Anticipating my first resection surgery...

[JessicaGrace24]

Hi All,

As you know, I've been having trouble off and on with bowel obstructions due to stricturing. At first they thought I only had one fibrotic stricture and that the other two problem areas were mainly inflammation. However, after my recent MRI it looks like I have two significant strictures in the distal to terminal ileum instead of one. Thankfully my proximal issues in the higher ileum and jejunum seem to be better. In any case between the two strictures, I will probably be getting approximately 25-30 cm resected on June 24th. As this will be my first surgery I am wondering what to expect in terms of recovery. Thanks in advance and hope you are all well!

 

[Delta_hippo]

Hello
My recovery was slow but I had emergency open surgery not planned.

If they can do laparoscopic not open you’ll recover quicker.

My advice for hospital is peppermint tea and ginger biscuits as the anaesthetic can leave you feeling pretty sick. Audiobook as you may not be up to reading. Eye mask and ear plugs as wards are noisy.

If you have a loved one who can sneak you in some smoothies then go for it because hospital food is shocking (not helped by point 1, nausea)

Once home REST and no heavy lifting and you may not be insured to drive for six weeks. Stock up on soft low fibre food - mashed potatoes, scrambled eggs, custard etc etc. You might lose some weight while in hospital. I ate loads of white bread sandwiches with ham, cheese, butter, full fat mayo and avocado. A good multi vitamin post op to help heal but careful pre op as some vitamins thin the blood.
Longer term, Pilates (with a physio).
Hope it goes well.

 

[JessicaGrace24]

@Delta_hippo thanks so much for all the suggestions! Yes, my mom makes a really good dairy free coconut milk pudding that I lived off of after my last obstruction as well as scrambled eggs and mashed carrots and potatoes. I am hoping to have my mom bring me these things as well as smoothies while I am in because as you say, hospital food is not so great. I also have a dairy free version of an ensure type drink that I will bring with me (the whey and soy proteins in ensure is not my friend.) My surgery is anticipated to be laparoscopic which should help my recovery. I will make sure to bring some peppermint tea with me! Will keep you posted on how it goes.

 

[JessicaGrace24]

Hi All! So far recovery seems to be going ok. Unfortunately they had to take my ileal cecal valve. I lost 10 cm of bowel in that area (TI, ileal cecal valce and cecum) as well as 25 cm higher up in the ileum. I am having about 4-7 not fully formed, mushy stools a day (around a 6 on the bristol chart) very occasionally I would get hints of a #5 on the bristol chart. I am just wondering if my stools will ever fully form up again or if, since I am missing my valve, this is something I will just have to deal with long term. So far I am not experiencing any other side effects (bloating, excessive gas etc).

 

[Delta_hippo]

Glad you are recovering well. Might be worth asking about vitamin b12 - I lost a bit of my small intestine and the doctor told me can no longer absorb b12 so would have to have shots. Local surgery then said you have to run really low on b12 before you can get injections! So got a spray on Amazon (my kind organics) and it put my levels back up. Glad things are going well and hopefully the D will settle down

 

[JessicaGrace24]

Thanks for the kind words @Delta_hippo! Since stopping the antibiotics my stools are finally trending towards normal! (almost a 4 on the bristol chart!!!) and only 3-5 times a day of course sometimes I still get some looser movements if my healing intestines get irritated by something but every day is getting better so I think this should settle down as the swelling at my anastomosis sites continues to go down and heal. For now my GI said the dissovable sublingual b12 tablets should still be ok as they enter the bloodstream more immediatly than swallowing a pill but of course we will keep an eye on my levels and see if we need to move to injections in the future. Energy is getting better and better so I am hoping this means a longer remission is in my future! Again, thanks for the support and prayers. I am so grateful.

 

[Guerrero]

Hi Jessica, thanks for sharing your experience and I hope you keep doing well

 

[JessicaGrace24]

Hi All! Just wanted to share that I just did my first fecal cal since surgery and it came back at 25! This is the first time ever since diagnosis that I've had a normal fecal cal and am beyond grateful to finally be in remission. I know that surgery isn't always successful for everyone but am very grateful for the outcome it gave me. Unfortunately I am dealing with severe iron deficiency (not anemia- my ferritin is extremely low (4) but my hemoglobin is normal) and have had two abnormal ECGs. I meet with my GP tomorrow but prayers that they would find answers and solutions would be great. I have something called Turner Syndrome which can lead to heart issues. If it isn't one health problem it seems I deal with another!

 

[Guerrero]

For ferritin deficiency, without an iron infusion it takes a while to get back to normal levels, so be patient on this, or ask your gi if you can get an infusion.

 

[JessicaGrace24]

Just wanted to give an update! I had my post-op f/u colonoscopy on Wednesday and I am happy to say that I am in endoscopic remission! No signs of scarring or narrowing yet at my anastomosis site. Very, very happy.

 

[Delta_hippo]

Fantastic news, that’s great to hear

 

[Lisa]

Awesome news! How has your anemia been - have your ferritin levels increased or did you end up having to go with the iron infusion route?

 

[JessicaGrace24]

I actually had an anaphylactic reaction to my first iron infusion (very scary!) so just continued with oral supplements but only three times a week since I am even slightly allergic to the oral supplements. I also made sure to increase the amount of red meat, hummus, eggs, spinach etc in my diet and was able to get my ferritin up very easily that way and it has been good since January. I get it checked again next month but my GI thinks it was just due to blood loss during surgery and post surgical inflammation rather than ongoing trouble with absorption.