Not feeling great.. what to do!?

Thanks for all your responses. ddd45.. I'm trying to move around, stretch etc and do all the things you suggest.

I have more output and I've been trying to eat a bit to see what happens, but it seems like it's working REALLY hard to get through. My stomach sounds like a gurgling washing machine.

I have literally lost 3 lbs in 4 days.. and feel weak and wiped out.

Rosemary, my surgeon isn't an 'adhesion specialist'. is there such a thing? but he's one of the best lapro guys in our area. I know he won't want to operate unless I'm on my deathbed.. but the alternative (staying like this for much longer) isn't appealing either.

You're right Windy.. things have been changing for a while now and I've been working with a dietician to try and figure out my food. Some days I wake up but don't eat until lunchtime as feel quite bloated and full. I've been eliminating more and more things as things get 'obstructed' and I dont' feel good the next day. Even crisps (potato chips) cause a problem.

I feel a little brighter this morning, so I'm hoping things will free up and I'll start to improve. Thanks again.. you guys are the best

clear passages is the Wurn technique of physical therapy that supposedly breaks up adhesions. Who knows but maybe worth a try. Good luck. Rosemary

Hi Sarah

I'm in the UK too in Cheshire. I've just had my ileostomy reversed (3 weeks ago) and although I had my ileo for different reasons then you, (my bowel was 'strangled' by mesh from previous prolaspse surgery which caused gangrene and I was very close to death) but I did have several occasions where I had blockages. One was a complete blockage after eating steak (bad move!) but the others were what I would call partial.

I'm no expert, but I'm thinking that the fact you feel so awful would suggest that even if you don't have a full blown blockage, there is something wrong. I always think that if you feel cold and sick that your body is 'fighting' something.

Of course I don't want to frighten you and I'm not saying that it means that something awful is going on, but I do think your consultant needs to take you very seriously tomorrow.

I would think that the fact you've been gradually been feeling more bloated with less of an appetite and also able to eat a less varied diet suggests that something is not 100%. That said, you may find that he is able to rectify things for you relatively simply.

I would be very firm with him that even without this recent episode, you really need to get to the bottom of your symptoms and think you should in fact INSIST upon a CT scan. The day after my reversal my bowel was particularly unhappy and I developed an Ileus (my bowel effectively shut itself down) and to be sure that it wasn't the join in my bowel where I'd had the reversal they sent me for an immediate CT scan to be sure. By using a canular into your vein, they inject a special dye into you which they can detect on the CT. They were able to tell what was happpening and maybe this is something that they could do for you too. I know that when I had my blockages, partial or otherwise, the last thing I wanted would be to drink several glasses of that awful aniseed drink!

I really hope that you get some answers tomorrow and that you are feeling brighter soon. Keep your chin up and I'm sure you'll be back to fitness soon.

xxx

Sarah, so sorry that you feel so awful. I don't know so much about the specific tests -- do know that you need to be cautious w/the CT..... no good if we're all going to just end up w/cancer from all the ab CT's....so if it's possible to get info from other tests, makes sense to do them first. (I was trying to count how many CT's I've had -- at least 8).

This does sound different from Rosemary's though -- her issues were at the stoma, not w/her stomach sounding so awful etc. Definitely sounds like the low residue food is a good idea.

Hope they can figure it out and give you some relief. Thinking of you.

No idea on what it could be or not be, and I know that feeling of getting better when you're about to see a doctor. But it is a good thing that you're better! Hope he trusts you enough to take what you're saying seriously even if the worst is over.

Keep us posted.

Yes, this forum is amazing!

One way to think about "low residue" is to eat foods that don't need cutting - like mashed potatoes and applesauce. And then if you are eating foods that  do need cutting, make sure that you can cut it with a fork. For example if you are eating a carrot, make sure it is so way overcooked that you can cut it with your fork. If its raw or just cooked a bit and you need a knife to cut it, don't eat it.

And try exercise. I truly believe it helps break up adhesions. Pilates, yoga. Just start slowly slowly slowly.

What is a failed j- pouch?

My husband and I were mentored about the j-pouch from a sweet guy who has had one for 20+ years at the time....my husband was hoping for a shot at a jpouch and his surgeon definitely scheduled only his surgery for that day with the hope and anticipation of being able to perform same. We knew the risks and chances that once he got in there it might not happen. Well that was the case and we know from all the indepth surgical operative notes and also the surgeon's info after the surgery it couldn't happen. He was so sure that even if he was able to somehow do it, it probably would not have been viable and then he would need surgery to undo it and create another ileostomy. Not to mention another surgery on top of the 2nd surgery needed for a jpouch in 3-4 months after the initial one and everything else that goes along with it when it is not successful.

I was more disappointed than my husband initially and was quite angry with God that day until I realized how lucky I was that he even survived the 7 1/2 hr surgical ordeal. I just had a total meltdown 2-3 hrs into the surgery and was happy our hotel was attached to the hospital so I could just go back to the room and be hysterical. Later in the day when the Dr met with me right after the surgery in a private room and explained and drew everything on a blackboard (he was exhausted!) I was able to get a better grasp on the situation.

My husband was not upset...he just said..."well that's too bad but I know Dr. M. did all that he could do"

In retrospect for HIM and his age, our personal circumstances and all things combined this is not only the way it is but the way it needed to be. We found peace and acceptance of it and chose to move on. Luckily for the moment things are going well and are quite predictable. I know that this may not always be the case but I refuse to worry and dwell on what may happen. I definitely keep my eyes and ears open and absorb a lot of information so that I am aware since he doesn't come on these forums.

Sharing all our info, experiences...good bad or indifferent is very important. I just wish there was a "magic wand" that could help some of you who are going through rough times.

I truly appreciate all of you and the sharing of information.