Here we go again

[Carolyn P]

I want to scream and I haven't got the energy. I had surgery for Crohns for the fourth time last March. It's already active again, I'm so tired and I don't want to fight anymore. I'm back on the steroids, iron tablets and another new tablet i can't remember at this moment. I see the GI nurse tomorrow to discuss starting another treatment - Infliximab. When is there ever an end to this damned illness. My daughter has it too and thankfully following surgery this January she's well. I have'nt been on this site for ages so i may have a cheek coming on now, I don't even remember how to use it properly so I'm just ranting to a computer in the hope if I get it out my system it'll help.

I seem to permenantly need the toilet and i'm afraid to leave the house. I can't even enjoy walking round a shop because I'm too busy needing to sit down all the time, even when there are no chairs i'll improvise and sit on shop displays. My weight is down and though that is never a terrible thing I'm just so weak. I'm off sick again !!!!!!!!! I'm wanting to go down the route of ill health retirement but i'm frightened in case I end up with no income. I'm super annuated and thats all i want, I don't want to claim benifits. I'm so tired and feel very alone. I don't kn ow if anyone will see this i just need to sound off.

I think life is worth living, I have 2 lovely daughters and a husband I adore so I wouldn't doanything stupid because of them. I'm just very very tired.

Carolyn P

 

[glum chump]

Hi Carolyn

Welcome back! I'm sorry to hear that you're having a rough go right now. The weakness and being glued to the toilet is so hard...it's so hard to find a way to be a part of all the life around us when we've got no energy. And so the road you're travelling on gets to be lonely and solitary.

Hopefully, the Infliximab/Remicade will help soothe the symptoms. And I really hope the steroids and iron help with the symptoms as well as give you a bit more energy.

Try to stay as sane as you can, and fingers crossed that the Infliximab works like a charm for you!

Kismet

 

[Jennifer]

Do you mind if I ask when you had your surgeries, how long apart they were and what medications you were taking before and after each surgery?

A lot of people have had great success with Remicade so here's hoping you wont have another surgery.

 

[Snoflayk505]

I remember that torture all too well Plus with kiddos it's even harder. Have you ever given diet a try to help calm your Crohn's? I manage my Crohn's with the SCD diet. I wish someone would have told me 11 years ago that food really does cause my symptoms, would have saved me a lot of torture. Some people are not a fan of these diets meant for digestive disease when they have low weight though because of all the foods like grains and sugars that are cut out. That makes it even harder to stay at a healthy weight, but if you can make some changes it might make a difference. Worth a try if you havent tried it yet. It works for so many.

I really hope you find some relief soon. You are not alone, we are all here for each other

 

[PattyLynn]

You poor thing! Here's praying that the Remicade will be your saving grace! How long do you have to wait for your first treatment? Hopefully it is soon and you start to see some improvement. What kind of surgeries have you had? Have they all been resections to remove diseased portions of your intestine? Would you consider seeing another specialist? I know our doctors are like our hairdressers - when you find someone you like, you don't want to switch - but in your situation, a new gastroenterologist may have a solution that hasn't yet been tried on you. It can't hurt and it just may help.
Keep your chin up, my dear! There are a lot of people out there who care about you :hug: and you can always rant on this forum! Better to get it out than keep it smoldering inside!!

:hang:

 

[Carolyn P]

thank you for your replies. my surgeries were 1977, 1983, 2000 and 2011. I was usually on prednisolone or budesonide before and I have been tried on Azothiaprine which i had a bad reaction to. i think i had M6 ?? Can't quite remember. Itr's been over a lifetime and I can't remember everything.

I have been on a liquid only diet and low fibre/ low residue diet. I've basically been told it doesn't matter what i do dietry wise I'm not going to prevent the illness coming back. Told not to eat something that disagrees with me ! Everything seems to disagree with me, as soon as I eat anything within about 15 mins it's screaming to get out of me and i have to run to the loo. I've tried not eating when at work but if i ever get back I cant just not eat.

I had a chest xray and blood tests this morning with a view to commencing infliximab. I have to go for a scan at end of next week. Once they have all the results back they will contact me to discuss starting the treatment. They were going on about all the side effects but I believe I have to try it as it may just help. With a bit of luck i won't have side effects. At least thats what I'm hoping.

I think i've remembered to answer all your questions.

Thanks again all of you. It's so nice to have the support.

Carolyn P

 

[Snoflayk505]

Carolyn you should look into Paleo or SCD diet! I was told the same thing about diet. I didnt eat fruits veggies or anything like that for 11 years! Come to find out, if im not flaring I can eat that stuff. The SCD diet brought me out of a flare faster than any medication ever had, even the steroids.

I was in a full flare and had one of the most severe casses of Crohn's my doc had seen. It was completely unmanageable without steroids. I started with the intro diet found here http://www.breakingtheviciouscycle.info/p/the-intro-diet/
There is a food list and all.

PLEASE look into it. You might be one of the lucky ones like me that you can control your disease medication free. Its worth a shot anyways

PS. I know beans and nuts and fruits and veggies hurt but they probably wont when you are symptom free! Good luck to you