Hi Jan - my Dr. went to a seminar in Sweden (for 2 weeks) the day after I got my script filled for the octreotide...the pharmacy filled the Rx with indivdual dosage vials, but Dr. didn't give me a script for syringes or needles. His MA suggested we wait 'til he's back (June 23rd) so she can find out exactly what he wants as far as administering the drug - needle size, timing, ect.). She has me tentaively scheduled to see the GI nurse (who didn't have an appt. open 'til then anyway) later that week for instruction on giving myself the injections. I agreed to this because I would feel better knowing my regular GI Dr. will be available in case of complications. I will definitely let you know how it goes. I really appreciate your interest and won't forget to post!!
Tomorrow I go to get my "training" to learn to give myself the octreotide shots...and will start giving myself twice daily injections. I'm a little worried....of the unknown with this drug and how it will affect me/if it will do what it's intended to do w/out a bunch of nasty side effects. I can only try....I'll update when I know more. Thanks for being here!!
Hi Jan - I had my injection "training" Monday and it went just fine. Needles don't bother me in the least, so that's a good thing. It's early in the game but so far my output has slowed down considerably!! For the past (almost) 3 years my output has been very watery and I had to empty 10-12 times/day (at least, God forbid if I drank a soda!!). Of course that causes electrolyte problems (as well you know). Since I started the shots Monday (June 30)......I have only had to empty about 6-7 times a day (24 hr period) and the ouput is not nearly as watery. My GI is going to call next week for a plan for monitoring....blood draws, etc. I know this IS scary but I am willing to try it rather than go on some kind of tpn or IV electrolyte replacement at home ("hook up" at night)....not that that would be the worst thing to have to do if need be, but if there are other options, I will exhaust those first. I have my first appt. w/nephrologist tomorrow (actually today!) because my kidney function has been compromised due to being chronically on the edge of dehydration. Hopefully the octreotide injections will help w/this.....even though my ouput has been slowed down, it remains to be seen if what's left of my small intestine can absorb what is needed. So....time will tell if this will really work for me. Thanks so much for your thoughts/concerns...I will keep you posted!
Hi Jan - it's been going pretty well. I reduced the injections (per Dr.) to just once per day. I was having some intermittent abdominal pain I felt was related to this. Since reducing shots I've only had an occasional slight twinge......maybe related to slower digestion? Don't know. Also, the octreotide seemed to be slowing down my output too much (geez, try to find a happy medium!!) I will have my first blood draw on the 24th of this month...but Dr. did reduce my potassium chloride to just once a day (20 mg) instead of twice, just in case I'm able to absorb it myself (don't want to overdo, can interfere w/heart rythym). I'm actually thinking I might be able to go to one octreotide injection every other day but will wait until results of blood draw are in before asking Dr. I can't say yet that I "feel" much different, although I've had a few extra good days (those are few and far between sometimes), so maybe time will tell. What I am really hoping for is to be able to absorb magnesium...the supplements haven't worked and it plays a part in overall hydration. I recently had to see a nephrologist as my kidneys aren't working as well as they should (never had problems 'til ileo surgery almost 3 yrs ago). He ran some tests to see if it's because of chronic dehydration or if they were damaged somewhere along the way. I see that Dr. on the 17th for results. Sometimes I feel like I'm on a merry-go-round of one thing after another. I'm sure you (and most if not all members here) have been there, done that.
Sorry to hear you're dealing w/scar tissue. I hope you are able to find out what's going on.
I will keep you updated.
Take care, ng
Hi, Hope this finds you doing ok with everything, and all of your test came out ok. Sounds like you have had your problems as I have. Seems like there is alway blood test or something to deal with.
I have had alot of test and everything has turned out ok for now.Guess I don't have a problem with scar tissue now. Mabe everthing will start working the way there suspose to and I can get on with my life. This has been along year for my husband and me. It all started a year ago today with the first operation that was supose to be simple without any problems. Three operations later and I'm still here and not doing to bad at this time.
Hope this finds you doing better with the shot and have everything under control. I enjoy hereing from you so please let me here how your doing. Jan,
Hi Jan - thanks for the well wishes and the same to you. Things have been going fairly well. I plan on calling GI Dr. Monday to see if he thinks it's o.k. to decrease the octreotide yet again. I think I could cut back by half again, or just go "by guess and by gosh". I will see what he has to say...I think "less is more" if at all possible, especially w/a statin drug. Since I'm having my first blood draw (since starting the octreotide) on July 24th, I want to make sure my Dr. knows exactly how much I take/have taken so he can accurately assess if it's working. I'm glad to hear you don't have any scarring issues now...hopefully they will stay away!! Thanks for caring, I will keep you updated!
I've been meaning to stop by here and post...sorry for the delay. My blood tests came back showing my magnesium is still low and sugar levels are good. That's about all the med. asst. said when she called me last week. I was disappointed as the mag. was the thing I was hoping the shots would help (maybe I need more time?). I did cut the original dosage in half after the first week or so, but still feel I could decrease even more (output is TOO thick and not that much reduced). I am planning on calling to talk to Dr. himself or make appt to see him and talk about it.
I REALLY understand about not going out much. Hubby does alot of the little errands and such but I do all the other shopping (food, etc.) but I would really rather not, if that makes any sense. Just so I can leave the house I can't eat anything solid for at least 2-3 hrs. before I leave. This is hard as I eat a little bit here and there to stay comfortable. I also have to take 2 codeine tablets (I really hate codeine, nausea is awful, esp. when I have to take it on an empty stomach to go out in public) or I would have to turn around at the end of the block. So when I do go out I'm hungry and nauseous. I also only drink water (not gatorade) when I'm trying to slow down output. But I "need" the gatorade to maintain even minimal hydration. I only go out once or twice a week and usually because I "have" to between Dr. appts/blood draws, etc. - I also have lupus anticoagulant factor - an autoimmune blood clotting disorder for which I have to take coumadin, therefore MANY blood draws (varying levels of hydration/dehydration really messes up my med. dosage for this). I found out about the blood disorder quite by accident when I was hospitalized a week after my ostomy surgery for what turned out to be blood clots on my lungs (very painful). I also have another autoimmune disease (otosclerosis) along w/all the complications of long term steroid use.
I do NOT travel. We had a family wedding in Georgia a couple months ago that I would have loved to attend....but not if I have to travel. My husband ended up driving there (we live in Wisconsin) w/his parents and our niece. I encouraged him to go, I feel like he misses out on too much because of me.
I agree it gets a little overwhelming to have to constantly empty the pouch. To be honest, the thickening of my output is actually not as comfortable as thinner output...and if the amount is about the same and I have to empty almost as often, I would then choose the thinner output. I have yet to understand if thicker is better if the amount is the same??
I also met w/nephrologist and the bottom line is stage 3 kidney disease due to chronic dehydration/long term inflammation...not much to be done but make sure it doesn't worsen. It has been the same for nearly 3 yrs. (since I had ostomy surgery) and he explained that many people have some degree of damage over time due to many factors (I am 48 yrs. old). The most important thing is to keep it level.
Sorry for the long post (more like a book)...I read here you were not dong well recently and I hope things are better. If you don't mind, could you give me an update on yourself?? I think I have read most of your posts I think, but I am intersted in a recap if I'm not being too nosy :) Thanks again for remembering me.
No need to apologize :). I'm sorry you've been having so many problems. It seems like when it rains, it pours. I really hope having the stoma revision will help you. It does seem like never ending problems, it's so hard to reach a certain level of wellness and manage to stay there.
I've been hanging in there, LOL. At the end of September I had another episode of dehydration and whacked out electrolytes. I was able to avoid hospitalization, though, as my Dr. let me go to the clinic each day over the course of a week to get IV fluids. I went to the oncology dept. as they have all the needed equipment and the nurses there specialize in IV infusions. I got one liter of fluid each day that was infused over a 3 hour period. The amounts of magnesium/potassium/sodium added to the IV was determined by a blood draw I had before the IV was started. I've been able to maintain hydration since then but as usual, it seems to vary from day to day. I have days where I feel I've been hit by a truck and other days when I feel much better. I did find a different form of magnesium, though. I think it has helped me quite a bit. Maybe it would help you, too. It's magnesium glycinate (rather than magnesium oxide) and it's more easily absorbed by the small intestine and does not have the laxative effect of the mag-oxide (we don't need that!!!) Ask your Dr. about it if you think it would help in maintaining electrolytes/hydration for you.
We've had a lot of snow this year, too! We had over 3 ft. just in the month of December alone. Last night we had -27 degrees! Brrr. The weather report is calling for warmer temps over the next few days, though. Temps in the teens will be like a heat wave, LOL.
Good luck on the 30th, I'll will send good healing thoughts your way....if you or your husband are able to update, please do.
Hi NG & Jan,
Just want you to know that you can drink coconut water to help with electrolytes and dehydration. I had a colectomy in July and I see a nutritionist. It's the most natural form of electrolytes you can get and it doesn't have the sugar like gatorade drinks. I get the ZICO brand from Wegman's, only drink one container a day.
I have had 20+ bms and have never had dehydration issues yet. I hope this helps.
When I get dehydrated I get cramps in my feet and across my back.....very painful (similar to a charlie horse). Another symptom for me is dizziness/nausea and muscle aches. Overall, I feel weak and tired (more so than usual, LOL). When I get up from a standing or sitting position, I get extremely dizzy and have fainted a number of times. If this kind of thing is going on with me steadily for more than a couple days, I call my Dr. and go in and have a blood draw. One thing to be aware of is that the standard electrolyte panel does NOT look at magnesium levels....that has to be specially requested by the Dr. in addition to the electrolyte panel. For months I complained of the cramping, dizziness (from low blood pressure associated w/electrolyte imbalance/dehydration), which are all signs of low potassium BUT are also signs of low magnesium. It is the forgotten electrolyte....the oncology nurse that gave me the IV's said they (oncology nurses at the clinic) have asked repeatedly to have the mag test be automatically added to the standard electrolyte panel but I think it's the insurance companies that don't want that as the mag test is a bit more expensive and most people don't have a problem with magnesium. The patients these nurses see are most often having chemotherapy and sometimes have dehydration issues as well.
I've always been thin.......after the IV's in Sept. and starting on the mag-glycinate, I have put on about 5 pounds and am on the lower end of a "normal" weight for my height and build. For the first year at least after my ostomy surgery I was very thin.....it takes a while for some, especially if you have ongoing problems.
I have never had a blockage (since my ostomy surgery).....but back in 1997 I was aware I had a very narrowed (scar tissue) area in the small intestine and I ended up with a blockage that caused my small intestine to rupture......that was a 3 week hospital stay because I ended up in CCU with peritonitis (now THAT hurt!). That was my only major surgery (they ended up taking 75% of my large intestine and about 30% of small intestine and resecting plus they removed my gall bladder as well) before opting for the ileostomy 3 years ago. The surgeon did say there was very little scar tissue when they operated the second time........as he put it, some people are more prone to "bands" of scar tissue than others. That's not to say it won't happen to me....just that I've been lucky in that regard (at least so far!)
I definitely have to watch what I eat and, like you, can only eat small amounts at a time. I would really like to sit down and eat a full meal, but I just get too uncomfortable/full. Some foods are hard to digest (as I'm sure you know) and I just can't handle them. I don't eat salads. I do eat a bit of raw veggies as they seem to slow things down but I (we?) need to be careful and not eat too much. Baked potatoes or peanut butter also slow things down a bit for me. Beef (other than ground beef) does not sit too well. I find that chicken is the easiest meat to digest. I am really a picky eater......partly because I always was and partly due to the ostomy/Crohn's.
Best of luck to you.....is the Dr. going to remove scar tissue when you have your stoma surgery? If so, maybe that will help ease things for you a bit. I hope so!
Hi, Jan, you sound upbeat, I'm glad you're home now. I understand how nice it is just to be home and in your own bed even though you are still recuperating. Hang in there and hopefully when your stoma is completely healed, you will see improvement :).
about the weight....I started eating an extra small meal in the evening (about 8 p.m.). I'll have an omelette (with bacon bits and cheese) and toast, lol. Sometimes I have a peice of peanut butter toast and a small glass of orange juice, other times I will have about 6 or 7 crackers with peanut butter on them and a small glass of skim milk. These are all things that I really like and even if I don't feel especially hungry, I can eat it. One other thing I started doing was having a 12 oz. can of regular coca-cola (over lots of ice to minimize the carbonation) about 4 p.m. I only drink Gatorade and water besides the coke in the afternoon and occasional o.j. or milk. I've never been a coffe or tea drinker but I used to really like my soda. It all sounds rather strange and it took a while to add the weight but I've kept it on for a few months now. I try to have foods for my evening snack that will not go right through me. Applesauce is another snack I like as it seems to slow things down.
I saw my gastro Dr. last Friday and asked him about the coconut water....he said to give it a try but to keep drinking the same amount of Gatorade. He's afraid the coconut water will not keep my potassium levels up, but I do take potassium chloride 2x per day so I don't know if I really get/need that much potassium from the Gatorade. For now, I'm going to replace the amount of water I usually drink each day with the coconut water and take it from there. I looked at the grocery store and didn't see it.....I bet it's in the health food section...if not, I'm sure the Helath Food store will have it. It sounds good!!
Good luck to you and keep us posted when you can. I'll keep good thoughts for you and hope you will see improvement.
Hi Jan, I did drink the Ensure plus for a few months after my surgery. Sometimes I would make a shake out of it or make a shake using an Instant Breakfast packet. The banana/yogurt shake sounds very good....kind of like a smoothie, I will def. try that! Since I've reached a "normal" weight, I don't drink them as much but I think they are a great way to add calories/nutrition. In the past when I've been hospitalized and was underweight, they would give me a small container of ice cream and a big sugar cookie in the evening, lol. I also had a mini can of ensure along with regular meals. Since my ostomy surgery 3 years ago I have to try to keep in mind I need the nutrition along with the calories. By the way, I am 5' 3" tall and right now I weigh 116 (I'm slender but not skinny). The Dr. told me he'd like me to weigh closer to 125 but the overall weight guideline for my height is 115-140 pounds. I am 48 and was dx with Crohn's Disease at age 19. Since then, I've weighed anywhere from 95-125 pounds. We have 2 sons, ages 29 and 26. They live in the same town as we do. Our oldest son was 5 months old when I was first dx'd w/Crohn's. We're lucky to have the second son.......I had a period of about 3 years in my early 20's when I was in remission and that's when son #2 was born :).
Don't give up about being able to get out more in the future. In a couple more weeks your stoma should begin to work more normally and hopefully that will give you a break. Just being able to slow things down and absorb more calories/nutrition will make a big difference in how you feel. A few other things I've thought of that I eat to slow things down are: applesauce, soda crackers, sweet potatoes, Rice Krispie treats, rice, low fat tapioca pudding. I don't take fiber - it has a laxative effect on me but I know it helps some people. I also don't drink fluids with my meals....except for a small glass of milk w/the peanut butter toast/crackers or a bit of o.j. with the omelet (I just can't resist that).
I spend a lot of my time cooking - sounds weird when people like us have a hard time with food, but I've always loved to cook. Quite often I make big batches of soups, stews or pasta dishes and give some to family members. My mother is 84 years old now and a widow. I have a younger brother who has Down Syndrome that lives with her. They do very well and are still in the home I grew up in. I cook for them about 3 times a week......just make a little more than the 2 of us need here. My husband usually takes the goodies to them the next day and it makes my mom so happy. It works out well because my mom doesn't have to worry about doing it herself and I try to cook healthy foods, too. I cook pretty much every day whether it's just for the 2 of us or for more.
I am an animal lover at heart. We've always had a dog and a cat. A few years ago I convinced hubby to agree to getting a little chihuahua. (So now it's 2 dogs, 1 cat). The little dog likes/wants/needs quite a bit of attention and since I'm home so much, she gets it. I didn't think that it was the empty nest syndrome...but looking back I'm sure that was part of it. I do go about 4 hours once or twice a month and volunteer at a no-kill animal shelter. I eat a couple soda crackers, take my meds and Gatorade and go. It works out well and I enjoy it. I'd like to do more but I don't want to commit. It seems at least one day a week I have to go in for a blood draw for some reason or other, so I try to stop at the store or whatever on the way there or back. I also read and surf the internet, lol. When the weather is o.k., we have a walking trail in the woods behind our house and I usually take the dogs for a walk there once or twice a day. After the snow comes, hubby makes a path and packs down the snow so we can still walk there. It's just in the sub-zero weather that I don't do it and lately it's been very cold!!
Sorry for the rambling reply but it helps a little to understand our individual situations. You are the only person I know of who has so many of the same issues as I.
You can get the coconut water at any Wegman's in the health food section. I personally drink the Zico brand and only the natural flavor. You can also get it at most health food stores, they have mostly organic coconut water; I have tried it but I really don't like it at all. I do eat many organic foods but I just can't couldn't drink this one. You should only drink one container a day; that is the recommendation from the nutritionist that I see regularly (every 2 weeks).
I hope this helps.
Hi, Judy, thanks for the info. I did look at the local grocery store's health food section and they didn't have it. We don't have a Wegman's here but do have a couple different health food stores. I am interested in trying this. Thanks again!