
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Hana

I feel so defeated...up until today I was just really optimistic about the treatment...but hearing his doctor say "we were just really surprised by how fast his Crohn's came back"..."these fistulas can be really dangerous, as they can cause permanent damage to his anus"...WTF..hasn't he already been through enough.

I'm so sorry guys..I will update later, I just feel like having a good ole cry in right now.
 
C

Crohn's 35

Inactive Account
So sorry Hana, I have never had a fistula so I cant even emphsize on that. But having pain for many years I can understand. This disease is very hard to grasp as a Crohnie, I can see in my husband's eyes, that he would move mountains if he thought it would help. My heart goes out to you and your husband.
 
kenny

kenny

Hi Hanna. Have you read about red meats and Prostaglandins production in the gut as a response to eating them?

I have fistulizing Crohns and had a resection on Oct1st. I was eating almost anything that did not get out of the way fast enough when I got out. but I quickly learned that beef and other red meats were causing troubles a few days later.(edit: as in after I ate them) I had read about prostaglandin production in the gut previously so I went back and found my copy of "Eating Right For A Bad Gut" The Author does not really give a diet but he explains some of the chemistry involved in digesting food and links certain foods to negative immune responses.

For $15 this book is really worth the read. It is recomnded here in the books section and helps give some understanding of diet, at least as much as any book can anyway without beeing to over the top.

It has been my guideline ever since. I have been med free since the operation, but I just started Immune suppression therapy. I have pronounced secondary complications of this Autoimmune Disorder. Arthritis in my ankles and knees mostly that moves around. So my medication is to deal with that as much as the gut troubles. It is all the same thing unfortunately.
 
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Hana

I'm so sorry for venting here...it's not like you all don't have enough of your own worries/problems. I am updating you today because I am going to try not to read as much about Crohn's for a little while because I'm getting really scared and we can't have that..I need to be strong for him. I guess I just got kind of depressed after his doctor dumped all that on me...he also said that it is disappointing, because he thought he was not going to see him for a long, long time. Doctors usually don't show any feelings, and for him to be so concerned it just really got to me.

Thank you all so much for your love and support..it means a world to me. Even more so as people around us either don't know about his disease (so I can't talk to them), or don't understand how permanent this is. When his mom heard about fistulas (we did not tell her until today) and that he's had D pretty much since the surgery she said "You had a surgery and you still D..how is that?" Which part of 'no cure' did she not get?

Anyways, here goes...his doc went in and found two more fistulas. He put two more seton drains (which makes 3 setons, because he has had one in for a year now). He said when his bottom heals up a bit then he'll send a report over to his GI so they can start him on Remicade.

@Kenny..thank you for your recommendation. I will definitely find this book and read it to see what they have to say. I do believe that diet can make a big difference (and I'm not even talking about SCD..just a little more 'bland' diet like our Jettalady says) but I have a difficult time persuading him. He's usually pretty reasonable guy but don't attack his diet. He believes in moderation, and since his doctors have always just said that he can eat whatever he wants if it doesn't bother him, it's even harder to get him to change his ways.
 
P

Peaches

Hana - I think many of us became members of this forum because we LOVE to help others and GIVE support!! I never really felt like I needed support - but kinda found this place just trying to find an answer to a skin issue. I think you are probably in the perfect place to come and VENT all of your fears and frustrations! We *want* to help you and to listen to whatever you have to say. If it helps one of us "crohnies" that is what we are here for. So, please feel free to come here *any time* and say whatever your heart feels. We will listen!

I'm sorry the darn things came back so quickly!! Sounds like he has aggressive disease. I would definitely encourage him to at least try a more restrictive diet just to see if it would help. I have no idea on track records for any of these diets for people who have the fistulizing version of this disease. I believe Kenny and Beth (maybe Kello?) have the most experience with this on here. Anyway - I hope he can get them resolved enough to get back on Remi and see if this helps him. Will just keep praying about it!
 
shazamataz

shazamataz

Hi Hana, sorry to hear things for your hubby are so bad!

Don't ever apologise for expressing yourself here, that is what this place is for :)
 
kenny

kenny

I totally know what Hana is saying about getting overwhelmed. I had to take a break for the same reason. Many of us here have embraced out predicament and are extremely open open about it. But that takes time to get there. And for some that may be like surrendering to the disease. But I find that instead of surrendering I have learned to fight it better by keeping it right out in the open for now.
 
kello82

kello82

hey hana
i have a bunch of expereince with fistulas, have been thru them myself so i truly feel for your hubby.

ask any questions you want and ill do my best to help you out, or if you just want me to talk about what things ive gone thru with the fistulas then ill be happy to share those experiences ok?

feel free to pm me if you want, ill do my best!

im not very active on this forum recently, am going thru some stuff myself, but hey arent we all? i apologize if i dont reply right away, but i WILL check back periodically i promise!!

take care hana
 
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Hana

Hi kello :)) Thank you so much for your reply. I have actually read parts of your story and it just makes me so sad to hear everything you and others on this forum go through. This is why I didn't go into medical field..I know I would be bringing all this home with me...because I truly love helping people. This is why I have to take small breaks..but I can't stay away for too long it seems like. I start wondering..how is Peaches doing..how about imisspopcorn, farm, Jettalady, kenny..everyone on here....you guys are this other family I have..and sometimes much closer than real family. It's amazing how much pain connects people. I don't think I have ever shared some of the things I've shared on this forum....you guys are all amazing and I love you all!!!!


His fistula (or should I say all 3) are draining pretty well now, and he will be getting his first dose of Remicade next Friday..I just hope that goes well. He was fine on Remicade before the surgery, so let's hope he is this time too. I would love to hear from you, but I don't want to bother you....so if you ever want to write to me, or just vent, you can always PM me. :)

Sorry for rambling...
 
P

Peaches

HEY HANA!!!! I've been wondering how you two are!! You aren't rambling girl - I break the rambling record all the time and these people still put up with me (or at least I think they do ;) ). I'm glad to hear his fistulas are draining. I hope the reintro to Remi goes smoothly for him and can help get those things healed up!! Hey- how long has it been since his last Remicade infusion? *Make sure* they premedicate him each and every time he has his Remicade. He should be getting some steroid of some sort (mine is solumedrol injected through the IV) and an antihistamine (they give me Zyrtec but say Claritin or the like is fine). ((HUGS)) to you both - and thanks for checking back in!!
 
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Hana

HI PEACHES!!! :) How are you, hon?

His last dose was July 31st. He usually just took Zyrtec the day before and was fine afterward. Let's hope it goes well this time too.

U know I was just wondering..I read some other stories on here and people talked about not taking any drugs when in remission, I wonder if his Crohn's got more aggressive bc he was off meds for 4-5 yrs when he fist moved here. I know there is no rhyme or reason but you know me..analytical mind, still trying to solve this one..find a logical explanation or make sense of it somehow.
 
imisspopcorn

imisspopcorn

Punctuation Impaired
Hi Hana...I hope everything goes well at his appointment....I have come to the conclusion that there is no Earthly reasoning behind this disease....I'm hoping to get the answers after I die....By that time I probably won't care....
I'm praying for those fistulas to heal up nicely. Thanks for keeping us posted.
 
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