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Desperate for surgery

Hi all,

Long story short, I need to have a full proctocolectomy to be able to recover. The problem is that it has taken so long to identify the problem I've been having for seven years now, I've been left very underweight. I've successfully managed to get a referral to a surgeon to perform the operation, but he is incredibly reluctant to do so because I'm underweight.

I've told him that I'm more than willing to waive any sort of liability, and that I'm fully prepared to take my chances with any potential complications with anaesthesia, the operation itself and everything. I'd be able to recover a healthy weight AFTER surgery, but I'm currently unable to do so as a result of my condition becoming worse over time.

He wants me to go into hospital to be tube-fed, but on top of this being an incredibly long term process (literally God-knows-how-many months of just sitting in a hospital bed) I was in hospital for the same thing in 2016, during which time I was abused for over a month, which has left horrific traumatic scars on me, so you can imagine I don't exactly want to repeat the process for even longer.

Does anyone have any advice on how to move forward I. e. with pushing this procedure through? I'm so desperate. Any advice anyone can offer is massively appreciated.

Best wishes and all my love ❤
 

my little penguin

Moderator
Staff member
Agree depending on the country
You can drink orally at home the formula without a tube
Versions vary by country
Polymeric versions easiest to drink
Boost
Elecare

semi elemental your GI can get samples of all
Peptamen
Modulen
These are easier to absorb by your system but taste is worse

last would be elemental nutrition
This is broken down to amino acids so only a few inches of healthy intestine needed to absorb
Vionex
Elecare jr (for kids )
Neocate jr & Neocate splash (both for kids )

if you are extremely underweight theGi may need to admit for a few days to get the feed rate right so you don’t develop refeeding syndrome
Where your bodies electrolytes are so far off due to malnutrition it affects your organs if you drink too much formula too quickly
They have to do lots of blood work while they try to get your system back in balance

when you don’t weight enough surgery puts your heart at risk so they really do need you to gain weight first
 
Thank you for your responses,

A major problem for me is that I can't have nearly all supplements because they mostly contain sugar, or liquid carbs in general which I can't tolerate - the only one I'm aware of is calogen that I can actually have, and that's 50/50 oil and water. I'm even limited in the amount I can tolerate at a time, plus the opportunities I have to even consume them.

And yeah, I'm aware of the risk of death/complications, what is most annoying to me is that in reverse, the patient would always have the right to refuse any surgery that'd be required to SAVE their life :/
 

my little penguin

Moderator
Staff member
If you can’t tolerate liquid carbs /sugars
Have you tried amino acid based formulas (vionex ) /neocate splash -no intact proteins ?
Other wise it’s Tpn
Tpn typically keeps you alive , is hard on the liver and organs but doesn’t cause weight gain
 
Have you tried canned coconut milk? (Check it’s one without additives). This is what helped me finally get some weight back on. I add it to smoothies or soups. Very high calorie but mainly fat, not a lot of sugar or carbs. You could try it added to chicken soup to stay low carb. The other possibility might be almond butter - also high fat low carb- but I have to limit nut butter as I’m not sure about risk of blockages.
I hope something works for you.
 
Thanks for the coconut milk suggestion, I'd considered it in the past but I completely forgot about it 🤦‍♂️

I'm thinking something that may possibly sway his mind about the operation is if I can begin to gain some over a period might help to show that I'd be able to continue to do so on my own, especially so if I could have it to be able to have a proper diet again without having to go through months of hospital time wasting.

My main issue is that he seems to be steadfast in his opposition to operate because of the weight that I am. I remember one of the other reasons he listed to try and get me on his side was that the major lifestyle change of having a stoma being impractical, but I personally think that is just another reason why I'm a viable candidate, as I already have a bladder problem, so I'm already used to constantly have toilet access prioritised from having to go a million times a day for over 10 years now.

I'm just so desperate for ways to convince him to operate. I'm going to try suggesting that having it done ASAP could prevent potential dangerous complications of my worsening state - ruptures etc.
 

Bufford

Well-known member
A stoma may not solve your problem, you will still be making the same number of trips to the washroom and then you will have to deal with the multitude of inconveniences, complications that come with caring for a stoma and expenses ( stoma supplies are very expensive). A stoma will change your life forever, reducing your quality of life having to constantly deal with the thing. I've had a stoma now for 21 years, and if I could reverse it I would. I had to get a stoma due to complications arising from fistula complications of my rectum that created a life threatening infection. I agree with your doctor, I think you need to treat your chrons which appears to be further up in your system.
 
A stoma may not solve your problem, you will still be making the same number of trips to the washroom and then you will have to deal with the multitude of inconveniences, complications that come with caring for a stoma and expenses ( stoma supplies are very expensive). A stoma will change your life forever, reducing your quality of life having to constantly deal with the thing. I've had a stoma now for 21 years, and if I could reverse it I would. I had to get a stoma due to complications arising from fistula complications of my rectum that created a life threatening infection. I agree with your doctor, I think you need to treat your chrons which appears to be further up in your system.
.. No, I have an autoimmunity in my rectum which affects my LI. The specialist who finally identified this has referred me on for surgery to have a full proctocolectomy to remove it altogether. Because it took... I can't even remember how many years, it worsened over time to the point of restricting the opportunity I have to eat (complicated to explain in full) and thus I'm in a position where I've become underweight purely as a result of this condition.

I have the full knowledge and cooking ability to regain weight, I just need the operation to facilitate me doing so. I'm used to having toilet access constantly on my mind from a completely unrelated bladder problem, so continuing to do so is by no means an inconvenience in any way.

Lol there's a crappy incontinence/inconvenience pun in there, somewhere.
 

Bufford

Well-known member
You will have to make that decision, but I would listen to the doctors carefully, that is surgery not to be taken lightly. I've had to deal with chrons returning to the stoma area, and its a complication I can do without. All the chrons symptoms will remain in the GI tract upstream from the stoma post surgery, the only thing that changes is where stool comes out. For me the fistulas healed over, and the infections never returned, but everything related to chrons in my GI tract is still active. I have so much damage in my rectum, that my stoma had to become permanent.
 

crohnsinct

Well-known member
My daughter was in a similar position. She needs a proctocolectomy but was underweight. It’s very hard to gain weight when you have the disease working against you. I understand how desperate you are to have the surgery that will fix this problem and you understand the risks but having the surgery at a severely underweight point will also mean that the surgery could not be successful even if you are able to survive it. Then you have gone through the surgery and are still dealing with issues.

My daughter eventually had a g tube surgically placed in her stomach and she fed herself formula with it. She tried formula exclusively to help her Crohn’s heal and when that didn’t work she used it for supplemental nutrition to gain weight. She has gained 11 pounds and now is cleared for surgery.
 
Thank you for the responses.

Again, I've been through NG tube feeding, but this would take like, a year. I probably wouldn't survive the period for it to be worthwhile. I've already lost 7 years of my life to this condition anyway. When I was in hospital for the tube feeding, I was abused for the full 5 weeks I was in there before being transferred out.

I'm sensitive/intolerant to virtually all of the weight gain supplements, and so the feed rate had to be quite slow to reduce this.

Removing my rectum and colon would be successful for me, as it is what is causing my problem - an autoimmunity within the rectum and colon.

I'm well aware of all risks etc. and with respect, all I'm asking this community is for any way I can bypass the weight issue, and somehow push the operation through.
 

crohnsinct

Well-known member
Oh sorry. I meant g tube. It’s a tube surgically put into the stomach and then you just hook the tube up to a pump that pumps the formula in throughout the day or night. It skips the whole drinking fiasco and my daughter found it much easier than the NG tube.
 
Oh sorry. I meant g tube. It’s a tube surgically put into the stomach and then you just hook the tube up to a pump that pumps the formula in throughout the day or night. It skips the whole drinking fiasco and my daughter found it much easier than the NG tube.
Ah right, like "PEG" feeding, that'd certainly be convenient. I actually wanted one years ago in case I happened to be in the exact position I'm in now lol, and was refused point blank.

Incidentally had an appointment with the surgeon again today, and it feels like a massive step forward - he's agreed to stick a stoma in me, but without going ahead with the proctocolectomy, pending a meeting with the anaesthetist. It would be a way to show how determined I am to get the full op done i.e. that I wouldn't have any regrets after it'd be too late to do so

He's also said that he'd be more willing to go forward with the operation, after my blood levels were more "normalised" - it wouldn't require a great deal of weight gain alongside this. This feels like a fantastic middle ground, and again, feels like a massive step forward. I gave a brief synopsis of my past history with being underweight, and seems to see how I've hoped he would (that I have the knowledge base and experience to gain weight properly) my obstacle is purely my condition stopping me.

I saw my doctor and nurse last month, and had bloods done - they rang me back just to give me an update and all they mentioned was that my Na levels were low. I explained this to the surgeon today, that I've had a bladder problem for over 10 years now, so I need to drink shitloads so I don't pass out, thus diluting the sodium down. Retrospectively, I would've mentioned that I don't have a lot of salt in my diet just by my palate alone, but nevertheless it feels like a successful day

Best wishes all ❤
 

crohnsinct

Well-known member
Oh that sounds great. Incidentally, my daughter's surgery was yesterday and she has a temporary ileostomy. They are hoping that resting the colon and switching to a new med will avoid making this permanent but the likelihood is it will be.

Just a little warning to file away. People with ileoostomies have a harder time staying hydrated so if you do end up getting the temporary diversion and hydration has been an issue you are going to have a bigger battle on your hands but you seem super motivated and seem to understand your body so I am sure you will do what needs to be done. They will also teach you all the tips and tricks.
 
Best wishes to your daughter, fingers crossed she gets her optimum outcome

II'm generally fine staying hydrated as it is - the problems only arise when psychs try to stick their nose in and start creating ridiculous fantasies around my intake etc. without keeping it as one perfectly reasonable cause and effect genuine condition. Like... I drink loads to avoid eating; go to the toilet a million times a day to throw my guts up and God knows what else. Hearing the "liquid sounds" through the door, standing there watching me, and seeing my incontinence pads isn't enough.
 
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