Me again - I’m sorry!

Posted , 7 users are following.

I’m sorry for taking up so much of this forums time & space, but not sure who else to ask & I’m beginning to loose faith in the uk’s gastroenterologist team so not even going there. For those that are new to my (long sorry arsed) story. 

Had Crohns 30 years

Small bowel resection 20 years ago - remission until approx 2 years ago.

Started pred 2 years ago - caused cushings 

Started aza caused liver troubles 

Battled my way on to Humira, didn’t work

Started infliximab - allergic reaction 

Due to start stelera - halted due to rapid growing cancer cells of cervix

Undergoing full hysterectomy within next 4 wks

Had pill capsule 3 wks ago - showing normal.

Bloods ESR/WBC All raised 

Stopped budesonide 2 wks ago as gastro said don’t need to be on any meds right now & will review me in OP. App was yesterday- got cancelled as apparently he’s gone on annual leave! Next appointment was booked for end November (yes you heard right - November). Called secretary to complain who rebooked me for end June. 

Meanwhile symptoms slowly creeping back in. Loss of appetite, pain/cramps, diarrhoea, nausea, exhausting/fatigue. Also have major facial rash (not sure if crohns related but it’s really bad). Anyway jump forward to this wk and start getting pain in stomach area, feels a bit like a babies head is pushing on it. Can barely eat, extremely nauseous, pain making me shivery, faint & so forth. Saw GP Wednesday who said thinks steroids have caused an ulcer in my stomach? Starts me on don peridone & tells me to up my PPI. Do this, then come this afternoon pain & nausea so bad end up calling 999. Two lovely paramedics come out do obs (all fine) and say only way to confirm stomach ulcer is gastroscopy & GP needs to do referral. Said I could go in but would probably get sent home again. So they called GP who arranged to see me later on. Saw her & she said again obs are fine, stomach soft & only thing she could think of is crohns flaring again given I’ve now come off everything. So she’s put me back on budesonide (which gastro didn’t really want but I was happy with as anything to feel better & be able to look after my kids). So now  I’m laying here (in bed as still sick) wondering if it’s possible for CD to jump around the GI track? I’ve always had primarily small bowel CD, and on occasion colon along with mouth & throat ulcers, but now I’m wondering if it’s flatted a bit In my actual stomach? Is that possible or does it really stick to the same part of bowel after 20 years? I just don’t get how I’ve gone downhill so quickly after finishing steroids - I was literally only ok for like a wk after finishing them and bam I have the paramedics out! Yet my GI says my CD is fine?? I’m so lost! 😞😞

And if you’ve managed to get this far & are still with me I really appreciate it! It’s so hard dealing with this illness & I do it on my own . I don’t let on how bad it is to my kids (especially my eldest as she worries so much), and my poor mum has enough to deal with without me stressing her out! If anyone can help me out again then thank you, and if not, no worries just thanks for taking the time to read it XX 

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9 Replies

  • Posted

    I literally have no words for you, you poor poor thing.

    I am so sorry for what you’re going through.

    I am also sorry they need to whip your bits out. Taking it that was from the iffy cells.

    All I can do is send you a virtual hug and ask the surgeon to have a poke about for any thickened bowel? 


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    • Posted

      Thank you my friend Alfieloo smile 

      Yep iffy cells went from zero to pre cancerous in 6 months. Haven’t had them checked since January so gotta have mri now to make sure not spread elsewhere 🙄 Never rains... 

      The surgeon did talk about trying to detach the adhesions but may rupture bowel, with any luck that may happen & I’ll get my bag & be done with it! Resection worked last time, trouble is this time the say there’s no inflammation?? Yet I’m so bloody ill 😫😩😩 I give up! Do you know if it can move to your actual stomach or whether this ulcer is just bad luck (as seems that’s the way my licks going right now lol)? Thank you Mr/Ms Loo smile 

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    • Posted

      Well that’s a blinkin inspiring tale fromthe surgeon!!!!

      Yes I believe you can get it in the stomach. 

      It just isn’t right or something isn’t, or you’d not be in this level of pain xxxxxxx

      When is the mri?

      And I am Mrs too xxxxxxx

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    • Posted

      They said the MRI will be within 2 weeks & the surgery within 4. I’ve had my pre op assessment just gotta have a HR one & this MRI then I’m good to go.  

      I’m not sure what’s worse, stomach ulcer or crohns in the stomach? 🤔 Either way it hurts & I can barely eat 😞 Mums just dropped off my budesonide so fingers crossed I’ll be bouncing back in a few days 🤞🏼 xxx 

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  • Posted

    Hello, I am so sorry all this is happening to you. I don’t have any words of wisdom to offer but you know your own body and if you are in pain it needs to be looked into, if your CD is fine then something else is going on. Can you insist on a ct or mri scan? Is there another GI in the practice you could see? 

    I wish you well with the hysterectomy and if you are still in pain speak up while you are in there and maybe they will investigate xx

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  • Posted

    So sorry you are you going through this. I've had Crohn's for 34 years and its no picnic! It certainly can shift from place to place and also like you mine was mainly concentrated in the small bowel but I am now suffering in the duodenum area as well as the small bowel again.

    Kelp pushing to get resolution from your doctors/consultants. It's your body and as much as they say thisctgat and the other only you know how much suffering you are dealing with.

    Take care xx

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  • Posted

    You need to build a new intestinal flora. How long does it take? Approximately two years and the result is fantastic. How do I know? Fifteen operations, all medicines on the market, all illegal drugs on the market, and then the construction of the new intestinal flora and Chron is no longer present. Doctors could not believe how the fistulas closed themselves. Therefore, food food food is very important !!!
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