• 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.

Still Fighting! But sick and tired of feeling sick and tired...

C

catfud

Guest
Hello my name is Lee, I don't really know where to start... I'm 25 and was diagnosed when I was 16 with crohn's, and right now I feel totally lost. I have been dealing with crohn's for 9 years now and I have never spoken to someone else with the disease, I'm still trying to learn how to live with it.

I've reached a point where years of frustration and crap has just boiled up and I need to vent it out. I have read other peoples posts and their situation has been far worse than mine, but you all seem like a real supportive bunch and I think thats what I need. Support from people who understand rather than turning blue in the face trying to explain how im feeling to the people around me when they just don't get it.

I'd always had stomach pains as a child and never thought anything of it. Then in my young teenage years I began to feel more and more tired and started to have accidents. I tried to cover it up as best as I could, it was often very embarressing.

It got to the point where I could no longer go to school, had constant diarrhea and no desire to eat. I went to the doctors but they kept giving me the brush off saying it would clear up in a week or so. This went on for months! I spent 6 months of my life bedbound, I weighed nothing and my skin had gone grey. I was so weak I couldn't even get out of bed.

I would constantly wake up several times a night lying in my own feces. I didn't have the energy to move let alone go to the toilet a million times each night, or change my bed sheets repeatidly. My mother's partner was anything but understanding and would get angry that I was constantly waking them up in the middle of the night to ask for help. He was always making nasty comments that made me feel disgusted with myself. I was asigned a dedicated toilet so he wouldn't have to use the same toilet as me. He wanted to put a sign on it saying "Lee's Toilet". thank god a sign never went up.

Eventually the doctor decided to send me to the hospital to see a specialist. It took them about a year to finally diagnose me with crohn's. They put me on a course of steroids and I was feeling great within days. As I came off the steroids my symptons quickly returned. They tried me on various different meds but none of them worked and I suffered terribly with side effects.

I was poorly informed about the long term damages of steroids. I was fed up with feeling like crap and that none of this medication was working. I went directly to my doctor and told him I needed more steroids, he did not consult the specialists and basically handed them to me like sweets. I took them many times over a very short period of time. It wasn't until a checkup with the specialist that I was made aware of the complications and that I should not have been prescribed these without their consent.

I had some scans done and it was discovered that my bones had been greatly weakened. I'm told I currently have the bones of a 70 year old man (i'm only 25) I also have a disease in the base of my spine because of the weakened bones. (recently I was infromed by the specialist if I go on the steroids many more times I will not be able to do any physical activities when I'm older as my bones will simply break)

After this shock I pretty much said to hell with all the medication, I refused to take anything even though they advised me to. The specialist said himself that there is no guarentee this meds will work but they 'might' keep you weller for longer. I figured whats the point in taking these to stop yourself from feeling sick and tired when all the tablets do is make you feel sick and tired.

I started smoking lots of pot and to my suprise it kept my crohn's complete in check. I had a great run of about 6 years with only a very few minor days of diarrhea. My appetite was strong and no stomach pains, life was great! Eventually I decided I wanted to cut the pot out of my life, I wanted to be more from my life than being a lazy pot head. Thats when my troubles began again.

Shortly after all my symptoms returned. I had really bad pains in my stomach was constantly tired. I was suffering from really bad depression and anxiety attacks. I was reluctant to go back to the hospital and kept fighting it for about 4 months in the denial that it would eventually pass. My GF at the time could not understand my condition, she thought I didn't enjoy her company because I was depressed so much.

I had really bad wind (it smelt VILE) all the time and I had no control over this, her and all her friends would be grossed out and leave the room and I would just be sat by myself. When we were in bed together and id pass wind she would get so angry with me and just tell my how digusting it smelt and storm off to another room for hours on end. In the middle of the night I would have to get up and go outside to pass wind. The trouble is when your doing this 20 times a night and your suffing symptons you don't have the energy for this. I felt like the house pet that had been sent out the room for being bad. My status had been reduced to 'animal'. Sometimes I would pass wind in my sleep and she would get angry shouting at me that I did it on purpose to spite her.

I feel like I can't be around people during a flare up now 'because they shouldn't have to be exposed to me' I know this is rediculous my disease isn't contagious and I shouldn't have to feel like that but I do.

I recently went to the hospital and im ready to try meds again. I have been put on prednisolone and pentasa. I really didn't want to go on pentasa as i suffered really bad side effects in the past but decided to go with it as it's been a long time. The pred has worked wonders in the past in a matter of days but this time round does not seem to be taking any effect and I have been on it 2 weeks now. My GF brokeup with me a few weeks ago and I could really have done with her support right now. Though its probably a good thing lol she wasnt very understanding but still, breakups are stressful and It was something I could really have done without. I'm also in the middle of going to court which is very stressful!

ARGGGGGGHHHH!

The steroids have destroyed my sleep. I can't sleep until 2 am and wake up at 5 am without fail. By the time I drift off again my alarm goes off and its time for work. The pentasa is making my face numb and brain tingly it makes it very difficult to concentrate or think straight. So right now it's a whole lot of stress and meds that are doing far more bad than good. It's really too much for me to handle all at once, I'm screaming for a timeout.

I kept this bottled up for years and have always had the attitude of "this disease will never have a hold on my life" but right now im struggling greatly. I really badly need to get off this pred to clear up my head so I can think straight and be well rested. I think the stress is preventing the pred from working, feels like a vicious circle right now.

Sorry for the long post, I just dropped 9 years of word vomit into one post lol. I feel better for getting it out and I know that eventually I'll be through this and things will be ok, im just totally physically and emotionally drained right now. I feel like I'm learning to cope with the disease from day one again.

One thing I worry about a lot is the uncertainty of how am I gonna be in later life especially after reading others posts. Things can get really bad and you are all so strong for what you have faced!
 

GoJohnnyGo

One Badass Dude
Hello Lee, and welcome!

I don't know if I'm any good at cheering you up -- a lot of folks join up here during periods of great distress. So keep venting if you have to.

I will tell you one thing though -- you've acknowledged that others here are also going through some bad times, and that some of us battle-scarred Crohnies are getting better at coping. On that alone, you can be assured of being part of this community (if that makes sense -- sorry, I'm having my morning coffee).

Take care. Hope you feel better soon.
 
Last edited:
Hi Catfud, welcome to the forum where you will find the greatest and strongest bunch of people in the world. You have my deepest sympathy for the very rough ride you have had to endure.

My question is, why not take up pot again if you believe it was so helpful to you? There are lots and lots of people out there, suffering from a variety of debilitating diseases, who are only able to find relief in pot. This does not make them lazy potheads by any stretch of the imagination. It just makes them people doing the only thing they can do to find some quality of life.

I was a hardcore pothead for about 11 years of my life. This was long before I got Crohn's disease. In that time I went through college, grad school, and always worked, usually full time in a professional position. I always knew I was a pothead (I was definitely not in denial about that!), but lazy? Never! Before I started smoking I used to come down with colds and stomach viruses rather frequently, but during my 11 year pot run I was almost never sick. I for one know from experience that this plant is strong medicine and has some sort of immuno-enhancing effect which science does not yet understand (thank you War on Drugs!)

I'm not encouraging you to do something illegal because I don't know what the law says where you live, but sometimes you gotta do what you gotta do.
 
C

catfud

Guest
Thanks for your responses, it's refreshing to be talking to people who understand and is totally a new experience for me. I feel loads better from reading these two posts alone. I'm hanging on in there and am planing on kicking back and putting my feetup this weekend. :)

It annoys me how the meds and flare ups can affect my mood so easily, I have trouble where I'm not being myself and I often realise too late. I'm a fun happy person and thats who I want others to see.
 
C

catfud

Guest
Han Shan said:
My question is, why not take up pot again if you believe it was so helpful to you?
Hi han

A number of my friends have said similar things, the trouble is I just got to a point where I wasn't enjoying it anymore. What once made me mellow just made me paranoid and gave me really bad anxiety.
 
"A number of my friends have said similar things, the trouble is I just got to a point where I wasn't enjoying it anymore. What once made me mellow just made me paranoid and gave me really bad anxiety."
That's a shame. The exact same thing happened to me. All of the sudden it just turned on me and started making me paranoid, whereas before it made me feel good every single time. I could have someone offer it to me on a silver platter right now and I wouldn't think twice about saying no.
 

GoJohnnyGo

One Badass Dude
I was 26-27 years old at my worst. I found it gut-wrenchingly frustrating to be a young man full of things I wanted to do and being held back. Shaking with anger, fists raised to the gods. I remember it vividly, and part of me still is that person. It never really leaves you. It's an unspeakable injustice, this disease.
 
Last edited:
Welcome to the forum Catfud! I am only new here too, but I am sure you will find it a great support like I have. :)

You say that a lot of people have been thru worse than you here, but I dont know that I agree. As I've said before I think the post at the beginning of this thread about not being able to compare with others is so right. You may not have gone thru some of the hell of some symptoms and treatments but you have been thru an absolute pschological hell dude. You've done great to get thru it the way you have. :thumleft:

I find the incontinence is so humiliating and hard to live with. Your mother's partner sounds like a right b*****d!!! :mad2: You must be so scarred in your mind from this all. And your gf wasnt exactly supportive either. I know you miss her, but she obviously didn't get it and made you feel crap about yourself. It may be hard to believe, but I think that the right person will come into your life later on. There are people who do at least try to understand and have got the ability to put themselves into your shoes and try to imagine what it's like to be a Crohnie.

Its true Pred is an evil drug in alot of ways, but then it helps so much doesn't it? My bones are totally brittle too - just the other day I stubbed my toe on my walking frame and snapped it! Has your doc talked about other drugs that can be used to get you off of Pred? I am on Methotrexate for this, but there are other ones too. It means you can get off the Pred, but still get relief from the symptoms.

I really hope you keep on posting here and get the support you need. We all do definitely understand - I think I can say this even if I am new here! You are amongst friends here... let rip!!! ;)
 

GoJohnnyGo

One Badass Dude
I think one of the most profound things that comes out of a forum like this are the words "sorry to hear this is happening to you." To me at least, they're not empty empathy, but a genuine expession saying "I hate to hear about someone else facing the same." It's a deep message that outsiders really have difficulty understanding.
 
CookieCat said:
You are amongst friends here... let rip!!! ;)
+1 :)

It is a cruel disease that many people just don't understand. We all share
your frustrations! But don't ever sell yourself short- you're a stronger
person than anyone who may oppose you because of what you have to
live with and all of your struggles than people without the disease will
never be able to completely understand.

That being said, there ARE those people out there who WILL be supportive,
so don't waste your time with those who will shun you for having something
you have no control over! We are all here to support you as well, so rant on! :)
 
C

catfud

Guest
Thanks for all the warm welcomes.

Hi Mike love the name on your toilet door haha.

i haven't heard of the things you have mentioned I'm currently on calcium suppliments.
 
hey Lee! another welcome :)
im also pretty new here to this forum, and have already found it to be such a comfort to read and share with pple who have similar issues!
if your doctor hasnt talked to you about different medications like the humira or remicade, then you might consider looking at some other GI docs in your area. i think that your doc should be giving you all of this information! esp. since you were diagnosed years ago, she has had plenty of time to do her research. thats my take on it.
i also have sleep issues from the prednisone. i havent had it for almost 2 years and i still have much trouble falling asleep at night. i take benadryl just about every night, it pretty much knocks me out in 30 mins lol. sorry to reccomend more drugs!
best wishes to you while you search for your treatment options!
 
C

catfud

Guest
The only medications my doctor has offered me is 'Pentasa' or 'Asacol (mesalazine)' I go to the only hospital in my town and see the specialist for things such as crohn's. I think I'm a bit out of luck with choices for doctors without traveling very long distances. Though I must admit I'm not at all comfortable around him, I have to see him in a few weeks and I'm not looking forward to it. My nurses I see are much friendlier but they can only do so much.
 
Hey catfud. Welcome to the Forum :)

There really are a lot of other meds you could try. Remicade (which will be called Infliximab over here) may be worth a shot, but I suspect that you'll have to try some other (cheaper) things first.

There are drugs like azathioprine and methotrexate which will modulate your immune system, and there are several anti-biotics (like metronidazole) which sometimes work.
 
Top