I'm back and I need some friendly advice

Hi All,

I've been knocking about on these forums for a good number of years now, when I was in my early 20s and living in the UK I wanted weightloss surgery but was not considered big enough (although I met the NICE guidance my BMI is 41).

Then at 25/26 I moved to Switzerland and was referred for weight loss surgery here, I was pretty much all set to have a VSG, I had the surgeon, the insurance approval, I passed the psych exam... and then I vomited 1/2 pint of blood and many many hospital appointments later was diagnosed with Autoimmune hepatitis (my body is rejecting my own liver). 

I'm now 29, the liver disease is slowly progressing and my doctors tell me that my stomach, intestines and osephogus have lots of weak varicose veins from the disease, my spleen is huge and pressing on my stomach. I have fluid retention and am in a general poor state.

I've been told that if I need a transplant in the future I have to be of "normal" weight, so I was referred back to the same doctor for wls. I saw her this morning, she is very keen for me to have it, but is unsure if I would be able to have the VSG because of my weak stomach. So they will also look at the gastric bypass option. I have another appointment in 4 weeks.

I don't know how I feel. When I started I just wanted to be thin, and now I just want to be healthy. The risk for wls is even higher for me because of the veins and how low my blood count is (I have both anemia and low platelets - clotting factors-). Also I'm in a wonderful relationship and we wanted to start trying for children next year.

If I have this surgery I would have to push back a baby 2 years. I have no idea what the bigger sacrifice and risk is. I never wanted a bypass, a VSG at least gives me the chance of having a normalish life in years down the road.

Plus the skin issue, I fit my body now and I at least think I look ok, but if I have this will I be left with ugly skin, as well as a failing liver and no baby?

I just don't know what I want. Have any of you had similar situations, has it turned out ok? I'm too bogged down in the risks at the moment to be able to see this as a good thing. Tell me all your successes please?

Why do you think that RNY will not provide you with a "normalish life" down the road?  I had RNY 5 years ago and my life is WONDERFUL!   I am healthy and active.  I have to watch what I eat because I have reactive hypoglycemia and I dump on sugars and excess processed carbs, but only 30% of RNY patients have that problem.  With any weight loss surgery you will have to take vitamins forever.  I weigh myself daily so I can see weight fluctuations and patterns.  I didn't resort to WLS to gain the weight back.  If I see a re-gain, I do something about it immediately.  Other than that I have no issues.  I'm off all medications and feel better l than I have for YEARS.

As for the skin, that depends on your genes and how long you have been obese.  You are young and have a good chance that your skin will look OK.  Skin does not stretch, it grows to cover the extra fat.  You can't un-grow skin.  Many WLS patients save money for future plastic surgery.  I would rather have the extra skin than the fat that made me unhealthy.  

Having a baby is hard work and requires you to give 100% of yourself to that child emotionally and physically.  In your condition, do you think you are able to give 100%?  It is more important for you to get healthy right now.  You are young.  Two years, in the scheme of things, is a drop in the bucket.  Your baby deserves a mom that can give 100% .  You should have the surgery your doctor recommends, work hard at getting healthy and staying healthy, spend time learning about your new digestive system and getting the WLS rules down pat, and then start your family. 

 Best wishes!!!

Thanks for replying Rocky :)

I always thought that because the VSG does not change the digestive route eventually you can eat most foods but in small portions, but with the bypass you will always have to avoid sugar. Not that I want a quick fix then to return to eating junk food but I would hope to use the 80/20 rule in maintenance (a long way off), I thought with bypass its no sugar forever? I'm sorry for my ignorance, I hope I haven't offended you.

In regards to a baby yes my partner and I feel ready psychologically, I have enough energy to run around and have no issues with my 5 year old nephew, I don't think my illness would mean I would be a bad mother. The risk is mostly regarding if my body could support a pregnancy (and within the support network I am in it appears plenty of AIH mums manage to support a pregnancy). My illness is chronic so the best I can hope for is remission, in 2 years maybe my body could no longer support a pregnancy I just don't know, but all your points are good and I certainly need to discuss further with my partner and doctors.

Thank you very much for sharing your positive experiences :)

RNYers do not have to avoid all sugar forever.  Only about 30% of us dump on too much sugar (and how much sugar it takes to cause someone to experience "dumping" varies greatly... For some it is relatively little sugar while for others (like me) it takes a LOT to cause a negative reaction). Most RNYers can eat small amounts of almost anything.

I guess I'm a little surprised that your primary concern with having Roux-en-Y is how much, and what, you could eat down the line. I would expect that, given your medical history, you (and, more importantly, your doctor!) would be much more concerned about 1) the lack of vitamin absorption -- and, for some drugs, lack of medication absorption -- with the RNY (you already have iron issues, and iron is one of the vitamins that RNYers often have trouble with), and 2) how it would affect your health if you turned out to be one of the people who developed reactive hypoglycemia (RH) or a propensity for kidney stones (neither of which affect VSGers).

I'm not sure why a pouch might be better than a sleeve because of the physical condition of your stomach (I'm not questioning that, I'm just qualifying my upcoming statement), but if it were me, if the surgeon didn't believe that my stomach could physically support a sleeve, I would be asking if the surgeon could to a pouch as they would with a RNY, but NOT do the RNY's bypass (and therefore not have any lack of vitamin or medication absorption or have the risk of RH).

Good luck. 

Lora

Hi Lora,

Thanks for responding :) I suppose my priorities seem skewed, I had the initial appointment yesterday morning and hadn't really thought everything through logically I was posting emotionally. 

My concern to have a "normal life" comes from how much my current illness affects me for example, I have to take diuretics every day and I plan my life around those pills since they cause me to need the toilet every 10/15 minutes for 4-6 hours. This means I can't go on long road trips or go to festivals or anywhere with long queues for a loo, I can't do a lot of things my friends can.

I don't drink alcohol and going out to dinner is one of the few social activities I can participate in, its difficult to imagine living with another restriction, I'm thinking a lot more about how quality of life will be affected and if the weightloss and possibility of transplant is better than the life I have now. Transplant is only a possible eventuality, the wls is a step to aid a theoretical event in the future, thanks for helping me consider the medical aspects as well. 

Your points about absorption are really valid and hadn't occurred to me, I've written the questions down to ask in 4 weeks. All the information sheets I was given from the hospital are in German (they did not have an English version) and so I have to get my boyfriend to translate them, I'll research the side effects you've listed.

The state of my stomach will be assessed with a gastroscopy, I'm hoping its good enough for a sleeve but again your point about the pouch without the bypass is something I should ask. I'm just starting to realise how much I don't know. 

Thanks for giving me so much to think about its really helpful

Personally, I'm much happier with my slightly saggy skin than  the blubber filled rolls I had before. I, too, am off all meds and both my surgeon and my pcp say I'm healthy. I'm very happy I had rny instead of the sleeve. It was a medical necessity.  Your situation is very specific. I'd make sure you do what the doctors feel will give you the best hope for long term health. 

Hi Poodlemac, thanks for the response! 

These conversations are really important for me to make sure I explore all my feelings and go into this journey with my eyes open and assured I've chosen the best path. If I do ahead I have to be completely ready. I'm happy to hear about the positive experience you've had :)

It sounds like being pregnant now would be life threatening for the baby AND you. Get healthy first.

I am just one year out from surgery and I do feel I eat normal... smaller portions yes, but normal. Do I avoid desserts- yes, do I occasionally like on my birthday last weekend have a few bites, yes. But I went out 2 nights in a row for my Birthday, so one night a few bites of cake, next night berries with whipped cream. This would be true with VSG as well. You might be able to eat more sugar-- but if you want to keep the weight off, why would you?

With all your medical concerns, I would trust my Surgeon's advice. If I didn't trust his advice I would ask why am I having him do the surgery. Good Luck!

Hi Nymom, 

Its good to hear you can still indulge once in a while, I completely understand that this is a change for life, I explained in another response (which I posted about 30 seconds ago) why I'm so concerned about preserving some semblance of my current eating habits. You're right there is no point in having surgery if I'm not willing to commit, and that's the main reason I am posting here about this, I'm trying to work out if I really have the determination and will to accept and embrace the changes after wls.

In all honesty I don't know, and before I know and am prepared for the consequences I won't put my body through the procedure or waste everyone's time. I haven't met the surgeon yet the consultation I had yesterday was with another doctor, she would be my pcp for this but she would not do the actual surgery. 

My liver consultant and surgeon will definitely have to work together and I need to ask for both their expertise, unfortunately my disease is rare, we don't even have a specific charity, my doctor has only seen one other case and a different subtype to me. There is no knowing if weight loss will help my liver (in likelihood it won't) the only positive is to have me at the correct weight to make me eligible for transplant should the need arise.