Good morning 🌞 

Hopefully you soon do well. Onions and garlic are natural sulfites and you may be sensitive to them, even the slightest bit sends me into huge issues with bloating, distention and some blockage.

I have found the yogurt Oui, to be very easily digested , also scrabbled eggs and my daily meal of turkey.

I must do low fiber always. Do hope the lactose intolerance is not permanent with you, it was just a short lasting , under a year with me.This all takes your body along time to adjust too, darn it🥴

You certainly need to eat , as the gas will just build up anyway and become awfully painful! Sometimes it just takes a good talking to your self and take that step.

Everyone out here is keeping you in our thoughts 👨‍👩‍👧‍👧 

Jan W

 

 

I've been suspecting it and now I finally found my thermometer. I have a temperature of 99.1. Just like before the surgeries. I don't know what to do now.

Everything else is OK I got an IV the other day and I'm trying my best to stay hydrated and eat regular small meals. I take my probiotics and do the Metamucil. The other day I wiped a little blood but it could be that I was at the end of my monthly cycle and it meant nothing. I cannot consult my surgeon anymore I would probably have to call my GI. But does it warrant a call? 

I know and I'm not calling it a fever but a temperature. I know it's low but that's how it all started with my last flare.

Surgeon doesn't accept my insurance but GI does. My GI already did blood work and he told me he will do pouch scopes etc just the general follow up stuff

Thank you for your answers I will not call him yet 

I'm getting worse. Losing weight, at 114 pounds. My joints hurt after I made a wrong movement or stayed in one position for too long and the pain doesn't go away after days. Almost all my joints are affected now. I'm drinking my water and I'm not afraid to eat anymore but the cramps are really getting to me. I setup a bed in front of the bathroom so I can sleep there and go without having to go too far. I didn't wipe the blood anymore but my temperature is 99.1 every night and I made it a habit to even have water right before sleep which sucks because I have to get up at night to pee (and poop). I also drink water as soon as I wake up so I don't feel too exhausted but it doesn't help anymore. I add electrolytes to my water by the way so I no longer have leg cramps like I had them after the first and second surgery. I started adding it afterwards and the cramps went away completely. So I know I get enough electrolytes. My blood work looked good too. My stoma wound acted like it was closing last night but this morning I checked it and it was weeping again. I feel that it will never close even though it was cauterized. I had my surgery on 5/28. I don't know how much longer my body can take all this.

I have difficulty gaining weight but never an issue eating and especially staying hydrated.  I just got over my first bout of pouchitis and lost a couple of pounds, but gained it right back once the symptoms disappeared.  The best thing would be to get yourself back on track with food and fluids.  I had to be treated when I was hospitalized during a flare for dehydration and malnutrition and am doing everything I can to not deal with that again.  You may want to consider a nutritionist/dietitian if you haven’t already.  Good luck!

I'm glad you are posting and I have been wondering if, perhaps, you are not receiving sufficient post-surgery support. Surgeons and GI's can be fantastic at what they do, but can lack the time to "hear" things and provide support resources. It's so important not to get so run down that you are then digging out of a bigger hole.

I experienced this (long ago) and learned I had to have a strong voice....say what is wrong, what I need and ask for who could help provide the solutions. If I felt I was about to be sent off without some tools to start sorting things out, then the appointment was not over. Otherwise very valid problems can go unheard and dismissed, all while you deteriorate.

Could you ask to see the GI in person or their support team and explain that your condition cannot wait weeks for an appointment? Let them know very specifically what you are experiencing and how you are dealing with it as you have explained it here in your posts?

I also agree with asking for a nutritionist who is specifically experienced with IBD and j pouch patients. A nutritionist not experienced in these areas can potentially steer you wrong and make things more difficult.....just something to be aware of.....It may not be the case, but I had it happen and it left me feeling there were no answers, rather than the professional not providing good answers.

Last, based on your other posts, it seems you returned to work rather soon after your last surgery. Perhaps too soon? I was a student when my surgeries were done so I had more time to work with, but recovery took many months as I was very weak going into it all. I cannot imagine going back just weeks after these surgeries. I wonder if not having more recovery time is contributing to the difficulties you are having, including the stoma wound weeping.

CTB23 posted:

I’m very surprised that you’re not able to get support from your surgeon’s office,  I still get support from them.

There is nothing I can do about that now. 

About working. I am the only one who worked at that time because my husband had a car accident and didn't get compensation. I needed to pay the bills.

Yea I had a nutritionist before and she had zero clue about colitis. I have certain food intolerances and it was included in her recommended food list. I told her it was a no go for me. I did well for a while after I met with her but I quickly went back to my old habits again.

@BlueFlame During recovery did you lose weight and did you gain it back?  

I wanted to go to urgent care today but now I'm home and I'm too tired to leave the house now. Maybe tomorrow. 

Andrina posted:
CTB23 posted:

I’m very surprised that you’re not able to get support from your surgeon’s office,  I still get support from them.

There is nothing I can do about that now. 

About working. I am the only one who worked at that time because my husband had a car accident and didn't get compensation. I needed to pay the bills.

Yea I had a nutritionist before and she had zero clue about colitis. I have certain food intolerances and it was included in her recommended food list. I told her it was a no go for me. I did well for a while after I met with her but I quickly went back to my old habits again.

@BlueFlame During recovery did you lose weight and did you gain it back?  

I wanted to go to urgent care today but now I'm home and I'm too tired to leave the house now. Maybe tomorrow. 

It's been a long time, but I imagine I did lose some weight during recovery. I definitely struggled to gain weight at first, but I was already coming from way behind the eight ball by the time I had the first surgery.

I'm not sure if I would be a good comparison. I became ill with colitis at 16-21, had the colectomy at 21. My "normal weight" was about 110 lb, but I was so ill by the end that I dropped to 89 lb. After the first surgery, I was not a candidate for reconnection until I could reach 110 lb. I hated the temporary ostomy so much that I was determined to gain the necessary weight within the standard 3 month span between the two surgeries. I gained the weight, but not without great effort and by eating super high calories. At that time it was not about healthy foods.....it was about high calories. 

After reconnection, I do not have recollection about losing weight. If I did, it was likely slight fluctuations. I mostly recall that weight gain and rebuilding strength took a really long time. I was told in a matter of months it would all be a distant memory. For me, that was not the case. It was a good year before I felt strong again. It was a slow rebuild, but I just kept at it. Now weight gain is not a problem at all!

We are all so individual and there are so many variables. I really hope you start feeling better soon. It will come. 

Andrina posted:

It has to get better because I don't know how much my body can endure. I'm dropping weight each day. 

I know you have food intolerances, but wondering if you can tolerate high fat/calorie choices just to get jump started. For me, when my weight dropped so low, I could barely push open heavy doors in a public place. That's when I decided I didn't care what I had to eat, I needed to gain weight no matter what it took. I ate fast food, ice cream, candy bars until I had the weight on my body I needed to survive. No dietician gave guidance and likely wouldn't promote this as a healthy diet, but it was absolutely necessary for a few months to get that weight on and as quickly as possible. Weight gain often just won't happen with chicken and soft veggies when you are so depleted. It may be some will say the junk food diet is not the way to go, but sometimes desperate times require desperate measures and thinking outside the box.

I had a GI doctor once who used to say "if you are going to be sick whether you eat toast or a steak, then why not eat the steak?"

Basically, you have to eat. You should be on a soft food diet right now. Here is a link to what a soft food diet is: https://my.clevelandclinic.org...l-soft-diet-overview

Start slow and slowly add fiber and less soft things to your diet. Certain things will make you gassy or uncomfortable, just like when you were sick: onions, garlic, cabbage, mushrooms, corn, spicy food, etc. Stay away from those for now. 

And definitely drink lots of water and electrolytes. I drink Vitamin Water Zero, and G2 (gatorade with less sugar)- those were suggested by Cleveland Clinic. All the electrolyte tabs and powders are good too.

Just hang in there. It eventually gets better. I'm almost 10 years post take-down and I can eat anything. You just need to learn your body.

Also, while talking to the Jpouch community is great and very helpful, you need to talk to your doctor too. If you aren't feeling well, they are the only ones who can help you and who can figure out if something is wrong. If your surgeon doesn't take your insurance, you need him to refer you to some other surgeons and figure out who does. GI doctors are great, but in the year or two post take-down, you need to be followed by a surgeon.

Good luck!

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