Help!!

[Kimmarris94]

I’m newly diagnosed Crohn’s disease I’m 23 and this morning I can’t cope! I’m on morphine for the pain but it’s not helping today, I’ve tried having a bath and nothing is taking the edge away I’m really struggling I really don’t know what to do, I’m scared because I don’t know a lot about Crohn’s

[Hidden]

I'm so sorry to hear you're struggling xx I was diagnosed with Ulcerative Colitis last year so slightly different from you but I really do understand those days when we feel that we can't cope xx I had a very tearful week on and off (I've just started IV infusions for my UC and a bit overwhelmed) but having a better day today. It is very hard to accept the diagnosis. Do you have anyone you can talk to? Do you have access to IBD Nurses? The Crohns and Colitis UK website has the phone number for their support line if you feel it would help to talk. Hand in there xx Call your GP if your pain does not settle xx

[Kimmarris94 in reply to Hidden]

As of yet I don’t have no support from outside my family I only got diagnosed this week after taking them 4 and a half months of fobbing me off, with ibs, water infections, period issues and stuff, it took me to get admitted to a&e for them to do something, I’m still waiting to see my consultant after being discharged, I’ve spoken to a couple of doctors but I don’t know much still and that’s what’s the hardest bit, it’s just a scary thing, my partner is great but he doesn’t understand how just support me when I’m in pain so we get stressed, with everything being so fresh and new to me I don’t know where to turn, I’ve been on the Crohn’s website and read things on there, I need to get researching more and get in touch with them and get that support network going, I’ve done the membership thing so I get a can’t wait card and key, I’m just hoping they send some more info when that comes, my pain has eased now, I took some more morphine and managed to get a couple of more hours sleep, I’m still not used to taking the hours as they come so I plan to do tidying or washing and then pain creeps up, I’m still on steroids from what they gave me at the hospital they have to wean me off them for 8 weeks until I can get the treatment (if that’s what you call it) they need to do more bloods and stuff to see how my body is coping because my infection and inflammation markers were really really high, thank you for your reply xx

[Chantalrubysophia in reply to Kimmarris94]

What pain have you got and what period issues have they fobbed you off with? I have high calprotectin but it’s ibs apparently

[Kimmarris94 in reply to Chantalrubysophia]

It felt like burning in my upper abdomen, and when they said period issues it’s because I came on my period in between my 2 appointments on the same day so they said they are ruling it out at that but obviously they were wrong, they gave me stuff for ibs too which did nothing, I was in hospital 6 days and they gave me more answers in the first 24 hours than I’ve have since I’ve been getting my problems

[Chantalrubysophia in reply to Kimmarris94]

Ah I see, my periods are fine. I’ve had a clear colonoscopy but I have very bad lower pain and calprotectin of 338

[Kimmarris94 in reply to Chantalrubysophia]

See I don’t know what anything is with me because it’s all such a new diagnosis, I’m so unaware of anything I don’t know who to turn too, I need to make an appointment with my consultant I think and find out what’s what

[Chantalrubysophia in reply to Kimmarris94]

You should be given an ibd nurse and team you can call

[Kimmarris94 in reply to Chantalrubysophia]

Okay thank you, I’ll see if I can get through and see if I get get something sorted

[SORRELHIPPO]

I can say I know how you feel, even if it was 30yrs ago for me. Check your hospital's web site maybe under gastroenterology for an IBD Nurse also bombard the Crohn's + Colitis web site with questions. MOST IMPORTANT, keep a note of all the things you are feelinng now, all the questions you want answers to, take this with you to the consultant's appointment, insist on answers you can understand, write the important answers down, if the consultant objects remind him he can only treat you with "informed consent" and you wish to be able to remember what he says, for when you are alone and sleepless.

I think the most difficult thing for myself and friends, was coming to terms with an illness that is chronic, we do expect doctors to cure everying. I recall my inlaws 10years after my diagnosis, when I had a relapse, asking my husband "when was I going to get better, and was I ignoring medical advice, was it my fault I was not yet cured". I was lucky enough to hear my husband's explosion on his end of the telephone, so at least I knew he understood.

I never found anything brilliant with the pain when intesstines in spasm, you need to rest and listen to your body (easier said than done). Bed with a strategically placed hot water bottle works sometimes.

Biggest problem is that we all seem to take Crohn's in different ways, and manage the consequences in different ways, if you are a peson who likes to take charge, and controll their life, it is very difficult to accept, that for the time being, something else has taken over.

I wish you well

[Kimmarris94]

Thank you for your reply I’m waiting for a appointment in 4-6 weeks, I’m constantly reading the Crohn’s and colitis website and looking for things, I usually have a bath in the morning if I have discomfort which usually helps for a while xx

[Sarahvit]

Hi @Kimmarris94, my stepdaughter has Crohn’s and I have ulcerative colitis which is a milder condition than Crohn’s but they lump them together a lot. So I understand what you are dealing with. They have you on morphine more than likely it can be up to 3 x a day if you are only taking it 2 x a day or increase the mg if you are already taking it 3x a day. Also they can but you on a drug like Humara (sp?) which is a stronger drug to control the Crohn’s. I would call your GI doctor and get seen about. There are treatments out there. Call your doctor to get your meds adjusted so your pain can be undercontrol. Sorry you are having to deal with painful condition. I just thought of this don’t know if you are already on this but there are intestinal muscle relaxants Bentyl is what I take when needed. I think the classification is anti spasmatic. Call and get into see your doctor so they can adjust or change out your Crohn’s medications. You shouldn’t have to suffer like this. Hugs 🤗

[Kimmarris94 in reply to Sarahvit]

I’m currently on steroids which they are weaning me off for 8 weeks before they give me my treatment so currently waiting for a follow up and stuff xx

[Sarahvit in reply to Kimmarris94]

Oh good to hear the steroids will bring down any inflammation. Let us know how your follow up and course of treatment goes. 🤗💕🦋

[Kimmarris94]

I will do, and I had a flare up after some porridge today so hoping that if I avoid it it won’t happen again lol, I will keep you updated xx

[Sharon20]

Hi my husband was in a lot of pain and on morphine in September last year after he was discharged from hospital. I have put him on probiotics 26 million a day and after 24 hours the pain stopped and he has been pain free since .

Try them x