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pewpewlasers

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pewpewlasers Rookie
pewpewlasers
Posted

I saw the ER doc last night after calling my Mom crying that I had an "accident" for the first time. Boy, I am still embaressed about that. She insisted that I go to the hospital because of my other symptoms and that my insurance is giving me a hard time and I'm in the process of getting it reinstated. So...that means that I can't see the GI right now. I had to cancel my follow up appointment from my endoscopy.

Anyways, bad new is is that they think I have Crohn's and my cat scan showed some problems. A kidney tube is diated with no signs of stones, I have bowel retention which they said is really not good since I don't have any constipation. I just get regular poops and D. They said there was something else but I was pretty out of it and don't remember.

I am pretty nervous because Crohn's has been mentioned to be before and the doc even counseled me about it. He said I need the colonoscopy to confirm but he said he is pretty sure it's crohn's or colitis.

I guess that would explain these flare ups I get that have nothing to do with eating gluten or my stomach, just my bowels.

I'm worried and scared and afraid I am going to poop myself again. My bowels sound like people walking in a creaky old house and it's embarassing that people can hear it.

Ugh, it feels like its never ending.

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soulcurrent Explorer
soulcurrent
Posted

I wish I could offer some encouraging words for you but all I have is a bit of sympathy on the scared and embarrassed part.

ravenwoodglass Mentor
ravenwoodglass
Posted

Have you started a trial of the gluten-free diet yet? That should have been done the day you had your endo, you don't need to wait on the results, your body will give them to you anyway IMHO.

nu-to-no-glu Apprentice
nu-to-no-glu
Posted

I wanted to encourage what Ravenwood said. Having been through a similar situation, I understand your feelings :( I suffered many many embarassing "accidents" before introducing the gluten free lifestyle. I was also mis-diagnosed as having Crohn's from inflammation found during a colonoscopy. I spent a year on steroids, with no relief from accidents. It hasn't been until the last month eating gluten free that I have found complete relief.The good news is, you don't need insurance to change your diet. You have to give it time to notice results and ask lots of questions here! If you don't see relief, than at least you know you've given it a try! Even the biopsy results can be a false-negative. I hope this helps. Don't feel embarassed, we're all here to help and support! :). (Oh, and sometimes, I thought my flare ups were unrelated to foods, too, but turns out, it was just delayed reactions).

GFinDC Veteran
GFinDC
Posted

I've read that some people with Crohn's follow the gluten-free/CF diet also. Some of them say it helps them, not all though. So, may as well give it a try.

pewpewlasers Rookie
pewpewlasers
Posted
  • Author

The problem is, is that after being gluten free for over a year I started having symptoms unrelated to eating gluten. I know when I've been glutened because it hurts in my stomach. Now I have really bad pains in my lower abdominal area and other unpleasant symptoms. My GI doc did the endoscopy to check to see if there was any damage but I told him I have been gluten free for a long time and I honestly think he is looking in the wrong place.

Having this ct scan confirmed that something is going on in my bowels and I need a colonoscopy.

At least the ct scan wasn't another dead end. I don't know the results of the endoscopy biopsies yet but my stomach looked good except one of the valves isn't working the way it should. ( He didn't tell me if it was the upper or lower sphincter)

I didn't expect them to find anything with the endoscopy because I've been gluten free. There's something else going on and from what I've been told it doesn't sound fun. :P

I'm still sticking with the gluten-free diet unless my doc tells me otherwise (with good reason of course). I don't want anymore symptoms on top of what I have now. :P

Korwyn Explorer
Korwyn
Posted
The problem is, is that after being gluten free for over a year I started having symptoms unrelated to eating gluten. I know when I've been glutened because it hurts in my stomach. Now I have really bad pains in my lower abdominal area and other unpleasant symptoms. My GI doc did the endoscopy to check to see if there was any damage but I told him I have been gluten free for a long time...

Hi pewpew,

Have you done a completely strict elimination diet, dropping back to the most minimal diet you can, possibly a BRA type diet (Bananas, Rice (or gluten-free Oats), and applesauce diet)?

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pewpewlasers Rookie
pewpewlasers
Posted
  • Author
Hi pewpew,

Have you done a completely strict elimination diet, dropping back to the most minimal diet you can, possibly a BRA type diet (Bananas, Rice (or gluten-free Oats), and applesauce diet)?

No, but the er doc I saw said that I should try it. I think it's a good idea. I have a problem with eating large meals. (Larger than a few bites at a time) I've had a huge loss of appetite recently, more so after I had the endoscopy. Maybe I will start tomorrow and see how it goes.

ravenwoodglass Mentor
ravenwoodglass
Posted
No, but the er doc I saw said that I should try it. I think it's a good idea. I have a problem with eating large meals. (Larger than a few bites at a time) I've had a huge loss of appetite recently, more so after I had the endoscopy. Maybe I will start tomorrow and see how it goes.

Did they put you on any meds after the endo? If they did were those meds double checked to make sure they were gluten free? I had a severe reaction to a med after one endo I had which basically kept me from digesting anything to the extent that I needed pancreatic enzymes for a month or so to heal and be able to digest any food. The reaction also seemed to trigger or make worse my soy intolerance. I now need to be just as careful about soy as I do gluten. I really learned my lesson with that one and now not only ask the pharmacist but also call the company to double check.

If you can find an allergist who can assist you with an elimination diet that can be quite helpful. Do ask over the phone when you call the offices because most don't deal with anything other than true allergies. It did take a few calls for me to find one and I had to drive about 30 minutes to go to the one I found but he literally saved my life.

pewpewlasers Rookie
pewpewlasers
Posted
  • Author
Did they put you on any meds after the endo? If they did were those meds double checked to make sure they were gluten free? I had a severe reaction to a med after one endo I had which basically kept me from digesting anything to the extent that I needed pancreatic enzymes for a month or so to heal and be able to digest any food. The reaction also seemed to trigger or make worse my soy intolerance. I now need to be just as careful about soy as I do gluten. I really learned my lesson with that one and now not only ask the pharmacist but also call the company to double check.

If you can find an allergist who can assist you with an elimination diet that can be quite helpful. Do ask over the phone when you call the offices because most don't deal with anything other than true allergies. It did take a few calls for me to find one and I had to drive about 30 minutes to go to the one I found but he literally saved my life.

The only meds I got was the one that made me sleep during the procedure and then liquid gas meds for after. I had terrible gas pains after the procedure that the gas drops did not help.

I've been thinking of seeing an allergist to help and find what foods are bothering me because it seems to vary. Some foods just give me headaches, some make my stomach feel like I'm being stabbed over and over, and some affect my bowels more.

During my er visit I had a horrible reaction to the anti-nausea medicine they gave me. I think it was Compazine. They gave me benedryl at the same time, but within five minutes I couldn't keep my eyes straight and I started getting really fidgity, loopy, extreme dry mouth, couldn't think straight, slurring speech, felt like I was freezing cold and overall extremely uncomfortable. It scared the crap out of me. Then with the iodine during the ct scan I started to have a reaction. Not as severe as the Compazine but I started sneezing and my sinuses got stuffed up suddenly and my throat and tounge started itching.

Overall it was just another miserable experiance to add to my list.

I'm going to start my basic diet today of rice, bananas, and applesauce. My bowels are still going crazy and I can't see the doc until I get my insurance back. I asked to do a cash pay but they said I can't because I am waiting for state health insurance and for some reason can't accept cash from me with my application is pending.

This is the most frustrating experience of my life. The state is giving me hell for my insurance all because they got a piece of returned mail and cancelled my coverage and have made me jump through so many hoops to try and get it back. In the meantime, I am sick and scared. Evenmore so after my ct scan and the remarks of the er doc.

Question for everyone if you happen to know. I haven't been able to find much information on bowel retention, but I was curious if having bowel retention puts me at risk for a bowel obstruction.

ravenwoodglass Mentor
ravenwoodglass
Posted
I'm going to start my basic diet today of rice, bananas, and applesauce. My bowels are still going crazy and I can't see the doc until I get my insurance back. I asked to do a cash pay but they said I can't because I am waiting for state health insurance and for some reason can't accept cash from me with my application is pending.

I think that plan is a good one. If you keep that up more than a day or so do add in perhaps some chicken that has been broiled plain as you do need some protein. After your tummy calms down a bit then add stuff back in one item at a time for 4 or 5 days to see if you will tolerate. The first thing I would add back after the chicken would be a well cooked green veggie to try and keep your nutrient levels up. I hope you are feeling better soon.

One thing you may want to check is to see if the insurance will pay retroactively since you are actively in the process of reinstating it. It won't hurt to ask and you never know.

pewpewlasers Rookie
pewpewlasers
Posted
  • Author

Got my insurance back today! Good thing too. Got my gastro appointment scheduled for Thursday. The biopsy from my endoscopy three weeks ago came back abnormal. No signs of celiac (no shocker there, I've been on a gluten free diet for so long now). I have a hiatal hernia though. I wonder if he'll put me on a gluten challenge now or just do the colonoscopy for Crohn's first.

I've been trying the banana, rice, and applesauce diet but my body wants nothing to do with food. I eat and my stomach becomes painfully bloated and my intestines start protesting. I'm trying to drink water but the pains come back. I seem okay when I'm not eating, the minute I eat something, my whole abdomen starts to hurt. Stomach, intestines, sides and all. Even my back was hurting after a few bites of rice yesterday.

I've lost five pounds this week because of all this crap that's going on. I can't wait until I can tolerate something. I feel so tired and weak.

I appreciate all the advice and support. This is a really hard time for me. :(

ravenwoodglass Mentor
ravenwoodglass
Posted
Got my insurance back today! Good thing too. Got my gastro appointment scheduled for Thursday. The biopsy from my endoscopy three weeks ago came back abnormal. No signs of celiac (no shocker there, I've been on a gluten free diet for so long now). I have a hiatal hernia though. I wonder if he'll put me on a gluten challenge now or just do the colonoscopy for Crohn's first.

I've been trying the banana, rice, and applesauce diet but my body wants nothing to do with food. I eat and my stomach becomes painfully bloated and my intestines start protesting. I'm trying to drink water but the pains come back. I seem okay when I'm not eating, the minute I eat something, my whole abdomen starts to hurt. Stomach, intestines, sides and all. Even my back was hurting after a few bites of rice yesterday.

I've lost five pounds this week because of all this crap that's going on. I can't wait until I can tolerate something. I feel so tired and weak.

I appreciate all the advice and support. This is a really hard time for me. :(

I hope they are able to figure out what is going on soon. You could try some cream of buckwheat. That is very easy to digest and has a bit of protein also. If you have some on hand maybe make it the way the say for a baby and just do a spoonful at a time and see how it goes. The fact you can't eat or even drink concerns me. Does the doctor know you are unable to eat anything and how long this has been going on? If not please call them ASAP and ask them if they can somehow fit you in sooner. If you can't even drink liquids without pain you may be dehydrated also which will increase the feeling of weakness.

I wish there was something I could do to be more helpful. Keep us posted.

pewpewlasers Rookie
pewpewlasers
Posted
  • Author

The doctor doesn't know that I can't eat or drink. :( But they fit me in as soon as they could. I haven't been able to eat anything since Saturday. That was the last real meal I had, and it was gluten free pizza. I paid for it so bad afterwards too. The pain was terrible. Since Saturday I've had one banana, a few bites of rice here and there and yesterday just a little bit of applesauce and chicken broth. I was starving and just broke down and dealt with the pain from just that little bit of food last night. I drank a cup of water last night as well and my stomach got painfully bloated.

I'm lossing weight pretty fast, but I'm sure I can hold out until tomorrow afternoon when I see the doc.

Jestgar Rising Star
Jestgar
Posted

Try watered down gatorade or flat seven up or ginger ale (not diet) instead of water. The little bit of sugar in them helps your stomach absorb things easier.

Maybe honey-water if you're avoiding chemicals.

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