Skip to main content

50 replies

BCIR and cuffitis

GW Guy with j pouchMember
Is cuffitis a strong fr going for BCIR ?

I have Cuiffitis, scope indicate is is 2/6. But the pain kills me, it looks like a brunch of broken glass n it. Currently I am under canasa, but it looks like it has no effort on me.

Seriously looking for alternatives and some kind of pain management medicine.

Your advice is appreciated.


Peter
Original Post

Replies sorted oldest to newest

Jan DollarJan DollarModerator, RN, retired
I had chronic cuffitis too, for many years. Oral Azulfidine kept it under control for the most part. But, I later developed enteropathic arthritis and went on biologics for that (first Enbrel, then, Humira, now Simponi). Since going on the biologics my cuffitis has been very quiet. My GI has said my pouch never looked better.

So, for me, medical management was the better solution than surgery...kill two birds with one stone. Plus, I've had a couple of surgical procedures with no mishaps (not j-pouch related). Still, once or twice a year, I need a short course of prednisone (2 weeks) for arthritis flares. But, I am OK with that.

Jan Smiler
Jan DollarJan DollarModerator, RN, retired
It is possible that you are even allergic to Canasa and it is making it worse! Not common, but the way you are describing this, I would stop the Canasa and see if things get a little better. If it was effective, you should have seem some sort of improvement in a month. I also wonder if you have fissures in addition to the cuffitis. THAT would really cause intense pain.

Jan Smiler
NurseAlexNurseAlexMember
That's great Jan! I know everyone is different but before "going under the knife" again, I am hoping to try these types of meds. After I have my scope and dilation on Friday, they will be able to tell me if it's more inflammatory or more of a stricture issue. Drugs won't help the chronic stricture I'm afraid...

Thanks again for your input, it is always appreciated!

Alex
NurseAlexNurseAlexMember
One thing I wanted to mention is that reading the comments on this thread really helps me feel like I am not alone. I have been having chronic pain for almost a year now with this issue. It took me a LONG time to get a doctor to take me seriously about the pain level. Unless you have experienced this pain, it is hard to describe. It is good to know I am not alone (not because others are suffering, but because I know I am not losing my mind).

It has been a LONG road getting the psin under control...I was sent to two pain management clinics...neither knew what to do with me as they usually dealt with musculoskeletal pain. No one knew how to hsndle chronic "anal/rectal" pain. They both wanted to put me on some Patch called Butrans which actually includes a drug used for treating people recovering from addiction. The patch was known to cause terrible side effects and was not guaranteed to work on my sort of pain. Plus whenever I walked into those places I was given a drug test and treated like an addict. It felt like I was in what I've heard described as a Methadone clinic. It was awful. I refused to even try the patch and continued with Motrin (in large quantities). It was determined that overuse of NSAIDS most likely contributed to pouch inflammation, so I was ordered to stop taking it. Tylenol did nothing and I suffered for months.

Finally, after getting my first scope with Dr. Metzger, it was determined that I had a severe stricture, anal fissure and severe cuffitis. He did a mega dilation, put me on a whole regimen of local meds and has been managing my pain with xylocaine jelly and hydrocodone ever since. It has worked well But It's now getting to the point that the chronic pain is interfering with life so I must do something!

All of your posts have been very helpful, thank you for helping me not feel aloneSmiler

Alex
Jan DollarJan DollarModerator, RN, retired
Medications can help with the issues, even the stricture, because chronic inflammation can encourage scarring and stticture formation. So, have hope that you are on the road to better health and less pain. Just getting a proper diagnosis should really help a lot. Pain management is OK, but they do nothing to treat the underlying cause of the pain.

Good luck Alex!


Jan Smiler
S skyeddieMember
hello jeane,
so how did your appt w/ cc go? how is the pain now?
have you learn anything new?
i am maybe 13 months out from takedown and lately having severe pain from cuff inflamation. i do a canasa every morning if there is no pain otherwise i insert a hydrocortisone cream, cipro/flagyl 2-3 times a day, apriso 3 a day, and recently entocort. oh and hydrocodone almost daily too. sometimes i feel ok,and sometimes not. i've tried to ween off the anitbiotics because of the overuse fear also but in a few days i really feel terrible and go right back on it again then i feel better.
my wife is trying to get chia seeds in my diet since she have read somewhere that may help with our condition, but i am starting to feel that i am seeing the glass half empty.
i just hope i can find some mix that will work for me before i throw in the towel........
sorry for my rant, just getting frustrated
NurseAlexNurseAlexMember
Hello Jeane,

Thank you for sharing. I have a wonderful G.I. who is a jpouch specialist as well as my surgeon. So far, the antibiotic she has tried for me has been Xifaxin. I have a follow-up appt. with her next week and I'll ask about Cipro. It seems to me that I have tried that in the past and while a large dose gives me a bit of an upset tummy, it was very effective.

I had my scope and dilation a week ago today and my surgeon has me back on cortifoam twice a day for three weeks then resume Canasa. He also has me using the Hagar dilator daily. Miraculously, while it has been uncomfortable, it has not been near as painful using the dilator was the first time I had a large dilation. The fissure has healed so I think that may be part of why it is not hurting quite as bad. I'm using xylocaine jelly and the carafate ointment they gave me for my fissure to lubricate and numb and that has helped alot.

My everyday pain, however has not gotten better. As a matter of fact there have been a couple of days that I have been completely debilitated. I went back on a round of Xifaxin the day before yesterday and I am finally feeling slight relief. I plan to ask my G.I. For a round of Cipro and see how that goes.

I also wanted to comment that I relate to feeling like being cast away. Prior to this last dilation, my surgeon had basically said there's nothing he can do for me unless I wanted reconstructive surgery and pretty much released me to my GI. It wasn't until I had his stricture that I started things up again. He said my pouch looks great, inflammation is only in the cuff, so we are all hesitant to do major surgery because I risk losing great pouch function. Anyhow, hopefully keeping this area open and treating the inflammation will eventually help...

Thanks much,
Alex
Last edited by NurseAlex
NurseAlexNurseAlexMember
I just re read some of my posts and apologize for the abysmal spelling... I must be ignoring The auto correct on my ipad2...oops! sorry if some of the things I've typed have been confusing!

I feel so fortunate that I have had such a great experience with my current surgeon (Dr. Metzger) at Mayo Jacksonville and my local GI. My surgeon wants to try to avoid pouch advancement surgery at all cost and is working with me and allowing me to work along side my GI to come up with potential "medical" solutions to avoid surgery. My pouch is beautiful, very well made and functions great (no urgency, total control, sometimes only have 3-4 bms a day, etc.), so the fear we all have is that messing with the cuff and pulling things down might screw up pouch function. My surgeon is limited however in treating me medically, so I get conflicting recommendations on local meds, creams, etc. sometimes and that can be frustrating.

My GI said she would be willing to turn me over to a colleague of Dr. Metzger's at Mayo if need be although I would hate to lose her! She is so knowledgeable with j-pouches and is always willing to research and discuss things I bring up. I am very lucky in that respect. Plus they BOTH LISTEN to me and have tremendous staff nurses who are phenomenal in coordinating care.

That said, I really need a solution to this chronic pain. I have a follow up app with GI next week and I will review surgery notes and make some suggestions I've heard here.

Thanks again for all your input and I will keep you posted!
J jeaneMember
Alex
Please keep us posted. I am struggling with the exact sane issues you are. My pouch is great. It the chronic cuffitis, despite aggressive rectal, treatment is not working. I too am in chronic pain and cipro seems to be the only thing that keeps the cuffitis at bay and i do not want to take this medicine long term. I just stopped my ten day dose and the constant irritation and anal pain are back. I see my GI in two weeks and will report back too. I am leaning towards oral IBD meds such as sulfasalazine.
Last edited by jeane
J jeaneMember
Thanks for the info Jan.

I am in a bad state today. It has been about four days since I stopped cipro and wouldn't you know my anal pain and irritation have returned, along with my recurring stricture issues. My pouch seems fine (no urgency, increased frequency etc), but my anal transitional area is killing me (burning, itching, constant pain).

I feel like I am the experiment gone wrong. No one wants to deal with my chronic issues since having this surgery. Gi's keep throwing rectal meds at me that after several months of non-stop use are doing nothing. My original surgeon suggests I advance my pouch ( a whole other set of issue I imagine with this approach).

I do not want to live on cipro or antibiotics forever and now I have stopped pentasa per Dr. Shen's orders. I am wondering if I should restart my old IBD drug sulfasalazine. If pentasa is truly similar to sulfasalazine with just the nasty part of the sulfa removed, why wouldn't a GI recommend continuing this medicine?

I need an oral med that can reach the anal area or work systemically in the anal area and both Dr. Shen and my GI (after prescribing it) agreed pentasa releases in the small bowel. I am almost desperate for a short course of prednisone to see if I can heal this anal ulcer.

I do not understand why cipro is helping me when in 25 years of chronic UC, I never took this medicine once. The other thing I am thinking is constant straining to empty my pouch is probably not helping heal the anal ulcer. I am not sure if this could be an issue for others with chronic cuffitis or not. Seems once I am off the antibiotic the pouch is fine, but the stricture recurs and all the anal issues occur full force.

This is so frustrating as I just do not understand why the rectal meds (canasa an anucort) are not helping me and I am concerned my only possible option is pouch advancement surgery. I cannot tolerate all these rectal meds any longer that are not doing anything to heal the ulcer. I am going on over a year of trying to unsuccessfully treat this issue. I am sorry for this rant, but I am so down in the dumps today over this continual jpouch nonsense. I wish I had the nerve to get it yanked or someone could offer me some medical and not surgical treatment to help.
Jan DollarJan DollarModerator, RN, retired
Jeane, if you've mentioned this before, I apologize. But, is there a reason you cannot just stay on the Cipro until the anal ulcer heals? Do you have tendinopathies related to its use? I think it helps you because it reduces the fecal bulk (much of the bulk is bacteria). That alone gives your poor, worn out anus a rest, so it can heal. I would think you'd need 4-12 weeks of continuous use.

As to the difference between Pentasa and Azulfidine, Pentasa releases throughout the GI tract, while Azulfidine (and Asacol, and Colazal) release in the terminal ileum and colon. Sure, topical makes most sense, as you get a higher concentration directly where you need it. But, the reality is that in your case, it is not working. Some have had similar results when there was active, severe inflammation. The suppositories were just too irritating. Have you tried Cortifoam? Some get better results when they cannot tolerate the suppositories. If you have Pentasa on hand, how about contacting your GI and ask if it is OK to resume it? Makes sense before opting for more surgery...

Jan Smiler
J jeaneMember
Thanks Jan.

I am just entirely befuddled by this whole thing. I never had anal ulcers with UC. I did have inflammation at times in the rectum, but never anything to this level with this amount of pain and discomfort and never in the lower anal area like I am now experiencing. I cannot believe this small section is giving me this much heartache and pain.

I tried augmentin for over a year and really had little success with being pain free in my cuff until starting cipro. Even after ten days on that, and continual rectal meds over the course of a year, I still had an ulcer in the anal area at my last scope at Cleveland. Granted the inflammation was a 2/3 versus an 8/10 when I saw Dr. Milsom a month or so earlier. I can handle some ongoing inflammation in the cuff if I am at least asymptomatic as I was when I had that scope.

I can take a longer dose of Cipro, but I am guessing I am just delaying the inevitable. The ongoing stricture is not helping my issues either as I often have to strain to empty my pouch and I am sure this is not helpful to healing the anal ulcer.

I am going to restart the pentasa this evening and probably will start cipro again as I cannot function at the level of pain I am currently experiencing and with the holidays approaching and doing the event at our home, I need to do whatever I have to in order to get by. So I can forge forward on cipro for another month and can try cortifioam as I have some in the house and also resume pentasa (I have emailed my GI).

It is interesting and quite depressing that I am on WAY more meds now than I ever was with UC. My gut feeling is this whole scenario is eventually going to equate to pouch failure, and a waste of a couple of years of my life. This has been going on WAY too long.
J jeaneMember
Kathy,

Thank you. I honestly see pouch removal as my only option for total relief from this recurring nightmare, but I know it is a huge surgery with it's own set of complications. It is so frustrating to have a good pouch and all these anal issues that I never dealt with prior to this operation that are refractory to medical treatment..very sad day Frowner ...
Jan DollarJan DollarModerator, RN, retired
Jeane, I guess I didn't realize how long you have been struggling with this. No wonder you are feeling sort of at the end of your rope. I agree that this seems like a combination effect of the stricture along with the cuffitis. And, if there is chronic ischemia, there is not much to do about it medically.

But, the fact remains that you do respond to Cipro, even though that is not the typical treatment. If it was truly refactory, you would not respond to any treatment. It may mean this is Crohn's, and that may even be why the stricture is so persistent.

I do agree that there is no point in staying on these medications if you are not feeling adequate relief. But, if the Cipro helps enough so that you are functional and feel human again, seems worth sticking with, at least through the holidays while you decide your next step. If it helps at all, I also am on many medications that I did not expect to be on. But, I am happy because I am functional.

While only a small percentage wind up with failure, those are real people. I hope that does not turn out to be the case for you, but I'm sure you'll figure out what is the best option for you. I am sorry you are having to suffer this way.

Jan Smiler
L liz11Member
jeane.. just wanted to say.. thinking of you today.
You must really try to not look backward. I was there too, my time with my connected jpouch was far more miserable than the worst of my UC days. And I had bad UC, so bad it required emergency surgery. But you can't change any of that now. You have to try to do what you can today for today. And then tomorrow for tomorrow.

So, I vote for you to get back on the drugs.. cipro, etc.. that you know work. And hang in there awhile with them so you can get the burden of pain off of your shoulders for awhile. Get through the holidays.. trying your darn best to not worry about what pills your are taking or what drugs you are stuffing up your backside. Just try to reduce your suffering, get some pain relief and functionality back.

Then in the new year.. maybe you will be able to think a little clearer and go forward with whatever step you deem is right for you.
wishing you positive thoughts.
liz.
J jeaneMember
Thank you for the words of encouragement. I think the absolute worst part about this whole situation is feeling so incredibly helpless and seemingly having no control over what is happening to me. The thought of being forced to make a decision that may require more surgery to try and salvage my situation and not knowing whether that will fail or not, is so hard to come to grips with.
NurseAlexNurseAlexMember
Boy do I relate to all of this!!! When I had UC, I had a completely different set of symptoms. I hardly EVER had pain, in fact the only time I ever took pain meds were the two surgeries and once when I had my gallbladder out years prior. Now I take the darn things daily!! I have shoved more foams, creams, suppositories, fingers and of course "the torcher device" Hagar dilator up my rear in the past year and a half than I EVER did when I had a colon. I'm also taking fiber, colace, Xifaxin, VSL#3, Levsin and a myriad of other supplements daily that I never had to take before. It gets frustrating, especially because my first 5 years post surgeries were FABULOUS!! No problems whatsoever!!

With UC, it was more the urgency, aches, pains, fever. I never had "pain". I think that is the worst part. Chronic pain takes a toll on a person... Physically, mentally and if I'm not careful... Spiritually as well. It REALLY sucks! What I struggle with most is that I have complete control, no urgency and have awesome pouch function. I hate the thought of losing that and going back to an ostomy (even for a short time). I LOVED my ostomy when I first got rid of my colon because it gave me freedom. I wasn't chained to the bathroom anymore. Well, I don't have that issue anymore... It's the PAIN this time.

All I do ( or try to do) is pray and trust in the process. It is really difficult sometimes!!! I have no idea what the answer is but I am trying to keep an open mind!
J jeaneMember
Alex,

Please report back what treatment may be helping you. I started xifaxin a couple of days ago and it has calmed down my cuff. I would much prefer to take this over cipro. I also take the nitroglycerin (I think?) gel for the fissure but I get a nasty headache within 20 minutes of using it so I have to be in dire pain to apply it. Finally, I am sure to insert one canasa a night all the way up past the anastomosis to help with any inflammation there and possibly stretch the anastomosis a bit(if this is even possible) to help with my stricture. I am using hydrocortisone 10% (cortifoam) per Jan's suggestion over anucort two times daily as all those suppositories were really causing me more discomfort.

I have plans today so I pray I will be able to enjoy the day without excessive pain. Hopefully it will brighten my spirit also.

One last note that I asked Jan about before:
I have a concern about the possibility of abscesses or fistulas forming from this chronic cuffitis. I have never had an abscess before but have read up on the symptoms. I will be paying very close attention to this as if I move forward with surgery I want to do it before I get into a more troublesome situation that may further limit my pouch advancement surgery success. I do know one girl on the board who is now in this situation with a vaginal fistula from chronic cuffitis and is having pouch advancement surgery also. I pray I do not end up in this position by trying to treat this issue medically versus moving for surgery now.
Jan DollarJan DollarModerator, RN, retired
I am unsure if chronic cuffitis would lead to abscess or fistula, but I suppose it is a possibility, particularly if there is ischemia. I had an anastomotic leak and presacral abcess, but it was related to the surgery itself, high dose steroids, and delayed healing. The leak had sealed by the time the abscess was evident. Cuffitis wasn't even an issue yet as far as I know. But, it makes sense that the constant inflammation could cause it. This would especially be true if your actual diagnosis is Crohn's and not UC.

Jan Smiler
Jan DollarJan DollarModerator, RN, retired
That is the big enigma we all face,the uncertainty of the diagnosis. That is why we just have to go forward with the best educated guess available at the time and hope for the best. It is not just us either. No person in the world really knows their future. Any one of us could be hit by a bus or develop an as yet undiagnosed disease, or receive great fortune.

Accepting that I don't have control helps me find joy in every day. But, I know it is difficult, if not impossible when you are distracted by pain. That is why I was happy to take medications that may have side effects in the future. For me, being functional now was more important than side effects that may never happen!

Hope your weekend goes well.

Jan Smiler
NurseAlexNurseAlexMember
Jeane, I too take cream rectally for a fissure. The two I have been on are: Nifedipine and carafate, both yielding good results and do not cause the side effects of the nitroglycerin. I had a pretty nasty fissure when all of this started but I now have no fissure at all. I continue to insert the cream for two reasons...1) It helps to keep me from getting the fissure again (at least that is what I chose to believe); and 2) It helps with lubrication when I self dilate with the Hagar 15mm dilator.

I also do cortifoam instead of suppository and Canasa 1000mg (sometime twice a day). I take hydrocodone for pain and Valium to help relax me for dilations. I also take Hyoscamine antispasmodic twice a day, 2 fibercon tabs 3 times a day, multivitamin once a day, VSL#3 once a day, and 100mg Colace as needed, and a 10 day supply of Xifaxan approx every month. Like I said, I take more meds now than I did with active UC!

I would ask about the different cream options though because nitroglycerin is awful for headaches and the other creams have been very effective...
J jeaneMember
Thanks Alex. What is colace? Does the xifaxin seem to help with the cuffitis? I have been on it four four days abd although it helps thicken the stool, my cuff is still irritated and bleeding at times.
Also, how long have you been taking cortifoam and is your surgeon or gi concerned about skin thinning in your anal area?
I am so sorry you are suffering like me. It is comforting knowing you have someone who understands this pain that you can communicate with.
I am afraid to self dilate. I do use the Canasa as a means to open up the snastomosis when inserting it. It really burns my area more do I have been backing off of it. I almost feel as if my anal area is also narrowing due to all of this stuff going on. I'm really worried I'm going to lose my pouch over this lousy two centimeters of stubborn disease.
NurseAlexNurseAlexMember
Colace is an over the counter stool softener... I use it in conjunction with the fiber to keep things "bulked" up but also "soft" so it is less irritating coming out. I would only use that if you dr recommends and you don't already have "watery" stools cause it could make it worse I think.

I am fortunate for the most part... I am going to ask about Cipro in my follow up tomorrow.

In tems of self dilation, it takes some getting used to but it really does help keep things "moving" and the site more open. When the anastamosis site is stricturing, I definitely have more discomfort and trouble emptying...
J jeaneMember
Alex,

What I am experiencing now is really odd. It feels as if the lower anal canal is now restricting/narrowing and most of my pain and discomfort is at the very end of the canal, however I do not think it is a fissure as I have had those before and this is nothing like that. I do know I have an anal ulcer at the very lower end of the ATZ and not to be gross, but I have used the finger check with lubricant just so I could tell what was going on down there and and I can feel it clear as day (raised, bumpy bulbus like feeling). This has been there going on a year and just will not heal.

The pain is so bad for a few minutes after emptying my pouch (burning anf irritation) that I often need a hot tub or use lots of cocoa butter after and then it seems to subside until the next bowel movement. I am also passing blood at times even using canasa and cortifoam and now on Xifaxin. It seems the only antibiotic that keeps my calm cuff with no irritation, pain or bleeding is cipro so I may go back on it to get through the holiday. I was never on this med before this surgery as I am sure you can relate.

I honestly think aside from the stricture my cuff is ok. Most of the inflammation is in that last lousy centemeter of ATZ area right above the very opening of the anal canal. How can this small area give us so much trouble and pain? I keep wondering how are they going to suture my pouch to this area with all the issues I am having with it if I go for pouch advancement surgery.

Also, I am restarting pentasa today as I really feel I need time type of oral medication to try and get this better controlled with the hopes of being ableto go off antibiotics.

Finally, does it sometimes take you like 4 or 5 passes within the same period of being on the toilet to fully empty your pouch? Even when I think it may be emptied if I use the squirt bottle like a biget, there is always more stool that needs to be released, again causing me to think the ATZ is narrowing due to all the inflammation and possible scar tissue. Either this or the stricture is causing me to have trouble completely emptying like you.

Does your GI think you can maintain this treatment pattern? How often do you dilate? My surgeon was opposed to self dilation, but then again he is not living with the daily pain we have to simply have a bowel movement. I am going to ask for the other creams today as the nytroglycerin is killing me with the immediate headaches after.

ooh I forget.. how long have you been using cortifoam? I get conflicting reports on this. My surgeon does not want me on it long term due to skin thinning (and my Gi agreed) and Bo Shen says you can take it forever.
NurseAlexNurseAlexMember
Hi Jeane,

I went to surgeon today and he said my self dilations with the Hagar dilator seem to be working. He easily was able to pass his index finger through the opening with minor discomfort. Of course I had self medicated before my appointment...but nevertheless the opening is seeming to be staying more open. That is the good news.

Knowing that, it seems that since I am still having considerable pain, it must be the irritation at the cuff that is causing the pain. I spoke to him about my research here and he agreed to try me on some Cipro. I was given a RX for 500mg 2x per day. I am hoping that helps. If it does, he is willing to try me on long term antibiotic treatment which is a lower dose daily for a month than alternate with Flagyl. I generally have a horrible reaction to Flagyl though, so it will take some convincing for me to take it...

As long as I am dilated, I have a much easier time emptying the pouch. When I am strictured I can tell right away because it is harder to empty my pouch and my stool is runnier and burns more.

I'm pretty sure my fissure is healed but I continue the cream to keep it at bay.

As bad as self dilation was at first, it is not really that bad as I get used to it. If I do it everyday as directed, it is much easier as I go along. It may be something to look into. I used my gloved middle finger before starting the Hagar dilator and I've gotten used to the dilator. It really does help in the long run.

The only side effects I've gotten from the cortifoam is like any steroid...weight gain and irritability. I HATE steroids of any kind but as long as I only do the enemas once a day, I seem to do fine. I do them in am and the Canasa at night.

I take fibercon 2 tabs each time I take one 100mg colace. I do that three times per day and I also take the antispasmodic Hyoscamine/Levsin morning and night.

I am hoping that the Cipro will do the trick!

Alex
A athenaMember

Wow. I'm so grateful for this group. I'm an MD, and I am in the same Hades as many of you. Still working but miserable with chronic pouchitis and a huge cuff ulcer. I'm so tired of having no hope. I just found a new GI guy who has many more ideas than my surgeon, who isn't even willing to treat the pain or spasms, and I am hoping he will be able to help me solve this, after months of suffering. I don't want an ostomy again, so I dutifully shove meds down my throats and up the other way, and I feel absolutely lousy. I hope that in the time since your posts, you have found answers and solutions. Flagyl and cipro both are miserable for me, and the rectal meds burn awfully, but the pain from sitting, walking, and moving is bad also, so I don't have much choice but to deal with the treatment.

best of luck to you all!

Athena

A athenaMember

Thanks for the info! I guess I should elaborate a bit on the past, as others have here. I'm 5 years post pouch, complicated by sepsis and pelvic abscess postop. I became severely anemic due to hemolysis on remicade, which drove me to surgery 6 months after initial dx. Even prednisone did not put me in remission with my UC, and my GI felt nothing would after a double dose remicade infusion helped for only two days. Single dose worked for a few hrs.

I'm trying Cortifoam for cuffitis because I couldn't get any response from canasa. If I go back onto systemic immune suppression, I will have to stop working, as I work w kids and get every germ they come in with when on the drugs. Still, I will if that is what it takes! This isn't living. I was looking up something else and came across this forum, and felt a bit better to know that this is not unusual, though I hate it to happen to others. I have been so sad about the loss of my 'life' for the last 5 years. I had a terrible time with the ostomy because my skin broke down and it leaked constantly. I am so scared to end up there again... anything but another ostomy. I have terribly sensitive skin.

yesterday I was talking w a patient about wearing a back brace and how important it was. She burst into tears and cried, 'I wish I was normal!' It was awful to see this 11 year old say that, so I shared a very vague description of my own not-normal state with her (minus gory details). But I know very much how she feels, and she calmed down. She has multiple issues, and I had to learn to be flexible about the stuff that is not as critical now. Easier to do this for my pts than for myself.

Sometimes I think I was given this problem  to make me a better doctor, but in reality, I have maximized the lessons in patient care and treatment from it, and now it's hurting my ability to care for others. The lack of sleep from 8-10 bms a night, every night, is really catching up with my memory and temperament. I could just drink liquids and resort to this when I need sleep, but that is not a way to live just to work. It may be time to put my health before my career and call it, but that is sad in a way--trained 10 years after college only to practice for 10. And the last 5 years have been a battle to stay healthy and still do what I do at work. I made it for a while by putting all else aside, but that is exhausting.

Anyway, thanks for listening. I know everyone here understands this inner conflict far better than my friends and family can. They see the outside, not the inside. I am lucky to have a dear friend who has a j pouch for the same reason, 9 years out with minimal issues--doesn't even need the diarrhea meds that I still live by. She even has a little boy who is 3. I talk w her because she had been there with the severity of her UC. TPN for months, all kinds of mess. But she got the right care from the start, while I didn't, and our contrasting results speak to that. I'm so glad she is well. 

By the way, my surgeon was totally unhelpful with chronic problem management. I'm working with a new GI who is much more hopeful. But we are digging me out from such a deep hole that it is hard to believe it can work. As a surgeon myself (different field), I was hurt by how he washed his hands of my concerns months ago, leaving my pouchitis to fester until I could get in with the new GI. That is very poor care. I'm tempted to write him a letter filling him in.

Have you had any experience with bone broth reducing gut inflammation? I'm strictly allopathic in my beliefs and training, but this would not be tough to try out... that's what I was looking into when this forum popped up on google. ��

Happy holidays to all--I am looking forward to the chance to rest! Working the whole time but it will be slow hopefully. 

Athena

 

 

 

 

Next

Add Reply

Views: 1,917
Post
Copyright © 2019 The J-Pouch Group. All rights reserved.

Membership Required

We're sorry. You must be signed in to continue. Sign In or Register
×
Are you sure you want to remove from your Block List?
×
Loading...
×
When you block a person, they can no longer invite you to a private message or post to your profile wall. Replies and comments they make will be collapsed/hidden by default. Finally, you'll never receive email notifications about content they create or likes they designate for your content.
Note: if you proceed, you will no longer be following .
×
Link copied to your clipboard.
×