Need Advice Please

[sick'o'crohns]

Hello all, this is the first thread I have posted. I am a new member and hope that a site like this will help. My name is Erryn and I was diagnosed with crohn's feb. 2009. Knowing now that all the problems I had in the 4 yrs. previous were due to the disease and I just never got a dr. that put together all the signs and symptoms. I started on pentasa right after i was diagnosed, as well as bentyl, and belladonna for pain, cholesteramine for diarrhea. This did nothing for me and I could not choke down the cholesteramine if my life depended on it! I was then put on prednisone 40mg for a week and tapered off. This did nothing but make me feel like I was going crazy... my bowel movments were to the point that I messed myself at work. (I work at a bank) SO EMBARASSING! This put me into high gear, I told my dr. that something needed to be done asap. Mind you this was feb. 2009 still. After rounds and rounds of pred. entocort and no relief I found myself off of work on short term disability over a year later in July 2010. In this time i have lost a little more than 50 lbs. Since I have gotten a new gastro who started me on Imuran, and then remicade. I have had three infusions thus far and on the imuran for three months and just had the dosage upped to 100mg per day. Within the past week and a half she put me back on pred. 20mg for two weeks then taper. I am starting week 2 on 20mg today. The past two weeks have been the disease at its worst for me. :frown: I cannot eat, sleep, take care of my three little boys, work, or be a wife. My couch is my mainstay and my bathroom is my jail cell. Vomiting, and what I call constipated diarrhea with the WORST belly pain I have ever had in my life! (remember, I have had three kids, this pain is sooooo much worse) I take percocet for the pain but it can't touch this. I also had major back pain in the last month and it was discovered that I have three buldging discs with inflamation in all the nerves and surrounding area, that they think is spondyitis??? I think that is it, not sure... I have a neverending UTI that my gastro seems worried about but wont really divuldge all the info it seems to me. I have taken dulcolax yesterday and today without having a bowel movement and am getting worried. this is what I was directed to do by my gastro. It feels like someone is ripping my insides out, and I just don't know what to do... This has taken over my life, I have now lost my job, and my health insurance will be next. As I type this my oldest son is playing basketball on a league and I am not there to see him play his first game ever. :frown: I'm sure this is the case with most of the crohnies out there, but I feel so alone and helpless. If anyone has any advice for me, or has had the same type of symptoms I would love any info you can give me. And even hear your story, so maybe I dont feel so alone in all this. Thanks in advance, and I pray everyone on this site gets what they need and has a super support system. God bless you all.:hug:

 

[Margie12]

Hi,

I'm a newbie too at the site and I feel so much relief after posting my story.

I've been through a lot, because of Crohn.

I'm going through a major flare and I have a stricture that is giving me a lot of pain.

I can relate to what you're feeling, because today I had to lay down in bed because of no energy at all to do anything.
I'm going multiple times to the bathroom and it's so emberassing the loud groans that you can hear when you're next to me, because of the pressure
in my bowels.

Sometimes I can't have a bowel movement and it's the Asacol suppository that helps calm down the inflammation in the lower side of the bowels so I can have a bowel movement. It's so painful, but at least I could have a bowel movement.

You could ask your doctor if Asacol suppositories can help you with the bowel movements.

I will be thinking of you.

I hope that you will have some relief soon, because I know the pain when you've a flare is so terrible!

Big hugs

 

[rdg1]

Hi

I'm a new member, and I'm sorry that I never signed up when I was diagnosed 4 years ago.
I am taking 4g. of pentasa every day. And thank G-d, I havent had to go on to stronger medicines, eventhough the doctor wanted me to begin 6 mp. I did something probably that I shouldnt have- and that was tell the doctor that I didnt want to take it.
I heard that there are a lot of not great side effects. Anyhow, I have been on pentasa for the past 4 years. About 6 months ago, I had a problem with bleeding and went right away to the doctor, and I decided then to go to a nutritionist. I am so happy that I did this. Not only has she helped me by putting me on a very good nutrition program that she believes is suitable for Crohns, I also lost nearly 40 pounds.
In addition, I am taking a very strong probiotic called VSL#3. I believe it is specifically for colitis and crohns sufferers. All I know is that I am feeling better. I take a lot of vitamins, and I have to take iron all the time, because my level completely dropped, but I am so happy that I started this program, because before hand, I was suffering the symptoms like you had, and I was depressed. I had to make sure that I was near a bathroom when I went out. And I was always afraid that I would need a toilet, because crohns is so unexpected, that it can happen at any moment, when you need the toilet, and just cant wait. So, I completely relate to you, and if you would like me to tell you the foods that I am eating now, and what I am staying away from, I'll be happy to let you know, and maybe that can help you.

All the best

 

[sick'o'crohns]

Hi

I'm a new member, and I'm sorry that I never signed up when I was diagnosed 4 years ago.
I am taking 4g. of pentasa every day. And thank G-d, I havent had to go on to stronger medicines, eventhough the doctor wanted me to begin 6 mp. I did something probably that I shouldnt have- and that was tell the doctor that I didnt want to take it.
I heard that there are a lot of not great side effects. Anyhow, I have been on pentasa for the past 4 years. About 6 months ago, I had a problem with bleeding and went right away to the doctor, and I decided then to go to a nutritionist. I am so happy that I did this. Not only has she helped me by putting me on a very good nutrition program that she believes is suitable for Crohns, I also lost nearly 40 pounds.
In addition, I am taking a very strong probiotic called VSL#3. I believe it is specifically for colitis and crohns sufferers. All I know is that I am feeling better. I take a lot of vitamins, and I have to take iron all the time, because my level completely dropped, but I am so happy that I started this program, because before hand, I was suffering the symptoms like you had, and I was depressed. I had to make sure that I was near a bathroom when I went out. And I was always afraid that I would need a toilet, because crohns is so unexpected, that it can happen at any moment, when you need the toilet, and just cant wait. So, I completely relate to you, and if you would like me to tell you the foods that I am eating now, and what I am staying away from, I'll be happy to let you know, and maybe that can help you.

All the best

Any info would be great. I have also seen nutrionists, at this point though they are all telling me to eat whatever I can handle. But if you have some suggestions that would b great. I'm sure I have not thought of everything! Thank you for your reply, and I look forward to hearing from you again.

 

[rdg1]

The nutritionist gave me something very rigid to do.
She took me off dairy. I used to eat anything and everything, including coffee, hard cheeses, cakes, and really anything I wanted. As sick as I was with the Crohns, I wasnt losing weight, because of all the junk that I was eating, and eating whenever I wanted during the day.
Ok. So, here's what she gave me to do. She took me off of dairy. I stopped drinking coffee. Stopped sugar. She limited me with the vegetables that I could eat.
I had 2 pieces of bread in the morning with a peeled tomatoe, and tehina. This is a sesame spread in case you have no clue. I make my own.
I eat my main meal at lunch. This is when I will have my meat meal. I'll have chicken with a vegetable salad of cucumber, peeled tomatoe, shredded carrot, and a little bit onion, and a little salt. I dont put oil on this. I am allowed to have 3 tablespoons of rice, potatoe, or pasta. If you arent on a diet, you can eat more carbohydrate, but I still need to lose weight, so I limit it to what she said.
In the afternoon, I'll have an apple with a few dates, and maybe a cup of chamomile tea or green tea. For supper, I'll have 2 peices of bread, with a little bit of homous, avocado, or tehina, or a canola spread, with cucumber and peeled tomatoe, and sometimes i'll have a soft boiled egg.
This is the diet that helped me lose nearly 40 pounds in 3 and a half months, and really helped me with the crohns. I also take that probiotic.
I also stay away from spicy food.
Please tell me what you have been eating. I know the diet I described isnt easy, and if you need to put on weight, you would probably eat as much as you wanted.
But, I am so greatful to this nutritionist for helping me. I just want to mention that I'm under the nutrionists care, and I dont want anyone to think I'm giving any medical advice, only what was given to me. And I'm very happy to share this with anyone.
I was very very sick with Crohns before, and I dont always feel great now. But, this has helped me much. I hope that this has helped, and if you want to know what is homous or tehina, let me know.
This is the first time that I have ever joined a crohns forum, and I'm so happy that I did.
I never met anyone until now that had crohns, and I've had to deal with all of these problems on my own. I'm very happy to be here now, and have the chance to meet all of you.

 

[mizgarnet]

SickOCrohns- Please ask your doctor about blockages and strictures. Also, ask about the possiblility of a fistula. I am very tempted to tell you to go to the ER. Please push for answers and relief.
Hugs!

 

[lynx]

Hi and welcome to the forum and I am sorry you are going through all this. It really is hard and frustrating I know. I lost my job, apt, everything, when I was originally diagnosed with Ulcerative Colitis in 2006.
This time around I am a partner in a company but because I have been out of commission for so long (since about June this year..I was in the hospital for most of September) I am in danger of losing my income altogether at the moment. I am still in the middle of a flare. Also I was diagnosed with Crohn's in the hospital this time.
As everyone is different, and everyone responds to drugs, diet, exercise differently you could try some of these things to see if they help:

Try a liquid diet to help rest the bowel. Talk to a nutritionist before you begin and do some reading and research on it yourself.

Try a LOW RES diet (mainly this is to keep blockage from occurring from what i understand in case you have a stricture?)

Maybe you need more prednisone? I was on 60mg IV in the hospital then tapering when I got out. I am now on 30mg. I noticed it takes a longer time with me for the steroids to work. This would obviously have to be discussed with your doctor before you did anything like that.

Maybe consult another GI? This may seem like a royal pain but it is possible that someone else may have some insight your current dr. doesn't. And if you still have insurance this is a lot easier than when you don't.
Thats the other thing you will have to deal with...I was denied health insurance because of a pre existing condition. How wonderful is the greed (they call it capitalism haha!) in this country LOL!

I am on percocets too and they do mask the pain but they do not get rid of it entirely unfortunately. I hope you can find relief.

There are some good books out there that may help too...you might want to check out that section of the forum to get some ideas...I did and I bought some books based on the suggestions of others posted here in this forum..it has helped me cope better and given me insight a little more. I hope this has helped.

Here is a link to The section listing books...you have to browse a bit but they are in there HERE

 

[sick'o'crohns]

I have done the liquid diet for bowel rest. I have been on higher doses of prednisone and tried entocort. I was on the steroids at 60mg for 6wks. and then tapered. That was my longest stint, but I have been on them other times as well. I HATE PREDNISONE! But I do take it how I am supposed to... As for getting a new GI, this one is new. She seems to have good ideas, but I dont think she gets it right now. I think something is really wrong. The pain is worse than it has ever been. I have taken even more lax. and still wont go. I will not go to the ER at the hospital in my home town, they will just dope me up on morphine and send me home hours later. I cant leave my children and will feel so guilty if I disrupt others in my family and find out that there is nothing wrong (or more wrong) with me. As far as the pre-existing condition goes, I dont believe they can do that anymore since Obama passed a new law making that illegal. (dont quote me, but I think that is what happened) It's like a catch 22, If I don't get help and there is something, like a blockage of sorts, wrong then I could be putting myself in real danger. But then again, it may not be anything... My gastro called me yesterday to say they want to do another pill cam, but that may not happen until next week. What could happen to me between now and then if there is some sort of blockage, or stricture, or whatever else it could be?

 

[archie]

hi, sounds like a blockage of some sort if you don't go soon you need to get it checked or it could end up very serious. Do you have a fever? dizzyness? vomitting? I think if the answer to any of these is yes then you have to go to the ER, I refused to go when I was bad in june and it turned out I had a perforation so ended up with no choice in the end, so from someone who knows at least get them to check your bloods / obs for signs of infection. Hope you get some answers soon

 

[lynx]

I HATE PREDNISONE TOO! But it seems to help...i think. The worst thing that could happen, I may be wrong, is a bowel perforation. Then you get sepsis in your thorax and you can die. SO it is not something you want to mess around with or be lax about regardless of your situation. If the pain gets really bad and you start a fever I wouldn't chance it and go to the ER. As for the pre existing condition...lets see what the Republicans do to the whole law....they want to destroy it so...we will see.

 

[sick'o'crohns]

I have talked to my gastro and they are putting off the pill cam in favor of more blood studies... also told me to take magnesium sitrate. They said if there is a blockage, which they think could b the case, this will hurt like hell because it will break up some of the food (or poop) and push it through. Everytime I go to the ER I just get sent home eventhough nothing is taken care of. I just don't understand what they are doing. The ER that I go to is not affiliated with my gastro as I live in a small town and have to travel over 70mi to see my gastro. I do understand the severity of this, which is why I am seeking advice I just don't see the point in going to the ER if there is no satisfaction. I am afraid of what may happen if this is not taken care of very soon. I am just at a loss. What it makes me want to do is just go to my gastro's hospital ER, drink the magnesium on the way there, and run in screaming and crying (I'm sure after the magnesium I won't have to fake it!) and see if they will do something immediatley. And as for the vomiting, yes, nausea, and vomiting. I take zofran but it is not really doing anything for me now. I hardly eat, one: because I am terrified of the pain it causes, and two: If there is a blockage wouldn't eating just make it worse? It's so frustrating, and not just for me. My husband, my children, my mom and dad, and numerous friends. they dont understand the disease, eventhough they are very sympathetic and I just don't want to put them out by going to the ER and being sent home again with no answers. But then again, I DON'T WANT TO DIE! grrrrrrr. why wont the drs help me?

 

[Nyx]

Go to the ER...I perforated my sigmoid colon and distended my bowel because of inaction on my doctors part. It was the most horrible, intense pain I've ever felt in my life! I don't wish that on anyone. I now have a permanent stoma because of that (not that that's a bad thing, it's actually given me my life back 200fold). Make a fuss at the ER...don't let them send you home without answers...

Don't mess around...it's not worth it...

 

[lynx]

Yeah i know my gf is from a small town too and the hospital there is horrible...it sucks. I am lucky that i live in a city with some world class hospitals that know what to do when they see people come in with GI issues...when i was in the hospital in SEPT one of my nurses said that a third...YEAH 1/3 of the people they had admitted were there because of GI issues...i was like WOW! and she said that i was the worst of the ones on that floor...lol ..that made me feel great WHOOT! i think i would do what NYX says..really if it is bad you dont want to mess around..and if you can get to the ER your GI is affiliated with...I hope you get relief! It is horrible I know..and I know you know its serious...i kinda put that in there in case others read ...i was an idiot and waited forever to go to the ER ...i paid dearly for that...i just hope others take this seriously and get the medical attention quickly that they need!

 

[mrjoe]

obviously I'm not a dr. but it soungs like you have some sort of blockage (or intestinal swelling) and you need to get to the ER ASAP.. Since the local hospital is not able to handle Crohns, you REALLY need to get to a hospital that does.. One thing I learned with my son is this isn't something to mess with..

/joe

 

[sick'o'crohns]

First, i would like to thank all of you for your concern and replies... Unfortunatley, I did not get any satisfaction today. I went to the Hospital my gastro is affiliated with had blood work, urinalysis, and an abdominal scan to check for blockage or whatever... It is a partial blockage caused by the swelling, inflamation, and scar tissue. BUT, (and this is a BIG BUT!) and I quote... "There is nothing we can do for this as of now, just keep taking the laxatives so you can eliminate while we wait 5 to 6 days for the blood work results to come in and that will tell us if this is a reaction to the remicade or the crohn's disease causing this. Call us if you need anything!" SERIOUSLY???!!! I can't eat because I can't poop. If I do, I feel like my but hole is going to implode and go up my digestive tract and come out my mouth. (appitizing huh? It doesnt bother me, I cant eat! ha!) I'm so ready to just give up, but where would that leave me? uuuggghhh! This is so depressing, its too much trying to get another dr, I just switched to this one. Pretty much what I am getting out of my dr's reaction is that I have a disease that is going to cause me pain for the rest of my life, get over it, or keep going to the er and having test ran and paying out the ass for it just to be told that there is nothing they can do. and on top of it paying for the dr appointments, medicine, and the REMICADE, OH THE REMICADE!!! Lets not forget the $4000 treatment that "may" help you. Screw you Crohn's, I HATE YOU!!!

 

[sick'o'crohns]

Horrible night, nausea, and tons of pain This is my life now... ho hum

 

[mizgarnet]

Good morning Sic O Crohns,
I was going thru the same thing you are in 2008. I reached the point that I could not walk without assistance. My nutritional levels were very low. My OBGyn sent me to a vascular surgeon. His theory was to let someone else look since I was not getting relief. The vascular surgeon was a gift from God. He took one look at me and said- NO MORE. He could not admit me but he did a full panel blood test, sent the results to my GP, called the hospitalists, fussed with my GP, and I was admitted to the hospital. My GI was replaced. It is now the end of 2010 and I am finally recovering. I have been in remission since Feb of 2009. I have reached the age where my body does not recover quickly. This is a hideous disease. Doctors don't even seem to understand. You really need to get nutrition, really need.... Sometimes I still get a "blocked" feeling and when I do, I drink pineapple/coconut juice, vegtable juice, broths (beef made with grass fed stew beef with the bones is wonderful), and teas. Sometimes I add Hemp protein to my juices. I dilute my juices with water. Oh, pear juice is good. Take care of you.
Hugs!