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Crohn's Disease Forum » Support Forum » Vent Away » Deeply confused and feel alone


12-09-2013, 12:38 PM   #1
Earthsoul
 
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Deeply confused and feel alone

I have a biopsy positive diagnosis of IBD, it was in my caecum but not my rectum so my doctors said it was Crohn's disease as it was skip lesions.
When I had my son 6 years ago I started to get pain and vomiting, and it has got worse and worse. I have had tests, my last CT showed thickening of the left side of my colon. My colon seems to not be working right and for some reason all faeces stops at the splenic flexure, so I end up with loads in my ascending and transverse colon but nothing any further down. I am finding any solid food makes me ill. Over the last year I have lived on modulen (which is a liquid replacement diet) but my doctor says it is not appropriate to be on it.
Anyway to cut a long story short I have lost 30kg in the last year and have ended up in hospital on an NG feed, I am gaining a little weight but not as much as the dietitian wants. My doctor cannot find any active disease, but I am still unable to tolerate any solid foods, I get pain, nausea and vomiting and lethargy like nothing I have ever known, I end up sleeping all day.
Now I am in hospital the team seem to be frustrated and angry with me, the dietician says I have not gained the weight she expected and then says because I have had weekend leave (but I have still had the feed overnight and the right amount of calories), my consultant wants to try me on a drug that is contraindicated for IBD. Yesterday I was left for 7 hours asking for pain relief. If I was not a nurse myself I would not have believed it.

I am lucky I have good friends with Crohn's or else today I would have just given up.
My husband is really upset that I am being treated like this, he always gets down at this time of year (he has seasonal affective disorder) and this has pushed him down onto the floor.
I guess I just needed to vent sorry guys
12-09-2013, 01:20 PM   #2
Joonie
 
Join Date: May 2013
Location: Bolton, United Kingdom
Hi, I'm sorry you are in pain. No one should have to wait 7 hours for pain relief :-(

Has anyone mentioned an osmotic laxative to try and clear the 'back log' from your ascending / transverse colon? I had huge amounts of poop 'stuck' in my ascending colon last year and in 2007 when I had an inflamed descending colon. My consultant said the opposite side to the inflammation gets rigid like a lead pipe effect and peristalsis gets less and less, therefore you get in a constipated situation (but liquid poop can still pass) . If no one has mentioned this it might be worth an ask to see if it could be suitable in your situation??

I hope you can get some relief soon x
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Current meds:
Diagnosed pan crohns-colitis 2006
Mezavant xl -4 per day
Probiotic
Multiple vitamin
started 50mg Azathioprine May 2013
X 2 flares in 2013 needing Prednisolone
Nov 2013 - Doc considering escalation to Humira
12-09-2013, 01:36 PM   #3
Earthsoul
 
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Thank you for your suggestion but I have been on loads of laxatives sadly from laxido, to senna, I am on magnesium at present, I have also irrigated my bowel (which is completely not allowed with IBD but I was at a loss what to do). The consultant thinks I am not peristalting properly, which leads people to class it as just constipation, or IBS.
I am just fed up with the whole thing, they do not seem to want to do anything.
I feel like my whole life is being overtaken by this disease, I cannot eat, I am sick all the time, my career is in pieces.
12-09-2013, 04:15 PM   #4
grt73
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Hey earth soul,
Sorry to hear you are having such a hard time, the hospitals have a great way of making you feel you are not pulling your weight( pardon the expression) I lost 20 kg in 8 weeks due to this dam crohns/ surgery and it is very hard to deal with mentally. I was being fed via a tpn and in all fairness I don't think I was getting the right amount of calories my body needed. Speak to your dietician/ nutritionist and demand they give you the attention you require, liquid nutrition will never be as good for you as proper food and a good balance of nutrition will also aid a better recovery! has taken me a year to put 10 kg back on and i have been packing it in. Its a slow process for sure, To start with I went for things like jelly babies, 7 of those little beauties is an extra 100 calories in your day. Also found them easy to stomach when I was feeling pretty rubbish. As for the pain relief,keep pressing that buzzer until you are blue in the face! Making yourself a complete pain in the backside is pretty much the only way to get service in an nhs hospital. I think I was hated by 75% of all staff by the time I was discharged. It's tough, they are there to do a job and they should do that to the best of their ability. Stick with it and try and stay strong. You just gotta get well enough to get home, that is the place I think true recovery starts!
12-09-2013, 04:44 PM   #5
Earthsoul
 
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I like your style grt73, I am a compliant patient, sitting, not wanting to make a fuss or enemies. But all I seem to have done is comply for 3 weeks and it is still not enough!
My consultant mentioned St Marks in a meeting last week and I am now pushing to go there for a consultation.
At least they have sorted out the air mattress that was beeping next to me!
Eating any food makes me feel so unwell, I have sucked on some cherry sweets this evening!
Cannot believe it could be so hard to gain weight!
12-09-2013, 06:36 PM   #6
Trysha
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Keep after the appointment for St Mark's.
They are the best at diagnosis .
Some specialists don't believe in pain medication---I don't know why this is.
I have never been prescribed pain meds, I have to manage on my own.I use heating pads and hot water bottles.
My specialist is from UK and shortly I will be changing to someone else who is more supportive of my needs., and not fixated on age.
Feel better soon
Hugs and best wishes
Trysha
12-10-2013, 04:31 AM   #7
Earthsoul
 
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Yesterday I decided to stop solid foods as I felt so ill, so fatigued and unwell, today I feel so much better! so much stronger.
I am ready for the fight now, I am going to contact my health insurance (I get it through work) and then ask for a private referral to St Marks, I don't care if it is NHS or private, to be honest I just want this mess sorted out.
I have only managed to put on 1.5kg in three weeks of solid NG feeding, and instead of looking at the fact my bowel may not be absorbing the dietician is blaming me, saying I am too active! I have complied all along and I am pretty fed up with their need to blame me for their errors.
Yesterday I was really down, today I am more angry, and that anger will motivate me to start to fight.
12-10-2013, 07:26 AM   #8
ellie
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Join Date: Apr 2010
Location: Sydney Australia

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Hope you get some help at St Marks - even here in "the colonies" we've heard that


HD
12-10-2013, 07:30 AM   #9
ellie
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Oops - wrong button too soon
Meant to finish "St Marks is THE place to go for colorectal training"
Hope you get some helpful answers!


HD
12-10-2013, 03:35 PM   #10
Earthsoul
 
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thank you, BUPA pre-authorised it for me today as my work give me health insurance luckily.
I am scared, if this doctor cannot sort me I am kind of at the end of the road
12-10-2013, 04:49 PM   #11
Trysha
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That is good news for a start.
Hopefully your experiences at St Mark's will be more helpful to you.
\Feel better soon
Hugs
Trysha
12-11-2013, 05:26 PM   #12
grt73
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St marks would be the best option without a doubt! All we want is for someone to listen, offer us the best solution and help us get the treatment we unfortunately need. Why is this so often not the case? Stay calm and good luck
12-11-2013, 05:36 PM   #13
grt73
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Oh and then end of the road is miles away!!!!!! As one door closes there's always another to bang your head against lol
12-12-2013, 05:53 AM   #14
Earthsoul
 
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thanks guys, I just wish that this would get some resolution!
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