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Pseudo Blockages, malabsorption and severe anemia...am I having fun yet?  

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sjlovestosing
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September 16, 2019 7:55 pm  

Hi Linda,

As I read your previous entry, I began praying for you. I wish you didn't have to go through all this discomfort and pain. Also, I hope your GI gets back to you soon. It must be hard to have to wait for a response. Again, your faith and attitude amazes me and puts me to shame when I worry about the small things that I go through. 

I truly hope and pray that your will get beyond all this soon and start gaining some weight as well. 

Take care and God bless,

Stella

 

 


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LK
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September 17, 2019 8:57 am  

Hello Stella, Thank you so much for your kindness.  I know it is normal to feel bad for someone who is going thru something, and yes, this is not on the fun side of life, but I am doing okay thru all of it. There is always someone worse off in the world somewhere.  I still have a reasonably good life all things considering, and I enjoy keeping as busy as I can when I can.  I pace myself to do this. It is amazing what kind of pain one can work thru, you have all been there, in pain, and smiled when someone comes along. I am sure most of us have said "I'm fine" or "I'm good" even when in pain and exhausted. Not always smiling thru it happens sometimes, but then I retreat to  few days rest to gain my strength back.  The more tired I am, like anyone, the less I tolerate. I keep plugging ahead one day at a time and when I can't get to the store my son or his wife helps there, and my pharmacy delivers. My son helps me a lot and he will do a major vacuum for me if I need him to, but I try to be as independent as I can. He is such a good young man and looking so forward to being  daddy in November. I love my kids so much.  They have been thru this with me too and are very compassionate people.  I make a point to not take advantage of them so that the respect thing remains.  I have that neat robot vacuum, Roomba, I bought from the elderly twins sisters next door, Roomba does my floors in between my doing them, then I do one room at a time time once a month with my electrolux.  Roomba does not scare Romeo anymore and I think it is hilarious to watch her doing my chores! Lol!

I am aware of a few on here that pray for me and I thank you and appreciate that a lot. I know that my life is in Gods hands and I have heard someone say that if you want to make God laugh, tell him your plans.  This is not what my plans would be at all. I would be rich and exploring the worlds beaches and collecting seashells with my hubby in bare feet forever. But that is not the way things are. I just keep on trusting God to meet my "needs" on a daily basis and he does that very well. I have a roof over my head, an A/C in hot months and the furnace & gas fireplace in winter. A dog snoring at my feet fills the void of the missed major snorer, and, he does not mind my cold feet on his back.  When I need a cuddle, he is a willing little buddy for that too. Lol.  He is also a great listener. 

I have to be honest and say that malfunctioning to this extent has given me time to read my Bible more and I like to  watch Dr. Charles Stanleys church service, Sundays. He is not the usual fist thumping preacher, he is a pastor teaching from the Bible, there is a difference. Not the same as being in church, but I spend most of the time in the washroom there anyways and tend to wonder why I went I in the first place. With the benefits of texting I can communicate more with friends and distant family & not feel like I have to explain why I look so beautiful each day, Lol.  We all have our battles to fight in life, some more then others, and some just for a while, and if this is mine, I can deal with it...most of the time. Regardless, I have accomplished a lot this past ten days and have one more major thing to accomplish in the goals I set for myself.  Even thru the pain, I have canned 17 1/2 pints of homemade Salsa Sauce, 8 pints of canned Tomatoes,  and froze two large zip bags of them for soups, yesterday I made 6 1/2 pints of pear chutney, it is a fruity type relish,  and I finished the 6 quarts of pickled beets today, and by the end of the week if I can gain more energy I am canning the carrot pudding with a rum sauce to give as gifts to my closest friends for Christmas. Setting goals keeps my  life interesting too.  I love to cook and challenge myself to cook something new each month.  My life is really full, even with all this malfunctioning  going on, and I am glad of that.  When I need to take time, I take it. I am the boss I answer too.. for things I do not accomplish and I am forgiving. lol. I keep telling myself, "I am okay so far." and I am.  Your experiences no not matter how small you may think they are,  are just as important.  Please, do not think I think they are not. I love hearing about friends travels and the things they deal with on a daily basis, it helps make my life interesting too.  Calling it malfunctioning instead of sick, helps me function better all around. 

Which brings me to this....if anyone has a really good tasty recipe for egg plant and would like to share it, I would certainly be interested. I have no good recipe with it so I must be doing something wrong and would like to use it in a Ratatouille (?) to stuff in peppers but the flavour is what evades me.  CAn it be frozen in a recipe? I am not afraid to try something new unless it is really gross like glorified slugs, oops, snail. Yuk.  Also, do you eat Cous Cous? The tiny stuff & what do you like to do with that?  I have so far learned to make it in a bowl on the counter by adding boiling water or a vegetable broth I made and froze in spring. I've turn it into a Greek Salad and no, it is not a true greek salad it you put lettuce or cous cous with it, that is how restaurants make money, cheating.  It makes it interesting and more of a meal. I use bottled dressing ofcourse but I should make that too, I do have a good recipe for it.  I want to expand on this for winter and am not sure how?  Cous Cous is  rather portable component to a lunch on the beach and I have added it to the top of a green salad as a  sort of filler, but I want more from it.  If you have a recipe or just something you do from your imagination could you share that here please?  Anything not vegan can be in a PM please. 

Thank you for caring and for taking the time to respond, It feels more like friends and family here all the time and I know if I need answers to anything, I can check in here.  Have a great day all of you. 

Linda


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LK
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September 23, 2019 9:55 am  

Update...I now have an appointment with the  gastroenterologist 3 hours away.  Pay parking heavy traffic and one way streets here I come! Lol!  The original one I asked to see has read my file and turned me over to a colleague in the same office, who he feels is better equipped  to handle my situation. So come, October 22, 2019 I may be one step ahead. This Wednesday, I see the internist then Thursday, I see the GI who did the scope at the end of  June. I am still trying to figure out how to tactfully tell him how I felt how he handled that apt., the pain he caused by being in a hurry, the torn skin by hauling off the wafer the way he did, and the fact that the sedation pretty much failed. Has anyone had to talk about an apt. where they needed to tell the doctor they felt he had poorly handled their situation? I would appreciate any advice in this matter. Thank you all.

Linda

Linda


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Dona
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September 23, 2019 11:59 am  

Great news that you are getting to see the right people. This is a positive step ( steps).

I did talk over the care I had gotten before my surgery with the GI people who treated  me at that time ( and still do). Mostly it was about how they could help prepare people better for the STOMA! It was always  made to seem like the worst thing possible, and it isn't. They listened. They also tell people about VO now too!

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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john68
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September 23, 2019 12:14 pm  

Good stuff Linda 👍 Advice on having that sort of conversation is stick to the facts and make it clear it’s not personal. What has to be said has to be done and it’s the way it’s put across. Do keep yer right foot light on the noisy pedal and travel safe 👍👍

ileostomy 31st August 1994 for Crohns


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IleosTony
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September 23, 2019 2:40 pm  

Hi Linda,

 

I think that no matter how you broach the subject of dissatisfaction with a medical practitioner, it's going to be unpleasant. If it were me, I would start by letting him know that the sedation failed and that you were aware throughout the procedure. Then it might be easier to let the doctor know about the discomfort you felt as a result of the rushed way he handle things, the torn skin, etc. The only way to avoid unpleasantness here is to say nothing, but if you want to continue to use his services, he needs to know that he had better be more careful in the future. Sometimes, as with many people, nothing teaches a lesson like a sizeable dose of embarrassment. Obviously you want to be as diplomatic and polite as possible, but there's just no way to say something without there being discomfort for both of you. Perhaps it might even simply be enough to tell him that the sedation didn't work and that you were aware of everything. We blind folks tend to plough forward when we talk, not seeing someone's facial expression and thus not realizing we may be poking at a sleeping bear.

 

I don't know if that's helpful, but it's the only way I've been able to express displeasure with a medical practitioners misconduct. It's happened to me three times. The first time the doctor took offense, and I never saw him again. He was a jerk anyway, and I later found out he had a bad reputation for the way he practiced medicine, just grazing the border of true malpractice. Creep. This was a case of inadequate sedation. The other two were not happy but did apologize, and things were okay after that. One fourth guy was so arrogant and unresponsive to my requests for what I knew would work for fear of his own potential liability, where other doctors had given me the treatment I told them would work, that I flatly told him his bedside manner was an outrage and threw him out of my hospital room. I only saw his partner after that. Don't do what I did there; that was poorly handled by a brash young whipper-snapper with budding manhood to demonstrate to an uninterested world. Lol.

 

Hope this is helpful to you, though I can't help but doubt it.

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


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SqueakyandLiza
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September 23, 2019 11:45 pm  

Linda, 

I am so happy that you are hopefully going to be seeing someone who can actually help you, and in less than a month!!

This might be a silly question, but if you are seeing a new GI in October, why do you have to see the other one on Thursday? I’m sure there is some reason, so when you talk to him, I second what others have said-don’t make it a personal attack, but instead give the facts of how it affected you physically. Hopefully the doctor will not have realized that he hurt you and be apologetic and be more careful the next time he does that procedure. 

What are you seeing the internist about. Hopefully about your anemia!!  They need to get that under control for you!!

Best of luck both on Wednesday and Thursday!  

-Liza
“May your day be bright and your bag be light.”


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LK
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September 24, 2019 5:22 am  

John, I appreciate the thumbs up and the advice that comes with it. I  had two other timesppppppppsßsssssppppp ( yup prime example of a snooze!) in life where I've had to speak to a doctor about how  he treated me and sticking to the facts is the best way to do it.  I respect that they went to school for so long, but we never know what their passing grade was do we? A good surgeon can fail in bedside manner as I'm not sure it is something they are taught in school or something that comes naturally, which, is what you hope it would be, considering the profession.

Tony,  thank you for sharing that! My spine feels a little stronger because of what you all have shares & advised. This afternoon between naps I wrote out what I wanted to talk about.  I have four points to make. I would like to see if I could get someone to come with me, because, I think it would be a reason that he would not be able to pass it off as he has before. I'm sorry you had to experience what you've gone through I can only imagine it would be even more frightening being blind. I was very aware that I was losing my dad the morning of the scope, I was feeling both very deeply. (Pun Int.) I think things could have been different if he had taken a few min. To ask what was going on and why I was so tired.

Dona, that's great that the doc. is sharing about Erics VO site. I think we have a little gold mine here. Thankyou for sharing that too. Blasted, keep falling asleep. 

Liza, I was referred to the Internest by my GP because I kept running fevers when all of this started. One reason it was 7 months to get the apt. was because all my aqqqqqqaaaaaqa, crumb!, GP had put on the ref. was "FEVERS", nothing about the malnutrition, diabetes, or the other issues I was having. When she saw me and I went for the blood work, they took, 17 vials of blood! 5 of them were an 1" around and about 6 " high, but were only filled about 3/4 full. She confirmed a lot of things I had been told I was dealing with, and then if you go back and read the 1 st, 1 or 2 posts in this forum, she had that other news for me too.

I need to see the fellow who did the last scope just to get the results before I see the GI in kelowna.  A few other things went on, so also need to make him aware of the bad job sedating me and a few  other issues too. I am hoping someone will come along as I think he will be more inclined to hear me out rather then passing it off.

On that note, I rec'd a call from his office yesterday afternoon,and they have moved my apt. for the 3rd time. Now to the 9th of October. At least it is in the same month, almost!  I truly have to get some serious Z's here. Thank you all again. I appreciate you all so much. You too Eric !

Linda

 

Linda


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LK
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September 30, 2019 1:34 pm  

Update...my apt. with the  Internest went well.  I am told that my cholesterol level was lower then the start of all this.  When I handed my blister pack over to her, she told me that the cholesterol pill had never been pulled, as she asked at the start of this. Too low a cholesterol  level can cause a fair amount of issues on it's own. I asked if the pharmacy needed a note to do so, she said "no". With no note, I let the drug store know and...ofcourse... they wanted a Drs. note to do so. I told them I'll pull it out myself and they can wait till my next apt. to get their note. I will not make a special trip for this lack of communication anymore.

She reported that as long as I keep taking all the extra vitamins and such that it makes the blood work "appear" in the normal range, sort of eliminating the malnourishment results in the blood work but not the malabsorption issues. Because of the unpulled pill, she wants me to increase my fats further. This, so goes against the rules as I know them, lol. and everything I have  been taught and worked to achieve.  But, if it means extra butter on my veggies and mashed spuds and... then ok, I'll do that. I had already added more creamed soups & sauces  I love canned tomatoes on my mashed spuds, maybe I will try thickening that some and doing so with added cream or milk.

I recently learned I have been diagnosed...after 50 yrs...with Crohns disease.  Not sure if I am one step ahead here or not. I was not surprised at all, but in learning,      AnkylosingSpondilitis also affects the heart, lungs and eyes, I added another piece to my puzzle. Has anyone else with Crohns had a long and hard time before it was actually diagnosed? Why can it be so hard to find it? Does it have  something to do with the auto immune system,  maybe super fast healing times? My eyes are still improving in what I see without glasses on.

Changes noted...I am getting sores in my ears and wearing even the softest smallest ear plugs, at night, also hurt and they would even fall out. On examination I discoved that our ear canals are affected by the fat in our bodies too. Having lost so much of it,  sores were blamed on further fat loss, in the ear canals and with skin on bone = sores. I am wearing a night mask more frequently now because fat loss off my eye lids, and the light getting thru to my eyes & brain, not helping me shut off to sleep at night. I found a mask that keeps all pressure and padding off my eyes completely. Bonus!

No approval yet on the special permission for Iron Infusions. She suggested I pay for at least one more. I have no room in my budget, to do that and still owe my sister for three of them from last time. $132. each is no laughing matter here. If I pay for one more they will likely wait me out thinking I can pay for them!  With all the added vitamins and such, there's just not enough money to even consider this even in small payments, without taking from my groceries.  this would defeat all the work I have put into simply surviving this whole thing by doing as instructed to do by the professionals. Time to make more noise?! Not sure where to get the energy to do that.

Thank you all for your kindness and support here. 

Linda

Linda


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IleosTony
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October 2, 2019 1:01 pm  

Linda,

 

Crohn's can be quite difficult to diagnose. Your case is not uncommon in that regard. It can look like other bowel issues. Sometimes a doctor just gets it wrong. I was incorrectly diagnosed with ulcerative colitis in the beginning. Sara Ringer, a prominent IBD blogger, was also mistakenly diagnosed with UC.

 

I believe that you are potentially at an advantage with this diagnosis, as now your healthcare team can justify prescribing medications that specifically target Crohn's and might give you a chance to get better at least from that.

 

My prayers for you continue.

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


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sjlovestosing
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October 2, 2019 7:03 pm  

Hi Linda,

I hope that things begin to look up for you soon. You've been through so much as it is. Your strength and faith have inspired me so much, but I hope the good Lord will give you the healing you need ASAP! 🙏🏻 

God bless,

Stella


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LK
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October 3, 2019 1:36 pm  

Tony and Stella and Liza 

Thank you so much for the encouragement. I do tend to feel like there is a light at the end of the tunnel, and that, is a good thing! I do "like" to let the "grass grow" under my feet,  so staying idle for so long with the gut pain and nausea has been challenging for me. Though I try to do as much as I possibly can for myself through it. The last five days have been challenging, I managed to Jam something in my neck, making it impossible to even bend my head forward let repair my dishwasher! And, I did repair it!!! Yes, the day before the neck thing, the centre arm in my dishwasher busted and fell on the dishes below! Because I do not believe in paying high fees for simple repair jobs that I can do myself with a bit of muscle and brain, I found the parts on the net &  a repair company that was willing to bring them in for me so I could repair it myself. Not being very flexible in my neck it was a bit of a challenge but I did it anyways! Anything to avoid standing at the sink washing dishes and it seems I use "a lot" of them lately! LOL! For $5.60 I saved myself almost 200 bucks, by not paying the 90. $ for repair man travel and then the same for the hour to repair it! I have done this a few times in my life and it is one of the reasons I disagree with the computer elements in appliances these days.

I will take all the prayers I can get and I appreciate them so very much, thank you for remembering me. 

I can't imagine a medication designed to target the gut! I always feel so much heat inside my belly. Is that even possible? This sounds so encouraging to me! So, on a wing and a prayer, here I go again.  Thank you all for the support.  

Linda

Linda


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IleosTony
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October 3, 2019 2:25 pm  

Hi Linda,

 

One such drug is Entyvio (Generic name vedolizumab). There is public funding available in Canada, in case you rely on a public provincial drug plan. You can read more about its availability in this press release:

 

Provincial drug plans make ENTYVIO (vedolizumab) available to treat Crohn's and colitis - News and Events - Crohn’s and Colitis Canada

 

 Ask your doctor about it, now that you have an official diagnosis. If it's right for you, maybe it will help you turn the corner.

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


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sjlovestosing
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October 3, 2019 2:30 pm  

Hi Linda,

Way to go (despite hardships) on fixing your own dishwasher! I am not so sure I could have - especially now since our dishwasher has been on the fritz for about 8 years now. I use it for storage lol!

Stella


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LK
 LK
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October 3, 2019 11:21 pm  

Tony, so much amazing information! Thank you!  I think my screwy inflamed eyes prevent me from exploring these things on computer, but today, I have been reading a lot from that site.  Amazing information!!!  The one thing I crave the most is to feel really good again and it has been way too long since that happened.  Now it feels like the head lights are on it.  Thank you for supplying me with such good info that makes it feel possible for the first time in ages.  I do my best to not let these health issue get the best of me, by doing the normal things, like making pies and canning even when I feel like a squashed bug. It is one way I give myself hope and the other is thru my faith in God. 

Stella, do you remember what was even wrong with it to begin with? I laughed so hard when you said you used it for storage! LOL!!! That's hilarious!  But I guess the pull out shelves makes it all the more convenient! It would be a good place to stash a gift in a hurry I guess. lol.

Linda


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sjlovestosing
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October 4, 2019 9:11 am  

This is off topic, Linda, but to answer your question, I haven't the foggiest idea! I think the dishwasher was not cleaning as well and getting noisier and nosier. I store my hot water canning equipment in there. 😁 

Stella


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LK
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October 10, 2019 11:58 am  

Update...I actually had my apt. Yesterday with the Gl who did the scope. Post concussion syndrome is having it's way with my brain again! He says that I should have been under the care of the Correct GI but that was lost in translation somewhere!  At this point, I really don't  care. I see a very good one on the 22nd. And will go forward from there. He said there is nothing he can do surgically at this point unless I wanted to be his guinea pig and have an intestinal transplant! I laughed at that! Lol! I told him if it was ever an option, I would invite him in on the surgery! He prescribed something to start me on slowing down my guts. I am waiting to see what the correct GI says first. I am okay with that as long as it does not cause a blockages again. He is checking my output for infection of any kind. I get such an awful heaviness and fullness in them & they are and so much more painful when they are like that, it scares me! 

I told him right off the bat we needed to talk about the scope, but only "after" he told me the results. When I did, I asked him not to comment until he heard me out because It was  very hard for me to talk about & l needed him to hear all I had to say.  He pushed away from the desk and I  knew I had his full attention this time,  unlike during the scope.  I told him everything and I was surprised how very emotional it was me. His colour blanched when I told him I saw & heard & felt everything. I told him if he had stopped long enough to simply  look at me, he would have seen the horror in my eyes and known what was wrong. Being so unable to move or speak &  was like being tortured. I told him how often he told me to settle down and what he said in return to each groan l managed to get out. I said he should have looked at me and tried to figure why I was  obviously not comfortable and sedated!  I told him of the torn skin & the small tear between the skin and the stoma, & the weeks of healing. I told him he was correct, I was upset that morning & the reasons why and how he should have taken the time to view me as a human and not the lab object as I felt.  I also told him why this scope had to be done and why waiting was not an option for me & with what was going on with my guts, the anemia & with my Dad at  that time.

It was good to get that all out & he was really listening. He apologized profusely about it and took time to ask if I was okay as could be about it now & several other questions I did not expect. He said he has never had a patient tell him this has happened before and he said he would do better going forward & he apologized again. I assured him he was "not" in for a lawsuit, and I managed a small chuckle. He explained that it is called "locked in syndrome" and he made a big alert on my file at the hospital about it, to hopefully avoid this going forward and strongly advised me to make sure this is brought up should there ever be another sedation of any kind, especially full on anesthetic. I had sadly not seen this kindness in him before, and gave a small suggestion to maybe not be so clinical with his patients, who are all human beings with real concerns and fears, first. He agreed that he could benefit from that advice. He apologized again, we shook hands and he said he would be glad to be my surgeon should I ever need one again. I was pleased with the way this went. 

Stella, perhaps a new dishwasher is in your future! Lol! With "you tube" I think repairs are more possible then before! Run the baby, and tell a repair man about the noise and simply ask what it may be if you should get it repaired. Start there. Watch you tube, have some repairing fun. lol.

I was seriously sure l was trading my new little car in for  and automatic, but enjoyed driving it so much yesterday, I have  shoved that thought in the back of the closet! The car wants to run when I want to jog, so Gramma will just have  to watch her newly discoved lead foot! Lol! Thank you all for the kind support: To anyone out there, please note that my experience with the sedation is an extremely rare happening and will never likely be something you experience.

Linda


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SqueakyandLiza
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October 10, 2019 12:25 pm  

@dlkfiretruck

Linda - I am so proud of you for telling him all that, and so glad he responded the way he did!!  It seems like the absolute best-case scenario. It should be a lesson for all of us (me for sure) to not avoid uncomfortable conversations. Letting things build up and fester is so much worse!!  As for me, I would have been too afraid it would have gone badly to try to have that talk. Linda, you are an inspiration!!

-Liza
“May your day be bright and your bag be light.”


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IleosTony
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October 11, 2019 5:36 am  

Linda,

 

Wow! A soft answer turns away wrath. It sounds like both you and the doctor practiced that. Sometimes it's in the words. Sometimes it's in the delivery. It's so very pleasing to hear how that went for you.

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


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john68
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October 11, 2019 7:27 am  

Linda really glad you got your speak, As Tony says it’s now it’s done and the approach 

ileostomy 31st August 1994 for Crohns


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