HealingWell
Search Close Search
☰

I am so scared

Support Forums
>
Crohn's Disease
✚ New Topic locked
12 3
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/30/2011 1:14 PM (GMT 0)
Hi

As you all know I am still waiting to get my results from my capsule endoscopy.

My Gi doctor will finally be back from Holidays on Monday and I'm going to call and see when he can see me and hopefully my results will be in.

 My family doctor is finally back from sick leave and I have an appt with him on May 5 at 315. I know he won't beable to do much but at least I can talk with him. I know he will try to prescribe me prednisone but my GI has asked that I stop taking it unless it comes from him.  

Things these past week have been horrible. On April 14 I increased my Salofalk as the Gi suggested to 8 per day and felt awesome for a few days until Last Monday. Monday i started feeling horrible and it just escalated. I've felt worse than I have since this all began.

Right now so many things are running through my mind its not even funny. I am so scared that he finds crohn's all over and that i will never beable to achieve remission. I know I have been doing too much reading about those who have had ileostomy bags from crohns or even those who need to be fed my infusions. I know these are hte wose cases but right now that is all I see. I am terrified that I will never have a life again. I am fustrated that this is happening to me or any of us. I am such a good person. I worked so hard to get to where I am and everything is crashing around me. I really don't know if I can do this. I go to bed at night holding my stomach and my husband says while I am sleeping I clutch my abdomen an whimper while I sleep. I am only 31 soon to be 32 and I feel as I wont get to see or enjoy the rest of my life.  It has been over a year now with no breaks except for a time I was on prednisone for only 5 days.

Everyone I talk to says I will get better but right now after 1 year of going through this I feel that I will never. Chrohn's is a disease that continues to progres so if I am this bad now I don't want to think about how bad I will be a 10 years. I've lost all hope, I don't know If I can be as  strong as all of you. I'm forever crying and wishing that this was only a nightmare. i know I have to come to terms that I will never get rid of this and i need to learn to cope. But i don't know if I can. I've lost over 40 pounds in a year, I was a size 34 now Im a size 27. My bra size has gone down 2 full cup sizes. I don't even want to go out anymore.

I even wrote my doctor a letter that I want to fax to him, but I'm scared that I will push him away. I live in canada and my doctor is 2 hours away from me and there are not many others around and the wait to see them are sometimes 6 months to a year. My husband says I shouldnt send it and just wait to see him he is afraid that I am being too needy and will push this dcotor away. Supposedly this doctor is one of th best in our province but geeze how come I dont feel any better. I know that I have only been with him since December and I have been through a barage of tests and the final one was last month the capsule and we are just waiting for the tests results.

And I know its not the foods I eat, lately all i have been having is chicken, rice, patatoes and cooked carrots. My doctor said until I feel better it will be hard to tell which foods are no no's for me and he is right everything I eat makes me feel the same way.

I'm sorry this is so long, but I can't do this anymore, I need help.....................................

 

Posted 4/30/2011 1:47 PM (GMT 0)
I feel the need to write even though there are no magic words. I'm 36, in my 5th month of my first flare (just diagnosed) and I completely get you. My oldest tells me the same thing. She stays up late and can hear me moaning from my room while asleep...I joke it off to make her feel better but it's still rough. 6 months ago I was at the gym 3x/week and on my bike the other 4. I was strong, very strong. Then I lost 40lbs in just over 2 months through all this (muscle went really really fast) and I've never in my life been this weak or felt this helpless.

The only thing I can tell you is I wake up every day and use the pain as a drive. I know there are tons of options and I will achieve some control. I've gotten progressively worse so far but it's only temporary. Having said that, no matter how strong we appear to others it's a tough boat to row and we're all weak at times.

You keep going with the docs, but I believe your mind has to be as right as possible to keep sane. If you feel like you're sinking, maybe finding a counselor would help. I know we all try to keep what we can to ourselves, no one wants to be a sad sack. We all need an outlet somewhere and a trained counselor might me able to give you some insight.

Lastly, scared is exactly what you should be feeling. I keep getting comments about how well I'm taking all of this but next week I'll probably find out if I need a resection or not and I'm scared as hell about that. Not so much the surgery itself but the ripples it will cause with work/family.

Ok, I realize I may just have added my own vent to your thread here but if you have counseling available to you I'd strongly suggest it.
Posted 4/30/2011 2:51 PM (GMT 0)
Good to know I'm not alone,

I do have counseling, I start on May 24 and plan on visiting my family doctor on May 5 or hopefully sooner I will call on Monday to try. I doubt the councelling will help. What I need right now is to feel better so I can take control of my life. And all those medical options we have available there is still no cure. And no matter how much surgery we get it will always come back..........
Posted 4/30/2011 3:27 PM (GMT 0)
First off I am glad to hear you have a counseling appt scheduled, as I really think you need it. You are in your initial stages of this disease, which is always the hardest time. But once you find the right treatment you will begin to feel better. Right now you are in the anxious what if stage.

I have had the disease for over 35 years, I do not believe it gets worse. I don't have a perfect life as you probably read in my recent vent, but I do have a life. And you will too. Yeah there is no cure, but its really not as bad as your mind is making it. You feel so bad right now and just don't have hope. More than likely you are not on the right med for you yet, but I think once you find the right med for you, your future will look much brighter and you will be able to do some of these you have recently had to let go of. Hugs!
Posted 4/30/2011 7:40 PM (GMT 0)
Thanks nanners.

But as much I am trying not to worry or stress about the what if its not very possible. There are so many of you who have had bad experiences that I am terribly scared. I know that there is a possibility it will never happen to me, but right now I see that as a very slim chance.
Over the past year the only time I have felt good is when my family dcogtor has prescrived me short bursts of prednisone. I know that I am effected more than just one spot from where I get the pains. I only wish I am wrong. I feel worse in the morning and at night after I eat. Eating now that is another story i don't want to eat anymore.


Now I'm writing blind, i don;t know what else to write im fed up.
Posted 4/30/2011 10:55 PM (GMT 0)
Fear not.. I'm at week 4 waiting for the pill cam results. Pain in two areas lower right and midupper left. I eat one meal a day after work so I can make it thru the day without a problem. And that one meal hurts no matter what I eat. Havnt had a solid bowl movement since Christmas. I dont get to see Dr GI Guy until next monday the 9th at 1:30. His NP I saw weeks ago said until the cam results came in they didnt want to give me any meds. You can make yourself nuts with worry. I understand that. But the fact is.. as miserable as you feel there is nothing you can do to change the fact that you have a disease. You cant wish it or pray it away... you just have to live with it and keep on going. The more you worry the more it hurts. All of the stress of thinking about all the bad things that can happen just make it hurt more. I used to be a nervous eater.. eat when I got upset.. boy I dont dare do that now!
I resolved myself to the fact that I can do what I can do and no more from the very begining. I told my surgeon who discovered this ,that I was ok with it and knew if anything really bad happened then I would just come back to him and he would fix it!
I know it hurts! I know what you are worried about. I feel the same way. But you can control only what you can control and this disease you cant control.
Best Wishes.. Honest I understand
Heather
Posted 4/30/2011 11:13 PM (GMT 0)
I was 18yo when I was first dx and scared as hell by it all. Mind you 21 years ago I didn't know exactly what it was all about as no internet and only some basic info from GI as what Crohn's was. I had spent the previous year being treated for either IBS or because I was so thin having the doctors thinking I was anorexic. When I eventually got the dx I was relieved, I had a name for it, knew it wasn't something I was doing wrong. Once you have the dx and they begin treatment you will hopefully feel a lot better.

You can only take one day at a time and try not to think about the what ifs, that will drive you mad with worry. This illness is here to stay and unfortunately there is no magic cure, I wish there was. Hold on for your appointment and test results and then your GI will know what to prescribe to help you get into remission. I had it through all my colon and ileum and they got the ileum into remission really quickly. Many hundreds of thousands of people once dx have years of no problems, it's just that because they don't have problems they don't tend to be on forums like this so you tend to only see posts for those having issues.

Good luck with your test results.
Posted 5/1/2011 12:03 AM (GMT 0)
Daunting,

There are a lot of wonderful treatment options that can put this disease into remission. I had several good years on Remicade. You have to have hope that you will get through this and that you will have a good and happy life.

Wishing you all the best!
Cecilia
Posted 5/1/2011 1:00 AM (GMT 0)
Heather and Stripey, thanks for your posts.

Heather I am sorry that you are going through the same thing, I would not wish this on my worse enemy. I too have pain on my lower right quadrant and straight accross from it, and also left of my belly button and over and sometimes other spaces but less common. My intestines always gurgle after meals and I continously have diarrhea. The only medication I have been on continuously is salofalk and the occasional prednisone when I go see my family doctor for help. Which I am tempted to do again, although the Gi asked me not to take prednisone again until i see him.
Have you had a colonoscopy yet, Mine came back negative for IBD in the large intestine and with small ulcers located on the Terminal ileum which could be the start of crohn's. As for my capsule endoscopy I am still waiting my results and until then he doesnt want to treat me with anything else other than salofalk.

Stripey thank you for your post, However do not know how you can talk about remission and the not worrying about the if's when you have gone through so much as your signature states. And honestly I don't know if I can go through all of that. I don't feel I am strong enough.
Posted 5/1/2011 2:05 AM (GMT 0)
For me..It all started with a perirectal abscess followed by 2 rectal fistulas. 3 surgeries in 4 months and I only missed a total of 13 days for everything. After the 3rd surgery for the 2nd fistula the persistant diarrhea and pain started.. Lost 40 lbs in 6 months. So Colonoscopy that showed only a little diverticulum. 1 week later a abdominal and pelvic CT Scan. 1 week after that the pill cam. I missed 2 days for the colonoscopy just because you cant work and do the prep or work the day of it.( Still waiting on the pill cam results)
Its miserable.. the only time that I feel good is if I just dont eat anything but water. It hurts from a little bit all the time to dreadful some of the time. But I have read enough to understand that its just the way it is. You cant do anything about it except to live with it and go on. I work 50 plus hours a week and have a big house and yard to keep up with. I wont give in to any disease and let it ruin or run my life!
You just cant let it get the better of you! This is the begining of the disease for both of us. So many here have delt with much more for so many years. They obviously have just kept on going and dealing with each issue as it has come up. You cant worry about future surgeries or what might happen its bad luck in my book. I know I have a great surgeon who deals with crohns related problems all the time. So if it ever gets to a bad point I'm back at Dr Hunky Dunky's office in a flash. Other that resolving that in my mind I know that I can deal with the day to day pain that I have now.
Yep I dont want this.. I dont like hurting, not being able to eat, pooping all the time.. aching and hurting all over. I do not want any more surgeries ever. But I will not let this change my life! Too much to do! Too Much to see! Too many new friends to make along the way.
So keep your chin up... and Yes you are strong enough to deal with anything!
Posted 5/1/2011 2:54 AM (GMT 0)
Like Nanners, I have lived with this disease for many years. I am also the daughter of a Crohnie. My mom was diagnosed when I was 1, so basically I have never known a day without Crohn's disease. I am going through a really rough patch right now, but I know it is a ROUGH PATCH. In the grand scheme of my life, it is a few months. When I look back on this time in a few years, it won't amount to anything. I have had times that were longer, like you, but still, I have gotten better and spent quality time with my daughters and husband. When I think about my life, the only thing that Crohn's has stopped me from doing was being a teacher. I can't quite see running from a classroom full of 2nd graders to make it to the bathroom in time, though I know other Crohnies are teachers.

Also, the advances in medication over the years gives me great hope. When my mother was diagnosed there was prednisone and sulfa. The doctors didn't know anything about the disease and therefore neither did my mother. There was no web, no support, no information. Overall, I see so much improvement.

The time before diagnosis and then the beginning of treatment are the absolute hardest. You are trying to find out what is wrong and then trying to undue years of damage. Trust that you will get your life back. Plenty of us have. You are only reading about the worst of the worst on the web. The majority of patients are living their lives, not thinking about Crohn's.
Posted 5/1/2011 12:42 PM (GMT 0)
Thank you for all your posts.

Heather I hope you get some answers soon as I would like to see for myself. So far I have gone through almost every test and all have come back inconclusive. Now this capsule endoscopy is my final test except for a MRI which I don't think would help.
Yes I feel as I have lost my life. I currently have a wonderful job however I am tied to a phone and I am scared if I get hit with I need to go what do I do so far I have been lucky. I just don't know if I can do it. I love my job and it would pain me to have to ask if there was a posibity if a transfer to another department I am good at what I do. If I will continue to have diarrhea the rest of my life than yes I will have to but if there us any hope that I might get that part a little under control maybe then I could see some light. things right now are very grim during this week thus is the worse I've felt since this all began and I'm terrified. If they are not treating me right how much damage is actually occurring.
I know what you are all saying that it will get better after treatment is set up but what if it doesn't I have been hoping for relief over a year now and nothing I am tired of lying to myself I am tired of bring naive.
I've basically given up on hope and decided to go with the flow but by doing that I have dismissed all hope and faith and belief that my life has ended and I only exist now and not live. All my future plans I once had I know I won't beable to achieve them now and it hurts so much I once had a great life and I know I took advantage of thinking there will always be a tomorrow.
Posted 5/1/2011 2:13 PM (GMT 0)
I manage a jewlery shop and have done so for 18 years. I can not leave a customer especially a diamond customer. So I just dont eat at all when I am working. The girls at the shop have been warned that if I tell them to take a customer over that they are to do so asap. This has only happened once since Christmas... and of course I ate lunch at work that day.
We are big travelers.. So now I guess Cruises are more attractive than ever becasue theres a potty everywhere you go!
You just cant give up on life because you have Crohns! You just have to change your attitude twards what you do and when you do it. You still have a great life .. its just depression of the reality that is making you think diffrently.
Belive me... I had never been sick befor last July. I had never even had an IV until I was taken to the ER for the abscess and they thought I had peritinitis. Never on any medication at all! At 52 thats saying something! No surgeries No Meds No illness at all. And Wammy my life changed! 3 surgeries in 4 months and not felt like myself in 9 months now. But I wont give in and change my attitude or life! You can do anything you want to do! But you have to Want to Do it!
Keep the faith and Keep a good attitude thats half the battle kiddo!
Posted 5/1/2011 2:37 PM (GMT 0)
Daunting one thing that is not in my signature, I had a nearly 20 year remission at one time. Had the two first flares, the first one being when first diagnosed, the second four years later after my 2nd child was born. Then I went on to have a nearly 20 year remission, med free (big mistake), and could eat anything I wanted. Once my remission ended it was really rough for me. Why???? Because I was living in total denial that I had a chronic and incurable bowel disease. Because of that I will never be medicine free again, because my remission ended with emergency surgery due to a complete blockage. I could have avoided ALL of this, if I had just been compliant with my docs and stayed on my meds. In those days we didn't have the internet info we have now and I didn't understand the importance of treating the disease at ALL times, good or bad, or the importance of watching my diet.

I will tell you when first diagnosed I was very ill. Lost 25 lbs in 3 weeks, and when finally diagnosed was immediately put in the hospital. I was going to the bathroom up to 20 times a day and couldn't even drink a sip of water before having to run to the bathroom to pass nothing but bloody mucous. I too thought I had no hope and was just going to waste away. But once I got on treatment, which was Azulfadine and prednisone as well a low residue diet, and in no time I was better. This first flare lasted approximately 3 mos, although I felt better in just a couple of weeks. But I continued treatement for 3 mos.

That was the sickest time I have had with my Crohns, I have never been that sick since, ever. Yes I have had surgeries etc since, but even in those surgeries I have never felt as bad as I did when first diagnosed. Everyone feels that bad at first, and most of the time its because of not knowing what is causing your illness. Once you get your diagnosis, it gives you answers to whats going on, and you can move forward with the proper treatment.

And again my biggest tip, is to stay on your meds. You might still flare while on them, but the flares won't be as bad because of the meds.

Hang in there, better days will be ahead. Hugs!
Posted 5/1/2011 3:40 PM (GMT 0)
Daunting, despite what it says in my signature it hasn't been all bad, honest. I have had periods of sustained remission, one for 6 years and only had the flare up in 1994 because a doctor prescribed me anti inflammatories which sent my digestive system nuts and caused CD to flare. My recent flare has actually been hardest to get under control as I had stopped my azathioprine the year before on suggestion if my GI and it takes a while for this to kick back into the system, hence the pred and humira which start to work quicker. I am now off the pred and will only be on humira a year and then will just be on azathioprine from then on.

It takes time to find the drug regime that works for each person as one size doesn't fit all. It seems bleak at the moment but once dx is made then your GI has something to work with, he is being cautious as some of the drugs CDers take, you wouldn't want to prescribe them to someone who hasn't got CD.

Hopefully you can speak to your GI next week and get some answers which will help you. Until then take it one day at a time and not worry about the future for the time being, the here and now is what is important.
Posted 5/2/2011 11:28 AM (GMT 0)
I am going to call the gi today although I know he won't want to see until the results are in and could still take a few days to weeks. I am so tempted to ask my family doctor to send me back to our local gi but I led him in he first plac because I could not talk to him but he would make an appt the same day or day after some days I wonder what is better. I also have an appt with my family doctor on Thursday I know he can't do anything but tAlking will help. When I see him he always prescribes prednisone just a short burst but my gi said he doesn't want me taking it unless he says so. So at this point not sure what to do, if I take it my gi might drop me as a patient.
I'm still so scared of what my life will be, I know there will be surgeries and probably worse yet to come
Posted 5/2/2011 11:53 AM (GMT 0)
I don't know why you are saying you definately know there will be surgeries and worse to come. There is no guarantee that you will need surgery. There are plenty of people on here who have never had surgery and get the CD into remission on the medication. Whilst I agree is it good to know all possible information I think you are seeing only the worst and taking that as what is going to happen for you. I know loads of CD people who have never even been admitted into hospital and able to live their lives perfectly normally, me - I'm the exception and yes I have had multiple surgeries BUT this isn't normal and only done when medication fails.

You are getting yourself wound up about things that may never happen and you haven't got your dx yet, it might not be CD. I know it is hard but please stop thinking the worst and concentrate on keeping yourself as well as you can until you get your results, then you will know what will happen after speaking to your GI. Please take some time to relax and take one day at a time or you will make yourself ill with worry.
Posted 5/2/2011 12:10 PM (GMT 0)
Daunting when I first signed in here I had a nice fella from Vermont who has had Crohns since he was 6 tell me to start keeping a food diary. Great advise! Since so much of the pain is caused by what, when and how much that we eat. If you are not already doing so I would recomend that you start focusing in on that. I still have major symptoms but have eliminated a bunch of stuff that I now know make me feel dreadful and hurt. Maybe if you would focus in on some diet changes you might get some relief... I have. The one thing that we can control is what we eat. Other than that there isnt much control. Think about what you can change and stop fretting about what you have no control over.
I understand that the GI wont start meds until they get all of the test results in... they did the same thing to me. Dont take anything other than a pain pill if it really really hurts. So I guess thats a normal practice to wait and see what the pain is coming from befor they start to treat it.
Good Luck this week... I have 7 more days until I get to the GI I cant wait either
Heather
Posted 5/2/2011 12:11 PM (GMT 0)
I'm surprised that the results are likely to take a while. The last time I had a capsule endoscopy I had a follow up appointment 4 days later to discuss the results! It certainly wouldn't hurt to try and get an estimate on when the results will come through. Although I know it's hard, you need to stay positive - take time to do things you find relaxing and try not to fret until you get the results.

I can assure you that not everyone with Crohn's will need surgeries, and often the worst part of the illness is the pre-diagnosis period. Once you have a diagnosis then you can look to medication, and you will regain quality of life - indeed lots of people achieve long term remission. Dealing with chronic illness can be difficult, but you definately shouldn't view it as the end of things! Since my diagnosis I've admittedly had bad periods of flares, but I can also tell you there's been so many wonderful days too with friends and family - life continues to provide us with opportunities for happiness and contentment.

I hope a little bit down the line we'll all be hearing how much better you feel!
Posted 5/2/2011 2:25 PM (GMT 0)
Thanks Everyone.

I called My Gi this morning and spoke with the Secretary. He is at the hospital all day today and is only seeing patients tomorrow and is completely booked up. She said my results are not back in yet but will speak to him tomorrow morning about how I feel. She asked me if I seen my family doctor yet and I said not yet but I am scheduled to see him on Thursday, and that I know he will prescribe a small burst of prednisone and do not want to take it because of what the GI said. She said she will tell the Dr that and call me back tomorrow to see. I guess My GI looks at the capsule endoscopies himself and not a radiologist as I had thought.

This morning on my way to work I had to ask my husband to pull over at our local garage station so I could use the facilities. I go about 8-10 times in the morning sometimes more or less, than I am good for the rest of the day but still have pains and feelings of needing to go. I get pains and gurgling sounds after I eat, when I eat. I have feeling of bloating and fullness below my ribcage line.. I'm just so scared I am infected everywhere and that there is not going to be any help for me. I know what you are all saying but It has been 1 year now and I haven't felt good more than 2 - 3 days with the help of prednisone. I do hope that now after all my results are in he will beable to help me.
I guess what worries me the most is when I saw him the last time at the Hospital while dropping off the equipment he said that he thought it was the start of crohn's and that in 2 - 3 years we might have to treat it more aggressively, and 3 months prior he thought it wasnt that severe and we might only have to do something in 5 to 10 years. There has been so many what "ifs" so far that I have completely lost faith. Sometimes I think he is just guessing. I just wish he wouldnt of said anything till he was absolultely sure. I remember my first visit he said that he thought it wasn't crohn's and if it was it was mild mild case and that we can have it under control. What ever happened to that.

I have so many questions for him this time. I hope he has the time.
But my questions will have to wait again till next week, hopefully.
Posted 5/2/2011 3:45 PM (GMT 0)
So Daunting, the bloating and discomfort you're feeling is due to gas and inflammation, not infection. You haven't discussed having a fever which is why I think it is likely not an infection. We Crohnies get gas a lot because our intestines are not functioning properly and digestion isn't going the way it's supposed to go. Heather's suggestion of keeping a food diary is right on the mark. If you can relieve some of your discomfort you will be much happier.

The inflammation will have to be addressed with medicine. That may take some time. I'm not sure your GI is working well with you, and perhaps you should start looking for another DR who might be a better fit. But don't let this one go without getting all of the test results!
Posted 5/2/2011 3:55 PM (GMT 0)
Although to be fair a fever doesn't rule out a flare. I'll sometimes get fevers and night sweats during a flare.

As for the gurgling sounds, I totally hear you on that one!
Posted 5/2/2011 4:01 PM (GMT 0)
Thank you.

I get night sweats from time to time. Really hate them my husband says he can feel me burning up.
As for food diaries, I don't feel it helps because I have been eating bland food for a while now and a really low residue diet and I feel the same way.
My GI has told me not to bother with a food diary cause foods do not aggravaate the flare but to just watch if there is something that really bothers me. All I ate yesterday was, 1 toast, 1/2 cup apple sauce for lunch for supper it was 1/2 or white rice and 1/2 cup of apple sauce and still felt the same way. It doesn't matter what I eat. I'm starting to wonder how long I can live like this.
Posted 5/2/2011 4:21 PM (GMT 0)
Rice is always the first solid food I can stand - very simple and soft. Have you tried adding some drinks like Ensure? Whilst I don't advocate turning to entirely liquid nutrition without the guidance of your doctor, you might find it to be a good way of getting in some extra calories in your day.
Posted 5/2/2011 7:59 PM (GMT 0)
I just wish I could eat normally, I never ate bad. never had too too much greasy food. Macdonalds's wasnt my first place to eat out. I always like home cooked foods and fruits and vedgies. now i feel as if I will never beable to eat the things I want or do the things I want to do.
I'm now wondering if the doctors secretary will actually call me tomorrow to set up an appt or will I be shrugged off. I feel at this moment if I keep trying to get help from this doctor that I will eventually push him away. I really hope I am wrong.
This is a nightmare.
✚ New Topic locked
123