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6 replies

So scared!

A akteacherMember
I've been going to Dr. Shen for treatment of fistulas in my jpouch for almost 2 years. He has been using bear claw clamps to try to close them. I have been going to CC every 6 months for pouchoscopy/clamps with no complications but only minimal success. This past July I had my pouchoscopy/clamps done, went back to LA to recover & ending up in the ER for major inflammation/swelling/blockage in the pouch. During the hospitalization the GI dr did a scope & said the clamps were embedded in the wall of the pouch & there was so much inflammation/swelling it was blocking the opening into the pouch. He contacted Dr. Shen who in turn told me to email him when I was discharged.
I was discharged yesterday, I emailed Dr. Shen who emailed me back to say I need to look at surgical options now. I am terrified I am going to lose the pouch to a permanent iliostomy since I've had one repair for fistulas (by Dr. Fazio) & that was an 8 hour surgery where Dr. Fazio almost gave up on before finally repairing the fistulas. I have seen Dr. Remzi (2 years ago) & he says I have an 80/20 chance of keeping the pouch or going to a permanent iliostomy....no guarantees once he's doing surgery.
I'm home but when I left the hospital the GI dr said I have to be very careful of what I eat or another blockage will occur. I was on full liquids in the hospital & have pretty much stuck with that. The dr said I could eat anything that could be small enough/cut up enough to go thru a straw! He says that's about the size of the opening into the pouch. I'm petrified to eat!
Tried to get an appt with Dr. Remzi (when I was at CC in July) but was told he had nothing until November. I don't think I can wait until November now. I'm scared, hungry, angry about losing pouch...I teach & had to take this school year off bc everything is so up in the air regarding surgery, recovery time, adjusting to iliostomy, whether temp or permanent!
I know this is long but would appreciate if others have gone thru losing pouch - success with keeping it after repairs, maybe a redo - could just help me to feel better about it all! TIA
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skn69skn69Member
Hi Akteacher,
I am so sorry that you are going through all of this...it sucks.
I have had numerous surgeries on my k pouch for various problems...so I understand the fear, anger and frustration.
As a k poucher (same pouch but different exit strategy...we have a stoma that you need to put a tube into so that the 'stuff' can pour out...which is somewhat like the idea of things going through a straw.
If you have a blender or hand held blender then you can eat pretty much everything...you just need to blend the stuff.
I make a lot of salads with small, chopped up veggies that I blend the next day into a cold soup...I eat it with grilled fish, chicken breast or ground beef...makes for a nice meal and it is "straw friendly".
Well cooked or steamed veggies that reach the "slightly mushy" stage are good too.
Fruit smoothies are great foods too. Almost any fruits can be thrown into the blender and turned into a smoothie...just avoid pineapple because it has a lot of fiber that can clog you up...avoid skins too (apple, potato or any other skins that are highly fiberous).
If things don't go the way you hope there are always other possible options like the k pouch and the BCIR...they are viable solutions if your surgeon tell you that you have enough small intestine to work with or if he can reuse all or part of your pouch...
You might wish to bring the subject up with him and ask if he has heard of them or even if he does them.
Hang in there...I knows that this is a really hard time.
Sharon
MicheladelfinaTXMicheladelfinaTXMember
Wow...that's a lot to handle and I'm so sorry you're having to go through all this! I don't have much advice on the surgical portion of your post, but you mentioned having to get most of your food through a straw, which is tough. For times when I'm flaring or just out of the hospital, I have both a Vitamix (sort of like a super powered blender) and a juicer that I use to pulverize fruits and veggies so I can still get them into my diet. Not sure if this is an option; the vitamix is pretty pricey up front, but you can get a basic juicer for anywhere from $60 to $150 and it will really help you to get some variety into your diet given all the restrictions you currently have. My juicer is from Hamilton Beach and was around $80 I think. I drink the juices straight or add them to smoothies in the vitamix just to mix things up. Also, for protein powders, Arbonne makes a really good one that you can add to smoothies for some extra sustenance and calories. Hope this helps!
A akteacherMember
Thanks to you both! I have started adding some soft foods to my diet. Nothing with seeds, skins, etc. I've been eating a lot of cream of wheat, mashed potatoes, soups and even tried some very well cooked chicken. Things seem to be going "down & out" with no problems. Of course, I'm still on a lot of meds to get things back under control (Cipro, Flagyl, Prednisone) so I'm sure that helping. I tried some ground up hamburger tonight & so far so good.
I'm in the process of getting things scheduled with Dr. Shen & Dr. Remzi but that is moving slow since I'm not actually in Cleveland & trying to get appointments, airfare, housing is a nightmare! I'm sure hoping this Apollo endostitch will be an option for me but that hasn't been determined yet. I'm praying & hoping it will be an option, tho!
Thanks again for your responses. It did help to calm me & allow me options to think about.
TE MarieTE MarieMember
I'd like to add a second nod on the Vitamix or a really good blender will help pulverize fruits and veggies. I use a hypoallergenic protein powder that supplies 43% of the daily protein in one scoop, called PlantFusion. I make fruit smoothies with it. I also eat a lot of Greek yogurt and they supply protein as well. Hopefully this will help you until you find out what's going on.

Since your case has developed into more of an emergency I would think that you wouldn't have to wait until November to see your surgeon. I wish you well and trust that you are in capable hands.
Please let us know how you are doing. Take care ...
PouchomarxPouchomarxMember
Shen tried the endostitch on my tip of j pouch leak and it failed big time. it was not flexible enough for the pouch and basically put another hole in my pouch. Had surgeon there just in case it didnt work, so had surgry to fix the leak. Saw Shen yesterday for a scope and he told me the surgery didnt work either, hole is still there.. I am mad,frustrated,depressed, and all the above. He is going to talk to my surgeon. He said he may try the biggest bear claw available and give it one last chance to close it. No more surgery for me..I hate the bag, but may just have to accept it.

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