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J-Pouch ForumsHelp! Need advice now!
Leg cramps and now arm cramps
LewLew
CeeeeCeeee Sharon......I like my gin "neat"! Two large olives, ice and gin are my favorite. Thank God my J-pouch agrees! In fact, the biggest pluses for me in having my colon removed and a J-pouch created was regaining my ability to drink martinis and eat mega salads! What more could a person (me) wish for? [ more ]
Lew Dianne I think we were using Ivory Soap too! Regarding the magnets, my wife went to the Dollar store and bought them (a lot of good stuff ones out of that lowly Dollar store LOL). I have to believe it was the magnets that stopped my restless legs. (Really not something I would normally put my faith in LOL). Lew [ more ]
Jeffsmom Lew, what kind of magnets? dianne [ more ]
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J-Pouch ForumsHelp! Need advice now!
Seal leakage with illeostomy
D.D.D.D.
D.D. I think your last suggestion is what could be happening. I was thinking the same thing. Thanks for replying. [ more ]
Jan Dollar Maybe with the morphine on board you are just active enough to break your seal, that would have held if you were not as active. I am thinking that maybe you are bending and twisting more. If your ostomy placement is in exactly the wrong place, it might make a difference. Another thought is that the morphine slows/relaxes your gut enough to cause more retraction (I am assuming you have a loop ileostomy at present). A retracted stoma can cause leakage under the wafer. A convex system and/or... [ more ]
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J-Pouch ForumsHelp! Need advice now!
pain/cramping
N nathan1975a
nathan1975a Thank u for the reply any advice is welcome [ more ]
Jan Dollar Many of us suffered with inflammatory bowel disease before colectomy, and we also have IBD related complications post op. But, for you, that does not seem to be the case. A couple of things come to mind. First, and most likely, is the probability that you have problematic adhesions (internal scar tissue that prevents normal movement of the intestines). These do not show up on imaging, unless they cause an acute complete obstruction. Anyone who has had abdominal surgery can have adhesions,... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Bad Reaction - Cipro/Canasa
M MShampan
jeane I have high regard for Dr Shen. , however I always experience flu like symptoms while on cipro. I am on it now and have severe muscle aches. My GI who trained under him said many people get joint and muscle pain while on it. I do agree that a c diff test is a good idea. I often have them whil on cipro. [ more ]
Madi78 I just started a 14 day course of flagyl and cipro for pouchitis and cuffitis and I'm the same. Very fidgety and lots of insomnia with cold night sweats but decided to tough it out to hopefully resolve the issues. But honestly not sure which is worse right now. [ more ]
MShampan Thanks everyone. I started emailing with Dr. Shen, who everyone seems to love. He's been very helpful. He said that Cipro doesn't usually cause flu like symptoms and he wants us to have Mike checked for c diff. I guess the antibiotics can make dormant c diff active. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Obesity and Jpouch surgery
M M&MRN
mh3609 I guess it all depends on how risk averse you are that determines your viewpoint on the issue. All these factors do increase the risks of the surgeries. So it is personal preference on if you prefer a more conservative approach or those that are more aggressive in their assessment. Based on personal experience I was extremely risk averse because of my mother passing away 2 days after a surgery where the surgeon was really aggressive in his treatment. So I probably would have done anything my... [ more ]
katenet Jan I totally agree with you. [ more ]
M&MRN I have had a fecal transplant. It didnt work or was ineffective due to the damage and inflammation of my colon. My GI even placed some in my small intestine for good measure and he said it all "followed him right back out". He also said my colon was so inflammed that it had shortened. I was thinking...if I have to face something so difficult I wasn't a surgeon with a "can do" attitude. It is hard enough to deal with UC and C. Diff without extra negativity. This is my 4th time with C. Diff in... [ more ]
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J-Pouch ForumsHelp! Need advice now!
blockage?
U UjohnjC
UjohnjC Stoped taking all lomitol Imodium still no bm how long can blockage last? See dr tomorrow afternoon drinking lots of water and tea and white grape juice [ more ]
dtmack Possibly yes. With a blockage, the pain comes in waves and tends to get worse. Very little will come out until it passes. Recommend warm drinks like coffee or tea, soup, or white grape juice. Walk as much as possible, If it gets real bad or you start to vomit, head to the ER. Good luck [ more ]
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J-Pouch ForumsHelp! Need advice now!
I'm done!!!
U UCBloke
Jeffsmom He does have his stoma back. In that respect he is feeling better but unfortunately he is addicted on the pain medications and trying to get off them. What a difficult process that is! I wish I could get him out of bed, the doctor said that would help, for him to stop laying around and not getting out. But he feels so crumby from all the meds. Hopefully he will be off of them in about two weeks time. I'm getting my break! I'm leaving for Florida tomorrow for a few weeks. Then I'm meeting the... [ more ]
UCBloke Sounds like the poor fella needs a break from it all.. Rough road!! Surely can only get better I have no doubt things will improve when he gets back to a stoma.. I have 18months of zero issues, and maybe he can retry the pouch in the future Again, wishing him a recovery of whatever route he ends up with.. Although you need to stay strong you need a break from it all too!! (Easier said than done I know) [ more ]
Jeffsmom He had his entire large intestine removed June 2014, then he had his takedown in September 2014. We had a few serious complications that took a while to figure out, but in March of this year the decision was made to take him off the j-pouch and give him back his ostomy. The complications he has are rare and difficult so our surgeon is sending us to The Cleveland Clinic. We may be going out in June. Not sure yet, the surgeons need to talk. It's been a really long haul. [ more ]
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J-Pouch ForumsHelp! Need advice now!
help for me
S shriramyadav
shriramyadav Pls .if you have any idea for working visa for me pls help.i am so help less. [ more ]
Jan Dollar Ah, I see. You want to relocate and are hoping to find a job lead here. I don't have a clue on how to help you there, but maybe someone will have some search ideas for you. Good luck! Jan [ more ]
shriramyadav thanks for reply me .After having j-pouch i can not do physicaly hard work.in my country currency weak from other country currency.here i am not earning well which my familly life good.so i want to go another country doing for job.my income condition is very poor now.some property has sold in my surrgery.no body help me here.so i decide to search any one who can help me like a freind or brother in whole world.dear brother i want only with you i know every thing in videography... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Abdo pain....cause?
V van
Sln I take amitryptiline every night to help with chronic pain. It also helps me sleep better and reduces the number of times I have to use the bathroom at night. [ more ]
Gentle Now I'm wondering the same thing. Around my old stoma site, it is very tender. It hurts whenever I tighten my muscles and also if I push on it. I suspected a hernia, but doc didn't feel anything, and it's not quite so specific to one point; more general in that area. I did an all-night search on adhesions on this forum, and suppose that could be it. Could it also be something simple like a strained muscle or healing pain (I'm 3 months out)? im not sure how to take care. Should i wear a hernia... [ more ]
Scott F Adhesions typically can't be reliably diagnosed without looking at them directly (surgically). When the symptoms act like adhesions, and no other explanation can be found, adhesions are suspected or presumed. That's the state of the art, unfortunately. Most people who've had abdominal surgery have adhesions. Only a fraction of them cause significant trouble, when they happen to be located in unfortunate spots. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Enemas
BA Bill A
Jan Dollar The only VSL#3 that may be covered is the DS (double strength) which is by prescription only. But even then, it may not be covered, as it is classified as a medical food. If you go to the Pouchitis forum, there is a featured thread regarding a comprehensive article about pouchitis treatment. There is a link to the article there. the post is here https://www.j-pouch.org/topic/n...icle-about-pouchitis It probably would not hurt to try mesalamine enemas. They just are not considered... [ more ]
Bill A Could not find post of measallamine. 1 year post 3rd stage and with themorphine sulphate have a life Nothing else worked. They checked for poucities and cufitis I am told at my age I will proably be on it for life. Intestines already addicted. Sine I have a large supply of enemas would it have any advantage in preventing pouchitis. Also I was advised that vsl-3 was best probiotic. It is expensive and not covered by insurance as a vitamin Does anyone have advise please [ more ]
desisn00ps I used Budesonide and Butyrate enemas successfully for 2+ years to keep pouchitis at bay. Mesalamine enemas (Rowasa) didn't help me at all. Feel free to PM me if you have additional questions. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pain & Urges
C Country
Fixmeup HOpe your surgery goes well. What do you mean when you say you will need to be dilated? [ more ]
Country Just as a follow up. I will have surgery next Thursday (4/16) for scar tissue inside where I was connected inside the rectum that has me about closed up. He said he would have to scrape as he couldn't do the finger exam. I'm looking forward to the surgery in hopes it allows me to get a bit of a life back and eat more than mashed potatoes :-) [ more ]
Country Thank you SilMarillion, I do use Calmoseptine regularly and love it. When times are real bad I add a layer of Dibucaine Ointment 1% under it to give a numbing effect. I'm going to be checked next week to see if I need dilated. I kind of hope that's it as it's a quicker fix in the hospital. Summer's coming and I want to be able to walk around move without the intense urges, pain and occasional accident to cause irritation!! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Excruciating anal burning
G Gr8Mamacita
Jan Dollar Sounds to me like you have a fissure, if water or Vaseline burns. Slow the output however you can. Take frequent sitz baths. Dilitazem cream (prescription only) can help heal. Last resort is Botox injections. Jan [ more ]
rachelraven My favorite back in the day was A&D, but since Vaseline burns you, it might too. How about Bag Balm? I havent had irritation issues in years and years, but with my more recent issue with a fistula, Sitz baths are soothing to me If necessary. Haven't needed them in awhile, but I'd fill it with the hottest water I could stand and just soak my butt, then apply a cream if necessary. I tend to like petroleum based creams best. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Blockage???
J JessGoguen
Jan Dollar Yes, you can get polyps in your pouch. With FAP you need regular follow up to check for this. Any of us can be prone to partial or full obstructions. Whether you need to be seen largely depends on the severity of your symptoms. But, if you think you have an obstruction, you need to stop solid foods, stop all bowel slowers, and increase fluids. It can take a few days to resolve. But, if the pain becomes severe or you cannot keep fluids down, you just have to go to the ER or urgent care. Jan [ more ]
Rittenhousecm I am also having pain in my right side. I am having bowel movements but not as often and have not had to take any lomotil for 2 days. Could I have some kind of blockage or beginning to get one. My surgeon is 5 hours away. Do you think if I called my family physician he could help. Should I start there and let him tell me to call my surgeon. I also have autoimmune diseases (lupus, plus others, neuropathy, and in October had a mass of fibromas removed from my brain.) Having to make the 5 hour... [ more ]
Spooky JessGogue, It's been a couple of days. How are you feeling? Did the blockage pass? I can totally relate to your feelings about the ER. I also loathe it because they don't know what to do with me. The last time I was there for a blockage, which was in September of last year (on a Sunday, of course), the ER physician had absolutely no clue what a j-pouch was, despite my attempts to explain it to him. I actually don't think he was really listening. He twice asked me to show him my ostomy bag... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Sacroiliac PAIN
DonaDona
Megan Dona, I feel like I have a lot of sugar swings too, maybe I should bring it up next time. Good luck with the diet, hopefully that and hydration will make you feel better. Sharon, You got a lot of news today!!! Sounds like a very aggressive regiment! I hope what you're able to do give you relief! [ more ]
skn69 Thanks Megan, Saw the Rhumy tonight, He took x-rays and confirmed the massive degeneration of discs in the lower lombard region, twisting of the sacroiliac and a tilted, rotated pelvis (not surprised, I have rather severe scoliosis)... For now he is fighting it with 1000mg naproxin s 2xs/day (horse dose), tramadol for the pain, ice, PT and he has suggested that I do a 'thermal treatment'...3 weeks in a sort of thallaso therapy center where they treat me with hot see water and massage. Not... [ more ]
Jan Dollar High blood sugar should not make you lightheaded. It is low blood sugar that can make you lightheaded and shakey. Both my husband and I ha e type 2diabetes. More likely dehydration. I have been able to keep my blood sugars and HbA1c within normal range with just diet control. My husband has not been so lucky. A big reduction in your carb intake should make a big difference. Good luck! Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Living with fistula
S Sln
GinLyn So odd, the things that are used regularly in NA as opposed to here, and I'm sure that is true for Australia, etc. For instance, setons are very rarely used here, but the plugs with the extra cells are used regularly! I don't think they use stem cells here, however -- or at least that's not what they used with me. It was extra white cells spun together; they are having great success with it and are using it in a wide variety of surgeries. Remicade is also used here, although more sparingly. [ more ]
LHetti I had r/v fistulas instead and had two setons for 3 years, but they didn't hurt. Remicade really helped me for two years (setons were still in then). In the end, I went for the perm. ileo. as my Crohn's was getting worse in the cuff and the fistulas were just making new tracts. I'm sorry that I'm not the success story you're looking for, but wanted to at least call out Remicade- it's the one proven to close fistula tracts. [ more ]
rachelraven My GI's friend/colleague is doing clinical trials for fistula plugs that get entrenched with stem cells, and it's showing promising results. My hope is for this to work for me eventually. They don't do plugs, because of the high fail rate with the glue alone, but the addition of stem cells is showing better results. But it's not "out there" yet. Hopefully soon! [ more ]
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J-Pouch ForumsHelp! Need advice now!
surgery scheduled for may 5, doubting my decision
N nharr613
Scott F I had my surgery 1600 miles from my home, which certainly counts as traveling. My brother lived in the area, though, so I was able to stay with him on discharge. Also, I had a single stage procedure, so I only had to go through it once. [ more ]
Mysticobra I found out for sure I had UC at 40. I will be 59 in a few months but had my colon removed at 58. Elective. I chose to. Looking back I think I had it all my life. Just no big enough flare till 40 and was sick as a dog. But simple meds put it in remission for 10 yrs. From. 50 till 58 I was up and down with it. I was like you. OK most of the time. But had flares. I won't go into details. We all know. After my surgery I had the worst time in my life. Problems cropped up... Not the surgeons... [ more ]
Jan Dollar Yes, I agree that your ongoing use of topical meds will improve the appearance of your rectum. But, that does not mean it is not affected. It just means that portion is responding to topical treatment. So, you are right that your decision to go forward seems right for you. One caution I must put forward at this point is in regard to your desire to go forward with surgery to avoid medications. Please do not place your idea of success on whether you are able to be drug free. It simply is not a... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Possible obstruction?
SassyanSassyan
tulsamom It doesn't sound like a typical obstruction which usually comes with sharp pain in mid abdomen and nausea. I'd look at other ideas.. [ more ]
Scott F If you're not having pain I'd also consider a stricture a possibility, and there are other less likely possibilities. Have you scheduled a GI appointment? When was your last pouchoscopy? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Takedown- Leak - HELP!!
T tango9
Jeffsmom Tango, funny you should ask. My son just went through this. In Dec they found an abscess near his pelvic bone. They put in the drain. In Jan they found the fistulia. Put him on TPN. Was on TPN on two months. unfortunately it didn't work. The fistulia actually got larger. So, on March 12th they reversed the j-pouch to put him on complete bowel rest. So now, he has his ostomy back for 6-8 months. Hopefully you will have better luck. But I have to tell you, being on TPN is extremely difficult. [ more ]
tango9 Has anyone had success and avoided more surgeries by going on TPN with a drain to get rid of a fistula post take-down? [ more ]
GinLyn Of course you are frustrated!!!! Probably a bit frightened as well. I did not have exactly that problem, but did have my own shares of ups and downs. Hang in there -- and yes, I know exactly how impossible that seems. Perhaps they can repair the leak when/if they go in surgically, but if there is too much fecal loss you run a major risk of sepsis; it is truly better to be safe and go back to the ostomy for a bit and get totally healthy again before trying the pouch. So sorry, Gin [ more ]
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J-Pouch ForumsHelp! Need advice now!
Itchy & Raw
N Nancy17
Ljz I'm sure you're suffering because of frequency and acidity related to output being from small intestine. Itchiness could be related to fungal infection from all the moisture. My doctor prescribed Nystatin, though there are other meds that could help too. I use Ilex paste as a barrier cream- have to order online but made all the difference for me! You have to clean it off with Vaseline as it sticks really, really good! hope you feel better soon! ljz [ more ]
sunshine24a hi all new to the group ive had my Jpouch since 2004 when I've has the burning going on I use PawPaw cream always have a tube , rarely need it now , just on toilet paper a bit 1/2 teaspoon takes the sting out nearly straight away relief whoo hopefully helps x [ more ]
TE Marie Thanks for the tip! I've discovered that using a bidet with warm water also promotes emptying of my j-pouch. As the water is cleaning it promotes other BM's which is great for those of us who go and then have to go again 15 minutes later. [ more ]
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J-Pouch ForumsHelp! Need advice now!
total colectomy wiht j pouch
bederyparisbederyparis
skn69 Bederyparis, Did you say that you are in Paris? Who is your surgeon? Where are you being followed? There are certain surgeons who speicalize in open surgery and others do the j pouch through laporoscopy...I feel that the less they open you up the better. I agree with Jan, better a pouch than colon cancer. Some people are 'pouch lucky' and their body's adapt and settle down within 6 months...they go back to a new 'normal' life where they are pretty free to live any way they like and do not... [ more ]
CTBarrister For me, it was also a dramatic change for the better. I didn't have cancer but I did have dysplasia, and my colon was very close to perforating. If I interpret your post correctly, you are trying to choose between ileostomy and J pouch. I quite frankly hated the ileostomy when I had it, and even though it was a temporary loop ileostomy, there were clearly signs that I was going to have problem with any type of ileostomy. My skin reacted severely due to placements of ileostomy bags resulting... [ more ]
Jan Dollar For me, it was a fairly dramatic change, for the better! I was in a severe refractory flare with 20-30 BMs per day by the time I opted for colectomy and j-pouch. I have a higher than average frequency, more like 6-10 on my good days. Imodium (loperamide) does reduce frequency, but I try not to try to thicken my output too much. It can take 6-12 months before things settle down to what your long term function will be. Sure I can do long haul flights and travel, but I plan well. I take extra... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Conflicted :(
S SemirA
Spooky I agree with what others said. Despite what you may read and what some doctors may tell you, a j-pouch is not a cure, nor can you ever expect to be the way you were before you had UC. But for the majority of people who undergo the surgery, there is a significant improvement in quality of life compared to when they had UC. Although my case was atypical in that I went only 3 weeks from the time of my UC diagnosis to surgery, my surgery was done as an emergency. I was critically ill going into... [ more ]
skn69 LIfe and experience changes things. What seems like a big thing or a deal breaker at 18 seems like a cake-walk at 30 or 40. 3-4xs/day? That is a gift. Do not have major surgery until you must. This is not a preventive measure or a cure as Jan says but a trade-off so beware. Some people have a very easy time of it, a few (3-6) months of difficulty with liquid bowels and then a life where their pouch behaves nicely forever. Those people are not posting on this site. They are very busy living... [ more ]
CTBarrister Don't wait too long and get toxic megacolon.......that's what almost happened to me and my colon was dissolving in my surgeon's hands when it came out, per what he told me. If it dissolves from the inflammation while it's still in your body (and you won't necessarily know it's happening because it will feel like your typical flare), things will get dicy..........4-6 bowel movements a day is not the end of the world. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Burning and Itching
J Jodih
Good to be healthy Imodium and Zantac help me [ more ]
Ljz Good luck! My mornings better too! Hope the Immodium and Ilex make a difference! Keep us posted! laurie [ more ]
Jodih Thank you all for the suggestions. I received my tube of Ilex today and will give it a try tonight. It seems evenings are worse than the daytime. I've tried calmoseptine and it did nothing for me My surgeon finally let me start Imodium and I think it's helped. Thank goodness every day seems to get just a little bit better. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Obstruction?
L LisaT
CeeeeCeeee I'm in classrooms all the time (supervising student teachers) and the scariest ones are preschool classes. Yesterday, the kids, the teachers and the assistants were all sick! The minute I left their classroom I washed my hands up to my elbows, practically bathed in Purell, rinsed/gargled my mouth with mouthwash and sprayed my nose with saline solution and blew, blew, blew! I'm keeping my fingers crossed that I didn't catch whatever was so abundant in that classroom! I'm really paranoid about... [ more ]
LisaT Thank you, Jan for the quick response. My gp didn't mention it to me last week, but I will call her tomorrow to double check. What's kind of interesting is, I was on Remicade for 2.5 years and NEVER got sick! I've been off of it for 8 weeks, and I've been sick as a dog. As a middle school teacher, we're near more germs than a small country! [ more ]
Jan Dollar I suspect it isn due to your virus. Even though it targets the upper respiratory system, the effects can be more broadly systemic. Long story short, many of us get gut symptoms with any sort of virus. You absolutely would have serious abdominal pain if you had an obstruction of any import. Are you sure you are OK to travel with the bronchitis (not to mention exposing others to the virus)? Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Leakage from incision
JeffsmomJeffsmom
Jan Dollar Seromas can continue to produce drainage until the pocket collapses, so don't worry about that. I've had personal and professional experience with them. They are a nusuiance, but pretty benign. Hope the Tegaderm helps. If not, try trimming the wafer so that there is enough of a dry margin away from the incision, even if it means a smaller area of coverage. Jan P.S. Tegaderm is a cool product. I remember when it first came out. It was a really revolutionary product for dressings! [ more ]
Jeffsmom Oh great! Thanks Jan!! That would our luck. I just told him not to squeeze it. That it could make things worse. I'll call the surgeon tomorrow, but they only see patients on Weds, and Thus. I may just end up in the urgent care. The drainage amount has not lessened, not worse either. It just keeps coming out and coming out. It ends up leaking under the wafer no matter what we put on. I've tried waterproof band aids, gauze under the band aids, today I bought Tagaderm with the hope that that... [ more ]
Jan Dollar Discourage squeezing the incision! This could backfire and cause the internal sutures to fail and expose him to an infection that is deep, as opposed to a simple external one. Let the surgeon mess with it if it needs it. A teaspoon a day is no big deal, but let it drain on its own. I had a peritoneal leak that was saturating heavy dressings in a few hours. That thing took a couple of months to heal and it was the beginning of a cascade of complications that were rather huge (with my... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Barbie Butt Surgery
D desisn00ps
desisn00ps Thanks so much, Sharon. I'm going to Cleveland and Dr. Shen is going to try injecting D50 to help scar the area to close it. Plus, I'm going to keep having the area curetted by the surgeon. Let's see how that goes otherwise maybe a wound vac or God knows what else. I've been having extraintestinal manifestations again and am being told there is IBD in the wound (lovely!)...I'm pretty scared of all this but am really hoping for the best! If anyone has any other thoughts, I would appreciate it! [ more ]
skn69 Desisn, Although it has been over 35yrs I still remember it being difficult to heal shut. They did not suture it completely but left it partially open and draining plus a hemovac to remove all of the accumulating fluids. It was rather uncomfortable and I felt constant pressure and urges. It took +/- 2 full months. I sat on an inflatable ring and used ice packs in the middle of it to reduce the swelling. I still get pressure down there and a sudden feeling of having something in there that... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Gas
J Jodih
Jan Dollar You are doing better than me! Nearly 20 years post op and I NEVER trust a fart! Jan [ more ]
Jodih That's good information to know. Ill give beeno a try. I wondered why they didn't seem to work. The good news though is that im learning to pass gas without messing myself! lol. [ more ]
Jan Dollar Eggs can be gas producing too. Simethicone (the ingredient in all those gas treatment drugs) really does not prevent or "get rid of" gas. It just makes it easier to pass. Your best option is to prevent it from forming. Most intestinal gas is from bacterial action on undigested carbs. You might get some benefit from products like Beano (a digestive enzyme) or even Pepto Bismol (which has antibacterial properties). The good news is that thigs usually improve with time. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
cold hands
U UjohnjC
UjohnjC no fever maybe i am little dehydraded I've had 7 glasses of water today [ more ]
Jan Dollar Could be anemia or dehydration, but if you've had those checked, it could just be your system resources concentrating on healing. You don't have a fever do you? Hormones tend to run amok with healing, inflammation, etc. I've had that problem for years, maybe decades, but my labs are always good. My rheumatologist just chalked it up to secondary idiopathic Raynaud's, which is pretty common. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Throwing up and Less Output
T tango9
Spooky A gastrointestinal virus usually lasts 1 to 3 days but can be up to a week. I have noticed that since having my colon removed, it takes longer for my system to "normalize" again after having such an illness, so sometimes I might feel off for about 1-2 weeks. Given that you are still very close out from your surgery, though, I would keep a closer eye on things. Going to the hospital sucks (believe me, I've ridden out partial obstructions at home because I loathe the ER so much) but if you're... [ more ]
tango9 How long does a virus like that usually last? [ more ]
Spooky I would worry about obstruction as well given that you are only a few weeks out from surgery. But Jan is absolutely right, this could also be a gastrointestinal virus. There is some overlap in the symptoms and it's not always easy to tell the difference right away. But, if you develop cramping that comes in waves or you happen to go more than 8 hours without a BM, this is almost certainly an obstruction and it would be best to call your surgeon or head to the ER. [ more ]
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J-Pouch ForumsHelp! Need advice now!
So Depressed
Mema 1Mema 1
Jan Dollar They can give the Benadryl IV too. As time goes on, you can take your own antihistamine at home before you leave. Jan [ more ]
CTBarrister If you want a suggestion on a book, I just recently got through reading The Red Sparrow by Jason Matthews. It's a really interesting spy novel, about American and Russian spies who are spying on each other, written by a retired CIA agent who served 33 years overseas, including in Moscow. You will learn more about the intelligence business, from the perspective of those actually out in the field, than just about any other spy novel that is out there. I highly recommend. [ more ]
Mema 1 I have horrible veins, so hope it won't be a concern. I'll just make sure I drink a lot of fluid before going in for treatment. Since the weather is still cold, that will be a concern as well since they don't pop when I'm cold. I'll have them get those hot pads as well. Every person that I have spoken to, that is using remicade, said that they give them two doses of benadryl first and benadryl gives me horrendous butt burn, so I'm dreading just thinking about it. With a little bit of luck I... [ more ]
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J-Pouch ForumsHelp! Need advice now!
So sick and tired of being sick and tired
MelissaComptonMelissaCompton
Jan Dollar You've done pretty much everything I would have considered. Sadly, it takes 6-12 months to adapt, but most people see some improvement by the 3 month mark. For real "hard cases" sometimes they try Sandostatin to help slow severe diarrhea. http://www.webmd.com/drugs/2/d...in-injection/details Another strategy you might consider, since most of your bowel activity is at night, is to switch things up and eat most of your diet in the late afternoon and evening, instead of during the day. You may... [ more ]
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J-Pouch ForumsHelp! Need advice now!
thinking about getting surgery for uc
jeremiah johnsonjeremiah johnson
MelissaCompton Originally Posted by jeremiah johnson: i have had uc for 3 years and am thinking about getting the j pouch. i am wondering if someone with a successful surgery that has had there j pouch for a while would talk to me. i would appreciate your time very much I am a little over 4 months takedown and it has been a rollercoaster ride but it is a very personal decision (one I am glad I made) but it is not easy in the beginning [ more ]
ATXGuy I had my first and only UC flair that led to a ruptured bowel last Feb. Emergency surgery for that, and then a J-Pouch created in July, followed by takedown at the end of last October. It's almost five months since takedown, I feel pretty good and for the last few months I've been able to workout. I lost nearly 50 pounds during my first hospital stay (probably could've afforded to lose 20), and the whole process was tough, but I feel pretty great today and, in my early 40s, am probably in... [ more ]
SoccerTAT Yes you will be able to do anything, within reason that is. I play soccer at my university where we practice every day for 2 hours and weightlift HEAVY 3 times a week. With that being said make sure you are healed and take things slow before you do any of that. I took 6 months off before I eased into rehab with light weights and eventually heavier weights. Running was not an issue once I felt up to it and my scars had healed. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Surgery, again
JeffsmomJeffsmom
Jeffsmom Sharon, you are such a sweetheart. I'm doing ok. I'm exhausted, as expected. Jeff keeps wanting me to spend the night but there is no place to sleep. I have a bad back, like up all, I guess, so it makes resting in 2 chairs painful. And besides, Chatty Kathy keeps yapping all night long! But I left him tonight and came home. He is doing much better. Pain is being managed so I don't have to worry about that thankfully. Now I'm getting ready for bed and should be asleep in 10 minutes! [ more ]
skn69 Jeff"s Mom, How are You doing? In all of this craziness and pain and frustration you are not mentionning how you are holding up? You fought the good war, hopefully won the latest battle and will win the rest...but are you eating properly? Getting enough supplements? Taking good care of yourself? I know that in times like these you do not even figure yourself into the equation but you need some rest, some healthy nutrition and some healing laughter. (try calling a girlfriend?) You sound like... [ more ]
rachelraven I'm used to surgeon's taking away IV meds at least a day or two before folks go home, since of course there will be no access to things like IV Dilaudid when you go home. They generally at least like 24 hours of oral meds, to see how things go on them. Oral meds offer much longer periods of pain control vs IV, which act quickly, but are short acting. It's why with a PCA (pump), a patient may be dosing themselves every 8-10 minutes with IV meds, vs oral being, generally, 4-6 hours. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Struggling badly post surgery
HaidalynHaidalyn
rebel Hi Haidalyn How are you doing with the Imodium now? Is food still passing through you? [ more ]
rebel https://www.j-pouch.org/pages/illustrated-pouch Just as a general comment, people with Ulcerative Colitis, Crohn's Disease etc, need to be proactive, bearing in mind that when your suffering the symptoms, your busy fighting a battle to keep well. If you've got family and friends, they can help hugely with all sorts of things, emotional support, research, advice etc. Unfortunately, relying on professionals is 'hit' and 'miss', also, these are conditions that need to be managed daily, they... [ more ]
Jeffsmom I thought the ilium was the right side of the large intestine . Thank you for the information. You would think I would know this stuff! [ more ]
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J-Pouch ForumsHelp! Need advice now!
revised ileostomy surgery
tftf
Jeffsmom Has anyone checked for an abscess and fistulia? They are extremely painful [ more ]
Jan Dollar It is unclear to me what surgery you are talking about. Are referring to a j-pouch revision, such as pouch advancement, where the remaining rectal cuff is removed? If cuffitis is the source of your rectal pain, then pouch advancement might be the answer. jan [ more ]
Scott F Your anemia is likely the cause of your fatigue, and it it should be treatable, regardless of what's causing it. Has your doc told you what's causing it? The pain can be a trickier matter. Is it improving at all, week to week or month to month? Has you doc suggested a possible cause? Some people see improvements out to 18 months (or even more) after takedown, but I can't tell if that's a reasonable expectation for you. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Leaking down under
BranchyBranchy
CeeeeCeeee Try not to be concerned about waiting a bit before you have your takedown. Because I felt so well with my ileostomy, I chose to wait a full year before I had the takedown. For me, this turned out to be wonderful because my takedown was easy and I had a very smooth adjustment to using my new "plumbing"! It sounds like you are doing very well. Best wishes! [ more ]
D.D. Originally Posted by Jan Dollar: Sounds like normal activity. There is mucous shedding constantly and many people have difficulty controlling it. It is not a sign of future continence with the j-pouch. Oh, and do not be alarmed or surprised if some stool bypasses your ileostomy and makes it to your pouch. Jan Hi Jan, I just joined this group to ask the very question that you just addressed in your last sentence. Lately I have let my ileostomy fill up more during the night instead of getting... [ more ]
Jan Dollar I applaud you for your patience, as you wait for others with more dire need for surgery. Your day will come and I am sure it will go well for you! Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Still waking up and night and having accidents
JG Julie Gonzalez
Virdent Have you tried any experiments with diet? I swear my pouch loves me and I sleep best whenever I get one of those bbq chickens from cosco or wherever, nibble on that for dinner with a veggie side or potatoes of some sort. No wheat, no dairy, hey give it a shot one night and see how she sleeps, it can do no harm. =) I am sure those on a more paleo type diet have less cases of pouchitis and over all better pouch health as it seems excess carbs really do fuel bad bacteria in us and we're in a... [ more ]
Julie Gonzalez Thank you Scott and Aragón she is also on Imodium and Benefiber I'm going to increase the amount of Imodium. Right now she takes one in the morning, afternoon, and, evening then two at night. Hopefully this will help her she recently had a doctors visit and they but her on Flagyl and then the VSL#3DS Three time a day. Also I did a type o her surgery was on October 2014 not December. Thank you once again. [ more ]
aragorn My son was the same age with j pouch, and very slowly reduced accidents/leakage over about 18 months. We got up to 12 immodium per day (3 pills 4x per day), with no ill effects. You can get piles of it cheaply online in generics. He also did well with probiotics, and the VSL is supposed to be the best for that. We made pullups part of our normal life, and he doesn't seem to have ill effects from that. He functions normally now (4 years later), with very occasional accidents. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Leakage of stool and blood
C canlafre
Jan Dollar Bleeding is usually a sign of cuffitis. It is very possible there is pouchitis and cuffitis simultaneously. My cuffitis responded to Flagyl, but the bleeding and urgency returned over and over again. I wound up using Canasa for a couple of months, overlapping with Flagyl for a week. I then transitioned to oral sulfasalazine for maintenance. That worked well for about 15 years, before I developed a more chronic/recurring pouchitis. Jan [ more ]
canlafre So the flagyl they gave me worked.but last week I was having pouchitis symptoms. So I called right away and got put on another dose of flagyl. Felt great 24 hours later. Now the bleeding came back this am and I'm still on my latest treatment of flagyl. Not sure why. Gonna call in am. [ more ]
canlafre The nurse called back and she thinks the next step should be antibiotics. She thinks its a severe case of pouchitis. But she had to check with the Dr first. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Tinchure of morphine
A abillusmc
Bill A The use of morphine sulphate has been working. At 71 I am interested in what works. My surgeon is in favor of its use but the GI department is at odds. That have nothing to offer which will work but suggest I have chrons in the upper esophagus to srgure I should resort to a bag. It appears I am in a losing battle [ more ]
clouseau Another option is to try LDN, low dose naltrexone which is what Dr Siebecker the SIBO specialist recommended to me last week, others on the SCD yahoo site are using for pouchitis-SIBO symptoms. You will need an RX, a place in FL I spoke with 2 days ago specializes in it, Skips RX www.skipspharmacy.com . My local integrated MD recommended it as well and that company. [ more ]
Scott F Morphine would be an unusual choice for intractable diarrhea, and unusual choices make people nervous with narcotics, since the DEA is a nasty and merciless watchdog. The most "standard" opiate treatment for diarrhea that can't be controlled by Lomotil and symptom control measures (e.g. Metamucil to bulk and thicken the stool), as well as proper diagnosis and treatment of the cause, (such as pouchitis), is DTO (deodorized tincture of opium). It can be hard to find a doctor knowledgable... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Surgery Consult
Andy1993Andy1993
aragorn J pouch gave my son his life back. He still goes 2-5 times a day, but it's not urgent, certainly nothing like his UC. He plays soccer, tennis, etc., almost anything he wants. Learning to manage the leaking was big, but the only drugs he takes are immodium and a bit of iron. This has been 4 years. [ more ]
EBeck82 I was in your shoes at age 27. It took 12 months for me to heal completely and get control of my BMs again. I'm 5 years out now and haven't had a problem in years until today. I am a social drinker, and alcohol does cause more urgency and liquid stools, but it's very possible for me to drink in moderation. Good luck! [ more ]
Jeffsmom Andrew, so sorry to ready about your difficulties. You are far too young. My son is 24 years old, you may wish to speak with him. Let me and I will arrange it. He was diagnosed at the age of 6 with UC. Last June he had his lg intestine completely removed. Spent the summer on a temporary Illiostomy. We had a lot of problems with the appliances and the bag leaking, not getting the wafer on correctly, and lots of pain. In September, he had his take down. All seemed to go well. He was going to... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Mechanical implant for controlling bowel movements?
T TCM
TCM Thank you Scott, The Cipro is for pouchitis. But based on your comments and another comment from Nancy, I will discuss antibiotics with my surgeon. I am not quite finished with the Cipro prescription but have had night time accidents during the time I have been taking it. So I suspect that will not be a solution but it is still with investigating. Nancy also mentioned using antibiotics, canasa and anucort suppositories. I'm not familiar with the last two but will check them out. I greatly... [ more ]
TCM Originally Posted by Scott F: Terry- I unfortunaltely have to take antibiotics all the time. If I don't, I will have nighttime accidents. This is antibiotic-dependent pouchitis, and while I wish I didn't have it, I'm lucky that the antibiotics work just fine for me. This is why I'm not sure I understand your answer to my question about whether the Cipro stopped the nighttime accidents. You answered "the 500mg Cipro I'm taking is for pouchitis, and it stopped it in its tracks." I'm not sure... [ more ]
TCM Thank you Nancy. I will look into the possibility of cuffitis. I have heard of it but don't recall being checked for it. My surgeon has been terrific and very thorough but I will ask. I am not familiar with canasa or anucort suppositories, so perhaps there is a gem there. I really do get along very well except for this issue. And I travel a lot on business, so am always taking extra protection, bed pads, etc with me. I envy your limited accidents! Thanks again. Terry [ more ]
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J-Pouch ForumsHelp! Need advice now!
Partial Obstruction?
S Solomin
Solomin Hi Ric, Dilation is basically stretching of the muscles to allow for an opening. There are risks involved with dilation - you can become incontinent (too much stretching) and you can get a perforation (low risk of happening). Some people have used for BOTOX for this problem. It relaxes the muscles but it is not permanent as it can last anywhere from 3-6 months. This way one does not experience permanent incontinence. As for the parasites -is it possible that the results (negative) were not... [ more ]
Ric in TX My sigmoid colon was removed along with the rectum, leaving the sphincter intact and somewhat functional (in June 2010), I had radiation and chemo. Since my ileostomy reversal in January 2011, I have struggled EVERY DAY to eliminate. I can’t move the stool along unless I administer multiple enemas with a bulb rectal syringe. I would say that 80% of the bathroom trips result in nothing out (except for translucent, wormlike objects which may be parasites. I had a test for parasites that was... [ more ]
Jan Dollar Sounds like you could have pouchitis. Maybe an anal stricture too. Do you have any antibiotics? You may want to call or email your doc. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Kinck, swelling or obstruction?
L LoveLife
skn69 Lovelife, I have recently rediscovered ginger and ginger tea. They seem to help whenever I am feeling blocked and bloated. I alternate with green tea and grape juice. They are my go-to treatments. I love heating pads and hot baths too. Massages with warm oils in a circular motion on the tummy help a lot (try massaging first then putting the heating pad on your tummy or lower back). I find that for a few days to a week post obstruction I feel achy, crampy and still slightly blocked. I think... [ more ]
LoveLife Thank you again. I to love salads, but you are right, it is not worth it, not at all [ more ]
Spooky LoveLife, You can start back on solid foods - slowly - gauging by how you feel. As long as you are continuing to pass stool, you can start eating softer foods. I generally start with soup, yogurt, cottage cheese, apple sauce, scrambled eggs, etc, when I'm recovering from an obstruction. So you may be fine to go to the dinner depending on what is being served. Even pasta or lasagna might be okay, if you don't eat too much all at once. If you've been dilated before, you probably had/have a... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Car accident-- causing problems?
E EBeck82
BillV Your pouch should be OK since it is in a well-protected area. I was thrown from a horse and had a double spinal fracture, was hit by a car in a crosswalk and involved in a rear-end car collision. None of these accidents had any effect on my j-pouch. [ more ]
Scott F I agree with CT. While it may be an injury worth following up on, depending on the duration and severity, it's unlikely to have anything to do with your pouch. [ more ]
CTBarrister It's probably just seat belt injuries and soreness from that trauma, but you may want to call your primary care Doc and see if they want to do a CT scan or abdominal ultrasound, which I had done in the past for a suspected hernia in the aftermath of lifting a girlfriend and feeling pain in my abdomen and groin. Make sure you tell the radiologist you have a J Pouch. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hard lump (abscess?)
J j-poucher
j-poucher Thank you. Hopefully I can get some answers this week. I appreciate the feedback very much. [ more ]
Jan Dollar Could be, but it sounds like it is describing pouchitis, as mural thickening is the bowel wall. You should not feel it in your perineum. What you describe sounds different than what was seen in the prior CT. Jan [ more ]
j-poucher Thanks Jan, no fever but that is about the only symptom I have not experienced lately. I had a CT scan last month and I cut and pasted the Radiologist's comment below.... "A focal area of mural thickening and enhancement is demonstrated in the right lower quadrant, proximal to the remaining colon/tortuous pouch. Extensive postoperative change is seen. Findings are suggestive of a focal region of inflammation" . Does this make sense to you? If so, is this "inflammation" he refers to what I... [ more ]
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William J. Johnson
bjohnson@j-pouch.org

Bill Johnson founded the J-Pouch Group in 1997.

After a life long battle with Ulcerative colitis, Bill finally had his colon removed and was given an ostomy in 1993. A failed attempt for a j-pouch and then many surgeries to get back his health gave Bill the motivation to create a web site dedicated to giving support to patients who have had or are considering j-pouch surgery.

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