Saw my surgeon yesterday + plus heading for a nervous breakdown

Yay for an MRI scan!

I just read your UC post - it seriously made me cry. I am so, so, so sorry. That sounds just horrid. :( I am so sorry for what you went through. Your mom's friend was COMPLETELY out of line. It is absolutely none of her business at all what you choose to do. It isn't her place at all, and she crossed some major boundaries. And your mom should have stuck up for you. I want to give them both a big kick in the rear end.

I don't think you should apologize. Giving it a few days is a good idea. I'd say cutting off contact for a while might help, but I don't want you back in that same alone-ness.

Do you have a good relationship with your aunt in Spain. I know it's so hard to travel when you feel rotten. Is she someone who would let you curl up in bed all day if you need it, or would she expect you to participate in entertaining and going out and doing lots of things? Would it be a short or a long visit?

PS, I sent you a couple of emails, one of them totally venting (so please feel free to ignore that one, lol) right in a row. Sorry for flooding your inbox!

Another night of pain which painkillers hardly touched. Coconut milk curries were something I could tolerate reasonably well - at least until yesterday. Not only did I have the exact same meal a couple of months ago with far fewer problems, I didn't even finish my meal this time.

I need to book an appointment with my surgeon for after the MRI scan. I can't go on like this.

@scifigal - My aunt is pretty easy-going. She's already said I don't have to spend all my time with the family and can go off on my own, if I want. I'll also apparently have my own bedroom with an en suite bathroom. On the other hand do I really want to go on holiday and spend all my time in pain in Spain? I could take steroids and hope I haven't developed steroid resistance after all my time spent on pred in the past.

I'll check my emails soon.

@gumby - It was much better when the friend's husband was still alive. He seemed to be a moderating influence, but now he's gone, it's become painfully obvious that my mum and her friend have a toxic friendship built largely on lies and drink. Unfortunately I've got more hope of discovering a cure for Crohn's than of persuading them not to drink when I'm there. Alcohol is so embedded in my family and in the UK in general that it's extraordinarily easy for alcoholics to live in denial. They are just "enjoying" life, or whatever, no matter that they don't actually appear to be having any real fun in the slightest.

No, the only thing I can do is simply not go out to eat with them anymore. My mum - once she deigns to speak to me again - will pretend to accept this with pursed lips. She will then pretend at a later date I never said anything and the normal cycle of going out and her getting drunk will resume. I've always given in to be fair, because her drinking has become so utterly normalised it's a normal part of my life as well. Also, I suspect if I tried to lay down too firm boundaries, she would choose drinking over keeping in touch with me - almost positive of that.

"What part of Spain?" - Great question. And one I don't know the answer to >_>. Somewhere by the coast, that's all I can say. I think it's somewhere out of the way and not part of some touristy resort - at least I hope so. I should find out... :/

The friend is someone I've known for quite a few years now. We were internet friends at first, but have met up in real life a few times. Unfortunately she lives just that bit too far away for me to see her regularly. Neither of us have a lot of money and trains/petrol is expensive. But I'll try and drive down there pretty soon.

Scifigal - I've checked my inbox but I haven't received any emails from you. Are you sure they went through?

Gumby - I'll try to do that. I'm definitely thinking of going back to an ostomy. I've just had a seriously gruelling two hours of pain. It's not completely passed by a long shot, but it's better than it was. Found from experience that taking painkillers at the height of pain doesn't seem to work, so I rode it out until eventually there were stomach gurgles and I got a bit of relief.

I think as from tomorrow I'm gonna go on a liquid diet. Have a degree of pain virtually all the time now. Eating low residue doesn't seem to help. God knows what I'll do if the MRI scan comes back clear; I don't want active Crohn's, obviously, but I do want to know what the hell is causing this pain!

I'm not keen about going to Spain with this amount of pain tbh. If I have a serious obstruction or something, what do I do? I dunno, if steroids fix me up then I'll go. Trouble is, my surgeon wants me to stay off steroids until I've had the MRI scan so I have to wait nearly a month for that - my aunt was gonna book the tickets in January.

#rambling

The trip will be at Easter - not sure when that is this year, but won't be before the end of March, obvs.

I thought about going to A&E but it's not likely to fast-track the MRI. I'm also not sure which A&E to go: the local one or the one at the hospital I go to for my Crohn's. I'd rather go to my Crohn's hospital but it is a massive to-do to get there by public transport and cabs are too expensive for me.

Anyway, if over the next 3 weeks the pain gets much worse than this I will probably go, 'cos I'm at my limits for coping as it is.

I'm glad you (probably) don't have c. diff but the lack of sleep and gas/cramping majorly sucks. Wondering if you have scar tissue at the anastomosis site or adhesions creating a kink somewhere. I know gas and cramping can be caused by IBS, but still. Maybe it's time to get some small bowel imaging done...?

Yeah, my GI suspects adhesions, but I think the gas is some sort of bacterial overgrowth. I don't know. I think the next step is probably a colonoscopy, but I'm waiting to see if I get better or worse. I was just in an hour long work meeting and I had SUCH BAD GAS, and of course holding it all in. No fun at all!

I do think you should start to think about how to get to your Crohn's hospital if you need it....I don't know if you can start to save up cab fare, or if your parents will help you if needed. You can be mad at them and still let them help you, I think. It's only 3 weeks till your MRI, but then with you it seems like its another couple of months for results......the waiting endless!

Nikki - Thanks! My mum's friend has always been a diva. I do think she's become much worse in recent years, but she's always had a tendency to get on her high horse with people. My mum is her only friend and has spent the last 40 years telling her exactly what she wants to hear, which is confirmation that she is a wonderful person who is always, always in the right. Fair enough, that's between the two of them - it's not up to me to say anything and I haven't. But as far as I'm concerned, the friend overstepped the mark with me yesterday. She can bully her (now-gone) husband and my mum, but not me.

Hopefully I will get to go to Spain. Even more hopefully, I will get to be able to actually eat and drink some of the local food.

Gumby - I dread the thought of adhesions. They are almost impossible to detect without having more abdominal surgery and even harder to treat. At least Crohn's can go into remission.

Gas is really common. If farting is a sign of having lots of gas, then I don't seem to have ever had much gas - I do fart but not often. Could be caused by SIBO, could just be good old fashioned IBS.

My parents are the ones who are not speaking to me rather than vice versa. If my mum had phoned today, I'd have spoken to her perfectly pleasantly. But I know she is in a massive strop with me right now and is deliberately ignoring me, because she's done this a zillion times before. If she is expecting an apology from me, she will be sorely disappointed because neither she nor her friend will ever, ever, ever hear an apology from my lips for what happened yesterday. It's not my fault she and her friend can't hold their drink to save their lives.

Yeah, the waiting feels endless. Have you ever read a play called Waiting For Godot? It's like that.

So, can you go on steroid right after the MRI? I think if the steroids work, then it's definitely inflammation and then it makes sense to try Entyvio or one of the biologics you haven't tried.

I've been away from the forum for a while and just read your "restaurant experience", and I'm just so sorry. The woman was totally out of line. I don't understand why people have to be such jerks when it comes to understanding chronic illnesses that others are burdened with.

For what it's worth, I had to cut ties with a family member who became a self-destructive alcoholic who wanted to take prisoners, so to speak. It was either cut ties, or be swallowed up in the insanity of her world, which I nearly was. I'm not saying that's what you should do, but just saying I understand how hard it is, and sometimes how necessary it is.

Good luck with your GI appointment. I hope you can start on Pred as soon as you are done with your MRI while you are figuring out what to do next.

If you can feel out of pain, but have to be a little overweight then it's worth it if you ask me. But I'm not at all thinking of long term Prednisone.....just something to help this constant pain you are having till you and your docs can decide about biologics vs surgery. I've never been on Pred long term, but I also never gained weight on it, because every time I was on it, I was very sick and unable to eat much, so I actually lost weight on Pred. Good luck with your appointment tomorrow.

Well, then I hope they can start trying the Remicade right away....I hate the thought of you being in so much pain. I'm considered normal weight now...about 24 BMI. I was consistently around 10-15 lbs higher pre-Crohn's. I guess I was a bit chubby looking back on it....but I was so much more alive....went to restaurants and ordered whatever I wanted, had dinner parties, had lots of fun and felt good. I was never severely obese, and my BP and blood sugar were normal....I was just fat by fashion or weight chart standards. Everyone thinks I look "adorable" now in my size 6-8 clothes (don't know the UK conversion to that) but I would trade for my old chubby healthy self in an instant if I could feel well every day.....that's all I was thinking.