Crohn's Disease Forum » Support Forum » Can't cope waiting for a diagnosis (sorry there is some graphic bits)

10-10-2017, 07:03 AM   #1
Join Date: Oct 2017
Location: United Kingdom
Can't cope waiting for a diagnosis (sorry there is some graphic bits)

Hello, I hope you don't mind me posting here before I am diagnosed, but I am not coping and I don't know where to turn. I've had the calprotein test which has shown moderate/high inflammation, and blood tests show the same. My doctor has said she is pretty sure it's crohns.
I don't know where to start really. I'm sorry - this is probably going to be a very long post! I've been really suffering with depression and anxiety, I thought that was causing a lot of my symptoms as I've always had a nervous tummy. The last three years have been bad, with a couple of periods where things were very very bad in terms of my tummy issues. The past few months have been even worse - I have constant pain, nausea, a hard lump on my left side, diarrhoea (most days going 4 times or more plus maybe once a week having to run to the loo to pass just fluorescent yellow water - sorry for being graphic), constipation at other times, and only being able to do tiny thin rabbit size stools, stabbing pains in my stomach which take my breath away, and my stomach is really really really loud. It's so embarrassing - I can't do anything it happens whether I eat or not, if I need the loo or not, it's so loud and makes the worst noises, from growling to farting noises, bubbling, popping, it's insane. It's ruining my life. I can't leave the house, and am scared I will lose my job as I do community work, and I've had to go off sick. I can't take any medication as my doctor says without a diagnosis they may do more harm than good, so basically I just have to carry on like this?! The waiting list for the colonoscopy is until December at the earliest. I don't know what to do. I'm not coping and I can't seem to do anything to help. I've cut so much out my diet - only drinking water, I'm vegetarian anyway, but now avoiding dairy and eggs too, I've cut gluten out my diet, and soy. I'm avoiding too many vegetables. Nothing is making any difference. This sounds ridiculous but I've always had a bit of a phobia of this anyway (mine and other peoples) since I worked with a mentally ill woman who had smeared it everywhere in her house - literally collected it and put it all over the floors walls, surfaces - it was so bad and since then dealing with even my own makes me feel a bit nauseous! I've read the online advice about how to cope, and I cannot tell you how devestated I felt when the advice included taking a spare pair of underwear and a nappy sack. The thought of having to clean that up, or doing that in public makes me want to die. I'm sorry I know that is so heartless and I know other people have dealt with that, and I'm so sorry - I don't want to offend anyone but I honestly can't cope with that. I'm in floods of tears now just thinking about it, and I've barely left the house I weeks because of it, which is making my depression get even worse.
My husband and I have also been trying to get pregnant for four years, and have had three miscarriages - I've read that crohns can make getting pregnant and staying pregnant harder too.
I don't really know what the point of this post is. I just feel like the world is ending at the moment and I'm really really struggling. Any support or advice would be really appreciated xx
10-10-2017, 07:07 AM   #2
Join Date: Oct 2017
Location: United Kingdom
Forgot to say I've also had a small amount of blood in my stool a couple times and most of my pain is on the left side, especially the stabbing pain (as is most of the large mass/lump, although this sometimes can be felt on the right), although when touching my stomach it's generally most tender on the lower right.
And that's my left and right.
And I'm 30 yrs of age
Thank you for any responses x
10-10-2017, 08:29 AM   #3
Forum Monitor
ronroush7's Avatar
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
Welcome. Know that you will find lots of support here. You said you are undiagnosed. There are others on here who are undiagnosed. Feel free to come here anytime.
Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
10-10-2017, 08:45 AM   #4
Senior Member
teeny5's Avatar
Join Date: Jul 2008
Location: California

My Support Groups:
I am so sorry to hear you are going through such a tough time right now. The colonoscopy should lead to diagnosis if the disease is in your colon. Until then I would ask your doctor about nutritional shakes. If you are not getting enough nutrients it will be too hard on your body. A food diary is also good to see what foods are better tolerated by your body right now. It is different for everyone. I too had anxiety issues that got bad when I was very sick. I ended up getting medication for it...once my disease was under control I was able to get off the anxiety meds. I know you will probably not want to hear this, but it is probably best to hold off on trying for a baby for now. You need to get your symptoms under control so that your body can support a baby.
Good luck to you, I hope you can find the support you need on the forums.
Currently on: Colazal, Prilosec, multi-vitamin, probiotics, total EFA's, glucosamine.

Previous meds: Sulfasalazine, Asacol, Rowasa, Pentasa, Entocort.

"Adopt the pace of nature: her secret is patience. -Ralph Waldo Emerson"
10-10-2017, 08:55 AM   #5
Join Date: Oct 2017
Location: United Kingdom
Thank you both for your replies
Teeny I will look into nutritional shakes - I have been taking lots of vitamins when I can, but find that I have to be really careful as even they can bring on bad diarrhoea very quickly unless I take them with the right type and amount of food. I seem to only really be able to stomach plain, gluten free carbs at the moment.
I know I'm my head we should stop trying to conceive at the moment, but honestly that just hurts my heart so much. I got very ill with swelling on the brain last year, and we had to stop for 8 months - it was really heartbreaking. My husband is older than me (42) and we both worrry if it doesn't happen soon, it may never happen for us. We're also in the process of fertility treatment at the moment after a long time waiting for the referral (as we were about to start treatment just before I got sick before, and then had to be discharged while I recovered). I know it's seems silly but I just don't want to give up. I feel like this is ruining my life! I just seem to go from one disaster to another at the moment!
Sorry I know I'm whinging but I just feel so down and lost - thank you so much for replying and helping x

Crohn's Disease Forum » Support Forum » Can't cope waiting for a diagnosis (sorry there is some graphic bits)
Thread Tools

All times are GMT -5. The time now is 09:50 AM.
Copyright 2006-2017