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Tell me I'm not alone!

Hi Fellow Crohnies!

First time post! Am looking for a bit of support - hopefully by telling my story, someone else out there will be able to relate with me and help me feel not so alone!

I am 22 and I have recently been diagnosed with Crohn's disease (just last month). Just over two months ago - I had never had any problems before. I have always thought of myself as a healthy person - I've never touched a cigarette in my life, have never touched drugs, me and my partner hardly ever drink (have a glass of wine at a birthday or something like that). We also try and eat well and get to the gym at least 3-4 times a week.

Then all of a sudden about 2 months ago I started getting really bad stomach cramps - which I thought I had just picked up a stomach bug. After a week of this (plus the blood and mucus appearing in the stool) I went to see the GP who started the process of many many blood tests and stool samples and a CT scan.

The scan showed swelling at the ileum and I was referred onto the wonderful GI specialist that I am now under the care of. I had my colonoscopy soon after which showed the 'cobblestone' appearance of Crohn's - and they took biopsies throughout my bowel and all throughout came back positive (i.e. its not just restricted to one area).

For me, Crohn's doesn't give me any diarrhea - if anything it is the other way. For the last two months I have had constant stomach pains - my only relief is sleep. Every movement contains a lot of blood. I have headaches / migraines everyday and I feel really tired by the end of the day (I haven't been going to the gym at all anymore ).

The doc has me booked in for an iron transfusion (6 and a half hours of fun!) next week - hopefully this will help with the headaches and energy levels. Because it really has felt like my life has been on hold the last two months - I don't feel like eating, I don't want to go anywhere or do anything and I haven't been to the gym and feel like I may be putting on weight as a result. Lucky its winter - and I can hide it under some big jumpers and jackets right?

I'm currently on Prednisone (was on 40mg now down to 20mg) and Imuran (125mg) and haven't felt any better from these at all - if anything some days I have felt sicker. Doc assures this is normal and it could take months before I feel any better - her reassurance "we hope to have you feeling better by Xmas". Not what you want to hear in July...

I have a wonderfully supportive partner. But it is hard because he has no idea what I am going through and there isn't really any way for him to help - this is what he always says to me "I feel so helpless" "I wish I could help".
Sometimes it makes me feel bad that I am making him feel that way - so when he asks how I am I just say "yeah OK" - even if I'm really struggling. So fellow Crohnies - today you are my vent!! I feel like crap! I feel nauseous and have pain and headache and feel like leaving work and crawling into a ball on the couch!!

I have had my down days - which I'm sure we all have (especially thanks to Prednisone). It's terrible but you think - 'why me?'. I was trying to do everything right and live a healthy lifestyle - for me, I don't know what I was doing to my body to make this happen! And I don't know what to change to make it better! I'm not sure if I should start experimenting with diets (the doc says diet isn't likely to have much impact)? I don't know if I should push myself and get back into some form of exercise (particularly if this will make me feel less down)?

Pretty much just 'existing' and waiting for the meds to kick in and actually do something... So hard when it feels so out of my control!

Anyway, I write this with the hope to find someone else like me out there! And to find a bit of support from people who know what I'm going through.

Appreciate any advice.

Thanks,

Madeline
 

Cross-stitch gal

Moderator
Staff member
Location
Vancouver,
Hi and welcome to the forum! :welcome:

I'm sorry to hear what you're going through right now. But, I know that many on here have and are going through the same thing right now. It is difficult for our loved ones to feel so helpless when we're feeling like this. But, many of us are thankful to have them there with us.

We're here for you as well. Please feel free to check out the support part of our forum. We also have lots of information as well in our wiki part. But, I can tell you that you definitely are not alone in this! Hope to see you around! Sending hugs your way.
 
Sorry to hear what you are going through, but if I were you I would find a new doctor. Saying your not going to be well by Christmas is not an unacceptable answer. I believe you should need to find the right combination of meds. About 10 yrs ago I was in/out of the hospital one doctor even said my only option was to have my colon removed. Thankfully I didn't listen to him. I found a new doctor who was willing to be put me on all different meds until we found something that worked and I was in remission for almost 10 years.
 

Cross-stitch gal

Moderator
Staff member
Location
Vancouver,
Welcome to the forum suee!!!

Thankful to hear that you found something that helped! That is one thing that all of us hope for is to get into remission. Hope all's going well for you. Hugs:)
 
Hi Madeline!

Well first things first...you are definately not alone!!

There are so many people on here that know exactly how you feel and can relate to everything you are saying. Me being one of them! I am at the same stage as you, hanging about waiting on medication working. Currently down to 20mg pred, 100mg azathioprine (going up to 125mg shortly) but it is working. Slowly but surely it is working, and I am feeling better everyday.

I still dont feel strong enough to get back to the gym. But next week I am going to start by going out short walks etc get back into it slowly. Is that something you might be able to do with your partner?

Also, tell your partner when you're not feeling great. He'll appreciate you being open with him and in time will be able to recognise when you are having a bad day. You can't go through this alone, you need him there, and by the sounds of it he is quite willing to be there for you :) tell him there's nothing really he can do to help, just be there to provide cuddles and ice poles when needed! And run you hot baths :)

You will have off days. For example, last night I was the grumpiest, saddest I've ever been, totally feeling sorry for myself! Got in last night and just moaned continuously to him 'meh I'm fat and bloated and smelly and boring'. I went to bed early, had a good cry and woke up this morning feeling very silly! But he knows I have bad days, either due to the prednisolone or just feeling sorry for myself, so he leaves me alone to get on with it lol.

I hope you begin to feel a bit better soon! Please pm me if you want to have a chat or rant or anything at all! Everyone here is very friendly and nice, so dont be afraid or wary of anyone!

K xx
 
I'm so sorry to hear your going through so much pain but I completely understand, I also came to this forum to get some support and not feel so alone. I was diagnosed with crohn's in 2008 after my first colonoscopy found an almost complete obstruction in my ileum, after that i had emergency surgery, 12 days in the hospital and months of recovery, after healing though I've had the best five years of my life... for the first time in my life i was stomach pain free and i could eat everything and anything and go about my days normally. Unfortunately my stomach has started acting up again :'( about four weeks ago now I've been having on and off stomach pain and cramps... mine is sort of a constant icky feeling with occasional intense cramping sort of left of belly button... I haven't noticed any changes in my diet that affect it... I stopped working out lately and now i can barely get through my day at work like this morning I had to go in my office shut my door at 9am and cry. My job is very mobile and im expected to think and perform tasks quickly...this is pretty difficult when your stomach is killing you.

My fiance is also very supportive but also very worried... i feel bad because he's always asking if he can do anything and unfortunately theres nothing either of us can do at this point... I have kept trying to pretend everything was ok and continue setting up dinner dates and get togethers with family and I feel so sad and depressed that I keep having to cancel :( ... I feel like this is the start of my life's story all over again... my whole life I've had to deal with different doctors telling you the wrong thing...repeating blood tests that have already been done and the ER sending you away ... I'm so worried and scared that I'll have to have another surgery, that is my biggest fear right now ... my first experience was terrifying. I can't really think of much else to say at the moment but keep your head up I hope things get better for both of us
 
Hun, I know how you feel. Growing up, I was always so healthy. I ate a really good diet, and exercised daily. I was a ballet dancer, and was an apprentice to a professional company. In fact, I was considering majoring in dance at college. Then when I turned sixteen, I got really sick out of the blue. It was so hard. I wondered why on earth I would get sick with an autoimmune disease, and yet my whole family (twin sister included) be healthy. Don't get me wrong, I didn't want them to be sick; but I didn't want to be sick, either. I understand that it is really tough to go from being a healthy person to all of the sudden living and breathing Crohn's all the time. It's like I was a completely different person. I know it sounds cheesy, but there really is a reason for all of this. Something good will come of it, I'm sure. And yes, I'm not the same person that I was pre-diagnoses, but you know what? I like who I am know better. I am strong, brave, and courageous; and you are the same. We are not just sufferers of a disease, we are survivors. I truly hope you start to get on the mend soon. Hang in there and keep your chin up! Know that we are all here for you whenever you need to vent.
 
First of all - I just want to say a huge thank you to everyone for your support!
You will never understand how much it truly means to me! It is so wonderful to have a forum like this and to be able to talk amongst people who UNDERSTAND what I am going through! Sending you all my best wishes and hope that you all start to feel better soon!

suee9999 - I have an appointment with the specialist again tomorrow. I plan to push a bit harder to see if there is anything else she suggests that I should try - especially since I am seeing no results. What she explained to me last time though was that access to some drugs in Australia are different to other countries like the US. To be able to access the next level of drugs (I forget the names) - I need to be on Imuran for at least 2 months with no results - she was saying the govt does this because of the high costs to the govt through medicare. But I will see what she says tomorrow.

Aphrodite_x - glad to hear that you are starting to feel better everyday! I think I am going to take the same approach by starting with some short walks and then see how I go with that and progress from there. And me and my partner had a great chat about everything last night - and I think more than anything he just wants to feel like he can do something to help (so he has offered a back massage / back tickle for when I am feeling too ill to move from the couch - he's pretty awesome :) ). I think the wonderful thing is that we are closer than ever now and can only get stronger through this all. Let me know how you go with your walks. Hope you feel better soon.

Sherada - sorry to hear that you are unwell again. It is really hard when it flared up - especially the toll it takes on your mood and work. Sending all my best wishes your way that you feel better soon. I hope that they can get you into remission without needing surgery. Stay positive - just because that's what happened last time doesn't mean that it will be the same this time. If you ever need to chat or have a rant or anything, please feel free to PM me.

Essieluv - It is a really hard thing to come to grips with, isn't it. I watch another girl at my work who smokes throughout the day, has fast food at least 3-4 times for lunch throughout the week and doesn't go to the gym or exercise and she is perfectly fine... And as you said, it is not like you want them to be sick - but the mind can't help but ask why me? It has been a really hard adjustment for me, as like you, I never considered myself to be unhealthy - it has been a complete change. I think you are right though - I am a believer that everything happens for a reason. We just don't know what that reason is just yet! It's actually quite funny for me, I had only just moved to a new place about 3-4 weeks before getting diagnosed with Crohn's. I used to live about 2 hours away from Sydney CBD (where I work). I have just moved to about 20mins out. As such, I am able to get into work (there is no way that I could've managed to continue a 2 hour train ride there and back with my symptoms). Also, I was able to get into one of the best hospitals in Sydney with a designated IBD clinic - that is only 12 mins from my house. Even though I didn't want to get sick - it couldn't have happened at a better time. Funny isn't it? I am definitely going to take your saying - we are survivors, not sufferers :). How very true!


Hoping you all are well! Unfortunately, I am still feeling no better - on Saturday I was even throwing up. And I have woken up with a tickle in my throat and think I may have picked up a flu too! I am feeling pretty run down - but feeling positive today. I am strong and I can get this under control soon!! I am back to the specialist tomorrow and my iron transfusion booked for Thursday, will keep you all updated!

Madeline xx
 
Hi Madeline, I'm sorry your not feeling any better :'( I hope that the specialist will help you figure something out soon... I really appreciate your well wishes, it almost brought me to tears it is really great to have people out there who truly understand! I was wondering if the iron transfusion helped your energy levels or headaches? The only advice I really have when being so sick is to invest in the little things that make you happy, when i was really sick when i was little thats how i got into Harry Potter :).

I am feeling better the past two days, my fiancee is taking full control of my diet now and is only cooking healthy for us, I'd like to think its helping but im not sure. Unfortunately we just moved so I have to have an apt with a general practitioner (today) before i see a specialist. I really hope you feel better soon definately keep us updated and dont worry about relying on your partner that is what builds relationships :)
 
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